Wednesday 11 January 2017


I had to phone someone so I picked on you. Hey, that's far out, so you heard him too?
Star man - David Bowie

I'll be sharing this video with my kids. The virtue of being nice, in a metaphor they'll understand. No fun living, if you live on the dark side.

Friday 6 January 2017

Sitting pretty

Sitting pretty in the prime of life. I'm so tasty and the price is right
Take a slice - Glass Animals

Today's reading is taken from the book of Crapulous, chapter 94

An appointment with a sole purpose: to discuss my MRI results. (No new blood test results to look forward to.) So it is typical of the limitations of the NHS that, when DrC opens up my notes, the full-body MRI report is still not there. We're left - hardly for the first time - to chat on the basis of what little we know. We warm up with small talk about Christmas, the relative merits of Rome and Copenhagen (I've had the pleasure of visits to both, over the holiday season), and international job opportunities for myeloma specialists. We even touch briefly on brexit. When we get on to Putin, we realise it's time to return to the matter in hand.

So... reading the runes. There's new evidence of damage in my upper thoracic spine, and in my lumbar region. But no evidence of progressing myeloma. DrC thinks it is unlikely that the full-body report will show up pockets of mm, given that the spine does not, and I'm happy to accept this as entirely plausible. He describes this as
"Good news"
But I'm a little more sceptical. I explain my concern. Worsening kyphosis? Chronic pain? Is my spine going to keep slowly crumbling? DrC promises we won't let that happen and says that I could go through more vertebroplasty. I don't think my current symptoms are sufficient to begin that process. At the same time, I don't entirely buy the promise. I make a mental note: I must continue to recognise that my spine is weak so... definitely no return to running; avoid heavy lifting or arduous manual activity; and I must do more regular back exercises. That way I hope I can avoid my back getting much worse. At least, slow the process. And maybe I'll go back to my gp and ask for some more strong painkillers - so when I have a bad day, at least it doesn't hurt.

At the risk of getting into crystal ball territory, I ask DrC, in light of last month's KFLCs, whether it is possible for myeloma to plateau after progressing for so long. I'm rewarded with another parable*.
Cancer gang tattoo?
"Cancer, is not one thing, it is a number of gangs. One gang may be stronger than the others, and so that gang grows bigger. But it is possible the father of that gang is not a stem cell, but one level lower than a stem cell..."
(the metaphor has somewhat broken down, I feel, but let's roll with it)
" which case it may not be immortal, and after growing, that gang may die. In which case, in a low-malignancy disease, it is possible to see progression stop or even appear to reverse".
It's why, he tells me, it's best to be cautious about treating mm - avoiding treatment that is too early or unnecessary.

Picking up on the 'low-malignancy' reference, I risk a question about prognostic indicators, specifically the contrast between my 'high-risk' genetics (del17p / TP53, for those who know what that means), and my 'low-risk' ISS staging ('stage 1' due to low levels of ß2-M). He rolls his eyes as doctors normally do when faced with evidence of patients who have been mugging up. He taps away and confirms I'm right about the genetics (ha!) and that this is indeed bad. But he says his reference to low-malignancy was about mm generally - for example in comparison to plasma cell leukaemia. He also says that my response to transplant has been very good. Average (median) time to progression ("PFS" - progression free survival) is 29 months and average time to treatment is 3 years. Although I've been relapsing for ages, I am now nearly 4 years treatment free, and I'm beginning to wonder how much longer I will eke this out. It may be longer than I think.

It is weird living with this complex, mysterious, menacing thing. But while it doesn't actually bite it is a mental, not a physical battle. And it does at least spur me to live my life.

I stop at phlebotomy on the way out, to have some blood taken. As I leave I wish the nurse a happy new year.
"2017, they say it may be hard year", she replies.
"But hopefully not for me", says I.
I head home and research flights to Japan.

* I reckon doctors reading patient blogs would be like actors reading reviews: probably inadvisable. But if DrC happened to read DialM, I hope he would recognise that, over the last few years, I've appreciated our exchanges, and his efforts to answer my questions. I quite enjoy the metaphors. (Maybe I could gather all these parables up into a 'Book of Crapulous'). I certainly value his expertise in his subject, and his continuing to see me. He is the hospital's head of clinical trials for myeloma. And I am not even in treatment, let alone on a trial. But one day I will be, and I hope I'm still in his care when that day comes. If I seem facetious, it is a product of the ongoing weirdness of a life in myelomaville.

Wednesday 4 January 2017


Today is the greatest day I've ever known. Can't wait for tomorrow; I might not have that long
Today - Smashing Pumpkins

And a Happy New Year

By some reckonings, 2016 was a bad, bad year. Brexit. Trump. Syria. Arctic temperature anomaly. Zika. Truck massacres. Celebrity death toll (though I'm a little sceptical about whether more people actually died, or just that it somehow became a meme).

By another reckoning, 2016 was a miracle. Chemo free for me. And most importantly, as one of my myeloma buddies posted on fb on New Year's Day:
"Still here"
The year even finished with my light chains on a plateau.

Who knows what 2017 will bring - for the world or for me. It's hard to be optimistic, but pointless to be pessimistic. Realistic? Apathetic? Pragmatic? Indifferent? Whatever. I'll take my chances.

The world, for all its many many faults, is still a beautiful and inspiring place.

Dawn, this morning. The view from my bedroom. #lovelondon