Friday, 15 April 2016

Grey-out

The river's edge; you jump right in. The current's strong; it makes you spin your arms in a wild rotation
Swim - Madder Rose

Check up ... KFLC = 220 ... Hb = 11.8 ... Neutros = 0.72 ...

Previously, on Dial M...

Chapter one: The dramatic bit (All those fractures! Becoming a hospital VIP! Transplant!)

Chapter two: The heroic bit (Recovery! Set backs! Perseverance!)

Chapter three: The euphoric bit ("Normality"! The wonders of living!)

We pick up the plot...

Chapter four: The confusing bit.

Foggy on the beach (Camber Sands)
Since I started to relapse, late last year, its been hard to work out where I'm at. I've suffered a range of pains and symptoms which could be myeloma, or as much my own imagination. Two weeks ago I had what I can only describe as a grey-out. I guess the cause was viral, and it left me feeling lethargic, weak, despondent. Recovered now, I can at least be certain the experience was real - I genuinely do feel so much better. But of whether it was myeloma, or man-flu, I'm less sure. It's no fun for me - and none for Marisa either - to keep lurching, like this, towards the precipice. I'm increasingly daunted by the thought of going back in to treatment - reminded of what it will entail, and of how crippling it is for me, and my entire family, when I cannot function fully.

Sure enough my light chains are creeping up. But we knew that, and DrC doesn't think that's even very meaningful, because we don't know what number we're waiting for. My κ/λ has dropped again - because the lambda number is back up. DrC says he thinks the κ/λ is not worth worrying about. We're simply waiting for symptoms. I ask him to hazard a guess how long we've got to wait. Among all the usual "could be tomorrow" caveats, he suggests at least 6 months. Which is quite a long time.

Last week (when the blood tests were taken) I was really quite neutropenic. We're repeating the tests today, working on the presumption that last week's result reflected the aftermath of my infection, in which case they should be going back up again by now. He'll let me know, and I'll let you know, if this week's result is going even further down, in which case we have a problem. But I'd be surprised if that's where the story is going.

So I'm going to take my neutropenia as evidence that when I felt grey, I was not imagining it. And that instead of disparaging myself with "man-flu" I should rename these episodes as simply "m-flu", and just accept them as a plot device.

DrC says something nice this morning (I don't think it was intentional). He says
"You are only at the beginning of your myeloma journey"
Which I find quite a compelling thought.
When I was diagnosed, I read that median life expectancy is 4 years. Which was sobering. Of course that number is bogus for two reasons. Firstly because it is out of date. All the drugs from velcade onwards have improved things enormously. And secondly because the myeloma cohort is mostly aged 70+. It is not news that some people die in their 70s.

Maybe we're not on chapter four at all. Maybe this is all just the prologue?

5 comments:

  1. Alex - think I'm on the same path. After 5 years post transplant, numbers are creeping up. How long? I asked - It could be 10 years at this rate to get back to what it was when you were diagnosed... but it won't be - was the answer. So wait and see and plan as if it never happened and change those plans when I have to.

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    1. It's a pretty weird way to have to live, isn't it, Steve? Pretending, for practical purposes, like nuthin's happnin'.

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  2. If I may jump in here, I'd like to wish that you both remain treatment-free as long as possible. Should you need treatment may it be as effective and non-toxic as possible!

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  3. Hello Alex. Thank you for your comment on my blog. Without wishing to come across as weird... I like your style :) Having just come out of the other side, I would echo your doctor's comment that there's a long way to go yet. And I really really urge you not to "wait". Please don't let this thing rule you. Get on with life and enjoy yourself. You might easily have ten years or more to actively participate in the world. Listen to your body and learn to recognise the signs of trouble. But mostly, just get out there and live your life because it's the only one you have. Be well! Enjoy!

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    1. Thanks Roo. Actually, I've hardly thought about it really in the last month - the anixety comes and goes in waves, as I'm sure you'll know. 10 years is still not long enough. But it is quite long, when I used to imagine I'd be done by now.

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