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.


Lorna A. said...

Ignorance is bliss? ;)

Alex Bicknell said...

Probably. I think I'll skip the tests for now, and push my appointment back as far as I dare. What's the worst that can happen?

Anonymous said...

I have MM too. I am American but live in Paris. Frankly, I appreciate the anger, irony and sarcasm in your writing.
It makes a change from the "positive attitude" that is the cultural norm of my compatriots. Although my empathy extends to each and every person who suffers from this disease. I too am angry, but I can't take it out on the doctors and nurses of the Parisian hospital where I am treated, because they're great. But oh how the anger is present and palpable..But where to direct it?
Hang in there, if you'll excuse the platitude.

Alex Bicknell said...

Hey Anonymous American in Paris.
I am ironic and sarcastic by nature. The anger came more recently. Our cultural problem in Britain is not excess positivity, but the tendency to keep quiet.

"stiff upper lip" + "reserve" = "suffering in silence"

So I'm doing my best to puncture that. I'll write this up large, as long as I'm able to. Having got it out on DialM, I find I can be pretty chirpy the rest of the time. You hang in there too - we're in this shit together. And thanks for stopping by - its comments like yours that make me certain that writing about it, talking about it, is an absolute necessity.

Unknown said...

Didn't mean to be anonymous
Must fix that
My name is Mike O'Neil

Alex Bicknell said...

Anonymity is fine by me... but names are nice too. Good to meet you, Mike.

Unknown said...

The pleasure is mutual and I will be following your blog, (commenting when so inspired) and wishing you and your family the best.