D+45 - "The Future's Uncertain ........* "

Karine & I have been thinking about the future recently, assuming I have one! I have a 75% chance of surviving the next two years and my five year survival rate is about fifty fifty. These figures are of course very approximate. The fact that I was moderately fit and generally well before diagnosis is in my favour, non smoker, no heart disease or diabetes etc, not overweight etc etc. On the other hand I'm 63 and that worsens my prognosis, the chaotic genetic make up of my tumour (cytogenetics) is also pretty bad, but the fact that it reverted to normal after the first cycle is a good sign.

Make of this what you will. You can see that calculating an individual's prognosis is guesswork at best even though the above survival rates are accurate. As always, the laws of large numbers don't really apply to individuals. One key point is that the longer I survive the better are my chances. One of the consultants told me that the relapse rate after two years is small and after five years is 'vanishingly small' which is very reassuring. Anyway, enough of this, back to the future to coin a phrase!

For the next year I am confined to the UK because of the increased risk of infection, GVHD (graft versus host disease, do try and keep up!) and of having a relapse. So as soon as I'm well enough, our plan is to start visiting family and old friends and to explore parts of the UK we don't know. To begin with this will be shortish visits not too far from home.

I have switched from twice weekly to weekly follow up so that will help. The main limiting factors are fatigue and dietary problems. I'm on a 'pregnancy diet' because of the increased risk of infections, so no unpasteurised or blue cheeses, no soft boiled eggs etc. Also I'm having a pretty bland diet because of the taste problems though thankfully that is slowly improving. As for the fatigue I was having two naps a day, now down to one but I'm in bed by about 7.30 most evenings. Again this is slowly improving. I keep being told that my progress will be uneven, two steps forward, one step back. I made a big jump forward about twelve days ago and so far haven't gone back for which I'm very grateful. Of course some days are better than others.

Meanwhile my exercise tolerance is slowly improving. Karine and I walked part way round a small local lake on Thursday and I think I'll manage the whole thing next time. My walking speed has improved from the slow shamble of ten days ago. All in all there is progress albeit much too slowly for my liking.

Next time: Bone Marrow Aspirate result, 

possibly the MRD (minimal residual disease) and chimerism results

 though I think that is more likely to be one or two weeks later.

*The Doors, Morrison Hotel, "Roadhouse Blues"