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Adrian's latest treatment

One of the hardest aspects - after having hopefully overcome two-types of leukaemia - is explaining to people that this post-transplant complication is potentially just as life-threatening.

My new bone marrow has engrafted successfully. It is making new red blood cells, platelets and white blood cells - the cells that help fight off infection. Unfortunately, these new white blood cells are starting to attack my skin. If left alone they could attack other organs of the body including the liver and lungs.

Chronic Graft versus Host Disease (cGvHD) leads to the death of a significant number of transplant patients every year. If it can't be cured then the sufferer can be left with seriously debilitating long-term consequences.

The good news is there are a number of treatments now available. Many of them are cutting edge and more research is required to understand exactly how they work. The treatment I have just started also frankly sounds mental! It involves a kind of dialysis machine, chemicals, UV light and Rotherham.

I hope this post will explain in a bit more detail the nature of cGvHD and the treatment that offers me a 50% chance of long-term cure. On a personal note, I have to say I am worried about the future. I've just got this really bad feeling that I'm not going to fully get over this.

Fat Face on tour '07 (Part 19)

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Horace the legend
Last week when I realised I would need another three months of treatment it's fair to say it got me down a bit. The next phase is extremely complicated and not well-understood so I will explain further in the next post.

To boost my spirits I took a road trip to see more of the friends who have been so helpful to me throughout the last year. As I mentioned before, despite bloating my face and body, the steroids are actually making me feel pretty good, so I thought, 'Let's get away and do something positive'.

If you were wondering, the man in the picture is my good friend Horace Woollard - supping the elixir of life. He's 84 and needless to say is an absolute legend. Now you have the opportunity to meet Hoarce too, along with some of the other fantastic charcters I encountered on my A1 adventure down south.

A touch of chronic Graft versus Host Disease (Part 18)

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Just when everything seemed to be falling into place I have had another kick in the teeth.

Yet again it's potentially very serious, possibly untreatable, but if it was anything less than that I am sure you would refuse to read on any further - and quite right too.

Adrian with Graft versus Host Disease

I have a suspected outbreak of chronic Graft versus Host Disease (cGvHD). As you can see from this picture it has attacked my skin leaving it flakier than a flapjack and as sore as salt and vinegar crisps on a mouth ulcer.

So sit back and let me tell you a tale of a red raw epidermis, high dose steroids and the undeniably homoerotic application of baby oil.

Line Out (Part 16)

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The wait goes on. I've still not heard anything so continue to wait nervously.

I'm not sleeping brilliantly but apart from that I'm fine.

The good news is that my Hickman Line, that tube running out of my chest, has been removed from my body. It's literally been a part of me since December and has undoubtedly been a big part of my treatment.

Hickman Line

Every time blood needed to be taken, or chemicals administered - which was most of the time - the Hickman line, named Fred by my aunt, has made it all possible without the use of needles.

The Waiting Room (Part 15)

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Apologies for not updating this blog sooner.

I felt for a while that I should have written something but I was never quite sure what to say. The amazing comments that have come from the hundreds of people regularly taking an interest in my story have been unexpected and inspirational for me.

It's also been helpful knowing that the posts have provided a useful insight to people who will have to undergo a bone marrow transplant in the future.

I suppose it's with this group of people in mind that I've been most reluctant to write anything else. Much of my time post-transplant hasn't been much fun and I'm still nowhere near full-fitness.

I finally decided to write this post after talking to my grandma in Nottingham. Basically she's bullied me into writing it arguing that people respect honesty and the truth- even though it doesn't always make for pleasant reading. I think she's right, so here we go.

The first thing to say is I am waiting for the results of my final bone marrow sample. It's been sent away for analysis and the results will show that the leukaemia is either still here or gone completely.

Thank you (Part 14)

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Throughout my illness I have been given the most tremendous support.

Firstly I would like to thank all the nurses, doctors and support staff on ward P3. They have been brilliant to me. Every time I have felt down someone has come in and cheered me up just by spending time with me or listening to me talk drivel.

I could not have come this far without them and I don't think I will ever be able to express my full gratitude to the team.

I also want to say thank you to my anonymous donor who has so generously given me a chance to live.

When I was diagnosed with leukaemia back in November it was like a huge rock being thrown into a pool, the ripples of which swept out across so many friends, family members and colleagues.

Their response has also been incredible raising a large sum of money for charities associated with leukaemia.

My friend Phil Driver ran the London Marathon for the Anthony Nolan Trust, in a pretty impressive four hours. He has also organised a big football tournament in Liverpool at which their will be a drive for new stem cell donors.

I hope he knows how grateful I am for all the effort and time he has personally put in.

Phil has now raised over £5,000 for the Anthony Nolan Trust.

Phil and Adrian at the Marathon

No going back (Part 13)

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I wish none of this was happening to me, but it is.

How do I talk seriously to my girlfriend about dying much younger than I should?

Readers of previous posts will know how important having children is to me, so do we go for IVF knowing full well that by the time they are ten I could be dead?

What sort of impact would it have on their lives?

What does Poppy do then? Getting any life insurance will be virtually impossible so do I bother?

What about buying a house - will Poppy be able to downsize if I die earlier than expected?

Should I ditch saving for a pension?

What about holidays? We both love to travel but I won't be able to go abroad for at least another year or so.

I wish we didn't have to address these questions, but we do.


What would you say if I said stem cell donation differed little from giving blood?

You'd probably say something like, "Shut up Sudders, I'm tired of your online cancer whinging, and if I was a bone marrow donor someone would need to smash my spine."

I have a degree in Physiology, have spent five months in and out of a haematology ward, and I'm still staggered that I have only learnt what stem cell donation is really like.

There is a huge amount of confusion on the issue. I used to give blood but never thought about donating stem cells because I thought there was a slight risk of paralysis.

[ View my Video Diary on bone marrow donation here ]

Transplant (Part 11)

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"You do realise there could be up to a 30% chance of dying during the transplant process. This means for every 100 patients treated in this way, up to 30 could die."

Initially my brain screamed at the consultant that I was fully aware of the percentage concept. Then, as I suppose the doctor intended, that figure transformed into real people, who really could die, in real life.

I always hoped I would be able to avoid a bone marrow transplant, or stem cell transplant as they are now called, and just carry on with the cycles of chemotherapy. But this wasn't to be.

Pneumonia (Part 10)

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After my first bit of chemotherapy I developed a minor infection. Now I was about to experience just how ill someone with a very limited immune system can get.

Thankfully my second lot of chemotherapy went really well. The nurses gave me the same combination of anti-sickness and anti-inflammatory drugs that worked for me on the last day of my previous treatment. I wasn't sick once and was able to function as a normal human being throughout.

Then when my counts came crashing down I remained fine for well over a week. Things were going so well that boredom became the biggest battle. I would watch DVDs kindly donated by friends, and television in the day ward, but there are a lot of hours to kill in a day.

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This page is an archive of recent entries in the Sudders Diary category.

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