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?