Wednesday 16 March 2016


I wish I could be like a bird in the sky. How sweet it would be if I found I could fly. I’d soar to the sun and look down at the sea, and I’d sing 'cos I’d know how it feels to be free
I wish I knew how it would feel to be free - Nina Simone (composed by Billy Taylor and Dick Dallas)

Check up... KFLC 196 ... κ/λ = 30.6 ... Hb = 13.3 ... Neutros = 1.52 ...

I have spent the last five weeks trying not to focus on my next clinic appointment. The trend in my light chains seems all too predictable, and the aching in my ribs more persistent.

This week's appointment was never going to be straightforward. Dr Crapulous had booked it on an off-week, and my blood tests had been posted to a previous appointment. The phlebotomy department ace their part of the test. But sure enough, when I arrive in the clinic, my name appears on no appointment list. My clinical trial coordinator comes to speak with me. I explain that DrC was insistent, last time, that today would be OK.
"'I'm always here', he said," says I.
She gives me one of those NHS-sympathetic looks.
"He's on annual leave", she tells me.

So they put me on the end of someone else's appointments list. A doctor I've never seen before. And then I wait. After two hours, my myeloma clinical nurse specialist walks past me.
"You've been waiting a very long time", he says.
I grimace.
"Yes, and I have to go in ten minutes to collect my son from nursery", I reply. (Gyles' violin lesson, the other regular fixture in my Friday morning calendar, has long ago been missed.)
"Could you at least print out my blood results?"

So that's what we do, and I don't see the doctor at all.

The print out comes as a bit of a surprise. My neutrophils, while still low, are up a little - certainly no greater cause for concern. My haemoglobin is normal. And much to my surprise, my light chain levels are completely unmoved from five weeks previous. Though the κ/λ has deteriorated, because the λ figure has dropped, which could be ominous, or could be meaningless.

I'd expected my light chains to be up quite a bit, and for DrC (I do so hope he is having a nice holiday) to start further "investigations". I've been steeling myself to resist being sent for a BoMB, and to demand an MRI and/or CAT of my ribs. Suddenly I'm unsure if I should do either, and have no doctor to guide me. And with no doctor to say if I should come back in 4 weeks or 8 (well, 5 or 7 actually, since I clearly need to get back into the fortnightly clinic pattern), I  leave the clinic without another appointment set up, which is frankly wierd (and completely unprecedented - in 4 years I have never not had a follow up appointment booked.)

The Sword of Damocles* swings filipendulously above my head.

* In the original Greek telling, the Sword of Damocles represents the ever present peril facing those in positiongs of power. It is something of a subtle shift that it has come to symbolize, in a modern setting, the sense of foreboding caused by any precarious situation.

Thursday 3 March 2016


Seeking fame and fortune, we walk the streets of London, looking for the crossroads everywhere
Fame and Fortune - The Libertines

Inbloodyvisible *

I've complained before about the lack of awareness of blood cancer; all the euphemisms; the complicated names; the fragmentation. So I should be - indeed I am - delighted that Leukaemia & Lymphoma Research has rebranded as Bloodwise. Not least because it is now inclusive of myeloma in a way it wasn't before.

A bit late now!
However, I'm less impressed that I only discovered this today (while googling for something I knew would be on the Leukaemia & Lymphoma Research website). Apparently, the rebrand happened in September, as part of "blood cancer awareness month". I wasn't even aware of blood cancer awareness month. And I've got bloody blood cancer. So the likelihood that anyone else has heard of any of this is approximately the square root of bloody bugger all.

Oh the irony. If only it wasn't a matter of life and death. Gotta laugh, or you'd cry.

Still, you know now. Spread the word.

* Expletive tmesis. Isn't English glorious?