Wednesday, 11 February 2015


And to history, we will say "We were right. We were right. We were right"
c.16th± - These New Puritans

...Hb 13.7...

Just a quickie. Was back in hospital last week for many many blood tests. The upshot of which is my anaemia is receding fast. I'm certain it was a mere side effect of the virus I had before Christmas, as I told them last time. (Patients 1, Doctors 0)

Reluctantly, I tell the consultant about the pain I am getting in my left hip. It has been getting quite bad. Inevitably this leads to an appointment for an X-ray - I just can't tear myself away from the hospital, can I. If I know my own body then the X-ray (which I had on Monday) will show nothing. But always better safe than sorry, with mm.

So, I'm not expecting a call when they've reviewed the X-ray. And I'm hoping not to go to the hospital again until April. 2 whole months away! Imagine!

Tuesday, 10 February 2015


I searched out my companions, who were lost in crystal canyons. When the aimless blade of science slashed the pearly gates
Thrasher - Neil Young

A couple of interesting discussions about self-help/ support groups

This morning, I chance upon One to One on Radio 4, where Charlotte Smith is talking to Sarah O'Donoghue, about self help groups. Sarah's son Charlie died in an accident. Charlotte has a rare and potentially fatal incurable illness called Lymphangioleiomyomatosis (or LAM). Sarah's story really strikes me. She talks about the difference between "professionals" and people who have "been there". And about the space and strength that a support group can give. Upon going online to find you the link, I discover that this is the second of two programmes. In the first, Charlotte was talking with Gill Hollis, who set up a self help group for people with LAM. They are both well worth a listen - and chime with a few of the things I've talked about recently on DialM.

Charlotte Smith meets Gill Hollis
(One to One, Radio 4, 3/02/15)

Charlotte Smith meets Sarah O'Donoghue
(One to One, Radio 4, 10/02/15)

I'd like to say a big Thank You, at this stage, to Phil and Scotty, who set up the myeloma under50s group, which has been invaluable to me.

There's a bit of a "Why Don't You?" * element to all of this, of course. Support is a means to an end, not an end in itself. Time, now, to turn off the PC?

* For those not of my generation: "Why Don't You?" was a children's TV show in the 70s and 80s, with a theme song that asked "Why Don't You Just Switch Off Your Television Set and Go Out and Do Something Less Boring Instead?"

Tuesday, 3 February 2015

Live longer longer

I've been down the very road you're walking on. It doesn't have to be so dark and lonesome
It's only life - The Shins

This one's primarily for my friends in the club no-one wants to join!

Myeloma kicks like a donkey. Another myeloma-buddy, and fellow PADIMACer, Deborah Bone, died a few weeks ago, after getting a momentary "all clear" from her SCT, only to relapse very abruptly indeed. Horrific news, and my thoughts, first and foremost, are for her and for her family. But it is always hard not to take it personally, too, when one knows the same monster lurks in one's own plasma. Several other friends are in the process of relapse and retreatment; some of them having been diagnosed around the same time as me. So despite my own good current scores, it is hard to keep upbeat, on the dark, lonesome pathway of mm.

The consultants always talk about "quality of life". Which is fine, but what use is quality, if you don't have any quantity?

Today, while clearing out a few unpublished bits and bobs on DialM, I found a bookmarked link to something posted a couple of years ago on Gary Petersen's hugely positive "Myeloma Survival" blog: "The longer you live, the longer you live".

Gary took survival data from SEER and used it to calculate (death rates and) life expectancy at each year after diagnosis.

We all know the bad news up front. 23% died in the first year, in the data used, and average survival was <5yrs. Though it is quite old data now and I've seen more recent things saying yr1 mortality may be down to 10%.

But the good news is in the tail. Almost half (44%) of myeloma patients survived 5 years, and over a quarter (28%) survived 10. After 10 years, only 2.1% of people with myeloma were dying each year... the same as the proportion of the general population who die each year anyway. Though myeloma patients' relative mortality was more like 7% (2.1% as a proportion of the 28% who had made it that far).

Looking on this negatively, I could point out that the average 75 year old is less likely to die next year than that. But I choose to look positively.

If you have a 7% chance of dying each year, you will, on average (median), live another decade. So the headline is right - the longer you live, the longer you live. You have a 50:50 chance of surviving 5 years with mm. If you do that, you have a two thirds chance of making it to 10. (Having survived the treacherous first 2 years, this data says I already have well over 50% chance of making it from here to 10.) If you live 10 you have a 50:50 of surviving another 10. And presumably improving odds there-on. Until other factors come in to play, of course. The myeloma patient's objective being, ultimately, to die of something else. It's worth bearing in mind as well that not only does the data pre-date some recent treatments, but also that it doesn't factor for age. Given average age at diagnosis is c.70, (and 10% of diagnoses are in people aged 85+) one can assume that those surviving 10+ and 20+ years are disproportionately from the younger end.

This is no consolation at all, I recognise, to families of people who die. Nor is it much consolation to those for whom repeated treatments don't achieve good remission. Nor much consolation for any of us during periods of relapse - when we are at real, immediate, risk.

But it should massively cheer us up when we are in remission. Our life expectancy is actually increasing by the minute! Which is more than most people can claim. The survival curve for the population as a whole drops more steeply as time goes on, whereas (for a while) ours is at least curving the opposite way.