Graft Versus Host with the Most (Part 29)


It's back.

The steroid dose is now down to 12.5mg a day and the chronic Graft versus Host Disease (cGvHD) has started to bubble up to the surface of my skin.

The affected areas at the moment are my thighs and elbow pits. It's a horrible experience but bearable. At this stage I think it can still be managed by moisturisers and steroid cream.


What is difficult to deal with is that I know it's only going to get worse.

The treatment at Rotherham may have helped but it certainly has not cured me.

The pessimist in me would be keen to point out that I'm actually worse off today than I was before my bone marrow transplant.

Now I've got leukaemia, cGvHD, a terrible immune system, normal energy levels and a head like a Space Hopper.

But of course on the plus side I'm not dead.

I know I am a positive person but sometimes I think a break wouldn't be too much to ask for.

What I am also coming round to accept is that this is something I will NEVER recover from.

These red patches on my thighs are only going to spread and get worse as the steroids reduce further.


I suspect my skin could eventually break down like it did before.

It's dangerous to stay on these drugs long-term and from a vanity point of view I have always tried to have a laugh about my bloated appearance but on the inside it is getting me down.

During the last four months I have met, or heard from, lots of people who live with cGvHD around the world and it can be a pretty miserable or challenging existence.

Many are never able to return to work, and if they do, just get struck down with serious infections.

In some, cGvHD spreads to other organs like their eyes, lungs, liver and gut.

It can be unbearably itchy, sore and hugely debilitating.

Not bad for a condition hardly anyone has heard of.

For me the skin around my legs is really tight. It's like walking on two tubes.


It's not too painful but jogging and walking, especially uphill, is very difficult.

Have you ever been in the sea then dried your legs off in the sun? Sometimes my legs feel like a more uncomfortable version of that.

Other times it's more like mild sunburn and at the moment it appears to be flaring up then dying down across different areas of the body.

My plan was always to make a full recovery, get back to work and start playing football again.

Now I just don't think it's ever going to happen.

Having your own immune system nibble away at you from the inside is a very unpleasant concept, not least because there is nothing I can do to stop it.

On a lighter note, I have always liked to think of myself as a metro-sexual kind of guy, someone who is down with my female friends and readers.

So this last picture is for you sisters:


The steds have actually given me stretch marks!


Hi Adrian

It must be so hard for you yet you feel able to share this with us - you are incredibly brave.This thing is so frustrating for you, lets hope the docs get a handle on the cGVHD and be able to control it-yet again this will take time and patience.
You certainly learn patience with leukaemia!
Like you said, your plus side is you`re ALIVE.

Well,well the Keegan & Wise show has yet to get off the ground - surprise,surprise!

Take care, Adrian & Best Wishes to you & your family.


What I wouldn't give for stretch marks!!! After 7 months in the Marsden with GVHD of the gut and liver I now weigh 57.6 kls (the .6 is very important) when all this started I was 81kls. I don't even like chocolate any more how mean is that. So putting enough weight on to give me the energy to walk is my problem whats wrong with a bit of a rash and a few stretch marks. Keep you pecker up mate it does get better. I'm only a few months ahead of you but have followed your progress via my wife Trish and you have kept me goin, Kick arse it's the only way.
Regards, Phil

Hi Adrian,

Just wanted to let you know that everyone at the Anthony Nolan Trust is thinking of you in this difficult time.

Keep hold of that fighting spirit,

Take Care,

Dear Liz, Phil and Caroline,

Thanks a lot for your comments. It does help when people get in touch like you all have.

I think it will be OK and like I say it's under control at the moment. Long term it just looks a bit bleak.

Cheers though - hope the "cheeky" stretch marks were not too unpleasant.


So sorry to hear you have yet another setback - it's a wonder you aren't chewing the carpet and yelling GIMME A BREAK by now. Maybe you are! If so, please post another video.

Jill x

Hi Adrian, sorry you are feeling down, its very understandable after all you have been through and continue to. I know its very easy for me to say, but stay positive. You are doing a fantastic job...the humour keeps you going but I know you must get really upset. Don`t take no notice of your appearance, you are a fantastic person and we all like you the way you are!! Hope you start to feel a bit better soon and the GVHD settles down a bit.. Lots of love Dawn xxx

PS I also have lots of stretch marks, I see them as a time in my life, see it as a reminder of all you have been through and come through.. xxx

Adrian, your fighting spirit comes through in every post you make. Sorry to hear the cGvHD has flared up with a vengeance. I can't imagine how uncomfortable those rashes are, and how frustrating it must be.

Stay positive! All the best.


I always wondered what a metro-sexual did - now I know! They show off their stretchmarks! :-)

And I agree with you - it's time you got a break from all this... If I had a magic wand, I would send it to you.

Sending a hug from across the Big Pond
love and light
Steven's mom

Hello Adrian what amazing people write on this blog everyone supporting each other and yetmore and more people beyond the horizon.
Looking forward to seeing those stretch marks on Friday much love Aunty Lucy Uncle Brian xx

Hi Adrian. It would seem you're in for a rough trot of it (understatement of the century)

I must say that from the photos you have posted and the descriptions you have given (tightness of skin redness and soreness etc), the skin part of your current condition sounds a lot like the Eczema I've had my whole life. Obviously it's a lot more serious and the cause if different, but the symptoms sound similar. Are you treating the symptoms in a similar way? If so, I've been able to keep my eczema down to a pretty respectable level for the past ten or so years through different methods.

I'd be happy to pass on any tips or ideas if you'd like them (If that isn't too Presumptuous of me) Obviously you have a lot of specialists working on it, and I'm no Phd, but information can't hurt, can it?

Hope things go well for you. Best wishes,


Morning everyone. Thanks for all your comments:

Jill- good luck with your treatment. Thanks for the message the other day and keeping me updated with all the drama of local news. Bloody cat woman.

Dawn- stretch marks rock! Sometimes I feel like an honourary woman...

Catherine - it is frustrating but at this stage the rashes look a lot worse than they are. I'm lucky so far because they are not too sore, or worse, itchy.

Annie - lovely to hear from America. Glad to be able to provide an education in metrosexuality, whatever that is! That magic wand would be excellent.

Lucy - Will be good to see you both on Friday if you are both still up for it. How is Brian?

Keri - Thanks. Feel free to post any advice about controlling your eczema. I think I need to be open to all suggestions.

If it's a powerful moisturiser you need, we* were recommended "UDDERly sMOOth",which is widely used in the States for post-chemo skin problems. Yes, as you may have guessed it is actually intended for cows with sore teats but I have it on very good authority that it is the best moisturiser money can buy! Available in the UK via "notjustforcows" dot co dot uk.

* "We" consists of myself and my husband, who is a Multiple Myeloma patient. Similar problems, different diagnosis.

Hi Adrian,

Overcoming the mountain of the BMT only to find yourself now battling with the cGvHD must feel incredibly tough - not to mention unfair.

It's brilliant that throughout this whole experience you've been so courageous in your determination to keep holding on to the positive - but you're also entitled to mind like hell on those days when it feels as if you're constantly fighting on different fronts without pause for breath between battlegrounds.

To acknowledge your enemies is to stare them in the face, and that takes just as much courage as staying positive.


(PS. I have myelodysplasia, which is a doddle compared to full blown leukaemia, but the only chance of a cure, at present, is a bone marrow transplant that intentionally evokes GvHD. I keep telling myself that if you, and so many others can get through it, then so can I).

Cheers Pru. Sorry to hear of your ailment. I hope you can avoid a bmt but if you can't you will definitely get through it. What stage are you at now?

Morning Roobeedoo. That product sounds incredible. Soothing cows' teats - are you winding me up?! I am tempted to say, "Pull the udder one..."

Hi Adrian

Can't believe you're still having to fight more and more problems. You're more than entitled to get down about it, but just try to focus on the positive things. You're still working, you're getting married soon and you have so many people supporting you and rooting for you.

I really hope that you manage to find some way of keeping the GVHD under control as much as possible. The udder cream sounds interesting to say the least. Must be worth a shot - although you'll just have to hope it doesn't have any side effects. We don't want you 'moo-ing' on the next post!

Julie x

Hi Elin,

Lovely to hear from you. I'm so sorry about my dreadful attempt at speaking your language! Was it really like Chinese?!

How is your health at the moment and what have your main problems been?

Hope to hear from you soon,


Hi Julie. Thanks for keeping an eye on the blog. How are your wedding plans coming along? Had a busy day today covering two national lead stories - missing Shannon Matthews in Dewsbury and Steve Wright being found guilty of murdering a prostitute from Huddersfield.

See you soon and best wishes to John.

I have to be honest, and I am not sure you can handle really didn't sound like Chinese at all! But, I appreciate the fact that you tried.

As for my health problem, so far I still not sure what's going on. I rather not to guess or assume anything until I know for sure. If you want, you can give me your email address. I will write you more details when I know more. It is nothing too serious, I think.

Hi Adrian,
Thanks a lot for writing your very honest blog. It really helps me to know what is going on in Ian's head (24yrs) as he continues to struggle with cgvhd.
From experience with lots of manifestations of cgvhd, I would just like to say, that it is probably best if you don't let this skin flair get any worse or reduce your pred any further.
It is a good idea to treat cgvhd symptoms in the early stages rather than letting things progress. It might just mean a bit of a temporary increase or alteration to your immune suppressants.
Like you, Ian hated the big face and the stretch marks. He especially didn't like the fact that people didn't recognise him in the street. Over time his stretch marks have faded a lot and he is no longer conscious of them.
Hang in there Adrian, we need you telling the story of the post transplant experience. So many people think that once the transplant is done that the patient is joyfully returned to their old healthy life - that just isn't true for an awful lot of people.
Jump on top of this skin gvhd flair quickly mate and hopefully your spirits will be lifted again soon.
Also very best wishes for a big NEGATIVE for your leukaemia markers in April.
Thinking of you
Best Wishes

Hi Clare,

Thanks for your comment. I will bear Ian's experiences in mind when I see my consultant on Tuesday. I've seen your posts on the cGvHD mailing list - it is a bit of a nightmare isn't it.

I've been following the posts but not wanted to comment back. If I'm honest some of the other people's experiences of this disease have really upset me. I never realised that a lot of people are NEVER able to return fully to work.

Thankfully it looks like my skin outbreak has come back under control so maybe we can risk another slight drop in the steds?

Hi Adrian, hope you are feeling better, and recovering from the GVHD.... I am after some free publicity to be honest!!! (Cheeky cow aint I!!) I am doing the race for life in June and would like to see if any of the good people who leave comments on here would sponsor me... My web page is:

Thanks if you do choose to sponsor this worthy cause. Dawn xxxx

Good on you Dawn and good luck!

Hi Adrian,
A friend told me about your blog and I you are incrediby inspiring. I volunteer for Marrow- a student group that help the Anthony Nolan Trust. We are holding a Bone Marrow Awareness Week at the SHeffield students union to raise money for ANT and recruit people onto the register.
Please feel free to say no way but we are having some informal talks on thursday 13th march to raise awareness of the need for bone marrow donors and I wondered if you would feel up to talking about your experiences. I think it would really hit home but please feel free to say no! It was just a thought!
All the best from Sheffield Marrow- we are thinking of you.

Hello Adrian

Hope you`re ok.
All this talk of cows - I`m an expert! Did I ever tell you, we live on a dairy farm!My top tip is `udder salve` which is very good for cows tits according to my husband and it keeps his hands nice and soft. He`s saying don`t type this, what has this to do with leukaemia?! A lot if you`ve got dry skin.
As I`m typing this, we are watching Sheffield United v Middlesborough ( not very inspiring ).
They`ve just put on Rob Hulse! Ex Crewe Alex player.
Still no progress with Newcastle - ho ho!
On a serious note, we`ve joined our local leukaemia fund raising branch (LRF) and helping in that way plus supporting Nantwich YFC are doing great work.
Best Wishes as always to you and your family.


Hi Adrian

I have enjoyed reading your blog.

I had a stem cell transplant in June 2007 in the States, so you are just a little ahead of me. Reading your blog brought back memories of many things I had already forgotten.

I hopefully had CLL/SLL, but time will tell what the outcome will be. I am having some cGVHD, but not to your extent. It's interesting to see the differences in treatment, UK vs. USA.

Feel free to write anytime, but you seem to have your hands full. Congratulations on your engagement.

Hi Adrian
Hope that your skin is feeling better. How great to have so many helpful suggestions to aid recovery. If you have room on the shelf to put anything else, I would add Avon Skin so Soft and fresh replenishing lotion. (£3.00)Eric used this and found it helped and it is also used by Canadian lumberjacks to keep off mosquitoes.... just in case Huddersfield gets an invasion due to Global warming!!!
How about putting your blog into print with all the comments? There are many people out there who would find it inspiring and very helpful and not everyone can access a computer.
I am sure that you would have no difficulty in getting sponsers for the printing costs. Can you fit it in with all the other things going on, not to mention the wedding plans?
Keep positive Adrian. You will get a break,you see!
Love Jamie

Firstly, sorry to hear the cGVHD is flaring up again. Secondly, congratulations on getting 500 comments, you have still got some moves that the back curtain of Time tunnel/Double Vision would be proud to witness!

Hi Adrian!

Hope you are feeling a bit better!

I've been reading your blog for a while, and you have been such an encouragement and inspiration to me! My dad had a disease called aplastic anaemia and underwent a bone marrow transplant in October. He is doing well but we have had some scary times along the way.

I just want to thank you for your insight, and great sense of humour which I have really come to appreciate the importance of over the last year. Keep up the good work!

Love & prayers

hello your dad is a teacher at our school and when he told me that he had a son with lukemia i wanted to find out more but he also told me he was in a bad state when you were diagnosed my heart goes out to you and all your family i carnt imagine what you must be feeling right now and can i say you dad is a fantastic teacher he has made a real change at tibshelf school but i hope you really get well soon my heart really goes out to you.
god bless

Just read excerpts from your diary in Daily Mail. Really hit home. My daughter is 21 and 3 years ago was diagnosed with a brain tumour. After 2 long operations, and a course of radiotherapy she has been told that the tumour, though benign, is inoperable. She is now registered partially sighted and has been told that her sight will go completely in time. It has been a long, often lonely process to come to terms with all the implications of this devastating illness and the realisation that none of our lives will ever be the same again. Steroids have impacted on her in such diverse ways - the angel, in terms of life-saving treatment after 2 brain haemhorrages, and the devil, due to the on-going changes to face and body. Just wanted to say how brave you are to publish your thoughts, and how comforting it is to share so many of them.

hi adrian read your article in the daily mail
I also have GHVD try baby oil in the bath and massage baby oil into skin

best wishes julie nottingham

Dear Adrian,

I was very moved by seeing you on Breakfast Telly this morning. I am somebody who has struggled with illness for 20 years, but not life-threatening like yours. However, I have been on an amazing journey and now know that it was all about my need to change and grow into who I really am. Conventional medicine never helped and I am now studying natural nutrition. There is an amazing book called 'Cancer is not a Disease' and it is a totally new way of looking at it and worth a read. Have you thought of trying alternative treatments like Gerson Therapy. It sounds as though your body is very toxic right now with all the drugs. With help you can start a Nature Cure Diet and supporting therapies.

Sending you love, healing and prayers

Susie x

About this Entry

This page contains a single entry by Adrian Sudbury published on February 18, 2008 8:06 PM.

I can only apologise: A "unique" thanks to everyone who has recently commented was the previous entry in this blog.

No pictures of my arse this week and can you help with a little dilemma? (Part 30) is the next entry in this blog.

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