D+33 - "Hard Times* " but the Underlying News is Good

I've now been home for three weeks which has been great and I'm nearly five weeks post transplant. The last two weeks have been really hard going with extreme fatigue, the taste problem and also nausea. The result has been that I'm not eating much and probably not drinking quite enough. I've now got oral thrush just to add to the joy of everything! Karine keeps trying all sorts of different things to tempt me to eat and drink. Mostly they smell great but taste foul. It is frustrating for both of us.

The fatigue has meant that every little thing I do has been leaving me feeling absolutely shattered. I've been having a rest after breakfast, then having a shower and another rest etc etc, very tedious!

Going to clinic twice a week (Mondays and Thursdays) has been a real trial although generally a positive experience. Sometimes it has taken me until the end of the following day to recover.

My exercise tolerance dropped and walking around the block became too much. My weight dropped a further 1.5kg and for a few days I dipped below 64kg (less than 10 stone). Still, no need to trouble the X-Ray department, just hold me up to the light! The old jokes are the best, I first heard that one about forty years ago. 

However the good news is that the clinic tells me that on paper everything looks great, my counts continue to rise and I have a rising number of lymphocytes, something I didn't expect to see for sometime. (I think I must have got the wrong end of the stick a few weeks back when I said they might take as long as a year to return). Last week in clinic Prof Russell looked me in the eye and said 'you are doing much better than most at this stage' which coming from him is a big boost. I just wish I felt it!

More good news is that we have started to reduce one of the immunosuppressants and I'm expecting that it will be stopped altogether in a week or two. Hopefully sometime after D+50 (about mid September) the other immune suppressant will also start to be reduced. Unfortunately as one tab reduces others take its place. A quick count today reveals that I'm averaging just over twenty tablets daily so if you want to know why the NHS is in deficit and what happened to the budget, it's to late do anything about it, I just swallowed it!

At yesterday's clinic the anti-emetic was changed and the new one seems much much more effective. The regular antifungal has been stepped up and I have a liquid medicine for the oral thrush. Hopefully this will solve ALL my immediate my problems, no nausea so better appetite and better fluid intake which make me feel less tired, allows me to put some weight back on and enables me to exercise more (well you have to hope don't you!). The thrush might improve the taste problem if I'm really lucky!

I try to keep a perspective on all of this. These problems are really only froth on the surface of the greater scheme of things. By that I mean, yes they are what trouble me every day and occupy much of my attention and generally stop me enjoying life. But that aside they are not terribly important. The thing I try to focus on is that the blood results are gradually improving and getting me back to normal albeit much too slowly for my liking.

Karine and I have bumped into a 'patient volunteer' in outpatients two or three times. He had AML some years ago, had the chemo, subsequently relapsed, had more chemo and a stem cell transplant. Nearly eight years later he is incredibly fit and well so there is hope for us all! He describes having a torrid time after the transplant and how progress is uneven, two steps forward, one step back. It is very heartening to talk to someone so positive.

Next week is the acid test. I have a repeat bone marrow aspirate on Tuesday the first of September and I'm due in clinic two days later so may get the preliminary result then.

Wish me luck! More anon!

* Dickens