Here we are then a year a two days after I received the little bag of stem cells at Kings College Hospital.
In an ideal world I would have expected to be much further along the road to recovery than this but this year really has been a case of three steps forward two steps back and a series of different bouts of secondary illness and infections have put the kybosh on long term recuperation. But as I keep on reminding myself (and people around me) the headline news is great. I have 100% chimerism which means that none of my original diseased bone marrow survived the chemo and that all the new stuff has grown from the stem cell transplant - this is as close to full remission as it's possible to get and means barring life taking a revenge dump on me, that I should have a least another 25 years.
The sort of silly crap I've had going on for the past year is principally down to various different types of GVHD (Graft versus host disease) which is the stem cell graft being not quite fully comfortable in it's new environment - even though it comprises all of my bone marrow. It has manifested itself in a couple of different ways the first was huge and very persistent mouth ulcers which made eating very tricky, fingers crossed I'm just about over the worst of those now.
The second was (is) GVHD of the GI tract which started as intestinal ulcers, gut cramps and colitis with the obvious knock on effects of both loss of appetite and the raging trots - this has meant that I have struggled to stay above 9st 4lbs for most of the year. So there would be a period when one or other of these symptoms would relieve and I was able to start packing food in to gain weight only for it to drop away a couple of weeks later due to a relapse. The drugs used to treat GVHD are immuno-supressants which impact on blood content and (as the name suggests) supress the immune system to try and wipe out the GVHD reaction. An obvious result of this is that the individual's immune system is supressed in relation to any other disease or infection that rocks up at the scene, so coughs, colds and all the little delights that Milo brings home from nursery or pre-school are pretty much guaranteed head space.
Now anyone who knows me will be aware that I am (or was) surprisingly vain - given how little I had to be vain about. But a year of chemo, recovery and meds have pretty much screwed me over. As I said I've lost 3 to 3.5 stone and weigh about 9st and a bit with little skinny chicken legs and virtually no lean muscle anywhere on my body, the steroids I'm taking are making me both moon faced and spotty and lack of sleep means I pretty much have permanent big bags under my eyes - however such is the extent of personal delusion that I still can't pass a mirror without checking my bad self out.
I've done just under a quarter of the light therapy (photopheresis) sessions that I'm due to have and according to the nurses at Guys the next three or so sessions will be when the results start kicking in so I imagine there may be a very gradual reduction in my meds levels as the docs attempt to establish what the minimum levels to support my condition will be - I'm very much hoping it to be zilch. Some of my fellow GVHD sufferers at Guys really do have it way worse though, their skin looks like its been sand blasted and they are permanently swathed from head to foot in scarves, masks and gloves to protect their skin and ravaged immune systems from potentially lethal conditions that 99.99% of the rest of humanity isn't even aware.
The fact that I'm writing again signifies to me that I am coming out of another crappy period and am anticipating that things will improve.
