The results are in. A couple of weeks away from my BMT anniversary and my blood results are pretty much perfect Ok 12.4Hgb is slightly low for a guy but for a female-bloody like me, it’s just fine. Are people treating me different now that I am O-negative? Not really, but I can see something in their eyes that gives away their prejudice.
So am I cured? No & I never will be. This precursor-T-cell Acute Lymphoblastic Leukaemia is a tenacious son of a beeatch and could come back AT ANY TIME. in 2years, in 2 days, in 22 years, or never… I am basically living as if it is my last 2 years so an ideal balance between self-development, hedonism, meaning, focus & fun. I am certainly living with more enjoyment, motivation, courage & gratitude than I did before Leukaemia, so what do I have to complain about?
Nothing! m x
Okay a super-quick message. I am off for a last minute short holiday in Greece. My plane leaves in a few hours, time to start packing methinks. The Med will be my med tomorrow! After Greece, I am joining Bridget to teach on the IGF (International Guitar Foundation) Guitar Summer school in Bath for a week. I will update when/if I can. I am still a bit anaemic (10.0hgb), but my blood is otherwise good, and I am feeling pretty fit. (I have played squash 3 times in the last week and am yet to lose a game…) This vicious cancer has taken up the last 9 months of my life and I would like a break!
Oh today I had my first post-BMT haircut- what a great feeling to be (relatively) normal and do normal things…
I have finished my Cyclosporin! Feels great to be rid of it- Imagine, I may not have to take any more ever again. Just penicillin and septrim for a few more months and then my immunity jabs (mumps, measles, rubella etc.) I am grateful and humbled not to have experienced any GVHD to speak of. (Even though my blood system is, at last count, 93% grafted) I hope that GVHD is kept at bay now that I am no longer on immuno-suppresants.
What have I been up to? Well, I was best man at my sister’s wedding last week (pictures to follow). It went very well, a rather special event: My sister looked fantastic, Bridget played classical guitar beautifully for the ceremony, no-one fell over and I apparently looked pretty healthy. I was grateful to be around for it.
Yesterday I played my first post-cancer squash match. I was worried that I wouldn’t be able to play, but I lasted an hour and ended up winning 5 games to zero! (9-6, 9-2, 9-0, 9-1, 9-5) Apparently it was not a pity performance from my opponent, so I was very pleased with myself. I am playing again tomorrow, so let’s see how it goes. I am now capable of walking several miles a day without issue. Bridget no longer has to adjust her pace. I may try to get back into jogging again although that is a rather scary concept. I get a little stressed revisiting my old activities, as I fear not being capable of them.
The mornings are still tough. It is like a wall of hopelessness, sorrow and depression paralysing me. I just have to lie down for however long, feel it fully then, when possible, get up and go about my day. I have been offered anti-depressants repeatedly, but am not taking them. Why? Well, because they take 2 weeks to kick in, there always remains the hope that things will improve in the interim. Also, I have found depression to have appeared in my life at the brink of important developmental stages, and am loathe to obfuscate the process. Maybe I am just being silly, but I’d rather be naturally moody than artificially ‘chirpy’. Then again, without drugs, I would now be deceased, so it is not as simple as drugs=bad. But for the time being I am coping ‘au natural’. I guess, I don’t want to miss real issues and opportunities for growth, painful as they might be. This is where I am at the moment, anyway. All I know is that sometimes, when things are okay, I momentarily forget what I have been through and it almost feels like earned happiness.
I have just had a cheese omelette with a watercress salad with olive oil(extra virgin naturally).
Back from the Lake District. Bridget and her family took me for a great 7-mile walk around Ullswater, starting with a steam boat crossing.