Friday, 29 July 2016

Killing time

You're a water sign, I'm an air sign. Pumped up with Valium, could you get me some?
Sleeping pills - Suede

A nothing-to-report report

Half way through today's consultation, DrC says that he thinks this appointment is a little pointless. Far be it from me to say so myself. But we did know, when we booked it, that we would be meeting without any test results at all to discuss. It could only ever be a chat. And we get enough chats already. But don't let that reality stop the NHS clogging up its own diary, or dragging me back from Sunny Sussex. And I'm not complaining: they only treat me like this because they care.

Still, it sort of bridges the otherwise gaping chasm between appointments that would be the result of me going on holiday next week. I don't think they'd choose to sign me off for months at a time, right now. But I don't ask permission. As I promise DrC this morning:
"Look, if it gets to the point where I can't walk, I'll get someone to bring me in here straight away whether I have an appointment or not."
He looks askance, but signs me off for another 5 weeks. What else can he do.

"So is it even worth me going to get my bloods taken today?" I ask.
Capitalizing on his momentary hesitation, I quickly answer for him
"No? OK,"
But he's not falling for that, and wrestles back control of the conversation. I am to get my bloods taken today. And again in 4 weeks time. At least we will have lots to talk about when we next meet.

I had my spine MRIed yesterday*. It was quite soporific, apart from all the noise.
I wouldn't mind the noise if it was a little more predictable. But it seems to follow no pattern. And I much prefer patterns. Still, I was in there about an hour and managed to defocus my mind quite considerably. Not unpleasant.

The justification of the MRI was that the numbness in my leg may be due to a nerve in my back, This is most likely around the L2 and L3 region **, which previous imaging has shown are fractured.
The images have not yet been reviewed, and DrC declines, quite reasonably, to look at them and
"just make a serious face"
as he explains it to me. We need a radiographer's report. Yet more to talk about next time. Can't wait.

His view is that if there is an identifiable problem here it is probably the result of previous damage, rather than newly active myeloma (that was my assumption too). He also tells me that if there's a nerve pinch due to a compressed vertebra, then he could potentially refer me for more vertebroplasty. I'm in favour of that: it made a massive difference last time. The numbness in my leg is definitely getting worse, not better. It is a stinging sensation now, and quite annoying if I stand for too long.

So for now we can add 'dodgy leg' to the list of 'things which don't count as progression from the point of view of starting treatment', along with 'occasionally achy ribs' and, of course, my light chains. I wonder how long this list can get.

Sighisoara, neither Italy nor Switzerland
DrC asks where I am going on holiday. When I say I am going to Romania, he looks a little surprised, and asks why. I don't think my 'places I haven't been' explanation convinces him much.
"I mean, have you been to Tuscany?" he asks
"Tuscany is very nice", he adds, encouragingly.
"Not just Florence", he clarifies.
"Yes. Like Siena and little places like San Gimignano"
"Well, have you been to Switzerland?" he asks
"The Alps?", he adds, hopefully.
At this point he has the good sense to give up on this line of questioning.

* I'm more than happy to have had another MRI, because if we are making inaccurate assumptions about my progression, the best way to find out is a scan. And unlike CT or PET scans, MRI is harmless. For comparison: a chest x-ray is equivalent to about 10 days of background radiation exposure; a CT scan of the spine is equivalent to about 2 years; and a PET-CT to about 8 years. You really don't want to have too many CT or PET scans. Whereas aside from the cost, and the time, there are no known negative consequences of MRI. From the myeloma patient's perspective, the more MRI scans you get during the process of relapse, the better.

** The human spine is divided into 5 regions. The top 3 regions contain 24 vertebrae: Cervical spine (your neck) 7 vertebrae C1 - C7; Thoracic spine (behind your ribs) 12 vertebrae T1-T12; Lumbar spine (at the bottom) 5 vertebrae L1-L5. The final 2 regions of the spine - sacrum and coccyx - are all fused together. I know my spine is damaged from T7 to L4 - which is basically half the vertebrae. When I get the new MRI results. I'll endeavour to get a complete breakdown (for want of a better word!)

Friday, 8 July 2016


Slow down. Slow down. You're taking me over
The Drowners - Suede

Check up: ... KFLCs 264 ... Hb 13.0 ... Neutros 1.6 ...

My slowlapse continues. If anything the increase in my light chains is marginally decelerating of late. I don't think I'll be lucky enough to see it actually plateau, but who knows. And apart from numbness in one leg (another MRI beckons, I would imagine), I have no symptoms to report. All in all, pretty unremarkable.

I get chatting to a fella in the waiting room, who looks amazingly well for only 3 weeks out of his SCT. I recognise the lilt of his accent. He is Zimbabwean and so we drift into conversation. In no time I have his number and an invite to stay in his place in the Highlands. Which is a tempting proposition indeed.

Zimbabwean people really are the world's friendliest, even though their country is a basket case. I wish I could say the same for my own. The last few weeks feels like we are drifting in the direction of unfriendly-basket case. Still, it is nice to have things to worry about other than my 'eloma! I had the pleasure of meeting up with a myeloma-buddy to go marching on Whitehall last week. We had something to talk about, other than ourselves, which is a blessing of sorts.