Friday, 24 November 2017

Sunny intervals

Hey sunshine, I haven't seen you in a long time. Why don't you show your face and bend my mind?
Cloudy - Simon & Garfunkel

Checkup ... KFLC = 641 ... κ/λ = 95 ... Hb = 11.2 ...

I've hesitated to post this. It's 2 weeks now since my last appointment, and more since I wrote much of what follows. It seems bleak to blog negativity, when really I should just be grateful for each month I keep out of the chemo unit. But life is more complex than that.

My 'eloma appears to have plateaued at the most sensitive moment. Yet again I don't quite tip the balance for treatment, despite last month's advice to the contrary. It's hard to complain - the immediate upshot is a chemo-free Christmas for me. And it is looking increasingly as though I may hit five full chemo-free years since my SCT. What's not to like?

Clouds, and also sunshine. Vilnius

I would love to say I've kept positive, these last few weeks. I'd love to say I can see the purpose, beyond the ordeal. I'd love to boast of maximising the value of my time, of the things I've gone out and done, of the fun I've been to be around. But I would be lying.

I'm conscious, often, not to make special pleading for mm. (There's plenty of other shit dealt out.) But it does have its own exquisite features. Unlike last time, I can see what faces me in its entirety: because I'm not preoccupied with the shock of diagnosis, or the ravages of advanced symptoms. But instead of making it easier, it somehow makes the transaction - the cost, and the benefit - more stark and less appealing.

If the past is any guide, the next few years could be thus:

  • 1 year treatment - chemo and SCT
  • 2(+) years remission - dormant mm accompanied by fatigue and every passing virus
  • 2(+) years relapse - with the clock ticking loudly

And then, with a following wind and a bit of luck, I'll be back where I am now.

I ask myself which of those three phases is the best one to be in.
I guess the answer should be "remission"...
But I've actually felt much better physically in the last couple of years - less fatigued, less jaded...
So I'm tempted to answer "relapse"...
Except I'm haunted by the endless check-ups, discussions, the impending doom...
In some ways "treatment" is the easiest phase...
It's clear what the objective is, and everyone rallies round in support....

But what kind of insanity is that! Am I willing myself into chemo? Everyone knows that being on chemo sucks. If I'm even entertaining the thought that it might make me happier, then I must have lost my mind.

When I first researched myeloma, all those years ago now, one of the things that fixed in my head was the description of hypercalcemia symptoms as "stones, bones, groans, thrones and psychiatric overtones". It didn't seem at all surprising, to me, that the various painful and dignity depriving symptoms would between them tend to impact mental health. (And hypercalcemia is but one component of myeloma.) It's easiest to restrict conversation to talk about the physical indignities, of course. I reckon I'm pretty mentally robust, if I'm honest, but the endless assault of myeloma is still tough.

(Sorry for all the moaning.)

I'll post a follow up, in a couple of days, about the treatment ahead.


Lorna A. said...

It's tough, not just for you but for the other half too. I'm ready to be committed after all we've been through.

Anonymous said...

I am great at the strategy, the long-term roadmap planning, recalibrating, I am not so good at the living in the ‘now’. I bought a copy of ‘The Power of Now’ by Eckhart Tolle, but did not finish it, it was perhaps too early, I need to make that effort again. Thanks very much for your postings it helps me think the same things through.

Alex Bicknell said...

We can all have padded cells next to one another in the myeloma asylum. And yes, just as hard for the other half, in ways that are similar and also different.

Big hug to you

Alex Bicknell said...

I always lived firmly in the future, was always engaged in a long term plan, wasalways going somewhere, building something, until this.

Myeloma is all about coming to terms with not having a future. We may yet survive decades, but at any given moment we have no future.

Seems my current predicament is a particularly acute manifestation of that. I can make no plans beyond about a month horizon.

I’ll get a copy of that book.

Strength to you too.