Wednesday 15 July 2015


In the face of the Earth. In the manner of words. All reasons to breathe, all reasons to see. They are gone away again
Manner of Words - East India Youth

We're in the realm of death-literature here, which may not be your thing. As ever, on DialM, I know my audience is varied. No need to read on, unless you wish to...

Two things that have caught my attention in recent weeks:

Tom Lubbock got a brain tumour and died. His wife Marion Coutts wrote a book, The Iceberg, about her experience. She has also published a book of his diary, Until Further Notice I Am Alive, of which here is an extract. He was a writer, and the tumour progressively disrupted his speech. But I found his writing very insightful just for its observations on the experience of disease. Her interview on the radio was very interesting too - though I haven't read the books.

Paul Wolfson got early onset dementia. With his partner Lore, he recorded conversations of his experience and perspective. A programme based on these recordings was recently broadcast on Radio 4. It certainly made me think! Paul took his own life - a response to his own position, but not something I have empathy or comprehension of. My own experience is precisely the opposite: to fight for life. But in Lore's story, I found a lot of perception on the impact of disease on the other half, too often overlooked.

Wednesday 8 July 2015


This dog got bit on a leg. He got a really big chip on a leg. Don't want to get out of bed. Unless he feels like it's justified
Mr Noah - Panda Bear

Checkup... KFLC = 96 ... κ/λ = 15.2 ...

My most recent check up was simultaneous with the massacre in Tunisia. This fact makes me feel a little uncomfortable dwelling on myself. And I know others, too, much closer to home, are dealing with challenges no less daunting than mine. I've hesitated to write this post. But I want DialM to be a faithful transcript of my myeloma, and regardless of what else is happening, my hospital appointments don't stop. So, take or leave what follows. I can't promise you'll learn much! And sorry if it is a little complicated.

On this Friday morning, for the first time in a long time, the consultant doesn't just tell me that my blood test results are all good. For the last few months, even as my kappa light chains (KFLC) have crept up, he's considered it no real cause for alarm, because the ratio (κ/λ) has been static. At low levels, this is significant because there are reasons other than myeloma which could result in raised light chains (particularly, kidney function). But my myeloma only produces one type of light chain (kappas, κ), whereas any other cause would affect both types (kappas and lambdas, κ and λ). While the ratio is static (even though it is abnormal) that is indicative that not much is happening myelomawise. This time, though, the ratio (for which normal would be 0.26 < κ/λ < 1.65) has jumped from 6.5 to 15.2. I'm not sure what this means - and nor is the consultant - because it is largely due to my lambda levels dropping. Active myeloma would certainly cause that by crowding lambda producing cells out, but I'd expect to see things like anaemia and neutropenia developing simultaneously, which hasn't happened (yet). And anyway my kappa levels haven't spiked.

In fact, with a few days hindsight, I think it is highly likely this is just an erratic result, but I don't reach that conclusion until after the consultant has told me
"on its own, this isn't sufficient to be considered disease progression"
Which triggers a conversation about what would be considered progression. The answer, in a nutshell, will be when the difference between my kappa and lambda counts has increased by +100 from the minimum I achieved after SCT, and that will be when my KFLC = c.160. Some way to go. However, for the first time the consultant acknowledges that, with occasional exceptions, my KFLC score has been increasing slowly for some months. I face the reality, again, that it is a matter of when, not if, my myeloma progresses. How long might that be? He doesn't think it will come in a jump. I can't help making mental estimates of how fast the KFLC score is moving. My most negative estimate is about +10 each two months, of late. At that rate, I have a year. Or, taking a more optimistic view, it has increased +40 in the two and a bit years since my SCT. At that rate, I have 3 years.

So... hold the front page... my myeloma will probably be back somewhere between 1 and 3 years from now. But then, ever since we knew my SCT had been successful, we knew that, really. Can't say I've enjoyed being reminded, though.

It's a burden, being responsible for making good on remission. How can I ever live up to it? How much must I make, of every moment? And if I have a mundane day, an unproductive day, a miserable day, what kind of betrayal is that? These thoughts can be quite debilitating. Knowing life is finite, and hard earned, and yet still being miserable. That's a toxic combination. For a while, last year, I was really very down.

Rare opportunity for a maths joke...
So it is good that the other thing that is creeping up, is the frequency with which people tell me how well I look. In part, this is a consequence, I think, of adopting a somewhat cavalier attitude, to life, to responsibilities, to myeloma. I've excused myself, for now, from the responsibility to take it all seriously. I'm not trying too hard to make the most of it. I live under the shadow of a ratio. I'm permitting myself to be a little more irrational, while I can.