Time passes and the observations I use to remind myself that I am making progress become less frequent. In the first post transplant rush I didn't really need to mark anything. Rising blood cell counts, eating solid food, changing drug regimes, moving out of the transplant ward, a few hours without a drip plugged into my chest, even just counting the days - there were so many changes that I didn't really need to observe that I was getting better ("Couldn't get much worse" I hear Ringo singing in the background :)

Once I was out of the hospital and settling in at home again things slowed but there were still plenty of changes. Eating a whole meal, going out in public without a mask, picking Kira up without feeling dizzy, a week without a hospital visit, a month, then two without a blood transfusion. Whenever I felt weak or frustrated I had solid ways to mark and measure and remind myself of the progress I was making.  

Gradually the markers became less frequent, but they were still there. Having my Hickman catheter removed, being able to drink a glass of wine with Deb, feeling safe enough to leave HK and hospitals for a holiday in Thailand. Each of those was important to me, and by September I was feeling good, preparing to find work, starting an exercise regime and getting ready to move on again.

But then the GVHD flared up and over the past three months I've sometimes times felt that I've stopped, and even been losing ground.  I've had skin rashes, sore and gummy dry eyes, followed by arthritic joints, then incredibly sore and stiff muscles. Most recently the focus has moved to my lungs and I've become short of breath. I've had to give up my training sessions and make sure I give myself an extra few minutes for the walk to the ferry - because I know I can't run the last hundred metres if I'm late.  The first few symptoms each lasted some weeks - so I'm hopeful that my lungs will clear up too in due course. This is however 'chronic' GVHD - which means that I could be facing months or years of low level conflict between my two sets of DNA. I shall practice patience until I find out.

It's not all doom and gloom though. The Doc's have increased my drug levels and given me some new steroids to inhale which has helped a lot. After a couple of weekly trips I'm back to visiting the hospital every three weeks which means that they're not particularly worried.  This too will pass.

In the middle of all my self absorbed introspection we had Christmas.  Or Yule, Midwinter, Saturnalia, Sun Return, midwinter solstice, Modranacht, Alban Arthan - whatever you choose to call it.

For thousands of years people have celebrated the the shortest day and longest night of the year and have come up with many different reasons for doing so.  And this morning I realised that I have a special reason to be cheerful this particular mid winter. 

As you can see from the chart below I've passed the 50 percent line!  It's not a cheerful graph - showing the survival (or mortality) rate for adult bone marrow transplantees. But I'm still here, and still pretty healthy, and I'm off the steep scary part of the slope. 


Since I first found this picture my (probably irrational) feeling has been that if/when I got past the year/50% point without major problems I'd be if not home free, then at least on the  home straight.   

So here I am.  Getting better, the sun's shining, and it's a bright shiny new year, Hooray!

And for some photos - try this link