Friday, 9 December 2016


My body's made of crushed little stars and I'm not doing anything
My body's made of crushed little stars - Mitski

Check up ... KFLC = 381 ...

I'll keep this brief, jumbled and confusing - in honour of today's appointment.

When I arrive, at 11:15, DrC is clearly in a rush. The first thing he asks me is about changing our appointment times.
"This clinic is crashing! I have too many patients! Can you come early morning?"
"Can you come earlier? I start at 8:30!"
"It suits me much better to come early. If I drop the kids off at school and come straight on, I'm here by 9. I only came later today because that is the appointment I was given"
DrC rolls his eyes.
"Ignore that! Come early! OK, so we can continue!"

By this stage he has already opened my file and interjected:
"Your light chains are plateauing!"
Plateauing equals no news, which is very good news. Which definitely wasn't what I was expecting; partly because gloom always consumes me in the days before clinic; partly because this week coincides with my first virus of the season - a minor grey-out - which always makes me feel pathetic; and partly because my rib pain is noticeably worse, these last few weeks.

As anticipated, my MRI report is not yet complete. DrC flicks it open. Glancing at the screen it looks to me as though the spine report is in, but the whole body one - which would include my ribs - is not. He says we need to discuss some possible damage, but he'd like to wait until the whole report is there before doing so. He clicks it shut again. Anyone would think he is in a hurry. But I've already seen a little of it, and I'm not going to be fobbed off too quickly:
"I see the report mentions damage to T1-T3. That's certainly not something we've ever discussed before".
T1-T3 would correspond to the vertebrae behind the top of my ribs. Until now I've always understood my problems start from T7 downwards. DrC offers one of his peculiar metaphors:
"If your tyre has a hole, it may go down. That is progress for the car, but not for the hole"
By which - I think - he means that my vertebrae may still be deteriorating from old lesions. That could explain me having new pain symptoms, while the myeloma itself is not going anywhere.

I guess that's good news of a sort. Though I'd prefer my skeleton to stop crumbling, I'm happy enough to not be booking in for chemo. I'll get a better understanding when we can see the report for my ribs, or indeed stop long enough to have a proper conversation. There are obvious questions. The most prominent being: Can we do anything to stop my bones breaking? and: Are we sure my myeloma is plateauing, and not just secreting less light chains?

These answers will have to wait until January. I go to the reception to get my next appointment.
"The only time I have available is 10:45" she tells me.

Wednesday, 7 December 2016


Nothing else matters; I don't care what I miss. Company's okay; solitude is bliss. There's a party in my head and no one is invited. And you will never come close to how I feel
Solitude is bliss - Tame Impala

Fate clearly couldn't resist my claim that "one can’t really have too many MRIs"

I am booked in for a "whole spine" followed by a "whole body". These sound like spa treatments, but sadly are not. They are MRI scans.

The drainpipe, Goatchurch
For the spine one, I have to have my neck restricted with a clamp across my throat. It takes a few goes to get my back flat enough to actually fit in the clamp so that it can lock in to place. It's not a lot of fun lying on the gurney with one's head clamped in place. I'm not prone to panic or to claustrophobia, which is a good thing because the inside of an MRI scanner is pretty close. It always reminds me of the "drainpipe" one has to wriggle through at the bottom of Goatchurch Cavern in the Mendips (I can't quite believe I used to think that was fun!).

The MRI is noisy, so inside my head clamp, I'm wearing headphones, through which I can also hear the technician. Because there can't be any metal bits, the headphones are pneumatic - consisting of hollow rubbery hoses rather than wires - like one used to get on aeroplanes, long ago. The same is true of the panic button they place in my right hand - a squeezable rubber ball attached to a rubber hose. They offer me music, but previous experience tells me that's a bad choice. For a start the machine is so noisy one can hardly hear the song well enough to enjoy it. But worse than that, there's the risk I find myself being subjected to James Blunt, or something. Would it be OK to press the panic button because I wanted them to change the tune? I've never squeezed the panic button before, but I do so today almost immediately, before we're really started, when I realise that the cold I have come down with, combined with the head clamp, means I am in danger of drowning in snot. To be honest, blowing my nose doesn't help much (Rib pain means I'm not so good at vigorous nose blowing anyway - or sneezing, or coughing, or laughing). In the end I resign myself to mouth breathing. My throat was pretty sore before we start; by the time we finish it is raw.

Whole body MRI apparatus (with person inside)
The whole body scan requires bits of kit all over me, meaning that I am now effectively tied to the gurney at chest, wrists, thighs and ankles with all sorts of pads and bits of stuff on and around me. I've also got another bit added to the top of my head clamp so my head is basically encased. This scan is going to take around 45 minutes. As the gurney slides into the scanner, the panic button hose catches on something and I feel it "pop" out of the button. I better not panic then, because I can't move, and no-one can hear me.

This MRI is particularly noisy. It has repetitive cycles of beeping, backed up with low jolting bass that is so powerful it physically shakes my body. It reminds me of the techno room at Ministry of Sound (c.1996). As one entered the room, emerging from an almost pitch dark corridor, one was met by minimal white and strobe lighting, and pulsing techno that went beyond any sense of melody to just an all encompassing vibrating, thumping sound. This MRI seems a bit like that. But maybe it's just because I am wrapped in this peculiar head gear, and drowning in snot. 45 mins passes. But I'm glad when it's all over. Relaxing it is not. With myeloma, even lying still can be hard work.

Did I mention that I also have to have some marker dye injected, so I have a canula in my right forearm? Or that I periodically have to hold my breath for various intervals while the machine scans my ribs?

I have at least learnt from experience to arrive wearing trousers with no metal - no zip, no metal fly buttons, no rivets - which means I can go through the procedure clothed, rather than in one of those bum-hanging-out-the-back gowns hospitals have to offer. Small mercies.

I'm back in clinic on Friday. I suspect the full MRI report won't be available. But given the amount of problems I have been having with my ribs these last few weeks, I'm not overly optimistic about how this clinic appointment is going to go. I'll let you know!