No pictures of my arse this week and can you help with a little dilemma? (Part 30)


Plunged into despair, buoyed by incandescent hope, crushed by another set-back, fighting illness and misery from all quarters, stuck in an impossible situation yet life remains rich with possibility; determined not to let this disease beat me.

What a pretentious gob shite.

Now let's get down to business.

The chronic Graft versus Host Disease (cGvHD) is back under control and the steroid dose has been reduced to 10mg a day. So far there has been a slight rash and my skin is a little drier but nothing else.

I also have stopped needing to go to the toilet in the middle of the night. Bonus.

What is important for people to understand is that some sufferers from cGvHD NEVER make a full recovery. This condition wrecks lives and if it is really debilitating can make your life beyond miserable.

I've heard tales from many people, while being treated at Rotherham, and from around the globe thanks to a cGvHD mailing list and you realise it's rather depressing stuff.

Endless cycles of steroids, immune system surpression, infection and very unpleasant complications.

And of course no one's heard of cGvHD- loads of people give you sympathy when you've got leukaemia!

But bear in mind a small amount of this bloody thing will actually stop the cancer returning. One fellow cGvHD sufferer, who has lived for years after his transplant and still going strong, says he has actually come to love his cGvHD for that very reason.

I had a very positive meeting with my consultant at Rotherham yesterday.

He says he is determined to get me off the steds and that my face should start deflating at doses below 10mg. Not an actual quote.

Learning more about the nature of cGvHD is also interesting.

He describes it as an 'undulating ocean with peaks and troughs'. Imagine the steroid dose as being a line that increasingly approaches the peaks of the waves.

As the dose drops further, the wave tips start to burst through the steroid line, and you can see this on the surface of your skin.

The disease will naturally rise and fall in a cyclical pattern. I need to learn what is 'normal' for me and spot it before it spirals hideously out of control.

It seems to move around the body and affect different people in different ways.

For example the hairs on my legs have all but gone yet my arms remain ape-like.

My consultant explained that cGvHD can hit the scalp too and cause permanent hair loss there due to scarring and damage of the hair follicles.

Why this all happens, and why different people are affected so differently, remains a mystery.

As for me here is a real life dilemma.

I would really value your opinions on this one.

I'm in a great position at the moment in that I can work from home but still have time to exercise and look after myself.

If I was a teacher or builder with cGvHD this would be much harder.

A job has come up at the Huddersfield Examiner (the paper I work for) which is basically head of multi-media. If it wasn't for cGvHD it would be the perfect promotion for me.

Here are some of the cool things we've done with the site since I got back to work:

The job would be really challenging and I've got lots to offer. The money would also help considerably what with me and Pops looking to marry and buy a house.

But the job needs someone to be in the office - which I understand. The reason I have only had one major infection since November is because I have been so sensible in staying at home.

The other point, which I have talked to the editor about, is that I could get taken seriously ill at any point and be away from work for weeks - if not longer.

And then there is also the possibility of the leukaemia coming back.

My current position allows me to fit work around treatments whereas in the new role that would be a bit more difficult.

Trinity Mirror (the company I work for) have been tremendously supportive to me throughout my illness and I don't want to take on a job that I am unable to give 100% to.

I would be interested to know what you all think.

Finally a big shout out to the journalism students at Sheffield College.

I was asked to go along and speak to them the other day about blogging and online journalism.

When I was at journalism college in Harlow we had a sub-editor from the Mirror come in and talk to us so I hope they weren't too disappointed when old fat head rolled into their classroom.


Go for the job - you'd be great and what was this fancy all singing and dancing new GN3 thing invented for if not to be flexible?!
Hope the talk went well, blog superstar!

Kind of a tough call...

Although I am not i your position health wise (just CML and on Imatinib which looks like it is working) :) All I know is that after the shock of the diagnosis and the early few months the Leukeamia changed my outlook on a whole bunch of areas including work.

So I started to think what I wanted to do with my work (as well as home) life and worked out what was important to me. After a year the perfect job came up at the company I work for,it hit all the criteria and aspirations I had. So I applied and got the job :), and am know sat in an Office in Seattle meeting my new team and getting trained :)

So on one hand I would say, you only have one life use it wisely, but on the other I can udnerstand the caution you have.

I assume you have talked to them and seen what is available to help you work from home more and be prepared to take that on?

Feel free to drop me an email


Hi Adrian,

A dilemma indeed. Immediate reaction was go for it, but the infection risks of being in an office with lots of others is very real. (I'm in a district office with one other, so not so much risk). Know what you mean, too, about not wanting to take on a job that you can't give 100%.

Would they let you try it for size and re-advertise if you found it was unworkable? Does your consultant have a view on this?

There's loads of stuff about employers having to make "reasonable adjustments" for people with disabilities. Cancer is legally classed as a disability, apparently (though few of us would consider ourselves disabled). Would it be possible to do some work from home?

Would be a shame if the illness stopped your career in its tracks because of "what ifs".

Am rambling now. Will shut up.

Best of luck whatever you decide.


Hi Jill,

How are you at the moment? Was the latest treatment successful? Thanks for the input - it is harder than it first appears. Years of soaps and films have made us believe we should go for these things no matter what but then you have to think about the wider picture....

Best wishes

Adrien, hard to say what to do and I'm sure hard for you to decide. I guess my concerns would be, how would your company handle it if you were to need to be off work for an extended time. They have been good to you, so I'm sure they would be open to discuss that possiblity with you. How much work can you handle at this time? What makes you happiest? I know you have thought of these and more. Ultimately you will make the right decision, whatever it is. You are such a brave, kind and caring person. I wish you the Very Best!

Hi Adrian, as others have said I think it's a difficult one to call. I was in a somewhat similar situation when I first went back to work at our Llandudno Junction office of TM and as I think I've already told you got carried out on a stretcher after two weeks infront of all my colleagues! After spending another week in hospital and giving it some very serious thought I just decided what the hell I can't sit in an armchair watching daytime tv for the rest of my life and thankfully apart from the odd hiccup have only missed the odd day off so far. But I can only cope with part time work (I do 16 hours a week spread over four days) so a full-time busy role like yours would be is a different matter. My gut feeling is if you're well enough at the moment is to give it a go and I'm sure your work mates and colleagues will understand if it doesn't work out as you plan. Good luck and keep up the good work! Julian

Hi Adrian,

Only half way through chemo - 3 sessions down, 3 to go. Had scan yesterday - results next week - to see if cancer is responding.


hi adrian,

ive been following your story for the last few months, i also have cgvhd, my skin is very very tight and my joints are very stiff, i cant really walk anywhere because i get so out of breath and i cant even get dressed myself but its a tiny tiny bit better than it was last year! still need a wheelchair to go anywhere though which i hate, im only 23!
im having photophersis too and slowly coming of the steroids, im on 10mg a day now, still have a moon face but i have been taking them for 10 months!
anyway ive just had a look at the GVHD support website you mentioned, it helps alot hearing other peoples storys so just wanted to say thanks because ive not been able to find anything like that before!

Hi Adrian
My first reaction to your question was GO FOR IT! Then to be it possible to apply for the post on a 6 months trial? Another possibility is taking it on as a job share, if your employers are willing. I am sure that there would be some excellent people out there wishing and willing to do this. It has worked very successfully in teaching for a long time (with Head teachers too) Your employers would be getting two sets of brains for the price of one to bounce ideas off each other. If this arrangement has not been tried in your field of journalism then once again you could be the guinea pig!!!
Glad that the meeting with the consultant was positive. That is good news. Love to Poppy

Hi Adrian, glad the GVHD has settled down a bit. Have you asked your employers if you could do a trial of a month and then see how it goes? Then if its not practical ask for a job share like someone else has said. Would the other person in the job share be able to work in the office more? You could then stay at home and do the other work on the web. Hope you sort something out. Dawn xxx

Hello Adrian

I'm Jo. I have only just discovered your blog whilst searching the net for leukaemia related sites.

My little brother John passed away just 3 weeks ago, one week before his 28th birthday. Like you he too had two forms AML and ALL. He had a transplant, beat graph Vs host and also over came RSV. John was about to have tests to see if his transplant was a success when he took ill in febuary. Glandular fever was his final infection. Sounds so odd!

John had so many hopes and dreams left to fulfil.

Why am I boring you with all this??? Well i say make the most of life!! Go for it!!! Life is short, and I think we should all grab the bull by the horns at times.


Hi Jo,

I'm so sorry to hear about your brother. People in our situation all know the risks of having such an impaired immune system but to have got so far just seems so unfair.

Best wishes to you and your family.


To Julian - great advice and nice to have another TM viewpoint!

Hi Adrian,

I reckon go for it if you fancy it.

Think about this.. what if you don't go for it and they give the job to someone else. Who knows what could happen with the other person? They could be unreliable, they could have personal issues that could affect their work, they could get ill themselves (I don't mean to jinx anyone, I'm just saying its a possibility!), or they could just not be very good. All I'm trying to say is that no boss can ever think that anyone is guaranteed to be a dead cert for a job, and there's a chance the job might not be suitable for the person who gets it, no matter who they are or what position they are in to start with - and circumstances change all the time! So, you've got just as much to offer as anyone else. Go fot it mate, you deserve it.

Julie x

Hi Adrian,

You should do what you WANT to do! And if you're not sure what you really want to do, maybe you could try flipping a coin to decide, and if your heart sinks (or rises) at the result that will tell you everything you need to know to make a decision?

The really, really important thing must be that you just keep on planning for your future (and Poppy's!).

(Myelodysplasia is a progressive failure of the bone marrow system that also tends to transform to AML. So a bit like being on chemo: you get anaemic, and your platelets disappear, and your immune system packs up. I was give a median life expectancy, in 2004, of less than 3 years, but I'm staying pretty well, and feel very lucky, and grateful, to still be here! Thank you for being interested...)

All the very best,


If things dont work out would you be able to return to your current job? If they are willing to give you a trial run and you have the security of returning to your current job if things dont work out would definately give it a go. Bit harder if it could mean you are unemployed if things dont work out. Not an easy one!

Hi Adrian!

Glad to hear you had a positive meeting with your consultant.

That job sounds great, I can't really add any more to what everyone else has's a tough call with the infection risk, but I reckon if you're feeling strong and able to perhaps have a trial run, you should go for it!

Best wishes,


Hi Adrian,

I think you've done so well so far why risk the chance of infection. Must say how well you've done and this is the first time I've read your blog but will be coming back for updates.

Anyway we work to live not live to work, I say that the timing isn't right for you and there is a reason for that, and maybe there's something even better around the corner for I being too deep?

Hi Adrian

Been reading all the comments and I don`t know what I can add which will be of any help.Obviously, the natural reaction is to go for it and take the job but like you said the reality and practicalities ( have I spelt that right??) are somewhat different. I tend to agree with Rachel and err on the side of caution. The infection risk maybe just too great, on the other hand you have progressed so well and you must feel up to it, that you may regret taking this opportunity - decisions,decisions!Your blood tests must be fine - I`m amazed you`re thinking like this - you must have a healthy haemoglobin so that in itself is good.Perhaps, you can put this off till you have your April BM done and be able to see where you`re at health wise.
Please beware of infection - it sounds insignifcant but can be a very real danger.
I think the comment from Pru was clever - toss that coin and decide!

Best Wishes as always to you and your family


PS Played Notts Forest last week- good result do you think??

Hi Liz - I'm behind the times. What was the score?

Hi Adrian

Am a bit behind myself - goalless draw against Forest then got thrashed 2-nil by Port Vale,how bad is that! However, we did manage to beat Gillingham last Sat 3-0.If we hadn`t beaten them, I think relegation was a certainty.As it is ,we`re just hovering above the danger zone- need a new manager!!

Take Care


Take the job...I've just spent ages reading this blog since I just stumbled across it...You're hilarious and I really needed to read something from someone suffering from something drastic that can still keep a sense of humour about it. My Mum has copd and is running on 25% lung power and possibly requires a lung transplant...I think I feel sorrier for myself than she does...I'm going to suck that up and stop it now...thanks for that. Oh, I also hope the skin feels better and you don't have to go to the loo as much at night...I'm pregnant again and go so many times a night I want to scream. Of course stubbing my toe on the same stupid pair of shoes I've been too lazy to put away isn't helping.

Morning Emma - thanks for checking the blog out. My sister in law to be is a respiratory physio so if you have any questions she might be able to give you a bit of insight.

I've got to be offered the job first! My interview is next week so it's nice to be thought of.

Very best wishes to your mum.

Hi Adrian

Really pleased to hear you`re up for interview next week - good luck!

Take Care.

I understand why you're hesitating on accepting the job. In one way we need to carry on despite our symptom but we also need flexibility to be kind to ourselves and to cover all the "what ifs".

I'm struggling with the same thing as I try and decide what to do for the rest of my life.

About this Entry

This page contains a single entry by Adrian Sudbury published on March 6, 2008 3:37 PM.

Graft Versus Host with the Most (Part 29) was the previous entry in this blog.

Graft versus Host flare and continued steroid taper (Part 31) is the next entry in this blog.

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