Ian's Myeloma Blog
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A source where Ian Crisp writes about a daily record of his time with Multiple Myeloma and diagnosis.
Ian's Myeloma Blog
3d ago
I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 25th. Of course there were the usual NHS complications over contradictory messages about the appointment and arrival times. Sadly you just have to accept that as par for the course these days. At least it was all digital and not reliant on what now passes for second class post. Fifth class in a third-world country, more like.
My blood sugar levels (HbA1c test) have drifted up gradually from high 30s (OK) to 41 and 42 (borderline "pre-diabetes") and now 45 ..read more
Ian's Myeloma Blog
3w ago
First session of 2024 yesterday as the temperature was not too bad yesterday morning and for once it wasn't raining. Played two doubles matches, lost the first one 13-0. I was very very rusty and had trouble staying in the lane at first. But it started coming back in the second game and we won 13-8 and I played some balls I was very happy with.
The four new pistes are now in use and we have fancy new scoreboards as well. Zoom right in to see them ..read more
Ian's Myeloma Blog
3w ago
Time for what is now becoming a monthly update, and the answer to the "What's New?" question is not a lot. Or anything much.
Still in remission.
Still waiting for a date for the cement process.
Mobility still not too good, keep aiming for a decent number of steps a day but they do get harder, range gets shorter and my speed over anything but perfectly flat ground gets slower. Often need to go and walk the corridors here to get the step count up - at least I can work up to a more respectable speed there, while running the old "Straight, square, balanced, even" mantra through my mind... Learned ..read more
Ian's Myeloma Blog
2M ago
Good news. Have had phone call with the surgeon at UCLH and he's agreed to do the job. I asked him about waiting times and he said "A bit busy at the moment with post-Christmas and strikes, but we don't usually have very long waiting lists". Whatever that means. Hoping to have it done before my next "follow-up" at RNOH Stamore on 4th July, which seems as if it might be a little pointless now ..read more
Ian's Myeloma Blog
4M ago
Two more unarguable negative tests, yesterday and this morning. So I'm declaring myself Covid (and mask) free. And tomorrow I can resume my statin and amitriptyline, had to have eight days off them because of interactions with the Paxlovid ..read more
Ian's Myeloma Blog
4M ago
Today's test showed a very faint second line. It's not over yet ..read more
Ian's Myeloma Blog
4M ago
On the evidence so far Paxlovid is something of a miracle drug. No side effects worth mentioning, and symptoms almost completely gone. Just an occasional chesty cough lingering on, and blood pressure still up by about 10 points both top and bottom (which still leaves me in ok territory). But I did another test this morning and still positive. Will try again on Saturday (2 days ..read more
Ian's Myeloma Blog
4M ago
COVID. My wife and I have both avoided it for four years, but it has struck at last - and at just about the most inconvenient time possible, but that's another story.
I now get my free tests from the pharmacy (because I'm immune-compromised with a blood cancer). I took a test, it was positive, I tried to report it...
You can no longer report free-from-the-pharmacy test results online. I have no idea why not, but there it is. My most recent NHS letters and the gov.uk website say report via 119 (or 111, depending on which letter you read), or to GP. I tried 111, and got routed through a long and ..read more
Ian's Myeloma Blog
4M ago
Nothing big has happened for a while, but...
Had some sort of infection for the last few days - cough, blocked-up nose, generally feeling lousy, energy levels minimal. Despite that scored 100 for both of the last two nights.
Still haven't seen the MRI report from the last scan - haematology are supposed to be sending it to me. I think I'll have to give them a nudge next week. But did talk about it with my haematologist, and short summary is no new lesions but a number of quite bad disc issues in lumbar spine - not something that has been commented on before. Scan has been sent to Stanmor ..read more