Monday, 25 November 2013

Equals zero

I remember seeing someone dressed in a suit, looking like a lunatic. And we all fall down. There's not enough hours in our trip
Whippin' Piccadilly - Gomez

Check up (from 11th Nov tests): ... Haemoglobin 12.3 ... Neutrophils 2.31 ... Platelets 215 ... Kappa FLCs 69 ...

My head has just about recovered after my last trip to clinic 10 days ago (see Crapulous). What was worst about the whole thing was the unexpectedness of it. Sorry if, via DialM, I inflicted some of the same impact on you. The consultation started so abruptly:
"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?

2 comments:

  1. dear alex,

    I am so sorry you had to go through that hideous episode; the scare, the inappropriateness, the insult, and the initial leaving out of the most important information that should have been a most positive starting-out point - what were they thinking?? I think we both know the answer to that...

    I am so happy for you that things are not only stable but improving as well. it's just a shame you had to go through such a gauntlet of nonsense before you could do a happy dance in your head.

    I am sorry that I am so late in commenting. been through 8 weeks of both external and internal radiation and chemo begins next week. physically, I feel quite well and don't anticipate the chemo that I will be getting will be unduly harsh. emotionally, the grief continues to have it's way with me. but it's a process I must go through, and I have come to the conclusion that, for the enduring love hugh and I shared, the pain in the aftermath is worth all that and more. I almost look forward to chemo - everyone at the cancer center is so loving and caring and kind - they all know our story, and adored hugh, so I get incomparable TLC.

    please know I think of you often and wish you and your lovely family good tidings in the holiday season. I know how hard it is to deal with all the "what ifs" that float into one's mind, but I also know that you are a man gifted with knowing the value of gratitude - the key that unlocks the ability to appreciate the simple joys of ordinary days.

    much love and light to you, my friend,

    karen

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    Replies
    1. Thank you Karen. Best wishes to you too - you are the most amazingly strong person. I hope you recover OK from the radiation, and that the chemo won't - as you put it - be "unduly" harsh.
      Alex

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