The Wrighty Way.......

Barry Norman

2012-01-15T22:49:00.001Z

Well its official I am not good at picking films!
This evening I thought it would be a good idea for Megan and I to go to the cinema! As Megan is officially a film addict and had seen most things on I was allowed to pick. Big mistake!
I should say last time we went to the cinema I picked and we ended up both crying as we went to see "One Day" where the woman gets killed at the end, just after she had found the love of her life! And this time I chose "The Iron Lady" which I thought would be a good one about Margaret Thatcher! How wrong was I! We had to walk out after 40 mins as I thought I was going to sob loudly! Now I should point out it wasnt her politics I felt like crying about but the film portrays her struggling to deal with the loss of Denis. It is constantly referring to this and she can see him and cant bare to remove his clothes from the house. Her pain at loosing him centres the whole story! It felt like someone was stabbing my chest. And so I did what I could do and suggested Meg and I left. I wasnt sure that the rest of the cinema needed to hear me crying and more importantly didnt want Meg to witness it.
So with the excuse of being tired we left. Megan has now decided that she will not be going to the cinema again with me unless she has watched a trailer first!
I think it hurt so much as I saw Margaret's daughters on at her to remove his clothes and her resistance to this and I could understand. Not that anyone has been on at me but I keep thinking of it and I have sorted out some of things. In fact I asked a good friend who is a wizz at curtain making to make me a couple of cushions out of Steves dressing gown. I know it might sound odd but Steve had a silk dressing gown which he had since he was 18 and he loved it! It was so old fashioned and paisley but he loved it! No matter what the weather he would wear it, strolling around the garden having a cigarette! His Mum even sent him money for Xmas a few years ago and put a note in saying buy yourself a new dressing gown! But he flatly refused.
As much as I wasnt the biggest fan of the dressing gown it was him! And every time I went to the bathroom it just starred at me! And it hurt to look at it, thinking it would never be used again! So I asked my friend and she made me 2 small cushions and I have put one away for Victoria and the other is on my chair in my bedroom. However as for the rest of the things, well they made it only as far as the guest bedroom. I will probably do something this year but I had not thought about it. Until that is I saw this damn film tonight!
I was only thinking last night about how I had missed the 10th of the month! I obviously didnt miss the 10th but didnt think of the significance of it. In fact I even was okay on the 9th which is normally my nightmare day! And I was okay! Not just okay but good. Life has been busy with work and all things are going well. The xmas break was bearable and Im determined that 2012 is going to be a good year! A year about making things happen and lots of fun and adventure!
Tonight proved to me Im still very sensitive to things and it doesnt take much for the sad feelings to come back with force.
So from now on Megan will be choosing the films! Hmmm lots of flick chicks for me I think!

Winning

2011-12-21T23:16:00.000Z

Today I got an amazing Xmas present...... And I think Steve you were part of it. No I’m sure you were!

Today I found out we won a big no huge deal at work! To some this may seem an odd present but I’ve been so focussed on it for the past few months, the thing that’s been keeping me going. And today we found out we had won!
Some parts of life are about choices, choices we make on a daily basis - to get out of bed smiling or not! To keep moving forward or to give up! Most of us have choices like this.
This year it would have been easy to have given up. Given up on life. To stop living and just let the world carry on. But I didn’t.
Not that their weren’t days when I could have quite easily given up on the whole bloody world but how could I when I had Steve in my ear! Telling me to get on with it. Pull yourself together woman!

If Steve could do this when he was ill, then in health how could I do anything less!

I text some close friends tonight to share the news.
The one person I wanted to tell I did tell but had to walk to the cemetery to tell. I placed a single rose and a very big kiss on Steve’s headstone, as I know he would have been so proud of me. One of my friends said something so true. Steve was proud of me full stop. Deal or no Deal he was proud of me! And you know what how right he was. Steve was proud of me and to have that feeling in your heart keeps you going.

I’m fighting so very hard not to feel sad. Which I know is silly given I’ve had brilliant news but like before the highest points also can be the lowest but I keep repeating the phrase.

"Tomorrow I will be Sad.... Today I will be Glad."

That is so true. Today is about being Glad. Glad for making it through a year which would have been so easy to have given up on but instead leaving the year feeling so proud of mine and the kid’s achievements.

So cheers Mr Wright!! This one is definitely for you..................

Christmas with the Wrights

2011-12-11T20:56:00.002Z

Today we had Christmas early.......

The Wright family all came together at our house but I suppose its not our house anymore is it? You missed it but gosh you were here in spirit.
So as your parents were over we thought we would all come together and celebrate Christmas.
The full works Turkey, crackers and we even used the dinning room. The room I haven't used since you left us. And we even lit a fire.
The house was buzzing, full life. It felt exactly like the times when we had people over and I kept walking into the kitchen, expecting to see you. All through dinner I kept looking down as I could feel you reaching over to give me a touch of your hand brushing my knee, telling me I had done a good job.
I missed you today and I know I wasn't the only one. Your parents, Aunt, Uncle, Sister, Nephew, Niece and of course our girls. All of us didn't say anything but I know it just felt wrong, it was all to close to how it would have been if you were here. . We made a great team! You were always such an amazing host, making sure everyone was happy and I love to entertain. It really hit me this morning, when I went to extend the dinning room table. I had no idea how to do it! Well why would I! I never did, you did. Not that I thought it would be hard to work out! Gosh how wrong I was! I had no idea, luckily a friend and her husband arrived just at the right time!

But its the small things that make me realise I'm living in a house where I've still to discover new things that you always took care of!

But I'm feeling stronger. I'm taking big strides and laughing and going out more and more, which most of the time feels good but days like today make me realise how good we were together. Our girls were brilliant, it was like they knew we had to pull together as you weren't here. I feel so lucky and proud to have such 2 amazing children. And we are here for each other.

Back on Track

2011-11-17T21:30:00.000Z

Well last week was a write off! You will have seen on the blog I was suffering, not coping well. Couldn't see anything but my grief. Well I'm pleased to say normal state has resumed. Not that normal state is all smiles but it is at least more smiles than tears.

And this week I truly have something to smile about! I'm getting a new car! I know what has happened to me! I've become the woman equivalent of Jeremy Clarkson! Now that is surely a blue job! But no I've been searching auto trader so much it is the default web address that comes up when I open up the lap top!
Worried.com

And where would I be without my resident expert Nick. Nick has had to put up with me changing my mind, then changing it again! I've gone from a 4x4 to a 2 seater, to a convertible and back again! Oh and at one point was even thinking about getting 2 cars. Until Nick pointed out that as I am the only one who can drive in my house and I'm not into blue jobs then 1 car was more than enough! Good Point!!! So with Nick having the patience of a saint I was able to confidently buy a new car. Its scary doing things on your own and I'm so very lucky to have great friends who help me.

And so with a resumed smile I deal with moving forward. And forward it has to be as I and the kids don't have a choice. Do we?
Its been a year and in that year we have taken steps and I no longer get angry or upset about the small things. Life doesn't worry me as it use to. I've seen the worst it can be and now I look at things totally different.

Feeling sorry for the person who beeps me because I'm not going fast enough on the motorway. (Not for much longer with my new car!) What must be going on in their life that they are so angry with me, someone they don't even know. Or the person who is impatient in the supermarket queue. What can be so awful that makes them so stressed.

With Vixs birthday coming, her 2nd one since she lost her wonderful Dad I think instead that if she can still smile and not hate life then we all can.

Oh...............

2011-11-10T23:53:00.000Z

Crap.............

Why?

Why?

Come on someone tell me, make sense of this shit....................

Why aren’t you here

Why

I miss you, we all miss you. We weren’t destined to be sat in the Sun pub tonight taking part in a bloody pub quiz!
But we were! And like your fight against cancer we didn’t win! We came a crap 3rd but bloody hell the sprit was there. Wrightys Warriors were fighting or simply battling against the ridicoiulus questions and other teams but for you. And yes of course Fraser knew the Scottish questions and Adam and Helen the animal questions but we were never going to win because quite frankly we shouldn’t have been there. We should have been at our homes, with our loved ones but instead we were remembering the worst bloody day!
And you brought a smile to our face as we tried to look for the answers! Shame Megs Blackberry wasn’t quick enough! And we don’t know each other because of our passion for mastermind! Oh and I need to add not one bloody sport question! Because if there had of been we would have romped home!
Coming home it still takes my breath away that you are not here! I miss you so very much. I shouted
to anyone who would listen tonight. I miss you I miss you!!!!!

x x x xx x

You’re a live – live it

2011-11-09T00:58:00.000Z

Breath, move and your still here, so if that’s the case then why stop now!

Look I’ve told you I’m not good on the 9th and lets be honest their never is going to be a worse 9th then the 9th November 2011! That truly is the last day that I slept next to you. Kissed you goodnight for the very, very last time!

And now well I found, myself in London with the choice of going back home alone or going for tequila or two!

Well having found myself in the oddest of bars drinking and singing to the most ridiculous karaoke it almost seemed right!!

Until I left. And I met Stephen, Steve the guy who is 41 years of age who lives under the cover of the arches. He was asking for a £1. A £1 what is that going to do with his life! I asked him his name and as soon as he said my name is Stephen, then quite frankly it was game over!! How could I leave him without everything that was in my purse.

My message to him was simple! Do something different with your life tomorrow. Tomorrow is the 10th November and you need to do something different! Tomorrow Steve would have been dead 1 year and you will still be alive! Tomorrow Stephen, my Steve will have been dead for a year! He won’t see his daughter turn 12 he won’t see Meg turn 15, he won’t be here with me celebrating Xmas.! None of it!!

Instead Stephen do something different with your life. Take the money I’ve jus given you! Which I know is more than I should be giving you but take that money and do something different with your life! Do it!
What ever it is, for my Stephens sake please do something with your life because he isn’t here anymore.
I’m not preaching at you! Just do something which symbolises that you’re alive!
And as I write this I find myself more train buddies, People who have been out on a Wednesday night who see this mad woman writing frantically typing on her lap top! Who make the massive mistake of asking me what I’m writing about and in that moment I discover the lady next to me is struggling to cope with her dad being diagnosed with Kidney Caner and the man opposite me trying to think of how he is going to support his best friend whose Dad has just died today of Cancer and then I realise it is all around.

So to my Steve I love you now and forever and to the Stephen who has my £30 under the arches have a bloody good day/night!!!!

Life.....And people

2011-11-02T23:34:00.000Z

Nothing as queer as folk!
Having been up to London for dinner with some work colleagues I find myself on a packed train, sat opposite a young guy and next to a wealthy elderly couple. The young guy clearly wants to chat and so does the elderly lady. She is blind and the young guy is in the RAF. The train journey is spent listening and commenting occasionally on the worlds of these 2 very different people lives. The young guy retelling stories of life in the military and the lady of her family and life style in the country. I listened and talked occasionally not about my life or the up coming anniversary of Steve's death but instead about "leaves on the line" and the difficulty of military life and the impact it haves on spending time with the ones you love. It felt at times like I was part of the situation but not quite. It was an act. Almost like watching a play. An insight into 2 very different worlds both with their joy and troubles but simply watching and commentating.
Once at Woking I parted from my train buddies and found myself thrown into a totally different world. The world of the "mad" taxi driver. He too wanted to chat and he wanted to tell me all about his awful girl friend and how he has given up on woman. "Im too nice, treat them mean and keep them keen is my new moto!" he recounted over the loud Indian music. When I asked him why he simply said woman don't like nice guys. Woman want men who dont buy them flowers, who turn up late and who simply arent available.
I laughed and said he clearly hadn't met the right person. In which he replied I bet your husband doesn't treat you well. I bet he doesnt buy you flowers. And I simply said. My husband was never late, often bought me flowers and certainly was never ever mean to me. And over the music he didnt hear the past tense and so as I paid my fare he said.
Well you never know what happens in life, if your husband stops doing any of those things then you know where I am......
Dont worry though even though Steve has of course stopped doing all of those things I dont see myself running off with the mad taxi driver just yet.
x x x xx

Good News But....................

2011-10-06T20:43:00.000+01:00

Well I had good news today but I feel so sad. Not just sad but very low.
I know why.
I know it is because Steve isnt here to share it with. He would be so happy, so very proud of me. And he isnt here to tell and I cant think of single person in the world that I want to share the news with.
Thats a very frightening thought. I want to celebrate with him. I want to talk for hours and hours about it with him.
I know what we would be doing tonight! We would be going out. Going out for a curry and a celebratory glass of wine but instead Im home in our beautiful home alone.
There are so many people I could call, so many people who I could ask to come over. Or I know I could drop into see so many people but I dont want to.
No one can replace you Steve.
I am trying to fight it but in fighting it, it makes it feel so much more real. How strange that such good news can make you feel so sad, so alone.
And in a strange way I dont want to talk to anyone. Just be alone with my thoughts and my glass of wine.
I even opened a really nice bottle of wine. Went to the wine rack that Steve and I built up with really special wine and thought sod it! I deserve a really good glass of wine! So I did! And I toasted Steve. Not just Steve but both of us. He would be so proud of me. He knew I wanted this for a very long time and it is suddenly becoming real and he isnt here to advise me or share in it!
By the wine rack is a box of champagne that Steve bought me when we went on a fantastic trip to the Champagne Region. I remember the weekend, it felt like at the time that I was living the dream! And that I was! Off we went for the weekend to France in Steves 911 Porsche and we drove around stopping at small Champagne vine yards, meeting the owners and sampling the champagne.
When we got home Steve gave me this wooden box and inside were 2 bottles of champagne but most importantly he wrote on the inside of the box " To my darling Sally. Thank you for a great trip! all my love Steve x x x May 08"
How thoughtful! He was known by his friends for being such a mans, man but to me he was so kind, so thoughtful and so very romantic! God how Im thankful for that! As sat here now feeling like my heart is breaking I can look at this gift and I couldnt give a damn whether it was champagne or ribena inside but its the words, the words that he took the trouble to write, to surprise me! He loved to do things that made me smile. And I miss him and the way he made me smile.
And he did this years before he was ill, so not knowing I would forever have this to look at and remember him by.

And I know I need to be strong and I brush it off and most days I do but Im so dreading my birthday. I dont want to celebrate without Steve. I just want the day to pass as quickly as possible but I know I then have our wedding aniversary to deal with 4 days later! And that day Im truly dreading. Our wedding day was so lovely but so very painful. Steve was so ill but so determined that we would have our day. Or in fact I know it was more about giving me the day. He wasnt well, he felt so poorly both physically and mentally but was so strong. He wanted to get married. I remember saying to him. We dont need to do this, we dont need to get married but he just said " Ishould have done this along time ago!"
I remember looking at him, thinking I love you so much and I know we wont have along time together but I know forever Ive finally met Mr (W)right.......
Even through everything he still smiled for the wedding photos and I treasure these. And as the day gets closer I just cant bear to think of being in our house. We were married at a local registrar office but went back to our house afterwards and celebrated. So being here on our wedding aniversary will just be painful,
So tonight I just have to accept that I will be sad and the next few weeks will be tough but I have my glass of wine and my SS (Sad Songs) CD which I havent played for a long time.
I love you Steve x x x x x x x

Charity Ball x x x

2011-09-25T21:09:00.000+01:00

Well I think I did you proud Mr Wright.
After hours of preening, all those things you loved, not! And a glass of champagne to steady my nerves
I went onto the stage at the start of the evening, introduced by James Whale himself. The ballroom at the hotel was packed with over 600 people and most importantly this included all of our friends and family, all there to support me and honour your memory. Ive pasted below my speech and you could of heard a pin drop when I delivered it. Or I should say my heart beating as it felt so fast and loud!!!! But I did it and Im so pleased that I could tell everyone there all about you.
And afterwards people were so lovely, strangers coming up to me saying that I was such a strong person but in fact you were the strong one. You were the one who never gave up, never made us feel guilty for being well.
You were determined that me and the girls would carry on living our lives. When you were here you pushed us all to get on with the everyday things, when I know all I wanted to do was make time stand still and spend every second with you but you always kept on at me to keep working, keep doing the everyday things as you knew I would need all these things when you weren't here but at the time I didnt want that, we use to argue about it! I would be upset as I thought you didnt want me around but in fact what you wanted to do was make sure I still had a life after you were gone! I couldn't see that at the time as all I wanted to do was spend time with you but now I understand. And the friends, work colleagues and family there last night made me realise how important it is to keep taking those steps forward and that they are all there helping me through. x x x xx

-------

Good Evening

This time last year Steve and I were here at the James Whale dinner and this evening instead of sitting where you are with my gorgeous husband I am stood here as a widow.

Ten months ago I lost the love of my life, my best friend to Kidney Cancer.

Steve Wright or Wrighty as he was known was not simply the statistic you read about in the newspapers he was my husband, an amazing Dad and many people here tonights best friend. He was 40 years old when he was diagnosed and only 41 when he died.

Steve had Cancer! Cancer – people survive cancer and as Steve was a “winner” in everything he put his mind too, he was confident he could beat this too. He was after all Mr Wright………

Steve always lived his life to the full, he spent far too much time playing cricket, golf, football and in fact any competitive sport he could!
Steve had a wicked sense of humour I remember one such occasion when he thought it would be really funny to come and support me on training bike ride, as I was training for the London to Paris bike ride in aid of James Whale Fund
68 miles into a 75 mile ride, battling endless hills and the rain!
Steve appeared in his 911 hooting his horn and shouting “come on woman whats kept you Im hungry and need my dinner!” then proceeded to drive off at speed!!!
Or the time when he was in hospital in the high dependency unit and honestly in all seriousness asked the Doctor what his chances were of being out of hospital by Sunday as his mate had got him tickets to see England at the oval, on the final day of the ashes. I don’t think I will ever forget the doctors face.

That cheeky smile always present even though he knew he was fighting a disease which would eventually kill him.
Well Kidney Cancer is a killer and in the case of Steve and I a cancer we had never heard of. So when Steve and I were coming to the end of a 2 year building project on our new house and he became tired and lost weight we simply put it down to the fact he was working all day and working every evening on the house. Steve had no other symptoms then this.
Steve being the mans/man he was didn’t go to the doctor! “What are they going to do!” I just need to eat more and sleep more! Was his constant reply when I “nagged” him or reminded him as I like to put it!
2 weeks after we moved into our new house in May 2009 Steve was diagnosed with Kidney Cancer with secondary’s to his lungs.

I remember clearly Steve’s reaction when he was told he called it a nuisance but at least the Ashes and Open are on.
Steve had his Kidney removed along with the 9cm tumour in June.
Cancer or no Cancer Steve didn’t give up! He concentrated on living his life and letting me who he named Dr Hewitty to sort out “the medical side of things!” He didn’t want to see nurses or doctors! All he wanted to do was go about things as he always had done.

I could spend hours and hours listing things he did but don’t worry I wont!
I often would ask Steve “What do you want to do!” We can do anything, go anywhere. And he simply said I love my life. Ive had a great life and all I want to do is carry on doing the same things. Which is exactly what we did? Well that was in between the 24 CT scans, multiple weeks in hospital and too many doctors appts to count.

Im going to now read you a extract from a blog I’ve been writing since the day Steve was diagnosed.
The WRIGHTYWAY
August 29th 2009 – St Barts Hospital - London
Steve has now had 7 Doeses of the Interlukin and every dose seems to have worse side effects on him and all of them seem to be lasting longer! The shaking, sickness and high fever are really awful to see as a bystander who feels helpless Sickness, Diarrhoea, Sharp Pains in all joints, High Fever of 40, Swollen mouth, Pain all over his body, Shakes all over the body for 35 minutes each time, Dangerously low blood pressure and not one moan from Mr Wright!!!

24th December - Xmas Eve 2009
We arrived at St Barts to be immediately seen by Dr Tom Powles . Tom got straight to the point and told us that it wasn’t good news. Tom himself looked really sad and disappointed whilst he was telling us.
Steve was brilliant and I was CRAP! I couldn’t keep it together. I hadn’t for one moment thought the news would be this bad. I knew that the cancer wouldn’t have all gone but I didn’t think he would tell us that it was worse! I cried and Im so sorry I did I just couldn’t stop it. Steve asked all of the right questions. I so wanted to be stronger and support Steve rather than the other way round!

Tom did remind us that HD IL2 was always going to be a long shot and in fact he likened it to trying to win the Champions League! And said Steve had got to the Semi Finals!
Semi Finals does he not know that Wrighty is a Winner! We dont do coming 2nd, as Steve has been heard say before their is no prize for 2nd place!
So with this awful news how do you go forward and host Xmas for 12 relatives and 2 children who are looking forward to opening lots of presents!
Well you do it in the only way that Wrighty would! With a smile and a focussed approach! Their were too many things to be done to speak or dwell for too long on the news.

After several other unsuccessful treatments in November 2010 only 1 week after we were married Steve went into Woking hospice and spent the last 3 weeks of his life there. And even then he kept everyone on their toes. Well he was again after all Mr Wright and even at the end of his life he knew exactly what he did and didn’t want.

Since loosing Steve my life has felt at times very empty, my heart hurts and even now I keep thinking he is going to come home! I want to share my news with him, the kids want him supporting them at school and sports events but he isn’t coming back. And that is a fact we all struggle to live with each day.

I know we wouldn’t have been able to carry on without my amazing friends, work colleagues and my family all of which Im so proud to say are here tonight.

So my message to everyone here is if you only take 1 thing away from my ramblings:

Women – Keep on nagging the men in your life to go to the doctors and Men – firstly do as your told and then women wouldn’t have to nag and most importantly to everyone go to the doctors straight away if you are feeling unwell. Remember Steve was tired and lost weight!

Oh and live your life as Steve did through this James Dean quote
“Dream as if you'll live forever. Live as if you'll die today,”

THANK YOU

Downton Abbey

2011-09-18T22:03:00.001+01:00

Damn you Downton Abbey!!!
I loved you, so did Steve. It was the one thing we just wouldn't miss and our mums loved it too!
Now I cant face to see the TV adverts, as they remind me of yours and mine Mum sat in the family room in the hospice watching it.

They shouldn't have been watching it there, your mum should have been in Spain and mine at home in Kent but instead they were in Woking hospice, sat on the big comfy arm chairs having just spent the day seeing you. Then going upstairs to sleep in the family rooms. Waiting for the dreaded knock on the door in the night, waiting and holding there breath willing and wishing you to be pain free and to make it through the night.

I suppose with my birthday and our wedding anniversary coming up and the anniversary of your death fast approaching then the feelings are flooding back.
I have the last birthday card you ever gave me next to my bed. "I love you Sally, your my rock" I miss you Steve you were my rock!

The 3 weeks you spent in the hospice felt like the longest 3 weeks of my life at the time and now I look back and I want that time back. I want every second back. I miss you, we all miss you.

It's the James Whale Kidney Cancer Ball next week and I'm speaking after dinner in your memory. Its been the hardest thing I've ever had to write. Harder then your funeral eulogy. I don't know why as I know what ever I say people will smile and say well done. Its not about that, its about the fact that I want to make you proud. I want people to realise that you were an amazing guy and that Kidney Cancer stole you from all of our lives and that it can happen to anyone. And I don't want anyone to go through the pain you did and the pain that me and the kids go through without you. It will also be painful as that was the last night we went out to last years dinner at the House of Lords and I will always remember you didn't really want to go but you knew I did and as ill as you were, you did it for me. Dressed so handsome in your dinner jacket and off we went to London. Looking back I cant believe that was the last time we went out together. How ironic and mostly how bloddy unfair!!!

Victoria started school last week. And you would have been there. Having a picture taken with her on her first day, like the one you had done on her first day of primary school. She is doing okay though, she is so strong, just like her Dad. And Megs well she misses you like crazy!
Our house is still quiet without you and time is not bloody helping! Oh and we have guests staying!!! Sammy the spider has moved in, with his younger brothers and his dad. Oh and not forgetting his distant cousin Morris the mouse! He is living in our or I should say your sweet cupboard as it will always be your sweet cupboard! Needless to say I am still a big wimp!! And so lucky for us we have Tulin who is still being the most amazing friend to all of us and is not afraid of the spiders or mouse!!! Not that she will be catching it and then putting dead by the front door as you did, just to see me scream and jump up in the air!!!

Well I will I'm sure do you proud next week and all of your friends are going to be there along with family and work colleagues and I will post on the here the amount we raise. And of course my tribute to you.

And as for Downton Abbey I've recorded it and I'm sure in the future I will be able to watch but not now.

New Home

2011-07-04T21:48:00.000+01:00

Today we all made the final part of Steves journey.

Steve now has a new home, he is now with his headstone in Chobham Cemetery.

Even reading this back Im not sure I even heard the words that the vicar spoke I was too busy squezzing Victoria and Megans hands.

It was a short but powerful service attended by Steve’s friends, Meg, Victoria, Louise, Steves sister and my Parents.

When the undertaker arrived to collect his ashes I sobbed. Sobbed because he was now truly leaving our house, not coming back. Now a new home for Steve.

I know he will always be around but this was final.

Deep down I know he left us 8 months ago but to see his name in a cemetery where as much as the headstone and words are beautiful and fitting of the man he was, it just didn’t seem right nor fair! Surely it cant be Steve in a cemetery, surely we are all going to wake up soon and realise this is all a bad dream.

Im frightened. Scared as I felt I was coping, well more than that I was beginning to laugh and be more of my old self. I so don’t want for myself nor the kids to go backwards. We need to move forward and I know we will but these damn hurdles are hard work and painful!

So maybe now Steve has a new home I can finally cancel the Sky Sports. Im sure that where Steve is now that they will be showing all the sports he can possibly watch!

Well an early night for me and heres hoping I feel stronger tomorrow.

And as the final line of the headstone says
"If love could have kept you here, you would never have gone."

Life is for the Living

2011-06-20T22:58:00.000+01:00

Dear Steve
Something you believed in so much but who would have thought it would mean so much. Its awfully frightening for us left behind, as we don't want to keep going. We want things just as they were when you were here.
Fathers day was a day looming up on us all! Every advert hurting us all! Didn't realise how many times it was constantly referred to on the radio and the tv.
Victoria and Megan spent the day together, helping each other through a day which should have been spent with you.
Instead you would be pleased to know they spent doing what they love to do! Which is hours shopping in Primark!!!
Not ignoring the fact you werent here but instead comforting each other and chatting about you, you will always be a huge part of our lives.
Megs is missing you so much at athletics, she misses your coaching and amazing support and Victoria found out she will be in China house at her new school, which she screamed about!
But life is for the living and Im trying I went out on Friday to Ascot and all I could do was think you would have been here. You loved the races! Not for the horses so much but more for the ladies in thier fancy dresses! And I think I would have done you proud! The girl scrubbed up well!! And depsite the rain really enjoyed myself. Felt strange laughing, talking to strangers who didnt know about you. So much so I found telling every man I spoke to about you. Which always brought the conversation down to a sad place, not that was my intention but more it was about being loyal to you. But in a very strange way I did enjoy myself. I found myself laughing. Laughing out loud about absolutely rubbish things! All those things I hated only a few months ago! Random silly pointless conversations! I wasnt only listening to them but was taking part in them! How strange life is!
So have sort of decided that all those shoes in America probably need an outing at some point, so who knows may go out again in the not too distant future.
Darling I love you very much and your always going to be a huge part of my life.

x x x x x x

Time of the Month

2011-05-09T21:50:00.000+01:00

The 9th of the month is my time of the month! Watch out people I'm not good company on the 9th or the 10th of the month. Because I don't want to talk to other people I just want to talk to you Steve.

I miss you Steve, why aren't you here.
Why aren't you seeing the things I am. Why aren't we planning for trips away. Why aren't you here to make me laugh. Why am I feeling all of this pain. 6 months without you and it still hurts so much.

You missed Megan at her first athletics match of the season today and she didn't want to do it without you there, cheering and coaching her on like you did every time. Victoria has her SATS this week and she wants to tell you Steve how she got on.

What has happened to this world when someone who saw the good in everyone isn't here anymore. How is this possible.

I was gardening this evening and couldn't find my gloves, so I used yours. I could feel your hands in them. We always held hands, even when we went to sleep at night and even now I still say good night to you. Can you hear me?

The robin is here all of the time and Im sure its you, checking on your garden.
Andy fed and treated the grass last week and he said the robin was watching him the whole time.

6 months it should be feeling easier and most of the time it is but at this time of the month I feel overwhelmed with grief. Like I just cant believe that another month has gone by and your not coming back. Not going to walk through the front door again not going to tell me that "Ill be the judge of that!" and most of all not giving me a huge hug and tell me to "break it down!" And if I cant work out how a way to fix things then to not worry about them!

I still haven't moved anything your clothes still in the wardrobe I feel like I should be doing it but I cant. Your voice still on the answer machine I secretly keep thinking your going to come back and need them! But your not are you? Im not going to see you again am I?

I love you Steve and I know if love could have kept you here then you would never have gone. x x

Good Cause - Gordons School Ball in aid of Woking Hospice

2011-05-08T21:09:00.009+01:00

On Friday night I spoke after dinner at the Gordons School Ball. They asked me to speak as they were raising money for Woking Hospice and they asked whether I would give a personal insight into the great work they do.

Here are my words:

6 months ago I lost the love of my life. Steve was only 40 when he was diagnosed with Kidney Cancer and devastatingly lost his battle only 18 months later.

We like many people thought we knew what a hospice was, we immediately thought of this terribly sad place where quite frankly people went to spend their last days.
How wrong we were. The hospice is so much more than that.
Within weeks of Steve’s diagnosis we met the most wonderful woman. Jane Howard who is a community nurse for the hospice came to see Steve and I. She is a no nonsense woman with the biggest heart of anyone I have ever met.
I always remember that first meeting. And to be honest Steve was not looking forward to the meeting and as he described it “I don’t want any bothers coming to see and talk to me about what I can and cant do now that I have cancer!” How wrong he was! She quickly made it clear that she was there to support Steve in any way he needed help and certainly not to interfere or stop him living his life! And having grown up with 3 brothers and married to a fire man she knew that fussing was not what Steve wanted!
When you have a terminal illness life has to be about quality and that is what Woking Hospice is all about. Ensuring that everyone from the patient, to immediate family and friends are treated and cared for as individuals. And most importantly able to be the person you want to be without pain. I call them the pain experts! No one should be in pain.
As Steve illness progressed! Jane played more of a role. Often in the background and mostly directly with me and our GP, the hospice found a way to support Steve without him feeling like a patient. And a way that he felt in control of his life.
Steve treated his cancer as a nuisance, he was after all 40 years of age but not one that was going to stop him living his life to the full! So Jane and the Hospice team got use to Steve, knowing him well enough to know he wasn’t going to be stopped from playing golf, cricket or cheering Megan on at Gordon’s sporting events. They knew Steve going to challenge them and challenge them he did! Well after all he was Mr Wright!
Sadly 1 week after Steve and I were married in October 2010, things took a turn for the worse for Steve he no longer had any appetite and he was having trouble walking. By this time the cancer had spread. It was at this time that Jane suggested that Steve should come into the hospice for some support.
This was to be Steve’s home for the last 3 weeks of his life. But it wasn’t just Steve’s home; it became the centre of everything. I moved into the hospice with Steve, the staff set up an attachment to his bed so that we could have a double bed; they even went so far as to put chocolates on the pillow and call it the honeymoon suite! Steve parents moved in upstairs in the dedicated family unit, where they had their own room, bathroom and kitchen. The day room in the hospice turned into the social gathering, with Steve holding court as he always did! Victoria Steve’s daughter aged 10 commented on the fact that they even had a kids room!
Nothing fazed the hospice team! I remember one of the first evenings secretly our friends bought in a bottle of wine! But we didn’t have a corkscrew! A nurse walked past and saw and said no problem I think we have one in the nurses station! So after that the wine arrived on a nightly basis and was kept in the ice machine!
Pizzas were delivered, curry was brought in, no visiting times, no strict rules of who can and cant come! Everyone and everything is welcome.
This time was tough for us all but Steve felt safe, he wanted to be there. It allowed me to spend real quality time with Steve. I could stop being Steve’s carer and instead be Steve’s wife.
On the 10th November Steve passed away peacefully, out of pain and with his family by his side. The hospice allowed all of this to be possible. Steve’s wishes were honoured right to the end.
I continue to have support from the hospice through their bereavement support and in turn I and Steve’s friends have organised several charity events for them.
So simply when the GSA were asking for nominations of charities for this event their wasn’t anyone else that I believed deserved the money more than Woking Hospice.

I kept putting off writing this, as I knew it would take me back to a places I hadn't thought about for a while. Not that I don't think every day, well every hour about Steve but not in detail at about what he went through and the way the hospice helped.

It was well received and we raised over £11,000 which is an amazing amount of money and will make a big impact for the hospice as they depend totally on donations.

Wish You Were Here

2011-04-24T22:36:00.000+01:00

We had a wonderful holiday, lots of fun, laughter and amazing sunny weather. It was lovely to spend time with Megan, it feels ages since I laughed with her! We went and did what girls did best and did lots of shopping!!!!
Coming home was tough. Coming home from a 2 week holiday is always hard but for me all I wanted to do was share all my stories with Steve. And coming through the door here, was like coming back from the hospice the first time. Almost as though I had forgotten he wasn't going to be there.
Steve had such a way about him, that when ever I came home, even from a day at work, he always made such fuss. He would always stop what ever he was doing and come and find me and give me a huge hug. So to come home, with so many stories and find he wasn't here, hurt. It hurt like the first morning I woke up here after he died, knowing he wasnt going to tell me he missed, knowing he wasnt going to be giving me a big hug.
The sad feelings I had frightened me. I knew and had prepared myself that I would be sad on holiday but I just hadnt thought about how I would feel back in our beautiful home. I suppose its normal but I really felt like I was on a good path before I went away and was able to keep myself busy and deal with my emotions and the weekend I came back I was just so sad. I have such a strong pull to our house. I feel closest to Steve when Im here. I can look at all of the things we created together. Our house was a 2 year project. We remodelled the whole house and added a 2 storey extension off the side. There isnt a room that is the same. We finally moved in, after 2 years of hard work, to live here for 1 month before Steve was diagnosed with cancer! How can that be! How is that possible. Steve and I never got to live in this house and just enjoy it, for what it is. Instead Steve was battling cancer and I was doing my best to support him. But even though this was the case, Steve still carried on regardless. How does someone do that? How is it possible when you are fighting such a terrible disease that you have the strength to cope with the every day things. I have been thinking lately about whether I told Steve enough how well he was doing. I suppose I was always looking out for bad things, so I could get him the right medication that I didn't stop to praise him.
Looking back it amazes me his strength. His strength to carry on with the every day things. Which is why Im trying to be that too.
I have been busy this week with work and charity meetings. I met with Woking Hospice and James Whale Kidney Fund both meetings about charity balls. Ive been involved in both of them and it feels a positive thing to be doing.

The Kidney Cancer Ball with be in London on the 24th September. Here is a link
http://www.jameswhalefund.org/page_753.html
It promises to be a good night and it goes without saying an amazing cause.
Each table holds 10 people and Im trying to organise for as many people to attend as possible.
If you would like to come and dont want to book a table, then let me know as I can sort out numbers etc.

Ive been asked to speak at both of them, to share with the people in the room Steves story. It will be tough and havent started writing anything yet but I will do and Im determined to do Steve proud. Maybe I will take some extracts from here.

Happy Easter x

Far Away but always Near

2011-04-10T14:25:00.000+01:00

Well we are in Florida at the moment sort of escaping the world! Not quite more of a time to relax and enjoy spending time with the kids. We have had a lovely time, it's amazing what a difference the sun makes!
But Steve is not here, well not in body anyway but can feel him in spirit. I find myself at times looking around for him, as if he has gone off for a walk. I look at people at families and think we would be doing that. I look at situations and think Steve would have made a comment about that. He had this way of making us all laugh out of the smallest of things.
It's unreal really that I won't see him again. I'm starting to have more dreams and images of him and quite frankly he was gorgeous!!!! I know I'm biased and this might sound strange but I find myself looking at other men and thinking nope, nope your not as lovely as Steve not that Im looking in that way but I just keep thinking about how much I loved Steve for all the things both physically and mentally and the thought always ends up with the simple phrase "I miss you Steve!"
I've certainly been getting my retail fix, 8 new pairs of shoes and 4 dresses later have had to buy a new suitcase! Now that's something Mr Wright would not be approving of! Saying that he loved his shoes, never met a man before who had more shoes than me! Think we might be even now though!
It's 5 months today since Steve passed! 5 months sounds so long, it's nearly half a year! So many things have happened and Steve hasn't seen them, he knows about them though I know he does he is with us through every step I just wish he was physically here!
Again it comes back to "I miss you Steve"

Milestones

2011-03-09T21:46:00.002Z

Days, weeks and moments are what life is about.

So with Friday being Steve's birthday we all knew and expected the day to be tough. But because of his friends and the support of family, the day was about celebration that he had been in all of our lives.

The lads were first class! 30 of them from all parts of Steve's life came together to play a round of golf, in Steve's memory and to raise money for James Whale Kidney Cancer Fund and Woking Hospice! And wow didn't they do well! £1000!! Mostly made up from fines...... Yes there were fines for wearing the wrong hat, looking too old, looking too young, playing badly and even the winners donated their winnings to the pot!

The first winner of what will now be an annual golf day was Daryl Bell or as he is known Belly! Daryl will have his name engraved on the cup which I know was an emotional thing for him. I suppose like the rest of us cant believe that Wrighty wasn't there and instead a cup with his name on it.

It was an emotional day but one which was carried along by alot of laughter and the most beautiful blue sky and sunshine. The girls and I went around in the golf buggy, which itself was an experience! Victoria in charge of taking pictures and Megan in charge of driving! We were soon nicknamed Wrightys Angels! And I suppose that's what we are and will always be.
The one thought that I just couldn't shake was that Steve would have loved the day and whilst that is a positive thing, it still hurt. Knowing he would have been 100% there, in with the lads enjoying the day and determined to win, as his friends were. I struggle with that thought. It was to me so obvious that there was simply one person missing! The person that all of these people had come from many miles to remember and remembered he was and in the best way, in a fun environment on his birthday.
Birthdays are a special day, they are the day we enter the world and for me, this is so much more important than the day he left this world but subconsciously I'm still drawn to the 10th of the month. The day that Steve left us. So tomorrow it will be 4 months and I have to say the last month Ive been much better about getting on with things.
The money we raised at the golf day and subsequent days will be split 50/50 between the James Whale Fund (JWF) and Woking Hospice.

Both amazing causes and Ive now been asked to speak at a Woking Hospice ball and JWF ball. I will be putting on here the dates and encouraging people to attend. They will both be great evenings and for great causes.
One of our friends is also doing a very brave thing and running the London Marathon. He is doing this in aid of Woking Hospice and if you can please spare a minute to look at this link www.justgiving.com/Steve-Hobbs and any spare pennies you have donate.

Ive started to find a new way of being, a way of being without Steve but with him still in my thoughts and I can feel him around in all that I do. The robin still visits me and seems to be there just when I need him to be.
Work has kept me busy as has the burst of spring like weather! Its almost as though the garden has woken up! And is calling me, to take and look after it.
Now as you may remember my skills were limited to weeding and watering! And on Sunday I suddenly found myself looking at the lawn, which I had been informed MUST be cut! Cut don't these people know that this was not in my job description. That was Steve's lawn I am not joking when I say I was barely allowed to walk on it, let alone cut it!
But after a quick lesson on how to cut a lawn, apparently its not like hoovering! So no backwards and forwards movements! And a quick weed picking exercise I was let loose on mowing! And of course with the added challenge of ensuring the lawn had lines cut into it! Now I should say I cant even draw a straight line with a ruler, let alone with this foreign heavy object of a lawn mower! But off I went slowly, apparently a must when doing the first cut of the season! Gosh I'm even starting to sound like a "Pro!" And after far too many attempts at trying to empty the grass catching thingy. I finished.
I did only manage to use the 1 lawn mower and not the other monster in the garage that your supposed to use but I'm sure like most of these things that will come in time!
Steve's friend Nick even commented when he left that this was now a pink job! And next week he would be teaching me car mechanics!!
But like most things I'm now faced with I did and I even managed to do it with a smile, thinking and hoping that Steve would be proud. Proud that forever he will live on and I will keep doing my best for our family, friends and of course the lawn!!!!!!

Another Sunday....

2011-02-14T00:05:00.002Z

Weekends are always difficult and particularly Sundays.
Sunday is about families.
Sunday is the day when you "hang out" do the things that need to be done around the house. The day when I loved cooking a Sunday Roast! Steve always said that it was so lovely that no matter what we were doing I always cooked a Sunday roast! And I loved it. There is something about a roast dinner and the whole family sitting around to eat it.
But since Steve has gone I just cant bring myself to cook a roast and I dread Sundays coming.
So many things I cant face doing.
Silly things such as changing our sky package.
A strange thing but Steve being the sports fan he was, always had the full sports package on our Sky. But I not being a sports fan or in fact someone who watches much TV I find myself paying for the full package. Only a small thing but I just cant bring myself to cancel it. Its almost as though cancelling it, is like admitting that Steve wont be back to watch the cricket or football. Also the thought of cancelling or changing anything such as our answer machine is just too tough at the moment.
Steves voice still booms out whenever we cant get to the phone and at this time I just cant get take it off (even on here I cant write the word delete!) and I know to the outside world is seems mad! But I remember the "discussion!" we had about changing his once single mans message to a couple "Steve and Sally" message and it means so much to hear his voice saying our names. I have lots of videos of him and so can hear his voice when ever I want but this message is the gate way to our house, its our number, is our message to our house which we built and created together, which I now find myself living in on my own.
And quite frankly it stinks!
I want him back, what is so bad about that! I want him here. I dont want to be on my own with the kids! I want to share Sundays with him. I want to be cooking roast dinner. I want to be "hanging out!" in our house, which will be forever our house, with or without the Sports channel on Sky!
As a good friend of Steves said to me this weekend.
"Steve loved you very much and he wanted you to be happy every day of your life and try to find a way through the fog."
And I of course will continue to find myself through this fog but I suppose I just have to accept that Sundays will be hard. But Steve would be wanting me to get on and get on I am trying to do but getting on is easier said then done, when you have lost the love of your life.
x x x x x

3 months

2011-02-09T19:29:00.000Z

Dear Steve
Today 3 months ago was the last time I got to share a bed with you and cuddle up close at night. The last time I could wake up in the morning and see you lying next to me. And I miss you. You always had such a way to make me smile. I remember the last thing you said to me, in fact the last thing you said to anyone. You looked at me 2 days before you died and said "I love You" not promted as a reply to me saying I love you, as I always did but just out of the blue. You then pursed your lips so I could kiss you. I will never forget that moment, so many moments I wont forget.
I miss your voice. I miss your lips.
As the days have gone on and I find myself faced with life without you, it hurts more and more. I dont know why but I thought time would slowly heal things but at the moment it just makes things more painful. People mean well, when they ask me how I am but Im lost for words, so I continue to say up and down, which close friends know mean "Im shit but thanks for asking!"
Also I cant stand listening to people out and about who dont know about you, so much so that Ive turned into wearing my head phones, who would have thought I would listen to my Ipod in the doctors surgery just to block out the sound of 2 woman chatting endlessly about their lives! What I wanted to say was Shut Up! Dont you know I will never see Steve again! I will never hear his voice, never feel his hand on my shoulder but instead thankfully for them and me I simply put my headphones in!
Ive been working hard though, trying my best to take small steps back on a path without you.

Finally the gates your ordered in September arrived on Tuesday and they are beautiful! I know you would have loved them, they are so you! So beautifully hand crafted and just as you wanted them. Thankfully Bruce came over, as I had no idea what to ask or to look for.
And the bathroom, well as we planned Allan has been refurbishing the bathroom. But I have to admit I have deviated somewhat from the plan!!! Not in the design but the tiles. I know you would love them but Im not so sure you would love the price! The tiles that is, not Allan as he is amazing! I did try and do what you would have done and even went back to the tile warehouse where we bought all of the tiles in the rest of the house from but it was so painful! Looking around, not really knowing what I was looking at nor being able to stand walking around the same place we had spent many weekends looking and comparing tiles! I just felt such a fake walking around, you remember all I did was look for pretty things not looking at the practical ones as you put it! Well left to my own I was worse, not having a clue what I was looking for. All I knew was I wanted them to be perfect and most of all I wanted you to be there with me. So I took the wimps way out and fell in love with some hand crafted tiles from Fired Earth!! I know budget blowing but beautiful!
Well the bathroom is nearly finished and I think you would be proud of it. As you would be proud of how your friends have been taking care of me and the girls. Many faces not waiting to be asked but popping over and helping out, as I know you would have done for them.
I found my birthday card that you wrote me, the last one you gave me and you talk about how much you love me and me being your rock! But you were my rock and without my rock, life is very hard.
I miss you terribly and still dread going to bed at night, as sleeping is still not forth coming! Maybe its because your not snoring next to me!
I love you Steve and will always love you. And am so proud of the person you were and how throughout all of the illness you were so strong and that makes me determined to get through each day, as I know you would want me to.
Love
Hewitty x x x

Lavender.....

2011-01-16T01:49:00.001Z

"Up and Down like Tower Bridge!"

This is the phrase that my beloved Grandad Sid used, when ever I asked him how he was. And I find myself using this very phrase whenever anyone asks me how I am.

I read today an article written in the Guardian, which describes exactly where I am. It was written by Claire Melhado as she describes herself after loosing her husband.

WHAT I'M REALLY THINKING

Please don't look the other way when you see me in the supermarket and you're pushing you trolley laden for two. Don't be embarrassed if you ask me how I am I'll say I'm fine, a bit up and down, good days, bad days and I wont mention the sleepless nights, the anger and the loneliness.
I wont tell you I'm jealous that you've got someone to go home to and chat with about your day, to read bits of the newspaper and share the jokes. Just don't tell me I should take a holiday or keep myself busy or that Ill get over it.
Please mention his name and share your memories of him. Please don't say if there's anything you can do just ask. I wont ask because I cant find the words and I don't want to be a burden. Just come round and help me mow the lawn or fix that broken curtain rail. Please feel free to ring me and ask me if I'd like to go out somewhere - to the pub, for a coffee or a meal. I promise I wont mention the days when I sit in the chair and stare into space. I wont flirt with your husband and if I laugh don't think its inappropriate or I don't care. I have to go back to the empty house where the dust gathers and the dishes stack up, to the reality of a life on my own, so allow me a brief respite.
Please just treat me as you used to but just remember I'm fragile. My life has changed but I'm still the same person. I'm just a bit rudderless and Ive lost my anchor. I don't want to loose you too.

The words of this article sum up better than I can, the way I feel. Whilst I plod through this new path I find myself presented with new challenges. Challenges that previously I would have taken on and squared up to! I now find myself frightened! Not by the situation but more by how I will react.
This week I dealt with my car braking down, whilst in every day life this would be an inconvenience but would be dealt with I found myself in a very sad place. The first thing I went to do was pick up my phone to call Steve. But Steve wasn't there. He wasn't there then and he isn't going to be there in the future. I froze not knowing what to do! I'm a smart woman, or so I like to think! But my rock, my person wasn't there to help! Of course I can work this out. Of course I can call the AA but the point is, that in the past I didn't need to. That was Steve's job. We had roles, as traditional as it sounds we did. Blue = Boy, Pink = Girl......
So on Sunday I found myself having to do blue jobs!! Taking the Xmas tree down, chopping the Xmas tree up, taking the rubbish to the dump, cleaning the car!
Now don't get me wrong of course I miss Steve for more than the blue jobs! But the blue jobs remind me, no hit me in the face that Steve is not here anymore.

But I did it. Little steps, big hurdles but I did it but not alone, with friends and family by my side. Helping me and the kids through this journey, as we go we discover new ways of doing things, no longer are the jobs blue or pink but instead we have a middle ground the new way of being, when being thrown into a world of being on your own. Its a mixture of blue and pink. Lavender.

New Year - Only 1 Cup please

2011-01-03T23:53:00.001Z

The clock struck midnight and I was so glad to be in my home with amazing friends. I had such strong feelings about New Years Eve. I didnt want it to come. I didnt want it to be midnight. I didnt feel like celebrating and welcoming in a new year. I wanted to go backwards not forwards. 2011 is a year which Steve never saw, at least when we were in 2010 I had shared that with Steve.
But with great friends and the girls we were at least able to be together and no one had expectations for a wild party. We did manage to have fun though and the dance game on the Wii provided a great distraction!!! As did the vast amount of wine!!!!
We let off 3 Chinese lanterns (1 for each girls and 1 for me) at just after midnight, these were given to Steve and I at our wedding, so it meant alot to me to let them go and watch them climb high into the nights sky. A way of having a pause for thought. Looking up to the sky, watching and thinking about them on their journey.
Well Im back to work tomorrow and in fact off to Brussels for a 3 day conference, where I have the honour of speaking to a packed conference room on the Marketing strategy for 2011. It will be tough going away. I havent been away for a long time, as I stopped travelling in October when Steve started to take a turn for the worse. So being away from home will be another hurdle. And like all of the hurdles, the first will be the worse. I always called or text Steve when I arrived, often he would laugh when I did so! As I felt the need to tell him I arrived! His response was "Good!" Speak to you soon!" He was never one for the telephone! not text or talking! But we talked everyday. He would always want to know how things went and he had a brilliant memory for names! Would always know who the people were that I was talking about.
Also being January and going back to work also signifies life going on. I have up until a few days ago been getting 2 cups out every morning, to make Steve and I a cup of coffee but in the last few days have been only getting one out. Ironically getting only one cup out has made me much sadder then getting 2 out! 1 means Im getting use to it. It means that Im getting on with things and making a new way of doing somethings! And I don't want that. I loved how our lives were and dont want things to change! And I know as time goes on these things will go on and its natural that as time goes on these things will happen! As I am after all only talking about putting one cup on the side! Then I think I need to be a bit kinder to myself. Reading this back, people will think Ive redecorated the house or something!!! No nothing of the sort! Just trying to get use to being on my own and and it is after all such early days.

Small Steps - Big Hurdles

2010-12-27T23:59:00.000Z

Well this time of year was always going to be hard. But again dont know why but it surprised me just how hard Christmas and the days that led up to it and followed have been so hard.

I suppose its simple really. This time of year is about family! And my family just doesn't feel complete....
But Im so incredibly thankful for the close family and friends that I have. And the girls. Now what would I do without the girls. Megan and Victoria just constantly remind you that life is for living. They have been what have kept me going. To them this time is hard and I can tell that, not by there actions but by the memories they talk about. They talk so fondly about Steve/Dad about the things we did, not with tears in their eyes but smiles on their faces and from that we should all learn.

And of course from my forever constant living friend the Robin....

Yes he or she has been about. About at times when Im not expecting him. Sitting on the garden fence, sitting on my car when I was trying to scrap the ice off. Even sat on my window ledge when I opened up my blind on Christmas morning.

And not just the Robin, it seems that things just happen which are unexpected which bring Steves memory straight back to life! Like the Christmas cracker I pulled on Christmas day, which had the trivia question about James Bond films. "How Many James Bond Films Have Only One Word In the Title" Now there was only person who could have been sat around the table that would have 100% known the answer to that question... And he wasn't there. So why out of all of the 10 crackers on the table did I get that one? Why didn't I have the one which said "How Many White Keys On A Piano" It like a bolt of lightening! As if to say I'm still here. I still live on and will always be here, in some form. Whether the Robin or the Trivia question or our favourite song on the radio, playing just when Im having a particularly low moment. These things are here all around and are so much more powerful than the photos or the memories in our heads. Its these things that make you stop and at the moment shed a tear but Im hoping in time the tear will turn to a smile.

Well as promised we completed the Fun Run and raised over £400 for the hospice and here is a photo of Megan (In Reindeer Suit) and Victoria who between them sang Rudolph the Red Nose Reindeer for nearly all of the 3 miles! Meg wearing that suit all the way round and Vix dressed as a Santa! Both loving all of the cars sounding thier horns, giving everyone a wave!

It was a brilliant atmosphere and felt such a brilliant thing to be part of, as we truly knew what a difference the money would make. Since then we have been carol singing around the streets of Chobham on a very cold and snowy night, both girls knocking on doors, whilst a few of us walked along singing carols. Again I think we raised nearly £400. I have also made contact with the fundraising team at Woking hospice and am going to meet them in the New Year.

Unfortunately the lads football match had to be postponed due to snow on the pitch! But a date is being organised for the next few weeks.

I have also been asked to help with a Kidney Cancer fundraising ball and a Woking hospice one, so things are going to be busy in 2011 fundraising.

So my life continues to be busy and that really is by my choice. I dont want to sit around too much. Im not that sort of person but also it gives me too much time to think! And thinking at the moment is not good!As a very dear friend said to me, be proud of yourself, as ever hurdle is hard but you are doing so well.

At times it feels like I am and others it feels like Im straight back to the day Steve passed away.

Well I am going to continue to make small steps and hope in doing so that the hurdles will slowly be chipped away.

Wrighty Way Continues

2010-12-09T00:20:00.001Z

It’s been nearly 2 weeks since Steve’s memorial and cremation but only now have I been able to write anything. I keep trying but can’t find the words! I know hard to believe for a woman who loves to witter!!

It was a cold but bright blue sky day, which was so fitting! A day Steve would have loved! In fact he would have said "I should be out on the golf course!" Gosh I wish he was here to say that.

At just before 12pm Steve was brought to the house, as I said before he wished that his friends could carry him and with the utmost strength and dignity they did.

When the funeral cars arrived I went outside to meet them I wanted to be alone to see Steve arrive. But I wasn’t alone...... Now please don’t think I’ve gone mad! And goodness knows I do keep questioning this!

As they opened up the back of the hearse a robin appeared and flew onto the coffin and then flew to my feet! Our house is called Birdwalk and it is as the name suggests a haven for birds and we have a robin that frequently spends time with us, so when this happened I couldn’t believe it. Now I try not to read in too deep to things but this was such a moment. It was as though the Robin knew. It was in some sense Steve telling me to be strong and he would be here for me! Even as I type this I can hear Steve laughing at me, telling me not to be so daft!!!

The service was beautiful! And I’m biased but so many people told me it was so moving. For me, it was so personal and just as Steve would have wanted it to be.

His friends and family paid tribute to him and I even managed a few lines. Well to be honest in the saddest of ways I have known as Steve did that this day was going to come. And for me I needed to be strong and knew that this wasn’t going to be the hardest day. The hardest days had been or were to come. Hearing a doctor tell Steve on Xmas Eve last year that HDIL2 hadn’t worked which we both knew meant that their was no long term cure or the day he had to go the hospice, where harder. Also I know that harder days are to come for me. Days like today when I came home from work and had to drive the M25 knowing Steve wouldn’t be there when I got home. So the day of the funeral was about Steve and I was determined to ensure that he had the most fitting tribute that he so deserved!

And all I could here was "Come on Hewitty! If anyone can organise this, you can!"

Over 300 people packed into our local church and all joined in with the service.
The cremation took place at Woking crematorium for family and close friends.

Since Friday the 26th life as been a bit of a blur. Actually since the 20th October which is when Steve went into the hospice,. Life has been a bit of a blur!!! And maybe even further back than that! I’m struggling to remember things. It’s like my brain is shutting things out!

I think it is a coping mechanism and so I guess is the inability to sleep! My boss has a phrase where he tells his staff to sleep quicker, if we complain we have too much to do! Well I think I’m taking that to the extreme!

Well I’ve decided that the Wrighty Way as a blog site will continue, as the Wrighty journey will continue...... Every thing is hard and I keep telling myself the first time of everything will be hard, so for those who are interested I will continue to write about these things.

I will also write about the positives and that I can be sure there will be many!!

To start with on Sunday, Louise, Megan, Victoria and I will be running/jogging/walking/strolling/crawling! 5k for Woking hospice dressed in Santa Suits!! We decided to do this when Steve was still here and he thought it was a great idea! Think he just wanted to see his wife and ex wife dressed stupidly in Santa suits!! And the kids have been their usual selves and have raised over £400!!! Wonder where they get it from!

And this I know is just the start of the Wrighty charity fund! For which we have decided to split all funds 50/50 between the James Whale Kidney Fund and Woking Hospice, as these 2 charities do separate things but have the same aim to make life for people with Kidney Cancer the best they can be! One by making people aware of Kidney Cancer to give them the best chance of survial and the second to ensure those who arent so fortunate to have everything they need, to make thier lives as pain free as they deserve.

So on the 27th December many of the lads are getting together to play the first charity sporting match for Steve! FOOTBALL.........

Apparently there are going to be annual, Football, Golf and Cricket matches! And I’m sure as 2011 comes, there will be other sporting ideas added! Please feel free to get in touch with ideas.

Goodness knows how this football match is going to turn out, as I think its been many years since some of the lads have played! But one thing is for sure, they are going to do it with the Wrighty spirit!!!

It makes you realise how Friends and Family are so important in life! It is such a shame that something like this needs to happen for you to truly realise it! And it was an absolute testament to Steve what amazing people he had in his life and how wonderful those people are and I hope still will be a big part of my life.

I honestly can say from the heart that my life will never been the same but I do remember my earlier words:

Tomorrow I will be sad, Today I will be glad and that I am, for meeting a man who truly loved me.

Date

2010-11-16T00:36:00.000Z

Today and in fact every day since I lost Steve Ive been trying to keep myself busy. But today was important, as today I met with the funeral directors to book the date and organise the detail.

The funeral will be held at St Lawrence Church, Chobham on the 26th November at 12pm.

Steve and I didnt talk very often about life after he had gone, as we were too busy either trying to fight the cancer or too busy living our lives together. However one day, whilst sat outside looking at our beautiful garden Steve told me what he would like for his funeral.

Steve wished the following
He wanted everyone to come together who had known him through the years for a service of remembrance at St Lawrence church, followed by family only at the crematorium. Steve particularly wanted his close friends to carry him from our house to the church. And finally when I asked him about flowers or donations, he simply said "I love flowers" Oh and of course a drink afterwards at the Sun Pub!

So.... that is what he is going to have! Well after all of these months of fighting for Steve to get what he needed Im certainly not going to stop now!
In fact at times I feel like this is Steves last wish of me but its not. Steves wish goes far beyond the funeral. Steve wanted me to continue to be a part of Victoria's life, he wanted me to carry on being a great Mum to Megan and he wanted me to be happy. Oh and not forgetting his precious lawn!! Some of these I know will be easier than others! So anyone with green fingers your always welcome at the house!

Ive spent many hours thinking and talking about Steve to friends and family and some moments are harder than others. I still have a terrible pain inside and last thing at night and first thing in the morning are the hardest but I have a focus at the moment and a drive to ensure that the day that Steve wanted was and is the best it can be.

So as I said before anyone that can and wants to are welcome to the service on Friday 26th November at St Lawrence Church 12pm. The funeral directors are Lodge Brothers, Woking and the florist in Chobham will be doing the flowers Wooldridge and Sleep.

Love to everyone and make sure you take care of yourselves and each other. x x x

My Beloved Steve

2010-11-13T00:26:00.001Z

The saddest day and moment of this journey came on Wednesday 10th November.

As much as we all knew in our hearts that the day was eventually going to come, it did not nor does not take away the huge pain me, Victoria, Megan, Steve’s Parents and in fact all of our family and friends are feeling.

Steve passed away at Woking Hospice peacefully with his Mum, Dad and I by his side.

He was finally out of pain. Steve battled this disease with the utmost dignity, never moaning about the pain, nor complaining about the turn of fate he had been dealt. Instead he held his head high and spoke about the wonderful life he had led.

Steve was my best friend and I’ve spent the last 18 months fighting for him, all the time trying to ensure that he received the best of everything.

I feel so immensely proud that I can call myself Steve’s wife and that myself and Megan were able to join into Steve and Victoria’s life and become a family. We will always have that and I know Steve would want us to remember him and lead our lives in that way.

I miss him already so much that it hurts their are moments when I believe I can hear him calling me, Hewitty! Hewitty! But I look around and see that no one is there.

I have the amazing support of my parents and close friends and without this I would not be able to carry on but I do have these people and many others and for that I’m eternally grateful. A neighbour gave me a card with the following words:

From Tomorrow on I shall be sad, from tomorrow on,
Not today. Today I will be glad,
And everyday no matter how bitter it may be I shall say:
From tomorrow on I shall be sad, not today.

Steve was an amazing man and behind him he has left a huge memory for us all. The stories that have been told over the last few weeks have been a huge comfort and I know their are thousand more to come. It is still very early days and I know many people want to come and pay their respects to Steve. All of which Steve wanted. As soon as the arrangements have been made I will post on here again, so that for all of those who can and want to, can join us as we say goodbye.

Rest in Peace Steve

Stephen George Wright
4th March 1969 - 10th November 2010

Wrighty the Fighter

2010-11-06T23:26:00.000Z

This last 10 days has been the most horrendous roller coaster for everyone.

Steve is still flighting on. I am sat here with him in Woking hospice, where he has been for over 2 weeks now and i've been staying with him permanently for just over a week now.

Shortly after I wrote my last post, Steve took a turn for the worse. He was diagnosed with having pneumonia and then suffered massive internal bleeding.
Both times we were told to expect the worse and both times Steve pulled through. The second of such times, we spent nearly 24 hours holding his hands whilst streams of friends and family came to say goodbye, only for him to open his eyes and ask his best friend what the Man U score was!!! Then he proceeded to eat Mcdonalds breakfast! Well he is Wrighty after all and he was and is always going to do this the Wrighty Way!

All of our friends and family have been amazing support. Steves parents are now staying in the hospice, they have a room upstairs, with a shower room and a kitchen. I have been staying in the room with Steve. The nurses attached an extension to Steves bed so I can sleep right next to him. The night they did, they didn't tell me! So what a surprise I got when I came back in the room, to see a newly created double bed with Steve one side and my pillow adorned with a flower and 2 chocolates! Welcome to the honeymoon suite they said!

Steve is battling every day and over the last few days he has been sleeping most of the day. He still manages to open his eyes occasionally and when he does, he gives me a smile and tells me he loves me. He has stopped eating now and only drinks occasionally. Everything takes too much energy. He is getting weaker and cant move very much without the help of us and the nurses. But he is still fighting on. He still cares so deeply for people. He asks how people are and is genuinely interested.
I feel so loved by Steve, he wants me to be close and I love being close to him. It pains me right to the core seeing him not being able to do things for himself he looks so helpless. The worse is when he is in pain but they are so wonderful here, they react instantly and give him a shot of morphine. Steve wants to be here. He feels safe and so do I.
I cant begin to explain what an amazing place this is and I wouldn't have been able to cope with out them.
Well I cant promise when I will next post as minutes slip into hours, slip into days and all my energy is spent with Steve.

One last thing ....
A colleague who I also class as a good friend sent me these few words and think they sum up perfectly where Steve and I are with our love:
Being deeply loved by someone gives you strength,
While loving someone deeply gives you courage

Scan Time

2010-10-25T22:35:00.000+01:00

Well Steve has been in here 5 days now and cant believe where the time has gone!
Steve is still about the same, he is still exhausted but has been out most days in the wheel chair for a crafty ciggy!! He has to go out into the car park for one and either myself or one of the lads who have been to visit push him out there.
He is eating but only small amounts but the doctors have reassured him the amount he is eating is fine and not to be hard on himself.
He is settling into a routine now which is comforting to Steve, he knows his meals will be delivered at 12pm and 5pm. The food is good here as they only have 10 rooms and so is always fresh and nicely served. No comments or comparisons please to my food!
The days seems to pass by quickly and the morning and evening Steve mostly spends sleeping with a few hours in the afternoon of chatting when people come to visit.
I typically arrive first thing in the morning and leave when Steve has fallen asleep at night I do manage to sneak off for a couple of hours in the afternoon when his parents arrive, to see Megs as she is on half term at the moment. This whole thing is so hard on everyone, the kids included and today Ive been particularly stressed! No real reason why, apart from the obvious but Im feeling so helpless I want to do more for Steve and want to make this all go away but I cant. All I can do is make sure everyone does their best for him!
The hospice medical director came round today and spoke to Steve and he thinks Steve should have a scan to see what is going on with the cancer and to see whether their is anything obvious happening which is stopping Steve from walking. It is possible that the tumour is pressing on Steve spinal cord.
It was hard as this doctor doesn't know Steve but like everyone here in the hospice is trying his best for Steve.
Steve is anxious about coming home, not that at this stage he wants to come home, its just he is worried about how we will mange. I try to reassure him that they wont let us go home without a plan in place but that doesn't take away Steves anxieties.
Tom called tonight........
That man is unbelievable. I know Im sounding like I should start a fan club or what is it young people do?? a face book page!! But he is wonderful and he asked me what was going on with Steve, so I told him. He understood why they would be thinking of doing a scan but said he didn't feel it was going to show anything new. He was more than happy to have a look at the scan though and give a second opinion and call the Prof here if I wanted him to! At the end of the call he told me to make sure I tell Steve he is sending his best wishes and that I should remember that I can call him at any time! See now why I think this man is unbelievable. He isnt even Steves offical doctor anymore and given he works in the NHS and how busy he is, then it amazes me he remembers and take time out to check up on Steve. Not sure if this link will work but it should take you to a picture of Steve, Tom and I taken at a dinner for the James Whale Fund. www.flickr.com/photos/jameswhalefund/5041491457/
Tom is a trustee of the fund and Steve and I were invited to attend their presidents dinner due to amount of fund raising we had done for them this year. It was a good evening and we were even on the top table!!! Funny when this photo was taken Peter Stringfellow was waiting to have his picture to be taken and had to be asked to move so Tom, Steve and I could have ours done!! :-)

Well at least with a scan the hospice can put a plan in place. Either they will look at if their is anything they can do to change things or if not then what we can do to manage things.
Im not sure when it will be but they have made it clear here that Steve wont be leaving here until we have a plan in place for his care at home.
I will update soon. x x x

Exhausted

2010-10-22T00:40:00.000+01:00

After days of feeling more and more exhausted and no sign of Steve’s appetite returning Jane (Macmillan Nurse) suggested it maybe a good idea for Steve to come into the hospice. I thought Steve would fight this suggestion. However Steve’s anxieties have turned to his own health.
He is frightened.
And the suggestion of going to the hospice was welcomed by Steve.
It is a safe place, a place where the staff can help him and make him comfortable and relaxed. I really didn’t expect Steve to feel like this, it shows you how as you progress through the disease your attitudes change. Steve has always resisted hospitals, doctors and in fact anyone and everything in the medical world. But now he wanted it.

Steve went into the hospice on Wednesday afternoon. Woking hospice like all hospices in the UK is completely reliant on donations. It is a smallish building with 10 ensuite rooms. Their is a high ratio of staff to patients and their primary purpose is to make the patients and families feel comfortable and cared for.

Steve relaxed alot when we arrived and today he slept most of the day.

He has become weaker and getting out of bed and moving himself around is so terribly hard. And this isnt helped by the fact he has neither appetite nor energy to eat.

He still continues to force himself to eat.
He makes himself eat food, as he knows that without food he won’t be here. He keeps asking what they can do to bring his appetite back. The straightforward answer is not alot. However they aren’t giving up. They are looking at many things and one is whether he may have an infection and as a precaution they have given him some antibiotics.

Eating is such a strange thing, when you think about it....

We eat because we are hungry or a craving or simply to be sociable but what does it feel like when your mind and body simply doesn’t want food anymore. Steve is still strong in mind. He knows the importance but knowing this doesn’t and can’t make you hungry.

When someone is like this, it doesn’t matter if you present them with a plate full of their favourite food, in Steves case think that would be a mixture of fig rolls, apple and blackberry pies, cheese straws and not forgetting Vimto Bon Bons! And yes we have plently of these goodies!!
However if you simply don’t have any appetite then every meal is a battle. But a battle that Steve is still willing to take on! And today he did that well. He ate scrambled eggs on toast, jaffa cakes, jelly and ice cream and a couple of Victorias chocolates!

I can stay at the hospice but I haven’t done yet. Steve is comfortable and wants me to rest. It feels so sad coming home without him, all our wedding cards still up and the house still looks and smells like a florist! I know that the hospice is a good place for Steve to be but I miss him. I miss being able to give him a kiss at night before I go to sleep I did however manage quite a few cuddles with him today between the visitors.

Steve even though spends most of the time; with his eyes shut he is listening!! Making the odd comment and asking questions of everyone who comes to visit.

Well I’m off to try and get to sleep now. I will update in the next few days.

Love and Best Wishes

Sally x

Wedding Pictures.........

2010-10-19T11:15:00.002+01:00

I am really pleased to be able to share with you a short slideshow of our wedding day.

Our pictures were taken by Sarah Aires. Sarah was my neighbour for a few years and is also a first class professional photographer. Sarah Aires Website

It was really important to Steve and I to have a photographer who knew us and one who was sympathetic to the fact that we wanted an intimate personal wedding but that we got some lovely photos that we can treasure forever.

I think she did exactly that and more!! She captured moments for me that I know I can always look at! Click below to have a look for yourself.

If you would like to look at the full gallery, then the password is birdwalk. (The name of our house!)

We had a wonderful day and you will see that the sun did indeed shine for us. Many of the pictures were taken in our garden, which for me makes them even more special.

The girls did really well and did the reading at the wedding, which was a surprise to Steve and I.

We have just come back from a magical few days in Chewton Glenn. Unfortunately Steve was so exhausted that he wasn’t able to do very much. He is struggling all of the time at the moment. He has zero appetite and zero energy. And is finding doing things very hard. The Mcmaillian nurse is coming over this afternoon and Im not sure what they are going to say and Im sure their is no magic wand to making Steve better but Im hoping at least something can be done to help. It is the saddest Ive been through this entire journey and being positive and upbeat is exhausting. Chewton Glen really helped with that. How lovely to relax with Steve and read a book! Relax with a massage and call 0 when ever I wanted something to eat! And eat I did! The jeans are feeling tighter but the mind is feeling lighter!

Love Sally WRIGHT :-)

Promotion........

2010-10-14T23:01:00.000+01:00

Today at 3:45 I was officially promoted to Dr Wrighty!!!! :-)

Steve, I and our close family were at Weybridge registry office where we were married!

It was a wonderful day, made more special by being with the ones we love.

This evening we went to the local pub with friends who truly represent the meaning of love and friendship! We feel totally blessed to have been surrounded by the ones we love the most and people who have been and will be there for us.

I had the most wonderful day and feel blessed and honoured to call myself Steve’s wife!!! Steve did me totally proud and I can’t wait to share the pictures........

Now I’m off to bed with my new husband and in the morning we are off to Chewton Glenn a beautiful hotel in the south of England for a few days of relaxation and pampering!!! x x x

We need the Sun to Shine

2010-10-11T07:30:00.001+01:00

Sorry for the long delay between posts, a mixture of reasons. At first because we were busy with getting on with life but then secondly unfortunately over the last few weeks Steve has not been well.

Steve is feeling incredibly low and if truthful low does not even begin to describe Steve’s state of mind. He, as you will know has never been one to let life get him down and never worried about anything!!! Remember back to my first post where Steve’s attitude to the cancer was a nuisance but at least the golf and cricket are on the TV!

Gosh that seems such a long time ago.

So many times in the past we have sat together and I’ve been telling him about my trivial worries but every time, he would tell me to break down the worry and if when I had done that I either had the solution or if not, then don’t worry about it! I remember how frustrating that would feel but he was so right.

Well that seems like forever ago. Steve has become trapped in a world where the worries of everyday things stop him from living his life. It is so consuming for him, he can’t focus on anything else. Even the small things are a battle for Steve and he simply focuses on getting through each day,

How many times do people say I’m feeling down or even I’m feeling a bit depressed today. Well I can honestly tell you never again will I utter those words. Depression is serious issue in so many people and it isn’t about feeling fed up, it is a truly life debilitating state and can not be solved by someone telling you to pull yourself together! As some one said to me the other day. If it was simply as easy as pulling yourself together, then Steve would but it isn’t and I’m for the first time at a total loss and despair of how to help Steve.

How cruel is this life, when you have so much to deal with, that out of no where your mind decides to play awful havoc with you. Like having cancer is not bad enough.

Of course many people have said, it is only natural and to be expected for some one in Steve’s position to go through this but that doesn’t make it right nor more importantly does it make it fair! Steve in his physical health is doing quite well. He has been on the cancer tablets now for a month and the side effects have been fairly limited but they are not sure whether the drug is causing some of Steve’s feelings. We saw the Prof on Wednesday and he has stopped Steve taking the Affinitor for a week, to see if that helps with his feelings.

So with Steve feeling so well physically it feels to me even crueler that his feelings of worry and sadness are stopping him from doing the things he could be doing.

Our GP and Macmillan nurse have been their truly wonderful selves and have been a huge support and have given Steve some more tablets to add to his ever increasing twice daily routine! And also some advice on how to handle everyday things.

So that leaves us wishing and praying that the tablets start to make a difference as soon as possible.

Prof says Yes to Cancer Drug

2010-09-04T17:58:00.000+01:00

Wednesday went well. Steve’s bloods were all good and his calcium level was where it should be and the other tests showed his liver and remaining kidney were performing well.

Prof Pandha asked about Steve’s sleeping and it was so nice to be able to tell him how much Steve’s been up and about!

All of this means that Steve is well enough to start the new cancer drug. Which is called Affinitor? As you may remember this is a drug you can not get on the NHS as it isn't approved for by NICE. Who by the way are still declining people much needed cancer drugs, even under the new government! This drug will make Steve very tired :-( and Prof Pandha also wants Steve to stop the Steroids, which worries me, as I believe that Steve's energy and appetite are due to the steroids and with these stopping and adding in the new drug, which is known to make you tired, then I’m not going to see Steve unless its upstairs in bed.

I did question why we should stop the steroids to the Prof and he said it wasn't good to be on Steroids for too long but I think it is best we don’t change too many things all at once and the McMillan nurses agrees, so we are going to do it gradually.

Also we asked for Steve to have another scan, as its been 3 months since his last one and we want to make sure that we have something to compare with, when he starts the drug to see how effective it is. Steve should have the scan in the next couple of weeks.

When we got back in the car Steve said to me, that he is going to change my name from Dr Hewitty to Prof Hewitty! :-)

So Steve will start Affinitor on Monday and it is one tablet per day and he will take it in the evening and we are both opening that Steve manages to not get the sleepy side effects, as we are both really enjoying this new found ability to be sociable!! He won’t have a break from this, like Sutent, so it is continuous, until it stops working or the side effects become un manageable. Let’s hope both of these are a long way off!

Spain was wonderful and so is Steve

2010-08-29T23:28:00.002+01:00

Well we are back! And it was wonderful. Not only the weather but the whole thing! Steve was and is the best Ive seen him in a very long time!! The stress of getting to Spain was so worth it.

We arrived in Spain after a very early start but no one minded as the Sun was shinning! And shone it did for the rest of the 15 days. We had lots of fun and spent time during the day in and out of the pool and at the beach. Every evening we all went out for dinner.

For the first few days it was just us and Steves parents and then after that the Moores arrived (Steves sister, husband and 3 children) which made for a real familly holiday. The girls and in fact all of us loved it.

I think your getting the feeling here! We had a wonderful time.

Steve did sleep but somehow, it didnt feel like he was sleeping as much. He was always up for his "Mum's" lunches! and then with us all relaxing on sun loungers or lilos (that was me!) then it didnt feel any different from anyone else on holiday.

The sun and the warmth of the weather really helped with Steves back and the pain was by the last week all but gone.

By the end of the holiday we were looking forward to coming home but with a slight apprehension as Steve was doing so well and we were all so relaxed it had become so easy to forget about the battle against kidney cancer. Whilst we were away Tom called us and left a message on my mobile. It still makes me feel emotional that someone as busy as Tom is, still takes time out to call us and we aren’t even officially his patient anymore. He was calling just to check on how Steve was doing and we will probably go and see him in the next few weeks to get his opinion on things, as both Steve and I really value his opinion.

Steve has got an appointment with Prof Pandha on Wednesday to talk about taking the new cancer drug so I will update after then and for the time being we are enjoying being home and trying to get use to this cold weather and rain!!!

Quick Update - Spain here we come

2010-08-11T23:30:00.000+01:00

Steve is doing well, so well in fact that we are leaving tomorrow morning to go to Spain!!! Hence why this is a quick update as we are leaving the house in 4 hours time.

Steve is still sleeping alot but he has been given a new course of Steriods which have really helped Steve with his energy levels. His pain is mostly under control and he is able to move slightly better but the ever illusive golf is still not possible but who knows after a 2 week break in Spain with all of the family, then who knows!!

I have been busy getting all of Steves documents translated, as they say plan for the worse and hope for the best and hope we are. Steve and in fact all of us, all deserve a great break away. The kids are so excited I heard them singing "We are all going on a summer holiday!" Lets hope they are still smiling when we wake them up at 4am!!

Thank you for everyone who has popped over in the last few weeks and fingers crossed all goes well in Spain and I will update when we are home.

We are hoping when we get back that Steve will start the new cancer drug and the rest will bring us all home, feeling more relaxed and smiling.

Still no cancer drug and still sleeping

2010-07-28T23:23:00.000+01:00

Its hard to know how to start this entry as Im desperately thinking of a positive way to start this. Well Steve is still sleeping but whilst sleeping or resting, he is out of pain. When he is up and about pottering in the garden, his back is very painful, which stops him from doing the things he wants to do.

Over the last few days, he had been getting a high temperature in the evening. The first evening I knew he was hot but didn’t know how hot! But after he had his nightly tables it went down. Telling the Macmillan nurse and doctor the next day he was hot, was not that helpful, they obviously wanted to know what his temperature was! So a quick trip to the chemist and a dilemma over whether to spend the extra money to buy a thermometer which took the body temperature via the ear, rather than under the tongue and I quickly remembered Steve's preference for the ear, which is how they take it in St Bart's versus under the tongue in St Peters and decided that Steve was worth the extra £10, that and the hassle free it would provide me, when I want to take it.

After several nights of Steve's temperature reaching 38.2, and the tablets not working their magic, Steve visited our wonderful GP Dr Carty, who listened to Steve's chest and has diagnosed him with a lung infection. I was at work when Steve went to the GP' s surgery but having nipped out to organise the appointment I couldn’t really pop home to attend with him! But on hearing the news that it was a lung infection it took all my will power and strength to go back into the meeting. I was gutted as it really isnt what Steve needs.

Steve has antibiotics for a week, which should help clear up the infection. Another 3 tablets to add to the pill box! Which is now at the point of bursting! In the evenings alone, Steve needs to take 10 tablets, which is the same amount as he needs to also take in the morning. Oh and not forgetting the injection as well in the evening.

As much as I had high hopes and Steve of course that he was on the up after his Mums birthday, things have started to slip back down again, he is sleeping more and more each day and when he is on the odd day able to do something like take the "foreign" grass out of our lawn! Don’t ask! For those of you who know Steve really well, then you will know of his passion for a perfect lawn! I've heard many a story about when he was playing cricket and the team was fielding him spending time weeding the out field, whilst keeping the other eye on the ball! Needless to say I had no idea that you could get foreign grass in your lawn but apparently you can! And quite frankly cancer or no cancer no "foreign" grass is going to be allowed to reside in our lawn! But now even this takes it out of Steve. But with his determined spirit most days he is able to keep on top of such things!

Every day we have at least a couple of visitors, most of the time, people pop in and get offered a cup of tea then shown upstairs to see Steve, the smiles and the laughter are such wonderful things to see and hear, that even for those 30 mins, they break the day up and Steve becomes himself again. What determination and spirit he has, to keep things going and is so interested in what everyone is up to. So please keep coming as it make such a difference to Steve to see different people and catch up on the latest goings on and I know in between sleeping, he always has a point of view, well after all he is still Stephen Wright!!!

Too much Calcium.........

2010-07-18T23:09:00.001+01:00

Steve is still very sleepy but is at least now starting to being awake for a few more hours a day.
Yesterday we all were able to see Victoria in her dance show, where she was the STAR and that isn't just us being biased as she won several trophies. It was so lovely that Steve was able to be there, along with Steve's parents and mine. In fact during each of her 4 performances she had her groupies there!

Steve went to the hospital on Wednesday to see Prof Pandha and had the routine blood tests, which showed everything was fine apart from his level of calcium's. The calcium level was too high and as such he had to be put on a drip for 20 mins which Steve slept through :-) The Prof told us that the raised calcium wasn't due to Steve's love of cheese and at that moment all I could think about was the Udder Cream!! But luckily its not linked! In fact its more to do with how your body regulates its self. None the less it does cause extreme tiredness and we were told this could be the cause. However they wanted to rule out whether their was any cancer involved. So Steve was booked in to have a brain scan on Thursday.

We were given the new cancer tablets Affinitor but were told at this stage not to take them, as it would cause Steve to be even more tired!! Which would have meant he would have been asleep 24 hours a day!

The brain scan was on Thursday and the doctor called me on Friday with the result!

And thank god we had a little bit of luck on our side and it was clear!

Have you ever tired to answer the phone with your fingers and toes crossed? Well that's exactly what I did on Friday! I became obsessed with our phones, as I wasn't sure which one they would phone on! I didn't go anywhere without Steve's phone, my phone and the house phone!!!!

Steve luckily was sleeping the whole time and so even though of course he was stressed by it, he wasn't awake enough to really worry too much!!

Because the scan was clear, it does mean that the doctors need to look at what else is causing the sleeping.

So a few changes have been made to his medicine and with the calcium medicine, we were told to monitor things over the weekend.

And I'm pleased to say, it appears things are on the up!! Steve and I and the kids spent the day with his Mum and Dad as it is Muriel's birthday. In the picture is Steve and his Mum and his sister. A great afternoon and made even the better to be laughing and celebrating some good things.

Well if things continue then hopefully Steve will start his new treatment next week. And as soon as I know will post again.

Sleep, Sleep and a bit more sleep

2010-07-05T23:05:00.000+01:00

Since Thursday afternoon, Steve has been asleep!

We have been up for 2 more radiotherapy session, with the last 2 being tomorrow and Wednesday.
The sessions as I've said only last a few minutes but the effect on Steve has been dramatic! Well we all know if their is a side effect to be had, then Steve will get it 110%

So since Thursday Steve has been awake for only a few hours each day and even then, he has barely been able to focus on anything. He is not eating very much nor drinking and saying hardly anything but he does seem to have slightly less pain, in his back.

As much as its wonderful he is resting and resting / sleeping with out pain, it is also a worry! Who would have thought I would be worried about him sleeping!

I called the hospital today, who said they would see us when we were up there tomorrow for his radiotherapy. I'm just hoping its just an extreme side effect.

I spoke with Prof (Steve's new doctor) secretary in today and Steve has an appointment next Wednesday to have a check up and to start the new medication.

Well whilst he has been sleeping, when I've not been negotiating us through London traffic for hours on end! In fact I think I could add taxi driver to my list of duties, as I've become very good at driving through London, squeezing in and out of the traffic, in our Chelsea tractor! I'm thinking of signing up and taking the knowledge!!

I've been pottering! Pottering around the garden, making sure I keep everything alive. I've even been promoted from simply watering, to weeding and planting! I know a complete worry for those who know me of old! And I'm sure in my attempts at weeding I've dug a few prized plants up! But I need to quickly add, that I've not reached the stars on the badge yet to mow the lawn! No along way to go before I make it to that stage! Sleep for me is not so easy to come by. I feel constantly tired but cant sleep very well and seem to wake up every hour.

Well I'm off to try and join Steve in the land of nod and will report back, when I've got some more news.

Radiotherapy Started and Guildford it is............

2010-07-01T23:06:00.000+01:00

Steve started Radiotherapy today up at St Barts, the treatment lasts for 5 days and takes about 20 minutes each time. However due to the fact London is so busy! Traffic wise the whole trip takes about 6 hours! 6 hours most of which is sat in a car, which at the moment is really painful for Steve. His back is really sore and its so hard to get into a comfortable position.

This week has been a busy one, with trips to St Bars, Harley Street and Guildford hospital.

Steve had to go at the start of the week to be "measured up!" for Radiotherapy. We have been told, that due to the location of the tumour, that it is going to be a challenge! Typical, why nothing can be straightforward is beyond me!

Oh well we are told that we have one of the top guys on the case and that it is an interesting challenge for them. We haven’t been to this part of the hospital before, surprisingly as I thought we had been everywhere!

The building is incredibly run down but it didn’t take away the spirit of the place, given the nature of radiotherapy and the fact people have to have it on consecutive days and some for many weeks, it felt like a family lounge rather than a waiting room. People swapping papers and stories of what they had been up to, since they had seen each other the day before and nurses chatting away, as though they had known each patient forever. I felt like a distant cousin, who had only shown up for the tea and biscuits! It was a calming enviroment but sad one at that, again Steve looked the youngest by about 30 years!

Steve went off for his treatment, whilst I waited and was introduced to everyone, as I will see them all again tomorrow and every day until Wednesday when Steve finishes his treatment.

It makes for such a long day and one which completely tires Steve out. He is exhausted by the time we get home and the pain, is so difficult to manage.

We also have been to see two separate doctors this week, one in Harley Street, Simon and one in Guildford called Prof Pandha.

Both doctors specialise in the same field, i.e Kidney Cancer but we wanted to see if Steve could be treated locally, as the journey too and from London is exhausting for Steve.

Simon (Harley Street) was a great guy and knew all about Steve from Tom and so asked minimal questions and spent most of the time explaining what would be the next steps and how his thinking is about managing this disease. Steve got on well with him and I did too. He was just like Tom just a bit more organised! Which I did say to him! :-)

The next day we saw Prof Pandha and he was equally a nice guy, if not a little older. Strange comment I know but I have this thing about younger doctors! No not in that way! But that they seem to treat patients and particularly their family different. They seem to be more inclusive and also open to try and do things abit different. That said Prof Pandha was incredibly knowledgeable and he is based in Guildford! A mere 5 miles from where we live, so none of that terrible London traffic. He asked many, many questions and told us that he had received the biggest fax he had ever received on Steve. "Well alots been going on!!" I nearly said but thought better of it.

Prof Pandha will now be Steves doctor, with Tom playing a role in the background looking at the scans and notes etc.

Prof (as I now will call him) wants Steve to try Afinitor straight away, so as soon as Steve finishes the radiotherapy which is Wednesday, then he wants him to start on Thursday.

We have been given all of the info to read on side effects etc..... and mainly they are the same as Sutent but without the hand and foot condition, which is a bonus. It appears that you take Afinitor every day and dont have a break as you do with Sutent. And then are scanned every couple of months but I know better than to expect things to go according to any plan, so its a watch and wait situation.

On the plus side, the weather has been so beautiful that when we went up to London for the meeting with Simon, Steve and I were able to buy some sandwiches and go and eat them in Green Park, on the deck chairs which was lovely. So nice to be doing just the smallest of things together, not talking about any of this but simply enjoying the moment.

Home Again

2010-06-26T08:56:00.000+01:00

Sorry for the delay in writing, its been such a difficult time, that I've not had the time, nor the emotional energy to do it. Also I'm sort of stuck for words.

Awful is a word which keeps coming into my head but that doesn't really help other people to understand what is going on.

Well firstly the good news is that Steve is home. He came home on Thursday evening. With more drugs then our little pill box system can cope with!! He is out of pain (most of the time!) which is great but most importantly he is home and able to potter around in the garden, assesing the lawn! Which by all accounts needed more watering Opps!

All of the team at st Barts have been wonderful, as I said before they just couldn't believe it was just constipation. Well unfortunately their hunch was right. I knew they would be but I was hoping they weren't going to be but that is the real difference of going up to London to ST Barts. We have spent the last 2/3 weeks up and down to St Peters and Runneymede, never getting to the route of the problem of the pain in Steves stomach and back! But within 48 hours in St Barts, they believe they know what is causing the problem. Basically it is a mixture of constipation and nerve pain. The constipation is not caused by the morphine alone but by a tumour which is pressing on some nerves which are attached to Steves bowl. This is the reason that they feel Steves bowls are being lazy and not working properly. The second issue of the terrible pain and shaking is being caused by the same tumour which is also pressing onto Steves spine. This thing is now 6cmx5cm and is in the original place of Steves kidney.

Whilst originally they were worried about the cancer in Steves lungs, they are now more concerned about this one.

If it continues like it has been then it will start to put more pressure on the spine, so their is an immediate plan to have some radiotherapy. This will be extremely targeted at this one tumour to see if they can stop it in its tracks and thus relieving some of the pain and problems Steve has and importantly stop it from getting any worse!

However as I've said before on here radiotherapy and chemo are known for not being very effective on Kidney cancer but for GODS SAKE we deserve some luck!! Come on surely its our turn in the queue for some luck. Steve will need 5 session consecutively 1 day after the other and this will start on Thursday 1st July. The treatment itself will only take about 30 mins, their are side effects, one of which is diarrhoea which strangely would be nice, given Steves problems with his bowls!

We also have booked up to go and see 2 new consultants, we have decided to see the local chap Prof Pandha and also Simon Chowdrey (don't think I've spelt that right!) who is based in Harley Street. We are seeing them next Tue and Wed, so next week is going to be a busy one!! With this and the radiotheraphy.

Oh and as you may have guessed I didn't go on the bike ride. I didn't go for a number of reasons but the main one was that I am not well. I wont go into the details as this is Steves journey but needless to say my doctor told me that I couldn't go. I feel terrible about this and after everyone being so generous with their donations. I actually hit £10,000 on Wednesday. I am going to e mail everyone who donated and ask them if they would be willing for the charity to keep the money and that I will complete the ride next year. As I write this, they are into their 3rd day and I've been getting regular updates from my brother and friends. It sounds like its tough but they all keep saying that I could have made it. And I know I will do but this year it just wasn't meant to be.

When we have some more news I will update.

Love to all.

Hello Tom Again

2010-06-21T21:31:00.000+01:00

Well I spoke to soon!

Steve is back in hospital and this time in London at St Barts under Toms care.

Steve pain came back with force on Saturday and included a few more things this time! Namely uncontrollable shaking, high temperature and low blood pressure!

We took Steve to St Peters, our local hospital, as he didn't want to get an ambulance and after a few heated discussions with the admin staff at A&E we got him seen by a doctor.

The thing is, Steves now has a fairly complicated medical history and explaining this to a new person, takes time and they need to then speak to their boss and come back with a plan, which is only based really on what they see and hear from us, as they don't have access to all of the past records.

The first priority was to get Steve stable and deal with the temperature and low blood pressure. After that they started to run tests, to see if he had an infection. It was at this point I thought I should call Tom's mobile number.

I didn't want to do it, as I know their is a system and calling a consultant on the weekend is probably not part of the protocol but I needed and wanted the best for Steve.

Tom was his usual self, answering the phone straight away and putting me at ease, asking me questions. He told me to say to the A&E doctors to call him on his mobile and tell them "its complicated!"

Which I promptly went off to do...... This didn't go down to well, as apparently its not hospital policy to ring another doctor and I was told this by the A&E doctor, when I tried to explain "its complicated!" I was told "well why didn't you take him straight to St Barts!"

I'm a strong person but I could feel the tears in my eyes. Surely they would want to speak to a consultant who knows Steve and understands better than anyone and that I needed to bring him here as St Barts is over an hour away and I was desperate. Why when you need things to be easy they aren't. Well as I've said I'm strong and in my best work voice convinced the doctor that Tom was expecting his call!

Tom called me about 10 mins later to explain what they were going to do, which in a nutshell was stabilise him and then arrange for him to be moved to St Barts where they could get his pain under control and also get to the route of the problem. Ironically about 40 mins later the A&E doctor came and told me the same thing :-)

So with a plan in place and multiple x-rays Steve was moved to another ward, which was an assessment ward, where he stayed for the night.

Steve didn’t have a good night but at long last we got some luck and he was cared for by an amazing nurse called Gemma, she had all of the qualities that you would want in a nurse, she was compassionate, caring, organised and she helped Steve all through the night, dealing with the pain and making sure he was as comfortable as he could be.

On Sunday Steve was moved by ambulance blue light and all! to London. 25 minutes!! Wish I had one I could stick on my car!

The journey was terrible, Steves pain was so bad and he started to shake and sweat again. He was given some gas and air to help with the pain and must have nearly used the whole canister!

By the time we got to the ward Steve looked and felt terrible, luckily we were greeted by all of the old familiar faces. All rushing into action to get Steve comfortable. They had been expecting him and Tom had been on the phone, with his instructions to the doctors on duty.

Whilst all of the x-rays and tests showed Steve had constipation, the doctors here were just not convinced that this was all of the problem and they were running tests and x-rays / CT scans and MRI all afternoon and today to find out what else is going on.

They think they may have the answer but are waiting for some results. They think that the tumour where Steves kidney was, is pressing against some nerves at the base of Steves spine. Which is causing immense pain, which is radiating around his body.

With this thought in mind, they set about ensuring Steve was out of pain!

Several morphine shots and a sedative and Steve finally was asleep and out of pain.

I've been lucky to not have been in extreme pain but seeing someone in that amount of pain, you can almost feel it. Wanting it to go away and go away quickly.

Steve slept all night and when I came up this morning looked and sounded like his old self! You could tell the pain was better controlled by the colour on his face and his desire to eat and bossiness!!! :-)

Tom came and saw us today and spoke Steve through the plan. Basically get the pain under control, get his bowls working on their own, set meetings up to talk to the private consultants about next steps for treatment and then home!!!! Oh and possibly some radiotherapy on the tumour which is causing the most problems!

Fingers crossed Steve will be out on Wednesday for the football! But if not then at least we are in the brand new ward at St Barts with a flat screen TV in the lounge area! I'm sure that will be a popular place for the patients! And wouldn’t be surprised if Brian comes up as well!!

Well I'm still set to do the bike ride, as Steve really wants me to do it. And luckily with the support of great friends and family, they are rallying round to get all the tuff I need. Lets just hope I have the energy to do it!!!

I will update tomorrow on Steves progress. Thank you for all of the lovely messages and help, it so much appreciated and as they say it’s the small things that make the difference.

Goodbye Sutent and Goodbye Tom

2010-06-18T22:15:00.002+01:00

We went to see Tom today, not yesterday as originally planned. It was a fairly short meeting and Tom got straight to the point.

Basically Tom told us that the scans showed the cancer in Steves lungs and kidney bed had grown, by about 30%. On top of this there is now a cancer tumour in his liver.

I'm still not over the shock of it, as much as I thought it wasn't going to be good. As Steve has been really in pain and have seen Steves quality of life change a lot I didn't expect this. Steve is doing okayish but as you can imagine has shook us but in Steves true to form fashion has already started to think of the next steps.

Due to our utter ridiculous NHS system and the terrible decisions by NICE (deciding body of NHS money!) Steves only option is to go private. Luckily we have Bupa and Steve has this option but I cant help but think where would we be, if we didnt have it. But we do have Bupa so need to use my energy thinking positive about this.

Tom was very clear and determined of the next stage, Afinitor is the drug that Tom feels should be Steves next step but as Ive said above we cant get this on the NHS so as Tom only works on the NHS he cant work with us directly anymore, that said he had already been on the phone with 2 fellow Kidney Cancer professionals who do practise both on the NHS and privately.

We are going to meet both of these guys next week one called James Larkin, who we have seen previously at the Royal Marsden and one called Simon Chowdhury who practises from Guys Hospital. Tom carried on to tell us, that he wants to be involved and wants Steve to come and see him once a month, he then spoke to me and said I know this is tough but please always call me and I will help you where ever and however I can. I trust Tom I believe in him, he is a dedicated professional who has a very difficult job but one he does excellently.

Steve wants to explore the option of seeing someone locally as well, as he gets so tired going up to London and wants to make sure his time is spent in the best ways and not travelling all of the time. I can understand that but want the best for him! And the best in my opinion is to see one of the doctors above. But and this is a big BUT its not me but Steve who is going through this and I will always support him. I am here to make sure he gets the best but also the best inline with what Steve wants.

We have decided to meet the two people that Tom has helped us with and also the local doctor in Guildford. From there we can decide who to be under. Its important that we find someone who we believe in. Someone who makes us feel that we are important to them and who we trust. It going to be a hard act to follow though, as I trust Tom and I know that Tom believes in Steve and wants the best for him and goes out of his way to make us feel that.

So for now, we need to get our heads around this and to gather ourselves and get the next step sorted out. Oh and between all of this Ive got to cycle to Paris. This time next week I will be half way through my cycle ride to Paris. Please, please, please sponsor me, now more than ever I need to ensure that Kidney Cancer gets the funds and awarness it need to ensure we do something so we can stop other people having to go through this journey. My link is on the right hand side of this blog.

I will update following on from our meetings with the doctors.
x x x

Back home

2010-06-13T21:04:00.000+01:00

Steve had a better night last night and got some sleep. His pain still continues and is particularly bad when he is laying down.

The doctor came round at about lunch time to say the x-ray came back good and that if Steve felt okay he could go home..

As you can imagine Steve jumped at the chance, almost literally! Before the doctor had even left the room, he had got out of bed and was gathering his things up. As nice as the Runneymede is, their is nothing quite like home!

In fact as soon as Steve got home, he was checking over the Garden to see how his grass was and the plants.

We have some variation on the medicines, which we are hoping are going to do the trick and the scans, so we can send them to Tom.

Thursday is the day this week, as we will get an insight into how the cancer is and whether Steve will go back onto Sutent.

I will post again after Thursday, unless anything changes of course and at the moment who knows! This week, has been a real blur for me, it was only a week ago that I called the ambulance and at times it seems ages ago and others just like yesterday.

Thank you for all the well wishes, it means alot to Steve and I to know we have such great friends and family.

Sleep Where Are You.......

2010-06-12T23:48:00.000+01:00

Steve is still in hospital and still no sleep.....but still pain and terrible stomach cramps.

He had a very hard night last night, he was given some medicine before he went to sleep and was supposed to then be able to sleep but he wasn't able to. The stomach cramps were as painful as they have been in the past and he couldn't get comfortable.

Finally at 4:48 sleep came and pain went. A very exact time but exactly what Steve told me, as I wasn't there.

Today he was pleased to see some visitors but was desperate to sleep and to get comfortable.

I decided to kill two birds with one stone and cycled to the hospital, as I'm anxious to see Steve but very worried about the impending bike ride which is now less than 2 weeks away, so again another plea..... if you have not sponsored me then, please do! As I need every penny for the charity. Louise and Gary ran a stall at our local village fair today to raise money for the bike ride, so I went along there between being at Megan's school as they had an event. I tried to take lots of photos so Steve could see the action, when I got up to see him.

This evening Steve was able to watch the football with myself and Dad and Mum but I left at half time, as I was worried about cycling in the dark!! Damn cycling!! But even though the result wasn't exactly as was expected, at least Steve got to watch it with his family.

I've got fingers and toes crossed that Steve gets some sleep tonight and I will go and see him in the morning.

Peace and Scans at Last!

2010-06-11T23:30:00.000+01:00

Steve was finally moved at 3pm today to the private hospital (Runneymede) next to St Peters.
It was with a huge sigh of relief when Steve was wheeled into his own room, which happens to be room 101! For me as I knew that he would be safe, well cared for and could get the rest he so desperately needs as well as the focus and attention of the staff to make him better. For Steve his focus was on the fact that they had a flat screen TV in the room and the world cup is about to start!!!!

Seriously though he was seen almost instantly by the consultant who had ordered him multiple CT scans, so we can try to get to the bottom of this problem.

The team at St Barts namely Tom became aware that Steve had been admitted and were concerned and actually wanted Steve transferred to St Barts, where they could take care of him.

As it happened in the end our consultant spoke with Tom and they have for the time being agreed that Steve can stay locally here but with Tom on the phone understanding what is happening. The good news is that the scans Steve had today are going to be sent to Tom, so that Steve doesn't need to go to London on Monday to be scanned for Tom.

The scans came back very quickly and showed no obvious blockage of Steve's bowl or in fact not very little constipation. This time they scanned his chest, stomach and pelvis area. So they could get a whole picture of what was happening.

Therefore the plan is to keep going with the treatment plan and keep Steve in hospital until his bowls start to work again on their own.

I'm so determined that Steve shouldn't come home until this happens, as otherwise we will be back up there again, going through the same thing. But as Dr Hewitty is not in charge at Runneymede we will need to see what the consultant says in the morning.

Steve is happy enough being in there, as he really wants this pain to be sorted out and knows the best place to do this, is in the hospital.

In fact his Dad even suggested that all in all it wasn't a bad place to be, your own room, adjustable bed, menus brought to you so you can choose your 3 meals a day, ensuite bathroom and above all peace and quiet so you can watch the world cup on your flat screen TV! In fact its already been decided that his Dad is going up there tomorrow night to watch England v USA with Steve!!!!

I hope Steve gets a better nights sleep tonight, as he is totally exhausted and needs to rest, so he can battle again tomorrow through the pain. Unfortunately Steve's pain is worse at night, so I just hope that the staff can support him through, so he can rest. I'm off to bed myself now and hope tomorrow brings positive news and good weather as I must go for a bike ride otherwise I will not make it to Paris!!!! Less than 2 weeks! And am trying not to count!!

Back in Hospital

2010-06-10T23:50:00.000+01:00

Steve is back in hospital and this time it will be for a few days.

After we came home on Sunday Steve has been managing with the pain and with help of the local nurses and doctors it has been bearable but we haven't managed to get to the route of the problem.

Last night the pain came back with the intensity that it had on Sunday but with 30 mls of Morphine we were able to get it under control. Not enough for Steve to sleep through the night but enough for the pain to not take complete control,

This morning, Steve in his usual way battled with the pain, whilst trying to focus on other things. Till it got to the point of absolute agony. I've never felt nor witnessed pain like it. Steve was crying out in pain, whilst holding his stomach.

After several calls to hospitals, hospices, doctors etc it was decided that Steve needed to go back to hospital.

So with a letter in hand and me driving, trying to be calm, we went to St Peters.

We went straight to the Surgical Assessment Unit (SAU to those in the know!) which is a strange place, right next to the operating theatre, a row of beds with people waiting to be assessed to see if they need surgery!

5 hours later! we were seen and told that Steve needed to stay in hospital.

Which is where I've left him tonight, in a ward with 2 other men, 1 who is in his 80's who is as deaf as a post and his earring aid battery has died, so he has to shout and everyone talking to him has to shout and another guy who has pancreas problems.

It made me realise that everyone we come across is old! Not old in the same way that our kids look at it, i.e. grey hair but properly old! Retired old! Lived their lives old! I cant help but think but why are we there! Why are we with lots of old people who have lived their lives, seen things, done things. Please don’t get me wrong I don’t wish for one minute ill health on anyone but when your old it surely is different? You have the memories, the experiences to look back on, the children who are grown up but why are we there? Why is Steve there? At 41 years old, the life and soul of the party, the one who has and still has everything to say.
But we are there and we need to make sure were not in there for too long!
Which is where I can and will make a difference.
Steve shouldn’t be in a room with 3 guys he doesn’t know, on a stretcher type thing, where the sheet doesn’t even make it around the bed. This is where I can make a difference. Tonight Steve will spend the night there but as soon as the clock hits 8am (this is when BUPA opens!) I will be on the phone to BUPA to get him moved to the private hospital, where he can be treated by the same people but in comfort! Life for everyone is too short to be spent in that environment. I know its probably just me, that’s thinking this but I cant stand to leave Steve and especially in a place like that.

I'm off to bed now, with the alarm loudly set.

I will update tomorrow.

x

Tough Time at home

2010-06-08T09:23:00.000+01:00

Firstly sorry for the long time between posts it has been a tough time at home over the last few weeks.

Steve finished his 3rd course of Sutent last week but even though we thought being back on Sutent would mean that his cancer pain would go away it did not and Steve struggled through with the side effects of sore feet and struggling to eat, due to everything tasting awful and on top of that the cancer pain in Steve’s side and total exhaustion, we were counting down the days for the Sutent to stop!

Steve was and is his amazing self with all of this and kept on going, focussing where he could on other things and when he was well enough has been out in the garden, which is now looking so beautiful! But other times struggling to get out of bed and to deal with the pain.

As much as we have been so looking forward to Sutent stopping and the 2 week break the pain has really started to take its toll on Steve. He is now having to take many different pills and luckily we have a great pill box so myself and the girls can sort it out each week into the little compartments!

Over the last week, Steve has had a new complication! He has had the most terrible pain in his stomach and chest, which would come on morning and evening. We were able to control the pain with liquid morphine but each time it took more and more.

Sunday morning, the pain reached a whole new level and Steve struggled to breath. His breathing became more and more shallow, with each breath came more pain and it was more and more difficult to manage, the normal amount and some more of morphine did not help.

At 10:30am I had to call an Ambulance, it was the most frightening thing I’ve ever seen and had to do in my life. Steve was laying on the sofa struggling to breathe, whilst holding his heart, getting more and more pale. Luckily Steve’s parents were here so they could help whilst we waited for the Ambulance, with Steve’s Dad outside desperately looking for them and Steve’s mum holding Steve’s hand whilst I rushed to get myself dressed and all Steve’s medicines together. Oh and Megan who had to sort out putting the dog away, as Ambulance crews wont come into your house unless all animals are shut away.

It seemed like forever for them to arrive but I know now that it was only about 5 minutes but in that time Steve’s breathing really became difficult and everyone was trying their best to be strong but faced with a situation that you know nothing about and your loved one in so much pain made the whole of time seem to stop.

Steve was taking to St Peters hospital by Ambulance, with his Dad and myself, Louise and Muriel (Steve’s Mum) following behind in my car.

I realised at this point I had simply not thought through what I would do in this situation I was totally unprepared and above all I was so scared.

As awful as it was for me and Steve’s parents and Meg I cant imagine what the feeling must be like when you simply cant get a breath. Steve was so strong and calmed down once the ambulance crew arrived. I went into auto pilot telling them exactly what Steve’s history was and explaining how he had blood clots previously. To the point the ambulance crew thought I was a nurse! Not a nurse of course just someone who has been with Steve through every step, knowing when he is in pain, even when he is trying to hide it from the rest of the world. Knowing the large array of drugs and operations he has had and above all trying to help and support my best friend and someone who I love so very much.

Once at the hospital Steve was assessed by an extremely laid back young Jamaican doctor. They did rule out any problems with his heart and sent him for an x-ray and CT scan of his chest. Both showed that he didn’t have an blood clots. Which was a huge relief but they did of course show Steve’s cancer but this of course we knew about. Steve’s x-ray did show however he has serve constipation, with a build up all the way through his large bowl up to his diaphragm

This they think is definitely the problem with the stomach pain and possibly causing the breathing issues.

The trouble is that Steve has to take so many tablets for his cancer pain that this has a side effects of constipation. Constipation to most is an inconvenience and slight pain but when it reaches the level as it has in Steve it is a serve pain and terribly hard to manage.

They have given Steve some more medicine! Another one to add to the list, which apparently will help. However it tastes awful! And I can say that as Steve made us all taste it!

We left the hospital late in the evening with Steve still in his dressing gown and no shoes! I must remember to take some shoes for him if this ever happens again.

Since we have been home we have had the district nurses around and they have been trying to help us and we saw the doctor at the hospice yesterday that is also going to help us. What I didn’t realise was that there is a whole network of people who can help, you just need to know where to look and to most importantly not be afraid to ask for help.

I will post more regularly as I know people are keen to know how Steve is. It just sometimes with everything going on its hard to find any time in the day, to get just the basic things done. I’ve got to the point now where I need more help. Steve isn’t really able to be left all day, not that he needs help with personal things, its just simple things like making sure he has take his medicine and that he isn’t struggling too much with the pain. I cant be here every day as I have to work but equally it is very hard to leave the house knowing that Steve is in a bad way.

Oh and its about 2 and half weeks away till I do the bike ride to Paris! I cant believe it! I am now starting to panic about that! But more of that another day! But if you can sponsor me and haven’t done so yet, then please use the link at the top of this page

3rd Course of Sutent

2010-05-03T22:47:00.000+01:00

Steve started back on Sutent on Friday and as strange as it is to say it I was looking forward to it.

Steve is in so much pain at the moment with the tumours that it is making life really tough for Steve. The pain comes on when Steve sits down or lies down and as he is an active person it is only in the evening.

How awful that at the end of the day when the most of us look forward to relaxing, that Steve knows his pain is going to come back and with such intensity that you just cant get comfortable.

I have found an old lavender wheat bag, which I put in the microwave and heat up. The heat on the area where the pain is helps Steve but doesn't make the pain go away. We have increased the morphine but even these aren't taking the pain away.

Steve typically gets a couple of hours of sleep before the pain returns. He does his best to not wake me up but I'm a light sleeper and want to help him where I can.

Its awful to see Steve in so much pain and not be able to do very much to help him. I do my best with my magic hands to give him a massage and of course the wheat bag and the medication but apart from these things I just try and be there for him. I'm not at my best in the middle of the night but do my best.

It is very strange as during the day Steve is quite active and is slightly in pain but nothing like the pain he feels when he sits or lies down. People who see Steve during the day comment on how he looks okay and he does, to the point, that if you didn't know he had cancer you wouldn't be able to tell, unless that is you know him very well.

When we met Tom he did say to let him know if the pain continues after he starts taking Sutent, tonight is the 4th night and so if tonight is the same, then I will call Tom tomorrow.

I will update in the next few days regarding Steves pain. Lets just hope the Cancer pain goes away before the painful side effects of Sutent return! So he can have some time pain and side effect free.

Mixed Response

2010-04-23T17:36:00.000+01:00

As the title of this blog says yesterdays result was a mixed one.

Whilst it was good news that no NEW cancer had grown and most of the cancer tumours stayed the same size, some of them had grown. Particularly 2 on Steve’s lymph nodes. Tom went on to explain that the lymph nodes are not high on his priorities of concern, if it had been on the lung tumours this would have been more of a concern.

This result does mean that Steve will stay on Sutent and will continue on it, in the same pattern 4 weeks on and 2 weeks off, for another 2 cycles.

Which means in about 11 weeks he will be scanned again?

Tom on the whole was pleased with the result but I couldn’t help feeling somewhat down. I don’t really know what I was expecting but I suppose going back up to the hospital and waiting for the appointment brought it all back to reality. Steve was okay but like me was somewhat mixed with his feelings.

We couldn’t be happy because Steve still has cancer and some of it has grown, however on the other hand we couldn’t be sad as no new cancer had grown. I just suppose this whole journey is going to be like this.

Whilst on Sutent Steve suffers terribly with his feet and towards the end of his last course, was finding it very difficult to walk but within 48 hours of stopping his feet got better but within the same time frame his cancer pain and the inability to sleep at night has returned. How cruel is this all. Whilst not on treatment he is in pain with the cancer and whilst on treatment he has pain from the side effects.

Tom did briefly discuss the possibilities of radiation in the area where Steve feels the pain from the cancer and asked us to monitor the pain once he goes back onto Sutent, which will be next Friday.

We dont really know what radiation will entail but do know he can’t be on Sutent when he has it done and it will involve many trips up to the hospital.

Today Jane our local Macmillan nurse is coming round to help Steve with the pain and hopefully this will mean the pain will reduce at night. She is a great person and is so helpful with advice on pain medication and is determined to help Steve manage his pain, so he can play golf and cricket! :-)

I will try and be better at updating the blog but at the same time, we are trying to enjoy the weather and move our garden project along, so that we can sit on our new patio before the sun stops shinning, which could be at any time!!! So if the weather takes a turn for the worse, then you will know that our garden project has finished!!

Is Sutent Working? Scan and Results this week

2010-04-21T18:50:00.002+01:00

A quick update Steve finished his 2nd round of treatment last Thursday and went to the hospital on Tuesday for his scan, we will then go back again tomorrow Thursday 22nd to get the results.

We are trying to not let this dominate our thoughts too much, as their isn’t anything we can do, to influence the results but we are obviously hoping that the drug is having an effect on the cancer.
Steve reminded me tonight to not get my hopes up and honestly Im trying my best not to but we surely do deserve some luck and I really want Sutent to have at least kept the tumors at the same size as they were on the last scan.

Steve’s pain medication seems to be at the right levels as his pain is most of the time under control but his feet are incredibly sore which is a side effect from Sutent. If the drug is working then Steve will start back on it in 2 weeks time. If it isnt then its back to the drawing board to look at other options!
Some of you may have heard David Cameron mention Sutent on the Political Leaders debate last week, where he highlighted a guy called Clive and his fight to get Sutent available along with other legally approved drugs. It is still an ongoing fight and one the James Whale Fund are supporting I myself have been writing e mails to our Political candidates to get thier opinons. Steve thinks Ive gone a bit mad but just cant help it!

With the James Whale Charity in mind I thought I would let you know that my cycling is going well and I managed 40 miles on Sunday but it really is a tough challenge!! Especially not helped when you fall off, as I did twice this weekend! Tried to be flash and bought those shoes which clip straight onto the pedals! Hence why I and the bike went stage left twice over the weekend! Oh well as long as I make it to Paris and the sponsorship keeps coming in, then its all worth while. Please if you havent managed to sponsor me yet then if you can afford it, my link is on the top left of this blog.

I will post again tomorrow once we get the results

.

All the Gear and No idea!

2010-03-14T20:51:00.000Z

Well its official I cant sit down!! And the thought of sitting on a saddle is making me feel quite weak!!

I finally upgraded my Mums bike for a "proper" road bike! And at the same got myself all of the "gear" - Gloves, Helmet, on bike computer thingy, water bottle, clothes, padded shorts!

Steves comment "All the gear and no idea!" and never a truer word spoken!

I look like I could leave tomorrow and take part in the Tour de France until I start to pedal!!

But I did manage to complete 28.5 miles yesterday! And yes the .5 is very, very important! I did it in 2 hours 20 minutes which isn't bad but would have been alot quicker if it wasn't for the damn hills! or in fact the inclines!

I now look at roads very differently when I'm out driving and notice the inclines! I bet many of you didn't realise that Chobham high street has one! And yes you may laugh but when your coming home all you want is down hill!!

Whilst out yesterday I was going to pop in and see a friend until I remembered she lived on a hill and that put a stop to that! Will have to phone her instead! Sorry Clare!

So...... for all of those of you who have sponsored me then thank you and for those of you who haven't here is the website site.

http://uk.virginmoneygiving.com/arctoarch

I'm really trying to raise as much money as possible for the Kidney charity as possible. They have been already an amazing support and strength to me and it is so important that this bike ride raises as much as possible, so they can help many more unfortunate families when they are living with this terrible disease.

Unfortunately Steve is not doing great at the moment. He is now suffering terribly at night with the pain from the tumour of where his Kidney was taken out. He cant sleep all the way through the night even with the medicine. We have been trying so many different things that our cupboard is so full of medicine that I have had to buy Steve one of those pill boxes with the days of the week on it!

It is so sad when you let it be. If you think things through to much then it can make you feel terribly low but most of the time you take it in your stride and deal with it as though it was perfectly normal. On a positive note his rib now appears to be healed.

He will start back on Sutent next week, as the hospital wanted him to have one more week off to try and get him back to feeling better.

So he has gone away for a rest and some motherly pampering to Spain for a few days which we are both hoping will do the trick.

So a chance for me to get a full nights sleep and some more biking in! Oh and of course work! And a chance for Steve and his parents to spend some time together.

Steve and his cracked rib are home :-)

2010-02-25T22:41:00.000Z

At just after 5pm the doctor came round to tell Steve and I that the bone scan had come back confirming a cracked rib but everything else was clear.

I let out such a huge sigh!! I know it sounds strange but was so happy it was a cracked rib!! I feel like I haven’t let out a breath since Sunday night when he was so bad. I just couldn’t help think of all of the things that it could have been and when they said they were sending Steve for a bone scan, my mind went into over drive.

Steve looked at me puzzled after we were told and when I explained my fears! His response was don’t be silly of course it was only a cracked rib!

I really should learn to deal with all of this more like Steve and as much as I would love to I know I’m simply a born worrier! But hey he is home now and I’m so pleased.

He is stopping Sutent as of today as it has been 3 weeks and they have decided to stop it a week early so his body can recover. He will then re start Sutent in 2 weeks time. Back on to the regime of 4 weeks on and 2 weeks off.

So its lots of rest and more morphine for patient Wright, whilst he recovers from this and a full investigation into how he got a cracked rib in the first place! Which Steve is convinced I did to him! But the jury is out on that one! As I think it maybe from his skiing escapade with Ginge!! But I’m sure Steve if he hasn’t already will share with you his theory of me kicking him!! And my plea is that it was in self defense your honour!

Bones Scanned

2010-02-24T22:46:00.000Z

Steve finally had the bone scan this afternoon. He had to go down twice as they have to inject some radiation type stuff into you and then leave you for a few hours and then scan you.

He was given a letter explaining that he couldn't be in contact with children or pregnant woman for 24 hours and as it was Jason and I sat with him, their was no danger of that. Steve has had this done before last year but given now all of the scans he has had, he should be glowing in the dark!

We don't know the results yet but we should be told tomorrow.

Steve is adamant that I go into the office in Watford tomorrow for my meetings and then come up to the hospital. I really would prefer to be with him when he is told the result of the scan but I know better than to keep arguing with Steve about such things And as Thursday is Toms clinic I hope I get there before Tom does the rounds.

Steve is hoping to be out tomorrow and then is already talking about a convalescent trip to Spain!

I am really hoping he comes out tomorrow as this house is just too quiet without him, the kids and Dudley the dog!

No Scan but Pain under control

2010-02-23T22:44:00.000Z

My guess was right, maybe I should add Psyche to my list of duties......... or simply someone who has gotten to know and understand how the NHS works.

Steve didn't have a scan today as their were no available slots. He is however in alot less pain and has spent most of the day in and out of sleep. The morphine is really helping and means he can finally rest.

I spent the evening with him and he looked so sweet dressed back in his blue and white stripped PJ's.

He was very pleased to see me when I arrived but think the Steak and Cheese Subway had something to do with that!

Tom came and saw Steve today and said he now thinks that the x-ray does show a small fracture in his rib but that he should still have the bone scan. I don't want to turn into Dr Hewitty again but I'm adamant that Steve should have a bone and or MRI scan before he comes out, to make sure nothing else is going on.

I left Steve at just after 9 to come home and felt so sad. I hate leaving him behind and coming back to our house alone. It just doesn't seem right. I know he is in the best place but it stirs up all of the emotions of how unfair this whole thing is. I listened to people chatting on the train about their lives and wanted to be back in the place where the topic of conversation was so trivial. Steve and I will and do still have lots of fun, so I'm not complaining just wishing that things could be so different.

Poor Steve in the hospital ward surrounded by 3 guys coughing and spluttering and talking very loud on their mobile phones. Saying that Steve is giving them a run for their money on the farting front!!! The kids have just come to except that the loud and smelly farts are part of Steve now and Victoria say "Safety" when ever he does it and Megan has download a farting ring tone to her phone for when ever Steve calls her! The kids are what keep you smiling.

The kids have not been to see him as its not a place for Children to go, as some of the other patients are in a bad way with drips etc but they have been speaking to him on the phone. That said if anyone is in London over the next few days and fancies popping in then I know Steve would be happy to see you. Visiting hours are 10-8pm and if you give me a call or a text I can let you know what wards etc he is on.

Well off to bed now. And will be on the phone in the morning chasing the scan. Love to all. x

In Hospital Mystery Pain

2010-02-22T20:49:00.001Z

Unfortunalty Steve was admitted into hospital today. He has been in so much pain, that we just couldnt manage it at home.

Steve has been having terrible pains in his right hand side. The opposite side to where he had the kidney removed. The pain is a very sharp pain and feels like it could be a rib that is cracked. However after an xray and an ultra sound where nothing showed up they really dont know what it is.

Steve and I came upto the hosptial last Thursday to see Tom for a Sutent check up and the scan results from February. Sutent is having side effects but they dont think the pain is related.

Whikst we were in London Steve told Tom about the pain, which he has had for a couple of weeks. Tom arranged for a xray and a ultra sound that afternoon. But nothing showed up so we were told to go home and for Steve to rest.

Rest has been very hard, as Steve is in so much pain that any movement or cough gives him shooting pains. Over the weekend the pain got worse and worse, which ended up in last night Steve being awake most of the night and even though he finally relented and let me give him morphine it didn't help. It was an awful night, with Steve becoming more anxious and the pain taking complete hold!

This morning I was straight on the phone to anyone who would take my call. At lunch time today I heard that Steve had a bed in GHF ward at St Barts.

Which is where we are now.

Given how much Steve hates hospitals I thought it would be a terrible row to get him to come but quite the opposite. He wanted to come as he is in so much pain that he cant continue.

We were seen as soon as we got here by so many familiar faces, all saying hi and wishing Steve well.

Tom was here with Louise the registrar. Both are very puzzled by the pain and are not sure what it is. The area of the pain is not near any of Steves organs and doesn't appear to be coming from his spine but they both can see how much pain he is in.

They immediately gave Steve some morphine and have ordered for him to have a bone scan and MRI tomorrow. Where they are hoping will shed some light on this pain. In the mean time they will be keeping the morphine coming so Steve can get some rest.

It brings back so many memories for Steve and I this ward, of the awful time he had on HDIL2 and we have both been talking about the time and wondering if anyone else is having it now.

I'm going to go home soon and leave Steve to sleep. We don't have any idea what time his scans will be tomorrow but my guess is that they wont be quick but as long as he isn't in pain then waiting isn't a problem.

Once I have any more news will post on the blog.

Disgusted from Chobham! - Oh and Tom the TV Star :-)

2010-02-11T07:30:00.000Z

What a SHAM!

I wanted to share with you all the terrible state of our UK NHS system!

In a nutshell the governing body that decides what the NHS can spend their money on ruled yesterday that anyone with Kidney Cancer has 1 chance at a treatment and then after that should not be given / funded with any further treatment.

The National Institute for Health and Clinical Excellence ruled the drug Everolimus (Afinitor) too expensive to fund despite the fact that it’s a proven life prolonging drug for kidney cancer patients.

This ruling is a terrible and cruel blow to everyone with Kidney Cancer. As it means after your one try at a drug then you will be left with no options on the NHS. If we lived in any other country in Europe or in fact the world then this would not be an issue.

Below is a link with all of the coverage on the story and some of you may have even see the famous "Tom!" on the ITN news yesterday.
http://www.jameswhalefund.org/page_583.html

At present this doesn't effect Steve but when Sutent stops working it will become very much a reality for us. It is an awful feeling to think that not only will your life be focussed on trying to beat cancer but on top of that wondering how you can afford it!!!!!!

So often Ive read in the past or seen it the newspaper but when its your loved ones life it takes on a whole different meaning! And I know and understand the argument about the NHS not being able to pay for everything but when you see the terrible waste of money in this country then you have to begin to wonder about our priorities!

On a positive note if we ever need reassuring that we were under the best place for care then this has proved it to us. Tom is a wonderful doctor and a wonderful spokesperson for all of those who are suffering with Kidney Cancer.

As you know Im taking part in a cycle ride and the chap that's organising it also writes a blog and below is a link to his latest post. It sums up for me how the UK needs to be taking this whole issue much more seriously! Read and Smile

http://www.kidneycancerbloggers.com/2010/02/todays-bbc-lead-health-story-not-about-afinitor-or-kidney-cancer-but-“does-my-bum-look-big-in-this/

Under Way with Sutent

2010-02-06T14:13:00.000Z

At 11:30pm last night Steve finally took the dreaded Sutent tablet. We were both so nervous and its amazing really as they are such small un offensive looking pills but knowing what they can do to your body it was with real fear that Steve took the first one. And fear for the side effects and apprehension that they will work to control the cancer. As Steve will need to be on these for the rest of his life or until they stop working or the side effects are too bad.....

We really didn't know what was going to happen and when it may happen! As everyone reacts differently.

In preparation for Steve taking it I had done some research (surprise, surprise!!) and found out that one of the side effects is something which can effect your hands and feet. Blisters and skin cracking on the bottom of your feet and palms of your hands. Which if you get this then obviously walking and particularly playing Golf! are near impossible! And once you get it, it is hard to treat!

So I discovered through speaking to people who have been on Sutent or care for people on it, that the best thing to buy is Udder Cream! And yes this is what you think it is! Cream which farmers use on cows udders! But apparently it is the best thing to rub onto your hands and feet to stop the skin cracking.

Thank goodness for the internet as their aren't many Farm supply shops around here! It was funny really as when I ordered the cream the website asked me what type of cow I had! :-) Was tempted to type in moody but that wasn't one of the options!

Once Steve got over the description on the side of the pot which talked about wiping the cows teats before milking then he has been using it 3 times a day! He is going to have the smoothest feet and hands in Chobham.

Steve slept okay but was awake in pain but this to be honest is what happens most nights. But he wont help himself and wont take pain killers! and it really doesn't matter how much I nag him he will not take pain killers!! Something to do with wanting to know how bad the pain really is. Which in a strange kind of way I understand but I find it so hard to see him in pain and as it happens mainly at night Im not the most patient with him, especially as he wont do what the hospital tell him!!!

Luckily so far he hasn't had any side effects apart from being tired but watching the golf this morning has seemed to help! :-)

We are now waiting to see what other things will happen as a result of the tablets. But are prepared that sickness and diarrhoea are likely and we have tablets for that! Oh and apparently its likely that all of Steve's hair will turn white! The kids comment on this was shame its not near Xmas otherwise he could have played Santa Claus!!!

Steve has a follow up appointment in 2 weeks time to check on how he is doing and he has a scan planned for next week so that they can compare how the cancer is growing since December and then when they scan him at the end of the 1st cycle of Sutent they can see if Sutent is working.

And finally I've been out my bike!!! 6 miles! not too far but far enough for it to really dawn on me the size of the challenge that I've taken on!!

Sutent it is........

2010-01-23T21:55:00.000Z

Well Sutent is now going to be the next drug that Steve is going to take. We heard this week that Steve was not eligible for the trial due to his blood clots and the trial states that you cant have had blood clots for at least 6 months and that would be April and Steve cant wait that long to start the next course of treatment.

Steve and Bryan (Steves Dad) went to London to see Tom and they agreed that Steve would start Sutent on the 5th February. So Steve and I will go to London on the 4th to get the drugs and also whilst there Steve will have a scan, so we can compare where the cancer is now to after the 12 weeks of Sutent when he will have the next scan.

Steve will take Sutent for 4 weeks on and then 2 weeks off. Then the cycle will repeat and after this Steve will come back for a scan. In the first cycle Steve will go back to London for a check up to ensure his blood pressure and side effects are not too bad after the first 2 weeks.

The reason Steve isn’t starting until the 5th is that he is off Skiing! He is taking Victoria and going with Ginge and Oliver. They are going away for a long weekend and from what Ive heard they are intending to do some skiing and having fun with the kids. I was invited only when they realised that they were going to need to stay in during the evenings but I graciously declined!! Anyway who are they kidding! They will be just as exhausted as the kids!

As Steve is expecting to get some side effects we are looking to make the most of the 2 weeks that he has off and in between my work and cycle riding! And no I haven’t started yet but do now at least have a bike potentially coming! Then we are looking to go away together and then with the kids.

I will update in the next couple of weeks when Steve has started taking Sutent and fingers crossed his side effects aren’t too bad!

Thursdays Update

2010-01-17T22:55:00.000Z

Steve and I went to see Tom on Thursday, sorry for the delayed update

Tom spent time with us understanding about our road trip and what we thought about the information that the doctors had given to us. Both doctors had written to Tom so he had an insight into their thoughts and he was more interested in what Steve thought of it all.

Tom felt Steve didn’t need to have a MRI scan as he is sure that the pain is coming from the growth in the cancer where is the kidney was and the best way to deal with this is to start Sutent as soon as possible.

Tom explained how Sutent would work, which is that you take 1 tablet everyday for 4 weeks, you then have 2 weeks break and then start again. So basically a cycle lasts for 6 weeks, where 4 weeks you are taking a tablet and 2 weeks your not.

After 2 cycles (12 weeks) Steve would be scanned and dependant on whether the tumours have stayed the same or shrunk then Steve would continue. Tom would see him before each cycle begins, so every 6 weeks to monitor him.

Sutent like most drugs does have the potential to give you side effects and not particularly nice ones at that: Sickness, Diarrhoea, Swollen/Sore hands and feet, Weight loss are just a sample of them!

That said not everyone gets all or in fact any of them but Steve is worried that he is going to get side effects as bad as he did on HD IL2 and that is understandable but Tom and Wendy (our fantastic Macmillan Nurse) have lots of things that can help the side effects.

Steve would remain on this drug, until the side effects became too bad or the tumours started growing again. They say on average this drug will work for about a year but who would ever put Wrighty in the average box!!

There is just one more avenue that we are looking at before Steve starts Sutent. Which is a clinical trial which is running across the UK and in fact across the world. It is being run by a drug company as they are at the final stages of wanting to get their drug licensed. The trial is call Axis and is being run in Cambridge (which is where we heard about it from) and London, so if Steve got excepted then he could do it under Tom's care. It is a hard trial to get on and so with Steves previous blood clots we dont think he would get onto it but Tom and or Tim (not sure yet!) are going to put Steve forward and we will see what happens.

So by Thursday a decision will need to be made.

Steve and Bryan are going to see Tom (I am unfortunately away in America with work) to let him know what Steve would like to do. I have however written notes for Steve to take so he remembers everything!!

Which is:

Join Trial or if not accepted start Sutent at the begining of February.

The reason for February is that Steve and Ginge (Simon) want to take the kids Skiing and it is better if Steve does this before he starts the treatment.

Oh and some new pain medication as Steve is now getting quite a lot of pain, it is mainly at night but is now creeping into the daytime as well. He is so brave and doesnt make as fuss but I can tell. Mr Wright is not being very good at taking pain killers! He doesnt want to take them! and Im nagging him to take them and now Wendy and Tom are too. Steve shouldnt be in pain and if he is not taking the pain killers then he is choosing to be in pain! Rant over! Its just I hate to see him in pain and want to help him so much but he needs to also help himself.

So Thursday decision will be made on Steves next course of treatment and I will update when Im back from America.

Home with some answers and thoughts

2010-01-12T23:34:00.000Z

Well after 2 days driving "up North" Steve and I are home. Well if your going to do a journey across the UK why not do it when the roads are snowy and icey!!

That said our journey was fairly event free, apart from when we were turned back from one road across the Pennines which was covered in 6 feet of snow!
I know, I know Cambridge, Lincoln and Manchester don't really count as across the UK but we are southern softies after all!!

I have to say how lucky we feel that we have managed to see the top people in the UK and how both of the Professors that we saw gave us a great deal of time and were happy to answer all of our questions.

Yesterday (Monday) we saw Prof Eisen in Cambridge who spent nearly 2 hours with us listening patiently and asking lots of questions about Steve's cancer.
He felt that with Steve being a young fit man (Steve liked these comments!) that a clinical trial should be a consideration. The problem maybe that as Steve has had blood clots then this maybe a problem to this approach. However the Prof was going to look at this. He strongly thought that we should look ahead and look outside of the UK but use this approach for the future. Sutent an approved drug in the UK should be a consideration and this ties into what Tom spoke to us about. Prof Eisen had concerns over Steves pain in his side and felt that Steve should get a MRI scan on his back to rule out any possible cancer in his spine. And definitely before he goes skiing!!! Yes skiing! More of that another time!

Steve was amazing and asked lots of questions and I got the famous note book out (which travels everywhere with us!) and took copious notes. I interjected at times and gave the Hewitt stare to Steve when he was being somewhat economical with the truth as far as his pain is concerned.

We left Cambridge and went to Lincoln and stayed with Windy and Jeanie who cooked us a lovely dinner and let us stay at Windys flat. It was such a nice thing to spend time with friends and laugh about other things and not focus on the day we had or the day we were going to have.

We left in the morning from Lincoln and headed to Manchester. In Manchester at the Christie hospital which is a specialist hospital for cancer I felt incredibly sad. I looked around a waiting room of people, who were all there as they or their partners had cancer I realised how many people have cancer. Possibly a silly thing to say but when confronted with a room of over 100 people all waiting to see doctors it really came to me how many people this disease effects. I also couldn't help but notice how young Steve was compared to everyone else. Selfish thoughts of "why" Steve kept coming into my mind. I struggled to see anyone within 10 years of Steve in the waiting room. Steve being Steve was his usual self being upbeat and putting on a fake northern / Liverpool accent "Calm Down, Calm Down!" was what he kept repeating. I did point out that we were in Manchester and not Liverpool but think Steve's repertoire was limited to Liverpool! Where would I be without Steve's amazing attitude to all of this. He enables me to be positive but also means we can be ourselves together.

Prof Hawkins felt that whilst IL2 had been somewhat effective it was not conclusive enough for Steve to continue, though he is going to contact Tom to see if their maybe an outside reason why IL2 didn't work so well on the 2nd time. He felt we shouldn't completely disregard immunotherapy for the future but for now go onto Sutent. And then in the future when Sutent stops working look at a 3rd line treatment with IL2 in it. He told us about a hospital in Washington the National Cancer Institute (NCI) which runs clinical trials which would welcome participants from outside of the US. He told us about a patient of his, who is a doctor who has looked at this as a future next step and felt given Steve's age that we should be looking at all options inside and outside of the UK.

Whilst neither doctors told us necessarily nothing that we didn't know, to be honest we weren't expecting any different but to have the opportunity to spend time listening and asking questions to leading experts has made us both feel confident that we are on the best path possible. We feel lucky to have such a knowledgeable person as Tom on our side and that we are in the best hands possible. Both doctors and Tom have said that a positive approach and being under the right specialist makes all the difference!

So if you have made it to the end of this post and I'm sorry its such a long one, then the bottom line is that we are going to see Tom on Thursday and I will update further after we have seen Tom.

Roadtrip........2nd Opinons here we come

2010-01-08T21:34:00.001Z

Well we now have 2 second opinions arranged!! Well it is so important we see the best people, so I thought why stop at 1 second opinon when you can get 2!!!!

On Monday we are going to see Prof Tim Eisen in Cambridge and then on Tuesday we are going to Manchester to see Prof Rob Hawkins.

Tom has been amazing at helping us set these meetings up and Steve and I are so pleased that we are able to see these 2 leading experts in the Kidney Cancer world in such a short space of time.

It means that by the middle of next week we will have a clear idea of the way forward on treatment for Steve. Which is very important as Steve is struggling at night with the pain and Tom doesn't want Steve to wait the 8 weeks as he originally thought.

So I think its likely we will go to see Tom on Thursday to discuss next steps.

All of this is of course weather dependant! But where their is a will there is a way! And we sure have lots of determination to get to see these doctors.

I will of course post updates when we have seen the doctors and as always thanks for your comments it means a lot to Steve and I.

And as for the cycling challenge ....... well the snow has somewhat hampered my training plans but I will be commencing next week or as soon as the weather approves. I now have a couple of cycling companions in my brother, friend Samantha and Jeanie
And for those that have already sponsored me then thank you and if you would like to sponsor me for this good cause of Kidney Cancer then please go to the link on the right hand side of the blog.

No News Is Not Good News

2009-12-26T23:33:00.000Z

Firstly I’m sorry for the delay in writing this post but as some of you may have realised the news we got on Xmas Eve was not the news we were hoping for.

In fact it was the worst news we could have got.

Some of the cancer in Steves lungs has unfortunately grown in size and their is a concern that it has spread. Their is a suspicious looking growth in the site where Steve’s Kidney was removed and they have concerns that this maybe a new growth of the Kidney Cancer.

We arrived at St Barts to be immediately seen by Tom. Tom got straight to the point and told us that it wasn’t good news. Tom himself looked really sad and disappointed whilst he was telling us.
Steve was brilliant and I was CRAP! I couldnt keep it together. I hadn’t for one moment thought the news would be this bad. I knew that it probably wouldn’t have all gone but I didn’t think he would tell us that it was worse! I cried and Im so sorry I did I just couldn’t stop it. Steve asked all of the right questions. I so wanted to be stronger and support Steve rather than the other way round!

Tom did tell us that it wasnt all bad news as the cancer is less than what it was in June, its just not as good as it was in October when he was last scanned.
This does mean that under Toms care Steve will not get anymore HD IL2.
Steve was given 3 options.
1) Do nothing
2 ) Go onto Sutent ( A life extending drug)
3) Go on to a clinical trial - Tom thought Steve shouldn’t do this one

I did manage to speak at this point and asked if their was a 4th option of seeing someone else for a second opinion. Tom fully supported this option and said he would help to organise Steve see the consultant in Manchester who also offers HD IL2.
I dont know why but I just cant accept that their is no way for Steve to not be fully cured of this and as HD IL2 is the only way that this can happen I’m not prepared for this result to be the end of the road for HD IL2, without at least seeing someone else.

Tom did remind us that HD IL2 was always going to be a long shot and in fact he likened it to trying to win the Champions League! And said Steve had got to the Semi Finals!

Semi Finals does he not know that Wrighty is a Winner! We dont do coming 2nd, as Steve has been heard say before their is no prize for 2nd place!

That said Steve isn’t sure about the 2nd opinion.
He trusts Tom and doesn’t believe anyone else will tell us any different.
I on the other hand don’t think we have anything to loose!
Quite frankly nothing can be worse then the news we heard on Xmas Eve.
In my mind it can only improve things if we go to Manchester but all that said and done its not me with cancer, its Steve and I will support Steve in what ever he wants to do but as Brian (Steve’s Dad) pointed out their are some good golf courses in Manchester! You can see where Steve gets his thinking from!

Tom did say that Steve should have a scan in 8 weeks time to see whether the cancer has grown more, so that they can get an idea of how quickly or hopefully slowly the cancer is growing. Until this scan Steve will not take any other drugs but if Steve did want to get a second opinion from the doctor (Rob) in Manchester then he should do that as soon as possible in January.

The train journey home was awful. We didn’t talk much but sat quietly and held each others hands. I didn’t know what to say and every time I tried I could feel the tears.

So with this awful news how do you go forward and host Xmas for 12 relatives and 2 children who are looking forward to opening lots of presents!

Well you do it in the only way that Wrighty would! With a smile and a focussed approach! Their were too many things to be done to speak or dwell for too long on the news.

In a strange way it has made it easier for me, as we have all had to do that, well how can I or anyone else be down around Steve when he is able to cope with all of this.

It will be discussed and I’m sure more tears will be shed. Just not for another couple of days as the other side of the family are coming tomorrow!
So for now its back to focussing on how we are going to seat another 12 people for dinner.......

Once we have some news on the next steps then I will post some more on the blog but in the mean time thank you to everyone for your thoughts and well wishes and I hope everyone had a lovely Xmas.

Scan and Consultant Appointment

2009-12-07T22:50:00.000Z

Well we now have the dates for Steves scan and meeting with the consultant for the results.

The scan is on the 21st December and we meet with Tom on the 24th December for the results!
Yes the 24th Christmas Eve! The appointment is at 11am, so we will go up in the morning and should be home by early afternoon!

Its an awful day to have to go to London to find out whether the treatment has worked or not but like everything through this whole ordeal, Steve is taking it in his stride. Lets hope we get the same result and better than we got last time.

Steve’s shoulder and knees are still very stiff and are worse in the morning and the middle of the night. It wakes him up and he cant get back to sleep. Ive been reading and apparently this is a very good sign! That the treatment is having a positive impact. Lets hope this is right and we get the result we and indeed everyone wants.

We will be told one of 4 things when we meet Tom

1) Its all gone! or got so small that they can not see it!

2) The tumors have shrunk further but some still remain

3) Its the same size but hasnt grown any bigger

4) The tumors have got bigger or have spread to other areas

Obviously if its number 1 then it will be champagne at ours throughout Christmas!
If it number 2 or 3 then we are going to ask Tom to give Steve a 3rd round and if its number 4 well to be honest we cant bring ourselves to even think about number 4 so we will just need to deal with that if its the case.

So now we have the date and their isn’t anything to do but wait, so we have decided to focus on being very festive! The lights are up on the inside and outside of the house, so much so I think we may get a letter from the Parish council or the WI of Chobham. I keep playing Xmas tunes on the stereo and be warned anyone that comes to the house that doesnt enter into the spirit! The kids are very excited about Christmas and all of the tinsel and lights that we have decorated thier bedrooms with!

Oh and of course trying to get sponsorship and a bike for my cycle ride!

If you have not managed to sponsor me yet then please, if you can go to http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=arctoarch

I will post up here the result so that everyone can see. And please keep your fingers, toes and everything else crossed for Steve on Christmas Eve.

Anyone else for a bike ride??

2009-11-24T00:07:00.002Z

So Ive now signed up to do the bike ride! Ahhhhhhh

A few people have expressed some interest in taking part with me!

Which would be fantastic!

Below is some more information on the ride, as they are limiting it to 20 people then it is important you register in the next month. If your interested then please contact me and I can let you know how to register.

Overview
This promises to be an exciting anual Event for the James Whale Fund for Kidney Cancer. Twenty (20) Riders will be heading off on a 4 day adventure from London's Marble Arch to Paris' Arch de Triomphe on the 24th June 2010. The event hopes to raise at least £20,000.

We're keeping it to 20 riders in 2010 to ensure the event goes as smoothly as possible. So far over 40 people have said they either want to ride or are willing to help in some capacity. This is a fantastic response! We truly hope that over the years this will attract hundreds of riders.

When: Thursday 24th June 2010 - Sunday 27th June 2010

Where: London (Marble Arch) to Paris (Arc de Triomphe)

Costs
We are asking each person to raise £1000 for the charity. What they will get for this is:
The Ferry Trip from Dover to Boulogne sur Mer.
Overnight stays in hotels along the route.
Meals.
Trip back to the UK from Paris.
Shirts for the ride.
The remainder will go directly to the charity, the above will cost no more than £300

Route (Distances are approximate 250miles)
Day 1: London to Boulogne sur Mer - 75 miles
Day 2: Boulogne sur Mer to Abbeville 51 miles
Day 3: Abbeville to Beauvais 55 miles
Day 4: Beauvais to Paris - 46 Miles

If its not for you, then please support me and in turn all of those people diagnosed with Kidney Cancer by sponsoring me by clicking on the link below.

Sponsorship Page

Steve promises to come and wave me off but says he couldnt do it, as its in the middle of the cricket season! Nice to see some things just dont change! :-)

Oh and one last thing if anyone has a bike or knows how I maybe able to get one?? Then please let me know!

Patient Day London - On Your Bike!

2009-11-18T22:41:00.000Z

Steve’s shoulder is making good progress and we heard last week that it wasn’t Necrosis and was indeed a side effect from the treatment. Last week I was totally wiped out both with exhaustion and a terrible cold!

Today I went to London to the first ever Kidney Cancer Patient Day. Steve and I were both meant to go but unfortunately Steve has caught my cold!! And is full of it!!

So I left him in the care of his parents and went up to London to hear from the experts the latest in Kidney Cancer.

It was a strange day and I felt quite emotional throughout it. It was run by the James Whale Kidney Charity, which was started 5 years ago by James Whale the radio presenter from LBC as he discovered that he had Kidney Cancer and had to have his kidney removed. He found at the time that their was no where really to go for advice and as it is a rare cancer he didn’t know anyone who had been through it. James was fortunate enought that the cancer was identified early and had not spread outside of his kidney. He had his kidney removed and then went on to set up the charity to raise awareness of the cancer and to lobby for funds for research and to promote the cancer to GP's and Nurses so that they can identify as early as possible the cancer in patients.

Tom Powles was there along with 2 other cancer consultants who presented in the morning and in the afternoon a panel was formed so that people could ask questions. I realised today how lucky we are to have found Tom and given how rare this cancer is, to have one of the leading experts as Steve’s consultant is so reassuring. So many people were talking to me about their experiences and how their consultants didn’t know alot about Kidney Cancer and people were queuing to talk to Tom in the breaks. Tom came up to me in the first break to say hello and asked how Steve was and remembered straight away about his shoulder and told me to call him if we were concerned about anything.

To think we could have been under someone in Guildford who may never have treated anyone with Kidney Cancer before and to instead have direct access to one of the top consultants in the country.

Their were a lot of discussions about the NHS funding issues and how people can not get access to drugs as their local NHS trust will not pay for it. It maybe a position that Steve and I could be in but that depends on how Steve reacts to the HD IL2 treatment and if it is successful, then we dont need to but if it is not then we will need to get funding from our local PCT (Primary Care Trust) so the work of the charity to raise awareness is crucial. So ....... with this in mind! Ive agreed to do some fund raising!

An event called Arch to Arc!

Which in a nutshell is a cycle ride from Marble Arch to the Arc de Triomphe in Paris, it is over 4 days and is approximately 50 miles a day. This will take place next June. The charity are looking for 20 people to do this and for each person to raise £1000 each. Im told its not a race and people will have support in getting ready for the challenge! Hmmm I do really want to do something but as I dont even own a bike Im not convinced this is the one for me! But hey that could be all part of the challenge! And of course if anyone else wants to do it, then they are still looking for people! and I would welcome the company!

We are in the waiting part of Steves treatment and we should soon have a date for his CT scan. We are expecting it to be during the week of 14th December, which would mean we would get the result just before Christmas. As before we are trying to not overly focus on the date but it is already seeming tougher this time, so until I get a date of the scan I wont be posting on the site but instead will be focusing on getting Steve over his cold and me back to work. Oh and probably getting a bike and starting some training! But rest assured if I do sign up to do it! You will all hear about it, with the obligatory asks for donations!

We are home

2009-11-07T23:57:00.000Z

Oh I love our house so much and it is so much more than the bricks and the things in it. It is the place which Steve and I have built together. Not literally of course, saying that Steve has done alot but not as much as he was originally planning, due to the cancer but never the less everything in it, from the design to the furniture we have painstakingly put together as a couple.

Our house, is our home, it feels and smells of us. Funny to say but so true. When we come back after being away it feels so welcoming and I miss it and the times we have in it as a family.

I drove up this morning and got Steve, as I came home last night to get the car and did stop for a quick drink with Bruce and Tim. It was lovely to see them and talk non stop about Steve and how he was getting on. Sorry guys! Know you were probably planning on chatting about boys stuff!

Steve was pleased to see his Dad and I this morning and immediately sent me off to seek out the Doctor to find out when he could go home!!

An hour later and we were in the car on the way back to Chobham.

Steves Mum was waiting at home, with Megan both pleased to see us and immediatly sprang into action to make Steve a large Cheese sandwich! (Steves favorite! Fresh bread of course!)

Steves shoulder is getting so much better. He has so much more movement in it.
Steve is such a determined person! And has already decided in his own Wrighty way that tomorrow its going to be back to normal! Which is a good job as Ginge is already planning the next golf day!

Well Ive left Steve and his Dad downstairs watching Match of The Day and Im off to bed.

It is now a wait of 6 weeks until the next scan which is a great amount of time to get back to focusing on the house and Christmas! Steve has a great way of putting things to the back of his mind and unless we get any more curve balls then probably wont be posting much up on here! We do have to go back and see Tom in the next couple of weeks, for a check up, which will cause the usual battle between Steve and I about him not wanting to go and me being the over protective mother hen! But hey that’s a part of our lives at the moment! And unless we hear other wise then we are treating the shoulder as simply a side effect of IL2! And let Tom and the Radiologist battle out the other stuff!

Thank you once again for the comments and texts I cant tell you how much it makes mine and Steves day to read the encouraging words and I know Ive said it before but friends and family are so important when it comes to the battle against Cancer and Steve and I really appreciate all of the support we have got.

Home Tomorrow

2009-11-06T20:19:00.000Z

Steve is coming home tomorrow

He had the MRI scan today but it wasn’t until later on in the day and Tom has just come in to see us.

It looks like their maybe some Necrosis but Tom doesn’t agree!

The radiologist who reported feels that their looks to be some in the shoulder joint, from what we understand this is where the blood supply is not getting through to the shoulder joint, which is causing the pain and restricted movement.

Tom believes this is not correct and feels that the pain and stiffness is a side effective from IL2 and as such has caused an arthritic joint problem and as it is late on a Friday then they Tom will continue looking into it next week.

We need to now wait and see if Steve gets the movement back in his shoulder.

If their has been no improvement then Tom has asked Steve to come back to see him on Thursday in clinic. Steves other shoulder is starting to stiffen up and they are keeping a close eye on that as well.

Either way Steve will be scanned in 6 weeks time, which is a couple of weeks before Xmas and as such we will get the results of the scan, the week before Xmas. If the cancer hasn’t completely gone, then Tom will discuss with Steve about doing a 3rd round but Tom isn’t overly keen on this but as I said yesterday, its one day at a time and at the moment that is getting Steve home.

Steve is now off of all of the drugs and drips and is relaxing in bed watching countless antique auction programs I had no idea of the crapness of our terrestrial tv channels, thank goodness for Sky!!

I am going home tonight to get the car and then will drive up early in the morning to bring Steve home.

On a less serious note Steves hair has taken a rather unusual twist, it is looking like a combination of John and Edward (the twins from X factor!) without the hair gel! I’ve taken a picture and will post when I get a chance :-)

Love to all and look forward to seeing people soon.

Transport Runs The NHS!

2009-11-05T23:31:00.000Z

Well Thursdays typically are tough days but this has been tough in a whole different way. Not because Steve has been in physical pain which is normally where we are at this stage, but the mental stress of knowing or not knowing what is the right decision to make over his arm and continuing with the treatment. However he is still in pain with his arm and it is frightening when he goes to use his arm, you just don’t realize how much you use your arms. That sounds silly to write but it is true, just to get up, to get out of bed he collapsed as he used his arm, which makes you realise how scary this whole thing is.

Steve went for his xray this morning, shortly after I posted on the blog and he looked so poorly, sat in the wheel chair, in some green hospital pj's, with 2 blankets and a fluid bag hanging onto the wheel chair. He looked totally deflated and anxious. A nurse came with us to ensure he was okay. After the xray he then went straight for an ultra sound on his leg, as they are also trying to look for where the blood clots are coming from.

Once we got back to the ward, Tom had been on the phone to say that he had organised for Steve to be transferred over to the Royal London hospital for an MRI scan and also for them to take fluid from his shoulder, as they want to test it to see if their is an infection. So whilst we waited for the transport to arrive Steve slept in the bed. After an hour one of the doctors came in to tell us that Steve was now not going to the Royal London, as they couldn’t get any transport! Transport was all booked for the day! I couldnt believe it but had been told one of the times that transport run the hospital! And looks like that true! It makes you question our whole NHS system!

So the plan was changed to wait until tomorrow when the MRI here will be available.

For the rest of the day Steve has been sleeping on and off and slowly coming back to feeling human again. His skin is still sore, particularly on his face around his eyes. But he got his appetite back and so I went to McDonalds for some comfort food.

Steve hasn’t made his mind up completely on what he is going to do tomorrow regarding whether to take the next dose or not. This is all dependant on what comes back on the MRI scan, if it is an infection, then we would need to deal with that but if it is a side effect, then that’s when the tough question comes. Do you risk this getting worse for one more extra dose.

One thing from all of this, is that you cant look to far in the future you need to take things as they come, as you just dont know what is coming. I remember only this morning being on such a high coming in this morning having had a great nights sleep, knowing that Steve would have had as well on the magic pills, expecting the day to be filled with helping Steve get through the next couple of doses, feeling happy that it was Thursday knowing that it means the week is coming to the end and happy with the number of doses. I always feel an anxious feeling as I walk through the ward to Steves room, as I am always hoping he will be resting when I get there and even though every night I drill it into the staff to call me what ever what, they always give me that same look, that Im never convinced that they will. I wish I had a little camera or a baby alarm in the room that I could see or hear how is getting on. Sounds like Im a bit over the top about this but its just worse for those few steps as I come into the ward, the night is the only time I leave Steve for any length of time, so think that’s why the mornings are the worse, that and not ever knowing what the day will bring!

So now with Steve not on any medication he and I should hopefully have a good nights sleep and then we can face tomorrow when it comes.

Tough Decision

2009-11-05T10:53:00.001Z

Well a very quick update.

Steve had a reasonable nights sleep and so did I.

However there is now a new complication. Steve’s right arm is getting worse.

He has now lost pretty much all movement in it and it is also affecting his hand. And it feels like it could be also moving to his leg.

Tom came to see Steve this morning, to explain that they are very worried about this. As their is little research on side effects of HD IL2, Tom can only go by his past experience with his patients and he has seen this happen once before.

The concern is that even now it may take a few months for Steve to get the movement back in his arm and if they give him the 5th dose then it could get a whole lot worse and could completely damage his arm, meaning he may never get the use of it back.

So now to decide.

Do you go for the 5th dose, to give Steve the best chance of killing the cancer and take the risk of loosing the use of your arm and maybe your leg or stop here and take the chance that 4 doses is enough?

Thats where we are………

Steves treatment is now on hold whilst he makes this decision. The Doctors and Nurses have said this is a decision that needs to be made by Steve. Tom went on to say, that in medicine then protocol is if your unsure then don’t do it.

To be sure that it isnt anything else, like an infection etc, then Steve is having an xray in a minute and ideally they would like him to have an MRI as well but the machine in St Barts is not working today, as it is a maintenance day!!! So he would need to be transferred to the Royal London.

So for now no more doses whilst we work out the best next step. It is truly an awful position to be in, as Steve really feels in himself he could go on but is it worth the risk to his arm..................

Little Blue Wonder Pills

2009-11-04T21:10:00.000Z

Steve had a rough night last night and struggled to sleep, his blood pressure dropped so he was put onto the noradrenalin, which means continuous checks of your heart and blood pressure. I stayed with him but think I got more sleep then he did. Apparently I was sleeping with my mouth open! Attractive!

The 3rd dose was given early this morning. but Steve hadn't really recovered from dose number 2, so was sick pretty much straight away. The sickness and diarrhoea have been much more aggressive this time, it really has been a struggle, especially when you haven't eaten or drunk very much, their really isn't a lot to come out! Which is probably why Steve's stomach is hurting him so much. His fluid level is really down and so needs to have extra fluid pumped into him. He has in total 4 separate lines going into his neck, with all of the different medicines.

And on top of all of this he is shedding his skin! A bit like a snake, this is "normal!" apparently! and is a side effect!

All of these side effects and being told its normal are really tough to hear!

I feel like saying its not normal in my world! But know that these comments are their to be reassuring, which they are in a strange kind of way. Steve's skin is peeling and has been incredibly itchy for the last couple of weeks, he isn't overly keen on the cream that he has been given, as it is incredibly thick and takes ages to soak in! But he ropes the whole family in to rub it in, even his mum was rubbing it in for him the other day!
That said Megan hasn't been overly keen!

Steve has just been given the 4th dose and is currently sleeping. In fact he has been sleeping for the last 4 hours! Ever since the doctors gave him 2 blue pills!! And he wasn't even awake when the 4th dose was dripped into him.

Seems that these super strength blue sweetie like tablets, take you to a better place!

Which to be honest is much needed!

It is wonderful to see Steve finally resting and the time slipping past with him asleep and therefore not suffering. I hope this continues for as long as possible, or at least until he can have the next lot of blue wonder pills!! Who knows we might be lucky and they might minimise the side effects! Well here's hoping and praying!

The Doctors are keen for Steve to have 6 doses and their was even talk this morning of a 7th on Friday but Steve wants to focus on taking one dose at a time but its already better than the 2nd week when he only managed 3. So with the newly discovered blue pills and hopefully a good nights rest, the 5th dose will be given at about 9am tomorrow morning.

2nd Dose and its going to be a long night

2009-11-03T23:42:00.001Z

Steve has just had his 2nd dose at 11pm and it was a full 12 hours between doses. Steve has struggled today with his blood pressure and lack of fluid, seems to be the cause.

After being sick over 20 times, a high temperature and then so cold that 3 blankets on top of the sheets wouldn't keep him warm its been a long day and it is all about to start again.

He didn't have the rigors after the first dose but has felt terrible all day and in a way missed the shakes, as he at least gets some rest bite from all of this when the pethadine finally kicks in.

Tom came and spoke to us this morning and he is aiming for between 4 and 6 doses this week. And he really feels that he wouldn't do another round of this for treatment as 2 cycles is the maximum he works to. Steve and I don't really understand what this means if all of the cancer has not gone but feel that this week is not the time to get into questioning with Tom.

Well its a waiting game now for the side effects of this does to start, so I'm going to keep this post short, so I can try and get some sleep in the chair before the side effects start.......

Mondays are not our day........

2009-11-02T18:39:00.002Z

Well all was going so well! We arrived early, had a room with windows, enough nurses on duty, a team of doctors waiting to put the line in and of course importantly one of the comfy reclining chairs for me! So all set!! Or so we thought!! Unfortunately Steve and I forgot that the night before he comes into hospital he is not allowed to take his blood thinning injection, as when they put the line in, they need the blood to be thicker but we forgot! Opps!

So much for Dr Hewitty, think need to go back to the day job!

Due to this, we were told that they couldn’t put a line in until 5pm.

Well a perfect excuse to have a quick trip on the tube to the Kings Road, to see if we can solve our sofa problems! I know this has nothing to do with Steves treatment but ...... we are having sofa nightmares!!

Having finished the renovations to the house in May we have been trying to finish off the decoration and furniture purchasing since but a small thing called Kidney Cancer keeps getting in the way! So now with Xmas fast approaching we are desperate to finish our lounge, so we can have our first family Xmas together in our new home. All sounds simple enough? Well we discovered to our horror that whilst the new room is a beautiful size and we can fit in 2 sofas and a chair unfortunately the access isn’t!! So its either find a shop which can build the sofa in the room or buy dolls furniture!! Hence the trip to the Kings Road!

After a brief look around at beautiful sofas that even with a lottery win (I wish!) we can’t afford, it was back to the ward for Steve.

The line went in, reasonably easily and Steve is now sleeping.

The treatment will start tomorrow and looks like I will need to go home tonight or sleep in the chair, as the relatives accommodations manager forgot to leave me a key so I’m homeless!

Told you Mondays are not our day!!!!

Dose is Correct no more hospital until Monday

2009-10-31T11:08:00.000Z

Well we got a call from the hospital, which confirmed that the midnight blood test came back okay, which means that the increased dose that Steve is now on, is correct.

So now for Dr Hewitty's theory and that is that as the dose is weight related and Steve has put on nearly 3 stone! since he was first issued with the dose, then the amount he is taking is under what it needs to be so this increased dose will be more in line with Mr Wrights new found weight!

The weight by all accounts is fluid, as Steve has to have so much fluid dripped into him when he is in hospital and this is to keep his blood pressure up. Lets hope that the fluids disappear otherwise he will need to buy new clothes! Or be looking for some friends to share their clothes.........

So now we can enjoy the remaining couple of days before he goes back into hospital but to be honest we are both so tired that all we are doing is sleeping and trying to get both of our strengths up to face next week.

Blood Clots :-(

2009-10-27T22:22:00.000Z

Steve has unfortunately been unwell since we have been home, his pain in the shoulder continued and Steve had 2 terrible nights, with little sleep and was in a lot of pain.
So much so we went to our GP and then back up to St Barts yesterday for Steve to have a CT scan on his lungs, as they thought or should I say Dr Hewitty thought he had another blood clot. (Hewitty is Steves nickname for me and so he has added Dr in front of it!!)

The hospital thought it was more likely to be joint swelling from the IL2 then a blood clot as Steve is on his daily injections which are meant to stop him getting blood clots. However this pain and Steves description of it are the same as when he had the blood clot in July.

So after a tiny bit of persuasion they agreed to give Steve a CT scan. Well 2 hours later the doctor informed us that it was in fact multiple blood clots in Steves lungs!

Dr Hewitty was right all along! So then we had to understand how they were going to treat it / them!!

Steve was adamant that he didn't want to stay in hospital and made those feelings plain to both the nurses and doctors! I totally understand why he feels like that, it isn't that they aren't good in St Barts but Steve doesn't want to be in hospital, when he doesn't really need to be. It is a ward of very sick people and think being confronted with this forces Steve to think about his own health.

But I feel like their is a fine line between making sure that I'm supporting Steves wishes but also making sure he is safe. Steve is very good at persuading the Nurses and Doctors that he will be fine but I make sure I speak up even if it means Steve gives me the look!

The doctor on duty called the blood specialists to ask their advice about the blood clots. The answer was that their were a number of options.

1) Steve to stay in hospital and have blood thinning medicine continuously put into him via a drip

2) Steve to have an operation to put a mesh / gauze type thing into Steves chest to catch the clots when they form, to stop them getting to his lungs

3) Change his injections to another type of drug

4) Take higher amount of the injections, to see if this will stop the clots.

Clearly options 1 and 2 involved Steve staying in hospital, so these were quickly ruled out by Steve!

And option 3 had a possibility of a hospital stay, so option 4 it was!

However this meant that Steve would need to have the increased dose, then wait 4 hours and have his blood taken again, so they could test the blood to see if the dose was the correct amount... Which meant having blood taken at midnight!

It was a very long and emotional day yesterday and a frightening one for all of us. Steve and I got home last night at about 2am. Simon came all the way to London at midnight last night to collect us, what a fantastic thing for him to do. Steve was blown away with this gesture and still cant believe what amazing friends he has but as I say everyone knows Steve would do the same if the roles were reversed and that is what friends are for.

Well we now have to wait for the results of the blood tests as they will take 48 hours to come back. Muriel is arriving tonight as everyone needs their Mum! And every Mum needs to be their for their son.

I am exhausted and both Steve and I are looking forward to being looked after by Muriel.

I will post when we have more news.

Welcome Back Mr Wright...........

2009-10-24T22:56:00.000+01:00

We are home.............

When I arrived to see Steve this morning I knew straight away that he was getting back to himself as the first thing he wanted to know was Where Have You Been???.....

He also had got his appetite back, so one sausage and egg sandwich and he was on the case of the Nurses and Doctors to let him out!!! That said he is totally exhausted and hasn’t been out of bed since Tuesday. so I and the Nurses are encouraging him to take is slow. But we all know when Steve has his mind set, then their is no changing it! So at 2pm our carriage courtesy of Bruce arrived to whisk us back to Chobham.

The Doctor has asked Steve go back up to the hospital on Monday as they are still concerned about his shoulder pain, as they think it is likely to be a blood clot but they need to get him an ultra sound to confirm this. If it is then the treatment will still be the injections, so nothing will really change for treatment purposes.

Steve has to now rest and get his strength back before next week, when he will be back in for the final week.

So rest and spending time with the girls, as it is half term, oh and decorating, as the carpet and dinning room furniture is being delivered on Wednesday! At least Steve gets an extra hour tomorrow, due to the clocks! Seriously though I hope Steve recovers as he did last time and if the last time is anything to go by, then Im sure he will be up for visitors from Tuesday or Wednesday.

6 Doses and Finished

2009-10-23T20:50:00.000+01:00

After a night of no sleep, Steve managed one more dose today. He had the 6th Dose at 10am this morning, he looked exhausted, swollen and very uncomfortable before he had even started.

The side effects came regular as clock work at the 2 hour mark and they stayed for the next 6 hours...

As bad as the temperature, shakes, sore joints and itchiness are, the worst is the feeling that your whole body is giving up on you. It is a form of sleep depravation coupled with extreme flu like symptoms and this is proper flu not the man flu kind!!

Steve has no energy and cant sleep and sleep is what he so desperately wants. But every time he tries his mind has now decided to play tricks on him! Apparently he has just drowned and Ive had my face cut off by a jet ski! Ouch!!

I keep reminding Steve that it will pass like it did last time but when your feeling as he does then you cant see through it.

Time and Sleep is going to be what will help him get through this and luckily we asked the Doctor for an extra strong sleeping tablet, which he was happy to prescribe for tonight, also it looks like Steves medication for his blood pressure will be stopping tonight, so it means his checks will be only 4 hours, so coupled with this and the bad boy sleeping tablet I think there is every chance Steve will sleep!

Steve hopes to be out tomorrow but if not then it will be Sunday. I will update the blog, as soon as Steve is given the go ahead and our carriage courtesy of Ginge has arrived to whisk us back to Chobham.

Much love to all.

Hotting Up!!!

2009-10-22T23:32:00.000+01:00

Steve has now had in total 5 doses this week and they are hoping for at least one more tomorrow if not 2, which would bring the total up to 6 or 7.....

It has been a terrible day with the side effects and when Steve was just starting to feel remotely normal, the next dose of HD IL2 was given at 5:30pm.

His temperature hit 40 today which is approximately 110 degrees! And with such a high temperature lasting hours and hours, his skin became incredibly red and his joints swollen.

All of the usual side effects were also out in force, the rigors (shakes) lasted longer then before and it took 125 mil of pethadine to stop them on both doses today. That is nearly 3 times the amount of pethdaine that it normally takes.

I almost go onto auto pilot with these side effects and ensure he has everything he needs to get through them as easily as possible but tonight a new one developed which made me realise how dangerous this whole treatment is.

Shortly after his 125 mils of pethdine, he became very incoherent and started to make painful sounds and his breathing became very erratic and almost like he couldn’t catch his breath but his eyes were shut. I watched him and tried to see if he would open his eyes but he couldn’t. I rushed to get a nurse and asked them to come quickly, Steve was quickly put on Oxygen and has remained on Oxygen for the last 3 hours. That was the most scared Ive been through this whole process I couldnt do anything to help and it really scared me that Steve was not able to respond.

I couldnt stop the tears from coming when the Doctor came in the room to monitor his breathing. It really shook me that he was trying to take a breath but couldnt. The Oxygen helped really quickly and Steve settled down and his moaning and erratic breathing stopped.

I can’t describe how amazing Steve is being about all of this, he still when asked by the Doctors how his doing, says he is okay. It made me think about the times people ask each other this question and how we respond.. I know going forward I will certainly complain less if I’m feeling under the weather or fed up! And yes Steve this is in writing so you can hold me to this!

I’m leaving in a minute as Steve is asleep now but just before he went to sleep, he said to me "We are going to be alright, you know that don’t you?" I want to believe we will be. I want to believe that this is the last time we see inside of a hospital again for a long time but know that isn’t and cant be the case, however being alright can be different things to different people , so for us, for now, hospitals and doctors visits are going to be part of our lives but that doesn’t mean that other things cant be alright, we have each other and 2 beautiful daughters, wonderful family and friends and we can focus on these things and above all Steve knows I’m there for him 100% and will battle with him against this cancer in what ever shape that takes and at the moment that is being here with him and getting him through the final 1 or 2 doses for this week..

3rd Dose Despite of the Blood Pressure

2009-10-21T23:25:00.001+01:00

Well like all things at the moment I spoke to soon, when I said Steves blood pressure was behaving itself! Literally minutes after I pushed the button to publish the blog, did things take a turn for the worse!! Steves blood pressure dropped to below 100, which is too low!

So they gave him 3 bags of fluid to try and raise it back up again but it didn’t work. And until the blood pressure is up, they cant give him the next dose of HD IL2.

After 4 hours of trying to get it back to a level which meant they could continue with the HD IL2 it was decided best to wait until the day staff come on, which was only a few hours away, as it was 5:30am by the time this conclusion was made! At just after 9am the decision was made to start Steve on Noradrenalin.

This is the drug that basically makes your heart beat faster and constricts your veins, so your blood pressure rises! It also makes Steve feel like crap!
And means that as it is putting a lot of pressure on your heart the nurses need to do "Obs" (observations) on you every 15 minutes! Obs typically consist of blood pressure check, temperature check, pulse check, counting your breathing (not totally sure what this is for???) but from what I can see them count how many times you breath in and out for a minute! Im sure Ive missed one out! Lucky Im not a Nurse, as it is probably a vital one!

This process means Steve doesn’t get any rest! Nor do the Nurses but Im looking at this from Steves point of view :-) Any how without this drug, Steve can not continue, so it is what it is!

Once the Noradrenalin started working and Steves BP (Blood Pressure- Look at me with all my lingo tonight! :-) You can tell Ive not been talking much today, cant you!) rose above 100 the 2nd Dose of HD IL2 was given at 10am.

Tom popped round to check on Steve and felt we were still on target for 5 to 7 doses and wanted to try for another dose at 6pm, with the possibility of another one at 2am!

The side effects of dose 2 were hard but Steve managed them in his usual way of pure determination to get through, most of the time in Silence! He hasn’t had any sickens today but did have a quite a lot of rigors (shakes!)

He has had a unusual pain in his left shoulder which has meant that he couldn’t lift his arm, without supporting it but Steve didn’t think it was worth mentioning to the doctor! But for those of you who know me well I decided to track a doctor down to tell them! Don’t you just love interfering girlfriends! 20 minutes later and a mobile x-ray is wheeled in the room, as the doctors wanted this pain checked out incase it was something to do with the line they had put in his neck! Now that is a piece of machinery! It practically took up the whole of the room and it was on wheels, with an internet cable attached, so they can send the digital image to anywhere the doctor is! Clever!! Feel Im getting a little too excited about a piece of medical equipment!

Steve was so embarrassed and kept giving me a look, as if to say what have you done now! But in my mind, better to be safe then sorry!
They are still not sure what it is wrong but are going to look into doing an ultra sound tomorrow.

Steve was still able to receive the 3rd dose at 6pm.

Since about 8pm he has had a temperature of 39.9! And 2 lots of Rigors and his blood pressure has dropped. He is feeling very unwell at the moment but who wouldn’t be with those side effects. He feels spaced out and is unable to move, he hasn’t eat today but has taken a liken to cold Ribena, so Ive been buying it in little cartons and keeping it in an ice bucket, so it is properly chilled! He can only have little sips at a time, otherwise he feels quite sick.

There will be no more doses tonight, as he needs to rest and get his temperature back down again.

So a couple of sleeping tables and some paracetamol given about 20 minutes ago and some ice wrapped in a flannel rubbed over his body by moi! And he is sleeping! Im going to go in a minute, as I didn’t leave here until 5:30am last night and am totally shattered.

Will be back first thing, as they are planning on giving him the 4th dose at 9am.

1st Dose and Looking Like 2nd Dose before the day is through........

2009-10-20T22:04:00.000+01:00

After a fairly straightforward insertion of Steves line this morning, his first dose of HD IL2 was given at 3:30pm.

Tom came and spoke to Steve this morning and explained how he was looking for Steve to have between 5 and 7 doses but most importantly that the doses take place over a prolonged period.

He went on to explain that if Steves blood pressure dropped and they couldn't give the next dose then he would rather wait 24 hours and try again rather than stop.

So it all depends on how Steves body reacts to the treatment and this will determine how often he has it!! Still following????

Tom has told the staff he wants to be called with a full run down of Steves notes before they give the next dose. So at 11:30pm tonight Tom will make the decision whether to go for the next dose or whether to wait until the morning.

Well it is normally 2 hours after the dose that Steve begins to shake and feel generally like crap but 2 hours came and went and Steve was feeling good which was such a relief as we thought it was going to be harder this time.

However at about 7:30, so about 4 hours after the dose, Steve started to get the shakes not as bad as they have been in the past but enough for him to be given pethadine and he was so sick that the little cardboard bowls simply were not enough!

Now Ive never seen anyone change a bed, sheets and all with someone in it! Yes know its not quite one of the wonders of the world but still an impressive feat!! 2 Nurses lately and Steve was in a clean bed without even getting out! Told him not to expect that at home!!!

The staff here continue to surprise me! One of the nursing assistances Winston, who goes out of his way to smile and chat with all of the patients and has the most amazing memory for names, as soon as he saw Steve he was so enthusiastic and happy to see him!! But then Steve does like to have a joke with the staff and think all of the staff warm to him.

Well since Steve has been sick, he has been sleeping, his blood pressure is remaining stable but his temperature has risend if he continues like this then the staff think Tom will give the go ahead for the 2nd dose at 11:30pm. If Steve has the next dose then I will stay with him, as he has been moved to a side room and so off in a minute to get my PJS!!

Stop, Start.........

2009-10-19T23:38:00.000+01:00

Steve and I arrived at St Barts to be shown to Steves bed for the next week and it was in a ward not a side room. The last 2 times he has been in, he has been in a side room. Such a small thing seems not something to be worried about but knowing how ill Steve becomes on this treatment, we were both upset at the thought of him having no privacy as he goes through the treatment. It was a tiny area which we couldn't imagine how it would work with Steves machines and drips that he needs throughout the week. Also it meant that I would not be able to stay with him as the visiting hours are from 10am to 8pm. Steve spoke to the sister to see when their would be a room available and explained how he felt about being in the middle of a ward whilst he goes through the treatment. She said she would find out but didn't think one would be available that day............. nor could she say when one would be available.

The registrar who was on duty came to see us and said she had spoken to Tom (Consultant) who felt the treatment could start tomorrow but that would be the latest that it could start. Steve decided that as were here that he would start the treatment and hope that they got a room before the side effects kicked in.

So..... when we thought we were on our way to beginning the treatment the registrar came back to advise us that their weren't enough nurses on the ward, so nothing could happen today!!!

They offered that Steve could stay overnight in the hospital and start the treatment first thing in the morning but when you have to be in hospital the last thing you want to do, is stay in when you don't need to!

After some bloods were taken, we were asked to report back to the ward at 8am tomorrow for the treatment to begin, when hopefully a side room and most importantly some nurses would be available.

I do hope they have a room for Steve tomorrow I really don't know how we will both cope with him being in the middle of a ward. I just want things to be as easy as possible, this treatment is hard enough without having to be concerned about waking other patients up or being asked to leave at 8pm. I know I wont be able to leave him, so may need to be incognito when it comes to chucking out time!!! I'm trying not to make a fuss in front of Steve as he doesn't need that, he has been quiet today, it has been easy to forget about today for the last few weeks but even Steve cant ignore it when we arrive to the hospital

Neither Steve nor I could face getting the train back home and then back again in the in the morning, Steve was exhausted and both of us felt like it was later than it was! Which was about 3pm.......

So rather than going home Steve and I are staying in my nurses accommodation across from the hospital.

It is so lovely to feel like you have this unexpected day handed back to you, we had both built ourselves up for the fact the treatment was beginning and to suddenly be fortunate enough to have tonight wandering around London was a lovely experience and all the better because we didn't have any plans and so could feel like tourists looking through shop windows! catching the bus! Which I'm ashamed to say I haven't been on one for years!!

Well fingers crossed that tomorrow everything will have fallen into place and Steve starts his treatment with no side effects! (Think that's going to take more than simple finger crossing but here's hoping!!)

Clock Is Ticking

2009-10-18T22:18:00.000+01:00

Well tomorrow is getting closer and closer and Steve goes back into hospital first thing in the morning for his 3rd round of the dreaded HD IL2 treatment.

Your mind is an incredibly powerful thing and typing this sounds like such a cliché but for the simple fact that only now thinking about Steve going back into hospital tomorrow, that it brings back all of the memories that my mind has blocked out about the terrible time that Steve had in the hospital.

It feels like a long time ago that I was sitting next to Steve watching and trying to help him make it through the treatment and here he is again preparing to go back in again Hmmm preparing? Steve being Steve isn't preparing he is living! Golf, Picking Colours and Furniture for Lounge, Match of the Day etc! But that is just how he has been through this whole experience and that is so the right thing to be doing. It means you treat your life as something for living rather than waiting for the next treatment or result. But easier said then done but something that he has definitely mastered!

He is of course anxious but anxious in his own way, as Steve says he would rather not be going into hospital tomorrow but knows he has to and has to look at it as a necessary evil.

Well I will do my best to update the blog every evening with the latest information about how Steve is doing and thank you for everyones well wishes.

One Step Closer.........

2009-10-08T18:58:00.004+01:00

Well I will get straight to the point!!
We met with Tom who told us in his rather eccentric manner that.....
It is WORKING!!!!!!!
Two of Steves tumours have dramatically reduced in size! and the others have remained the same and their are NO new ones!!
Tom went on to explain that this was a fantastic result and that Steve chances of a total cure have risen from 7% to 50%
So its back to doing it all again!
Steve will start the cycle again on the 19th October with the same pattern as last time.
1 week in, 1 week and at home and then 1 week back in again!
Steve and I left the appointment both in state of shock and happiness but your emotions are funny things! Steve has been rather subdued and surprised by our families and friends reactions. Whilst he is happy it has worked it does still mean that their is a 50% chance this wont be cured and all said and done he does still have the cancer.
So not quite popping the champagne yet but at least it means we can go away for the weekend knowing Steve still has a chance and a better chance of beating this thing!!!
It felt almost unreal calling my mum and telling her, especially as the last 3 months have been calls with bad news or worrying updates of Steves treatment. Steves parents as you would imagine over the moon or in the words of Muriel she is cockahoot!! and told us she was off to dance around the lounge!! Wonder if Bryan will be joining in? Sure he will be!
I feel so happy that moments of tears keep coming I know we have a long way to go but we are on the way to the perfect ending to this awful journey, that Steve so deserves.
It is still going to be a fight and the treatment will be even worse than before but Im so glad I bought them those chocolates when we left last time!!!
Well off to celebrate Daryls birthday tonight and then packing for our trip to Cornwall, seems at long last we have reason to be positive.

Scan Date Set

2009-09-17T21:39:00.003+01:00

We now know the date for Steves scan, which is the 2nd October. Steve will go up to St Barts on the morning of the 2nd and have his scan. He wont get the results until the 8th October as this is when Tom runs his clinic and he wants to get his kidney cancer specialists looking at the scans before we get the results. Of all of the dates for them to be, it is ironic that the scan is the day after Megs birthday and the results are 2 days before my birthday. So my birthday will either be a great celebration or a time to drown our sorrows!

We are trying desperately not to focus on the date nor whether its worked or not but instead enjoy the time we have.

Which is one of the reasons why I haven't been writing on the blog. The other reason being that Im back to work full time! Its about trying to be normal!

Well as best as we can be normal! Its been pretty easy to get back into the swing of things, all be it very tiring!. But silly things remind us both of the cancer. Hearing the news about Patrick Swazy really upset me, not because I was a huge fan, though I wont deny having spent a very enjoyable evening dancing to "Ive had the time of my life...." but wont be going into the details of that on such a public site! but more to do with the fact that he was a youngish fit man whos life was ended through cancer. It brings back all of the fear and worry that both Steve and I have.

Steve is doing so well, its almost as though the time in hospital happened months ago not just a few weeks ago. He still gets very tired and at times gets frustrated that he cant do more but then he has always been hard on himself!

On Sunday we went off to Hampton Court for the day land hired a couple of rowing boats. Dudley even seemed to enjoy it!

I am of to New York next week with work, I am worrying about how he will be! Steve thinks Im mad!! As "I will be fine!!!" is what he keeps on telling me and Im sure he will be. That doesnt stop me from worrying though, as this will be the first time Ive been away since he was diagnosed and whilst Im sure he is looking forward to a bit of peace and quiet! I am beginning to feel anxious about it all. Megs on the other hand is most excited about it all and has already given me a list of the clothes from Abercrombie and Fitch and Victoria Secrets, all of which she is hoping to get for her birthday!

Thank you for all of the lovely comments and look forward to catching up with people soon.

Home Sweet Home

2009-09-06T21:01:00.003+01:00

Steve got the all clear yesterday and was allowed to come home!! Steve was so pleased to be allowed out! We packed out stuff and said our final good byes to the hospital and the staff!

I bought them some chocolates and a card to say thank you, well you never know we maybe back there! Strange really as I really don't want to see Steve go through that awful treatment again but on the other hand I have every thing crossed that his scan will show an improvement and thus meaning, we will back going through this awful treatment again in 6 weeks time!

So now home and Steve is much better than he was when we came home last time and even managed to come out for an hour today to see Megan and Poppy run at the Woking Athletics Championship. Pleased to say both girls came home with medals! Which pleased us all and made even more special that Steve was there to cheer them on.

Im sure Steves recovery will be all the speedier now that his Mum has arrived! Muriel is now here with us, which is lovely and she has come prepared to look after Steve, as Im back to work next week.

Finally thank you to all that found Vimto Bon Bons we now have so many that they have thier very own cupboard!!

Don’t forget the Barbeque sauce!!

2009-09-04T16:35:00.002+01:00

No more doses!
3 seems to be the magic number for this week, as Steves body cant take anymore.
He is now doing his best to recover as quickly as possible as he is desperate to come home!

At 10am this morning Tom decided that this was it for this week.
His blood pressure simply wouldn’t stay higher enough for him to be able to have any more treatment.

Soon after it was decided that their would be no more for this week, he started to become anxious about getting home. He cant come home until his blood pressure stabilises on its own, without the Noradrenalin and at the moment he is still on 8 mils. Its likely to be Sunday but if he does well today then he may get out tomorrow! I know he is desperate to come home and who could blame him!

He has settled down now and seems to be getting his appetite back! But not for the hospital food! Nope! He wanted chicken nuggets! And a vanilla milkshake.

It was a relief almost that I knew I could get this without too much difficulty. So a quick walk to McDonals and an ever quicker ride back in a taxi! I was instructed “Hurry back as they taste horrible cold!!”
He was happy as larry eating his chicken nuggets! The whole ward stinks now of Maccy D’s but better that then what it smelt like only a few days ago............
And now his a Sleep! Ahh bless, him snoring….. Funny I use to nudge him every time he snored at home but now I love it, as it means he is getting some rest.

Steve will come back in 4 weeks time to have a scan, to see whether the treatment has had an effect on the cancer.

Tom spoke to us about the scans which Steve had before the treatment began and he compared the scan to the one he had in July.

Unfortunately their has been growth in the size of the tumours and also a number of new ones have grown but all tumours are confined in the lung and the growth is fairly small but unfortunately it does show that the cancer is not dormant and is growing.

So when he has the next scan they will be looking for shrinkage in the tumour size or no growth. If they do shrink or stay the same, then Steve will come back in 6 weeks for another round but we won’t know that until he has the scan in 4 weeks time. Until that point neither we nor the doctors know whether it has worked or not.

So its sad news that Steves cancer is growing but to be honest it wasn’t a shock to us, as we both knew in our hearts that this would be the case. And if IL2 (the treatment he is having) works then it really doesn’t matter, as it will stop or make the tumours smaller.

I will post again once we have a clear idea on when we are being released! Love to all x

The Longest Day…….

2009-09-03T20:27:00.000+01:00

Today seems to have gone on forever! And its only 8pm. 8pm use to be the time when Steve and I would sit down for dinner, after we had both come home from work. A time when the house would be quiet apart from the two of us. Unless it was a Tuesday or a weekend when we had the girls.

That time in our lives seems so long ago. Its hard to think about it without feeling upset. We both lived such busy lives, with our jobs and the evenings were our time to catch up on the days events! Which I must admit I took up the most amount of time “wittering” on about my work and the characters that filled up my day.

I look forward to having that time again, now our days are spent with Steve battling through, waiting and wanting his next pain killer, to reduce his temperature and trying to persuade the nurses to give him something for the itchiness. And me watching, listening and incessantly writing down all his side effects and medication.
We have always been a couple and a family who try to look on the lighter side of life, not taking anything to seriously. I believe it is this attitude that has helped us this far but to be honest this is really beginning to push the boundaries!

I feel like I want this to all go away, almost as though it was a bad dream! I don’t want to be on e mail lists about Kidney Cancer. I don’t want to understand about NHS funding and the ridiculousness of the NHS system (more of that another time!) I don’t want to see Steve suffer and know that I cant do anything to take away his pain.

I want things just as they were before. I want to be travelling with work, meeting colleagues, working on new marketing campaigns. I want Steve to be thinking about new deals and talking me through the projects in the pipeline and pointing out buildings ML have worked on. And most of all I want things to look forward to as a family!
Well the above all sounds rather selfish and Im sorry for my rant but I suppose after the day Steve has had and what Ive had to witness in the person I love the most go through I am allowed!

So back to today!

Steve had his 3rd dose after a reasonable night sleep. In fact one of the better nights he has had since he has been in here. The 3rd dose was given at 10am with the proviso that his blood pressure was kept up. If his body coped with that and the blood pressure remained high and the temperature down, then there was a possibility that he would have the 4th at 6pm.
Well unfortunately no one told Steves body these rules! His blood pressure dropped and dropped and he is now on a dose of 18 mils an hour of the Noradrenalin, to keep it above 100. The shakes came and didn’t go! They lasted on and off for 5 hours! To give you an idea, they normally last 20 mins max! His temperature hit 40 and stayed between 38-40 for 9 hours! 9 hours!
Steve didn’t have the 4th dose, to be honest that was the last thing on Steves or the nursing staffs mind, they are more concerned with his blood pressure and getting him to feel better.

Tom checked in on Steve and said he isn’t sure if he will be able to carry on, as his body is having such extreme reactions to the doses. Tom will come back in the morning and assess again, whether this is it for this week, or whether they will try one more.

Steve is feeling low. Im doing my best to keep his spirits up but its so hard. What do you say, what do you do? Suppose you just you be there for someone in what ever form they need you in.

Jamie Oliver Where Are You????

2009-09-02T22:25:00.000+01:00

Jamie forget “School Dinners” and get yourself down to your local hospital because they need you!

As Steves doses are now 24 hours apart he is slowly getting his appetite back but as the food looks so unappetizing he didn’t want any of it and I have to agree with him! The food is served by the nursing staff who do their best to make it look nice but they cant do anything about the taste or the temperature of it!!! So Jamie if you want to make a difference, then please turn your attention to our hospitals!

Even though he hasn’t had a dose since 8am this morning he is still feeling feverish, itchy, uncomfortable and generally like crap! He is quite red all over and looks sun burnt and exhausted in the face! Pretty much what he looks like when he comes back from a Golfing or Skiing weekend with the boys!

Im about to leave him, so he can try and get a nights sleep. He is being given a sleeping tablet and all his other potions! However as he is still on the blood pressure medication he will need to have the checks all night. I really do hope he gets some sleep as its going to be a tough morning, with the 3rd dose being given at 8am. So I will be back by then.

Change of Dose Plan

2009-09-02T13:18:00.005+01:00

Well the 2nd dose didnt happen at 3am as Steves blood pressure was too low.

Instead he was given Noradrenalin (probably not how it is spelt) which is given via a drip into Steves neck and it is used to raise your blood pressure. It does this by making your heart beat faster and constricts your veins, all of which should then make your blood pressure rise. Unfortunately due to the side effects of the drug (Heart problems) they need to check your fluid level and heart rate every 10 mins.
Which means no sleep for Steve. Not that he could sleep as his temperature and sickness were out in force!

At 8am nearly 12 hours after the first dose they gave him dose number 2!

Which unfortunately caused his blood pressure to dip even lower and the shakes and sickness came back.

Due to his blood pressure and the hard side effects they have changed the treatment dose plan!

So now he will have a dose every 24 hours not every 8 hours. With the next one due at 8am Thursday morning.

This does mean he will probably have less than 6 and maybe only 4 but the doctor told us that it was better to spread them out and keep going for longer than to stop after a 48 hours. So there goes Steves plan to be home by Friday!!! We really dont know when he will be out but I think it is likely to be Sunday like last time.

So now Steve is trying to rest before the dose tomorrow but its hard as he is still very hot and his blood pressure will not go above 100/69 - I spend my day looking at that monitor willing the first number to go above 115! As the doctors have said it need to be at 115 before they can reduce the Noradrenalin.

Strange as only a few months ago, Steve and I were so clueless to this world and now Im telling the nurses how he needs to have anti sickness before he has Pethadine! Which for the record the Nurse ignored last night, even though I asked them to and surprise surprise he was sick! I was so upset as its awful enough this process without making it worse by not giving him the anti sickness.

Well hopefully Steve and I will both get some rest tonight in preparation for tomorrows 3rd dose.

Thank You to ALL at Morgan Lovell for the VBB's, they arrived at the hospital in a large box and Steve and I guessed straight away! And I have to admit even though the note said I shouldn’t have any I have had a few!!! And Steve has even managed a couple!

And finally Ive added to the top of the blog a couple of links for UK websites which are dedicated to Kidney Cancer, as a couple of people have asked me for some more information.

1st Dose ...... 2nd Week.......

2009-09-01T21:17:00.003+01:00

Steve and I arrived at hospital at 11am and it took a lot of courage for Steve to come back in today. And courage seems such a strange and almost weak word to use.

On the outside its an obvious thing to do. Come in get the treatment so you have a chance at killing the cancer! But when you know and have been through the suffering that it caused last time it’s a very difficult thing to willingly put yourself through the same again. Especially as he is starting to feel better in himself. And we still don’t know if it is working!

But he is here and Steve has had his first dose.

It wasn’t until 7:30pm, as they had to put in the neck line in again which unfortunately wasn’t as easy as last time.
After an hour of trying they finally got the line in and he now has his tubes hanging out of his neck, waiting for the drugs to be put in.

Tom (Dr Powles – Consulatant) came around to speak with Steve about the number of doses he would like him to have this week.
He is aiming for 6 but given that Steve suffered so badly last time and that the 2nd week is always harder! (Luckily we didn’t know that before we got in here!) He is going to monitor how Steve is over the next 24 hours, by which time Steve will have had 3 doses.

The side effects of the first dose took a while to come but when they did, they did with force! Sickness was the worse and unusually it was before the shakes...... Which took us by surprise abit but suppose it just shows you how your body reacts differently all of the time.
I can tell already this is going to be a tough week as the side effects are lasting as long as they did on the 8th dose and Steve is still so tired from the previous time we were in.

The next dose will be at 3am............

Great week and Good News from the Hospital

2009-08-29T17:50:00.004+01:00

Steve and I went up to the hospital on Thursday morning to see the Doctor.

They took some blood and sent Steve for an xray of his chest, as I was concerned about his breathing at night. Pleased to say the bloods and xrays were good and the doctors are pleased with his recovery and have told us that the treatment wont start until Tuesday! So we have a whole extra day! Which we are all really pleased about. Lets hope the weather holds out so we can have a day out on Monday.

Steve is making marvelous progress and yesterday and today was back to his normal self. Which is so amazing, given where he was last week and the treatment. I have to say I was nervous when we came home, whether Steve would recover enough to enjoy any of this week but in true Steve style when he went to bed on Wednesday, he said to me "Right tomorrow Im going to be welll!! Ive had enough of this illness nonsense!"

We took the kids to Thorpe Lake and the girls and I had a water skiing/boarding lesson!! I as you would imagine was rubbish! But the girls were really good and loved it! You could Steve was itching to get in and show us how its done!!

Home at Last

2009-08-23T17:51:00.002+01:00

Well we were finally given the best news ever at lunch time today, that Steve could come home.

He is incredibly exhausted and uncomfortable. He has had no sleep since Monday and now sleep just wont come! His mouth and eyes are sore and his skin is itchy and dry. He is still not eating and drinking only a tiny amount. As things still don't taste as they should.
He needs to go back into hospital on Thursday for his blood tests and check up and then we are back in for the treatment again on Monday 31st. At this stage Steve has asked me to ask that if he can have some quiet days at home with no visitors and I will let you know as soon as he is up to seeing people.

Through this awful process your eyes are opened to so many things..................

The kindness and thoughtfulness of people who nothing was to much trouble, Ive realised that friendship and family love are things to be totally treasured and without this, this awful experience would be a whole lot harder.

Also that when you think things are as worse as can be that speaking to other relatives and patients in the hospital you realise that so many people in this world are going through very similar things and worse.

And finally complete strangers and their ability to make you smile by random acts of kindness. One of the mornings when Steve had an awful night and I had stayed with him all night I popped out at 6am in the morning, desperate for a coffee. I went to the local cafe "Beppes" and they were just opening up. Seeing my sorry state the owner told me to sit down and he would make me a coffee. He asked me about my situation and was so kind and listened to me without any thought to the chaos of his cafe going on around him. He brought me my coffee and then from behind the counter produced a bottle of Whiskey and told me to put a little drop in, as it would "take the edge off of things" when I went to leave he wouldn't take any money from me but told me to keep my chin up. It amazes me the kindness of complete strangers and I hope one day Im able to do the same for someone.

Well Im looking forward to Steve coming through this over the next few days and spending time together with the kids.

And thank you once again for all of your comments and for the "Bon Bons!" Thankfully those are still tasting the same and he is munching away at them!!

Recovering Slowly.... but still in hospital

2009-08-22T13:35:00.002+01:00

Its Saturday lunch time and Steve is on the mend! Slowly……
He still is extremely tired and sleep is not easy to get when you’re in this environment. He is still being checked every 15 minutes as his blood pressure is still low. He is at the moment still hooked up to lots of machines and drips, to try and regulate his blood pressure. It is inching up but not quick enough!
Steve is feeling “fed up!” he can’t get comfortable and feels cooped up in this place and still doesn’t really have any kind of appetite.
Nothing quite tastes as it should! But yesterday when he had a high temperature which was so relentless that it was lasting hours and hours I nipped out and bought him a fruit pastilles ice lolly. Steve loved it and it was the first thing he had tried which didn’t taste horrible. He was able to hold it on his lips and helped to make him feel a bit better.
So this morning when I came into see him he wanted another one!!
Well if you have ever been in London City on Saturday morning then you will know it is like a ghost town! Hundreds of shops but all closed! Even Sainsburys which is open until midnight during the week but shut all day on a Saturdayand Sunday!!
I consequently spent the next hour walking around searching the streets for a Fruit Pastilles Ice Lolly. When I finally found a small newsagents that sold ice creams, it didn’t have any! Im beginning to think that Steve and his particular taste for sweet things is becoming some what of a pain!! But then I immediately think of how brave he has been and know this is a small thing if it makes him feel better. In the end I had to settle on getting him a Calipo ice lolly from a small café! Where the owner looked at me like I was a mad! It was after all 9am on an overcast windy Saturday morning.
A new side effect has begun to kick in and it is making all of Steves skin itchy and dry. I can now add official masseuse to my list of duties as I have been rubbing into him some cream given to him by the hospital. I was actually thinking if anyone knows or is a masseuse I would like to have a basic lesson in massage. As it really helped Steve this week to have his joints rubbed! (No smutty comments please!) Ive no idea what Im doing so was thinking a basic lesson in massage could help me to help Steve when he comes in the week after next.

As for the next time he is in, that will be on the 31st August. The doctor has said that he would like for Steve to aim for 6 doses next time. The doctor said to Steve yesterday that he likened Steves attitude to that of a marathon runner. He went on to say, Steve looked like someone who when they got to the fifth mile was completely out of breath but still went on and completed the race. He thought when he saw Steve after the third dose that he wouldn’t be able to get any further but through his strength he made 8 which is a fantastic result.

As soon as Steve gets the go ahead to come home I will post a comment on the blog.

8 Doses and thats it for this week!!!!

2009-08-21T22:48:00.002+01:00

Steve has now finished the treatment for this week and is doing his best to recover his body and his mind from the awful time he has had. He through sheer determination and strength put his body through 8 terrible courses of this drug. Each dose had more of an impact on his body, with the 7th dose having such a detrimental effect on his blood pressure that the doctor on duty decided to not give him the 8th dose. However this morning through mutual agreement between Steve and his doctor they decided to give it one more shot!

He had a terrible night with a fever which combined with shakes and low blood pressure meant that it was a relief when they said he could not have his 8th dose at 4am. He then spent the rest of the night struggling to get comfortable with terrible aching joints and fever and sweats.

This treatment is so relentless no sooner have you started to come through one dose then the next one is being administered. And as the doses go on and your body suffers more and more, it of course takes longer to recover from the side effects.

I will finish off this entry tomorrow as now I need to get some sleep. But once again thank you to everyone for their thoughts and prayers. Now we need to focus on getting Steve up and off of the drips, so he can come home to his family.

7 Doses and each one becoming harder and harder

2009-08-20T22:13:00.000+01:00

Well where to start! Steve has been through a horrendous 24 hours. Unfortunately the 4th Dose last night made him very sick, 11 times to be precise. And I should warn anyone now who has a weak stomach or who has just eaten to skip straight to the last paragraph ….

Sickness, Diarrhoea, Sharp Pains in all joints, High Fever of 40, Swollen mouth, Pain all over his body, Shakes all over the body for 35 minutes each time, Dangerously low blood pressure and not one moan from Mr Wright!!!

Steve has now had 7 Doeses of the Interlukin and every dose seems to have worse side effects on him and all of them seem to be lasting longer! The shaking, sickness and high fever are really awful to see as a bystander who feels helpless and last night it didn’t matter what the nurses did they couldn’t stop him from shaking and being sick. It felt like it was going on for hours but in fact was about 45 minutes, which is still a very long time when you have no control over your body and your body is also trying to expel the drugs they are putting in you.

We have become quite good at predicting when the side effects will start which is good as I can get all of the necessaries ready! E.g. the sick bowl, blankets and the cold drink! I also am able to go find a nurse. All such small things but I know that Steve really appreciates them and it stops me from feeling so useless.

He has the doses 8 hours apart and he only starts to feel remotely normal about an hour before the next one begins. It is all very exhausting for him and when he is not being sick or being checked by the Nurses then he is trying to sleep.

I can not begin to imagine what this whole experience feels like for Steve but I can say it is the most horrendous thing Ive ever seen anyone go through.

I’m struggling to find the right words and this is coming from someone who loves to Witter! (Steves description of my constant talking, normally used when my Mum or my friends ring up!!) of how utterly horrible and frightening this treatment is and more importantly how amazingly Steves coping with it.. I can honestly say he has not moaned once about this and battles through quietly and focussed. I thought after the awful night he had last night that he would ask them to stop! But no, when asked how he felt, his simple reply was not great but Im okay. Lets keep going!

I’m staying in the hospital room again with him tonight, as cant face leaving him like this and I know he doesn’t want me to either! He has just had the 7th dose and we are waiting for the side effects to see what horrible things they will inflict on him, this time round.

Thank you for your comments on the blog. When Steve is awake Ive been reading them to him and he is grateful for everyone’s thoughts and well wishes.

4 Doses and counting ……

2009-08-19T19:28:00.002+01:00

Steve has just had his 4th dose of the Interlukin and he is getting use to know what to expect.
Typically after about 2 hours the side effects start to kick in. The worst at the moment have been terrible shaking which takes over his whole body. It is so violent that it makes the whole bed shake.
The shakes seem to be getting worse as after the third dose the pethadine did not work enough for them to stop, so he had to have a further couple of doses.

He has also had some problems with his blood pressure where it goes to low and they are monitoring it every 15 minutes. A couple of times it has dropped below 100 and they need to give him some fluids which then brings it back up. He has also suffered with a very high temperature and at one point it hit 40! But again the staff are fantastic and are very quick to react to all of these things.

It is a world away from our experience of St Peters our local NHS hospital, the staff are so professional and friendly. Their also appears to be more staff than patients. Steve is the only person having this treatment in the hospital this week but as this is a cancer ward they are use to dealing with people going through extensive treatment.

I’ve also been keeping a diary of all of the medicines, temperature, blood pressure readings and side effects. I think the staff think I’m mad but it means that I can be proactive for Steve and ask for medicines to help him before he suffers with the side effects, which they don’t mind at all.
He will have the 5th dose if all goes well with this one at about 2am. The maximum doses he can have are 14 but they are aiming for 10 and the doctor said he would be very happy with 8.

Steve is in and out of a sleepy state most of the time and so isn’t up for seeing or speaking to anyone but I’ve been passing on everyone’s well wishes and he looks so cute in his new blue stripped pyjamas bought specifically for the hospital stay!

The treatment has now begun……

2009-08-18T21:25:00.000+01:00

Steve had a “line” put into his neck this morning. It is straight into his artery which means when they give him the treatment or any other drugs it can go straight in to his system. It is quite a sight and took a while to put in and Steve is finding it quite uncomfortable. He has to keep it in for the next 3 weeks, so as we understand he will have to in, when he comes home for the week.

At 4pm Steve had the first dose of treatment put into him and then it was a waiting game!
Unfortunately we didn’t have to wait to long as Steve felt very sick and started to shake like he had the most terrible flu. His whole body shook and he went very pale. The nurses here have been amazing and Danny one of the nurses immediately put some anti sickness drugs into his line, followed on by some pethadine which Danny likened to a few large glasses on red wine! It had an instant effect and made the shakes and sickness go away and he went to sleep. Which is what he has been doing on and off for the last 3 hours. Which is such a good thing.

The next dose will be at midnight and then it will be given every 8 hours. So another one at 8am and then 4pm again etc.
We have been advised that every dose will become harder on Steves body but Steve is being his usual amazing self and doing his best to be positive and upbeat, which is tough to do, when your shaking and wanting to be sick! .

The food is not the best but then to be expected! and Ive already been on a couple of coffee and lunch errands. And he has a cupboard of goodies. He is allowed to eat or drink anything he likes, when he feels like it.

Just before we came in, we tried to get Steves all time favourite sweets! Vimto Bon Bons! Unfortunately there appears to be a world wide shortage or at least a Chobham and Woking shortage, as we weren’t able to get them anywhere! So if anyone sees any I know Steve would be over the moon to receive some! But unfortunately they need to be Vimto Bon Bons and not any other type! I know not at least bit fussy! But think we can let him off on this occasion. So please let me know if you have any luck! x

Long but surprisingly lovely first day........

2009-08-17T22:20:00.000+01:00

Well today has been a long but surprisingly lovely day………
I called up this morning to find out whether they had a bed for Steve and had a very strange conversation with a nurse on the ward, which started off with her thinking that Steves surname was Ward!! She didn’t know at that stage whether he had a bed but called me back and told me they did and when I asked what time shall we come in she told me No rush my dear!” So being the pushy person I am, I kept asking yes but what time shall we come! so finally it was decided that he should come in at 2pm.
We went up to London by train and had a lovely surprise at Woking station where we saw Windy and Jeanie and their brood of children on their way to London for a visit.
When we got to the hospital, we were told that the bed wouldn’t be ready until about 7:30pm, so after seeing Tom (Steves Consultant) and the registrar Louise who talked Steve and I through the treatment schedule and how given the bed situation wouldn’t be starting until tomorrow advised us to go out for a walk and some dinner.
The weather in London was lovely so we walked and had coffee at some lovely places before finally having dinner.
We got back to the hospital at about 9pm, only to be told yet again that they still had no bed and Steve would have to sleep on a temporary bed in the ladies ward! At which point his face lit up! Clearly not thinking it through, given that he is on a cancer ward!! Bless him J
Its strange really but its only when I leave Steve in hospital does it truly hit me that he is unwell. I know it shouldn’t be that way, given the fact Ive heard it with my own ears at all of the doctors appointments but its so easy to act and think everything is well, as Steve is so positive, cheerful and upbeat that you can put this terrible illness to the back of your mind.
But leaving him behind and walking out with out him hurts so very much.
Well better get some sleep in my student accommodation, so I can be up early to see him.Thank you to everyone for the kind messages and sorry have not replied to them

Preparing for Monday!

2009-08-14T14:43:00.002+01:00

Well the time is getting closer for Steve to go into hospital!
He goes in on Monday morning and is likely to be in until Saturday but until we get there on Monday we wont know exactly.
Steve will be in St Barts Hospital, West Smithfield, London on GHF ward. And I will be staying up there with him.
I plan to update the blog as much as I can whilst he is in hospital, so please check back or register to receive an e mail when I have done so.
Oh and keep your finger and toes and anything else that you can, crossed!

Photos from Our Holiday

2009-08-14T14:37:00.000+01:00

Have now added our pictures from our holiday o Kodak, so please feel free to have a look.

http://www.kodakgallery.co.uk/ShareLanding.action?c=19u3dxx1.3h75x32ux&x=0&y=-rhkt8y&localeid=en_GB

Home

2009-08-09T09:01:00.000+01:00

Well 5 children, 2 adults, 33 degrees heat and 11 days later and we are home.......

We had a wonderful time, pedlo rides, aqua parks, theme parks, beach Olympics, Lilo wars, ice creams and some great home cooked food! Oh and a romantic night out for Steve and I.

After much nagging (yes I am quite the expert in that!) Steve got up and walked around every 15 minutes on the flight, Rory (Steves youngest nephew) had a watch with an alarm clock and he was a willing time keeper and was more than happy to time the 15 minutes in return for chocolate biscuits as payment from me!

Having ensured that we had all of the paperwork we needed to take 11 syringes through the airport and onto the plane, we were not asked anything about them on either the way out or the way back. So much for no sharp objects!
Steve Im pleased to say has now mastered the art of injecting himself, it is not too sore when he is doing it but it leaves sore lumps under the skin, which means he is fast running out of places to inject himself!

It was a relief and somewhat unreal to finally arrive in Spain. Bryan and Muriel were so pleased to see us. It had taken a lot of doing and their were many times when I thought we would not be going and I know Bryan and Muriel believed the same, so to arrive and spend the time there with them and the kids was amazing And unbelievably at the end of the 11 days they were still smiling or was that relief that their quite house and pool were going to get back to normal!

Steve took to growing the most awful beard whilst we were away, a mixture of ginger and grey! Even Vix was begging him to shave it off, which Im pleased to say he did after 8 days of moaning from all of the girls!

Steves pain in his chest is now under control from the pain killers he takes every 4 hours, which is good, as he is able to sleep at night with out the pain. And he has been putting on weight nearly a stone, since his operation which is good as he will need it to help through the treatment.

Well better get on with the washing!!

New Treatment Date - 17th August

2009-07-25T10:18:00.000+01:00

Steves doctor called last night to tell Steve that they would like to move his treatment date to the 17th August as a particular Doctor that they would like to be involved is away on the 10th.
So now the treatment will take place on the following dates in St Barts Hospital.
17th August - Steve in hospital for one week
24th - Steve home for one week.
31st August - Steve in hosptial for one week
Then the 8 week break with the scan in the middle.