You’ve got to lift yourself up so high, you can’t see the ground, you don’t hear a sound. You’ve got to move it up so slow, you see it all, you’ll probably fallOne Way To Go – The VerveCheckup… KFLC=75 Wish I’d kept my ticket *My clinic app…
So just be gentle with me. I’m not as young as I was. And I’ll be gentle with youBe gentle with me – The boy least likely toTwo updates, only one of them strictly about myelomaI was unwell a few weeks ago. I developed pain in my hip – which I’m pretty …
Within – Daft Punk
I’ve been there just once before, 74 weeks previously, on 19th August 2012. The previous occasion was at the end of my first week of chemo, and at the height of the symptoms of my myeloma. It was probably the lowest moment of my life.
We had gone for a weekend away taking our bicycles with us. But I was in no fit state to hold a bike, let alone ride one. I could barely walk. Marisa, reading this, will feel bad that we went away that weekend at all. You shouldn’t, honey. The intention was right. The children enjoyed it. I’m glad we went. I was destined to feel dreadful, wherever I was.
What surprised me last weekend – apart from an unwelcome sense of “nostalgia” (if it can be called that), was quite how vague my memories of the place were. It was only when I saw it again that I had any real recollections at all. In some respects the summer and autumn of 2012 is still very vivid for me. But in other ways, fortunately, it is remarkably hazy.
Whippin’ Piccadilly – Gomez
“I’m involved in a clinical trial of allogeneic transplants. I wanted to see you because…”
Given that I was there to get my monthly numbers, I inevitably finished that sentence in my own head
“…your myeloma is relapsing”
What transpired, after a bit more waffle, though, was that his thought process was actually proceeding
“…you had a transplant recently, and that’s my recruitment cohort”
In order words, he wasn’t thinking about me at all, really. Which is quite annoying and insulting. But it’s hard to complain, because I certainly would prefer that doctors want to discuss things with me. I don’t want “grumpy, do not disturb!” on my medical notes. Still, I wish doctors had more training (in some cases any at all would do) in what we in the trashy trade of marketing would call “consumer-centric” thinking.
In the end, the conversation was a good one. But I would have loved it if he’d started up front with what matters, most immediately, to me
“The good news is, your light chain scores are still stable”
He never said that, though they are.
Even better, he could have emailed me in advance
“I’m conducting a trial on allogeneic transplants for people who have recently had auto transplants. Given your disease profile, and your current stable remission, we will probably decide that now is not an appropriate moment for you to have an allogeneic transplant, but I would like to discuss this with you…”
That would have been really good. But I think I will be a long time dead before the NHS achieves that kind of patient management.
In the meantime, I have to be grateful that they are thinking about all the possibilities, and just roll with the punches.
Anyway, in my rush to get it all out of my head, I forgot to pass on the crucial information to you. My blood counts are stable – improving actually. And my light chains remain low: they seem to creep up 3 or 4 a month, which is well below the threshold for any significance. So hurrah for that.
News equals zero. As all good equations should. Though sometimes, it doesn’t quite feel like that, does it?
On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are … Continue reading →
I watch the ice melt on the glass, while the eloquent young pilgrims pass, and leave behind their trail, imploring us all not to fail Young Pilgrims – The Shins Day 17 : recuperating chez moi There’s lots of good things about being home. I have Marisa …
One of the things about being disabled that really bothers me is having lost the ability to punch someone right in the nose. Of course, the disability is central to wanting to throw the punch in the first place. What I’m mumbling about is the category of self-appointed prophets of social wisdom who make statements […]