CMML 2 STEM CELL TRANSPLANT

Hi

I've had CML for a long time.  So not the same thing but when I was diagnosed over 22 years ago it was VERY poor prognosis and I went from well to VERY seriously ill as my leukaemia rapidly went to a serious (accelerated) stage.

I had a matched unrelated bone marrow transplant over 20 years ago and am here to tell the tale.  When I had mine the prospects of success were "fat chance" but here I am.   One of the longest survivors anywhere in the world.    I'm not going to pretend it was a breeze.  Far from it.   It was rough and for a long time and there were several stages where I was critical and managed to defy the odds.   I appreciate though that the risks nowadays are reduced BUT they're still significant AND it's still not something you'd do if you had any other choice.   

THAT'S something I think you all need to absolutely understand.   I well remember when I went through my preparation more than 20 years ago that I was with my wife and daughters hearing all the points where I'd die or be seriously and gravely ill and frankly I got sick of hearing it and had to say "have you forgotten I've a terminal leukaemia and been told I've only got months to go".   In fact my family tell the tale that I got really annoyed and stood up and said "Well I might just f****** live!"   My consultant also often reminds me that I said it and he's since shared with me that their staff thought I was destined to be "disappointed".  

For me dying wasn't an option.  I was too busy living.   I had things to do.   I was only 43 and until I'd got leukaemia I'd been obscenely fit and health and active.     So for me and mine it was REALLY risky but it was an acceptable risk and something worth taking.  The risks of not doing it were not acceptable to me.   All acceptable risk EVEN though I was going to a place others hadn't been and the real answers to questions was "no-one knows".  

I absolutely valued the support of those immediately around me.  It was really tough for them and their strength and unceasing encouragement to push me on and do everything possible to give me practical and emotional help was invaluable.   The fact that your mother in law is healthy means she starts from a good place.   The fact that she has people who want to support her, likewise.

My family were also concerned prior with "stuff" but now they say they're glad they didn't really know what was in store and they appreciate that prior they'd been concerned about the wrong things.    They came to appreciate, just as I did, that you take each day as it comes and just concentrate on being there for each other.  You're going to be managing uncertainty.    That's the reality.   IF you're good with managing change and uncertainty you'll have an advantage but even so this will test you all.  If not, you're all about to learn what works.   Kind of dig in deep to manage what you can control and effect and try not to be concerned about "what if's" and "when by's" .     Do what you can and try not to focus on "can't". 

No-one but no-one can tell you what the outcome will be.   I know that.   My prognosis was I'd be extraordinarily lucky - indeed the first - if I made it past 3 years BUT I'd be doing a lot to help with research into managing transplantation for "older" patients so I could give it a go on a trial.        And now it's "Hello, I'm still here"   and I'm very well and still VERY fit for my age and I still work.  I train horses and I teach people to ride.  I'm 65 and I know for absolute certainty that there's plenty of folks not been anywhere near as ill as I have that could ever physically do what I do. 

The big thing that we were unprepared for and possibly that was a good thing because frankly you can't prepare was how long it went on for.   I kind of concentrated on the transplant and surviving that and getting out of hospital and then there was (for me) years of consequential serious poor health.   BUT as I said you have to take things as they come and you can't waste time and emotional energy on "coulds and mights and what ifs"

Grants etc - Ask at the hospital about seeing a support specialist who can let you know everything that's available.       I wasn't concerned about a wig (male) but I will tell you that I was transplanted at the same time as 3 women and we got to know each other very well through adversity and telephones in our separate isolation wards.   No-one but no-one was even remotely interested in how they looked.  We had much more serious things to think about.    I remember my 20 year old daughter saying her young friends had said to her that it must be one of the worst things losing hair with chemo.   She was having an off day and responded abrubtly with "No!  It's the fact he might die".   So there's something there in terms of managing change and uncertainty about putting things in perspective.      We all also had graft versus host disease post transplant and which meant our skin was VERY sensitive and temperature control messed up and so a wig would be the last thing you wanted.     I'm sure she'll be routinely advised about hair loss and wigsas part of the normal preparation process but just take it as it comes and then you're not planning something that won't be necessary or wanted.  

All the best and here's hoping for good luck, good support, great medical science, resilience and lots and lots of hope for a good outcome.