06/01/21 B12, RUDY, Propropanol

We had a walk and coffees in Oaklands Park this morning - also wearing in a new pair of shoes for muddy walks. Then off to the GP surgery in the afternoon for my regular B12 injection and a blood sample for the RUDY research project - that was a lot simpler than figuring out the instructions for the biosecure packaging, which took a lot longer than I had anticipated especially as the nurse said "I do lots of these..." Perhaps not with the same packaging. Mine is now safely in the post to Oxford.

Also picked up a copy of the neurologist letter, which turned out to be from Dr.Zo (private) rather than Dr.De (NHS) as the secretary had told me. And collected the prescription for Propranol (80mg slow release to start with) but waiting for haematologist approval before starting them. I've emailed him just in case he hasn't got the letter through the normal processes.

Tomorrow, eye test at Specsavers...

06/01/21 Springfield pharmacy and rings

I collected the next four weeks' bag of meds from Springfield - they threw in a pack of Omeprazole (which they know I get from the GP) and one of Metoclopramide (anti-nausea) as well. Maybe they're over-stocked and trying to get rid of it... No walk on the way back because the weather was too foul. I went home and turned 600ml of double cream into two tubs of spreadable butter instead.

No phone call from Dr.Ku. Perhaps he was at the Parkside Medical Centre furiously getting everything ready for the mass vaccinations next week. We'll see if anything happens later today.

A small thing: I usually wear two rings, my wedding ring in the usual place and a small signet ring that belonged to Sue's father in the corresponding place on my right hand. I took them off round about a year ago as I have to use a lot of hand cream (because of the dex skin-thinning, as well as the cold weather) and it annoys me by getting trapped under the rings. Yesterday I decided I'd had enough of being without them and put them back, along with another ring that celebrated my 65th birthday. And there's another one coming, but more about that when it arrives...

It's been a while since I posted an image. There hasn't been enough of a reason, or I haven't found one good enough. So this will have to do.

What's the reason for going back to the rings? Just enough time gone by? Vanity? Something else? "Taking back control"? I really don't know...

05/01/21 Pharmacists

Mid-day, and waiting for the call from my GP which was supposed to be "9ish"... If the receptionist who made the appointment was right, all he wants to talk about is whether I can get Metoclopramide (anti-nausea) and Loperamide (anti-diarrohea) on prescription. I don't need either (and have several unopened packs) but the Springfield pharmacy insist on handing them out every third or fourth month. The only way I can stop that is by convincing the Springfield pharmacists that I can get them through my GP - as I do with another two of the supporting drugs (Omeprazole (protein pump inhibitor) and Xarelto (blood thinner)).

Horrible day outside - thermometers agree on 3C but it's wet and feels bitterly cold. I may stop off at Admirals Park for a short sharp walk on my way back from Springfield this afternoon, depending on the rain.

I gather that batches of the Oxford vaccine will get to "local hubs" at the start of next week. So far it's only in hospitals (and possibly some care homes). So that gives us a starting point for vaccinations at our local centre, I hope. The GP website still hasn't been updated since 15th December, which I think is not very good. If they want to stop people clogging the 'phone lines to ask about vaccination (and they say they do), then the sensible course is to provide the information by a different route.

04/01/21 Dentist again, & lockdown #3

All went OK with taking the bloods at Springfield this morning, and I got them to add vitamins D and B12 to the usual list. Then to the dentists, where I let myself get thoroughly annoyed by having to wait outside in the car for the best part of forty minutes before being called in. The news is that the patch of exposed bone - which is no longer causing me any problem at all - is looking pretty much unchanged and still healthy. I had been hoping that it had miraculously healed itself, but no such luck. The nearby tooth which had flaked off another bit will need a crown once the jawbone is sorted out. She ground the sharp bit down a little, which is an improvement.

Had the monthly 'phone consultation with Dr.Ch this evening, and we spent most of it talking about the vaccination rollout - which means no big myeloma concerns at the moment. He's seen most of the results from this morning's bloods (but not the PPs or FLCs of course) and has authorised the next package of meds, which I'll pick up from Springfield tomorrow. I asked him one question - as all my white cell numbers are normal or very close, does this mean that my immune system is only mildly (or even minimally) compromised or in a worse state than that? Short answer: as for bacterial infections, probably still pretty good; as for viral infections, really no way to tell. Which is about as helpful as I expected...

Well, after Boris's 8pm announcements, here we go again. Full lockdown, tier 5, whatever you call it. It isn't going to affect us anything like as badly as it will affect many - probably most - others. The unfairness, and this has been true all the way from last March to here, is that Sue (being merely clinically vulnerable) has to do more of the extra shopping etc. than I get to do because I'm clinically extremely vulnerable. At least for much of last year's first lockdown we could get out into the woods and fields but that's less tempting now because the fields have turned to mud and the temperatures are near-freezing. If we get the forecast bad winter there'll be snow and ice as well. I foresee a couple of cases of cabin fever coming up. I think we'll need all our reserves of patience, especially while we're waiting for vaccination. By mid-February for the first shot, Boris tells us. Maybe sooner, if yesterday's Matt Hancock letter is to be believed.

03/01/21 COVID v Myeloma, and no vaccination news

We did the short walk into Central Park - under Tier 4 the Cafe is take-away only and the queue was too long to wait for coffees so we just circumnavigated the lake and went back to the car park. Slight rain on the way back but not enough to worry about.

Myeloma? I barely think about it much of the time, apart from remembering to take the tablets and the constant monitoring of the state of my bowels. It's all about COVID-19, and with the new more transmissible strains, the case and death numbers at horrifying levels, some hospitals close to breaking point - well, that's what you think about most and what dictates what you can and can't do. And it's now getting closer - although no close friends or near neighbours have got it yet, there are now several slightly more remote people we know who have gone down with it. Fortunately none too seriously, so far. But the paranoia level is definitely turned up a notch or two.

As for vaccination, our GP's website hasn't been updated since December 15th when they announced plans to work with the rest of the local Primary Care Network at a medical centre on our side of Chelmsford which is apparently appropriate for social distancing etc.. No detail at all on delivery of either the Pfizer or the Oxford vaccines, no hint of appointment dates or anything of that kind. This morning I had an official COVID letter from Matt Hancock which clearly states that the extremely vulnerable (i.e. me!) will be vaccinated before the general population, which goes against the usual information that over-70s with underlying conditions will be in Group 4 after frontline health workers, care homes, over-80s, and over-75s - all whether vulnerable / extremely vulnerable or not. That's from memory, I may not have got it quite right. I just hope that just for once in this whole pandemic the government knows what it's doing and will get everything right.

To get back to the point, there seems now to be general agreement that myeloma patients should have COVID vaccination, on the basis that it can't do any harm and any level of protection is better than none. Still little if any specific information available on the efficacy of any of the vaccines for the variously immune-compromised. I shall certainly get my shots at the first opportunity.

02/01/21 Diary and RUDY

We did get that walk in - a local one across fields, round a nearby farm, and then back along the road where we did some litter picking. It's a pity nobody else has that much of a social conscience...

Again, nothing new on the myeloma front except that the SFL treatment worked again. I'm just in that stage of waiting for the next blood tests and results along with the next bag of pills. It's the unavoidable rhythm of this disease.

Next week is quite busy. I have to go to Springfield for the blood to be taken on Monday (must remember to ask them to add VitD and maybe B12), then I have the dentist in the afternoon to check up on the exposed bone and the chipped tooth, and at some point there will be a 'phone consultation with Dr.Ch. Then on Tuesday I have a  scheduled 'phone call from my GP and another trip to Springfield to pick up next month's meds (but not for Zometa at the moment, because of the jaw problem). On Wednesday I go to the GP surgery for my regular B12 shot and for a RUDY blood sample. More about that in a moment. Thursday has an eye test - because I have both early cataracts and early signs of AMD (fortunately not progressing, so far) I now get called in once a year. I expect that'll mean new glasses again.

Can't remember whether I've written about RUDY before - the Rare and Undiagnosed Diseases studY. I've signed up for a five-year myeloma research programme which involves regular blood and urine tests. For this first one at least I have to get the GP practice to take a blood sample which I then send off to RUDY in Oxford - they've provided some rather impressive biosecure packaging for the purpose and the practice gets £16 for taking the sample.

More here if anyone's interested: RUDY

01/01/21 New Year's Day

I can't let today go by without posting something to start another year, even though I have nothing to report. Too cold and miserable a day to go out so I spent the time working on our tax returns and watching a bit of TV. Finished the evening with Fybogel and Laxido, which will probably be the way every week or so for the rest of this year...

Sue and I are agreed that we really must get out somewhere tomorrow for air and exercise.