12/12/23 COVID

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 tedious voicemail system which eventually took me back to the beginning - you can't report these results online (or, it seemed, anywhere else in the system).

Tried 119. Same result.

Tried GP surgery. Usual voicemail menu followed by "We are experiencing an exceptionally high volume of calls..."

Despair.

BUT - phone answered by a receptionist almost straight away. I reported the result, she asked a few questions, went off to speak with colleagues. Within five minutes rang back, referring me to Infectious Diseases Unit at Basildon, where they will make decisions about anti-virals (my guess is that my symptoms so far are too mild for that, but have to go through the routine).

Now awaiting a call from Basildon.

Usual government/NHS mix of impressive efficiency and complete hopelessness.

UPDATE: Basildon called, I'm ok for antivirals and 5 days of Paxlovid will arrive by courier this evening. 10/10 to the NHS for that!

10/12/23 Various updates

 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 Stanmore but no action plan from anywhere yet. May have to wait until next Stanmore appointment January 18th for that.

Back / mobility has been bad for the last two days, which I'm blaming on stretching up to put some Christmas decoration up high. Was all lumbar region yesterday, bouncing up and down everywhere earlier today. I've put myself back on the Co-Codamol for a while, which does seem to be helping. And definitely feeling a bit more human now, even managed to shift a pile of paperwork that's been accumulating for months. And now to the kitchen...

20/11/23 100

CPAP scores are very variable these days - not quite sure why, except that I don't often hit seven hours a night - but last night's was a good one:

2 "events" an hour is good, as I started with 15 and the target is 4. That means it's working.

Still awaiting results of the MRI done on the 7th. The blood tests came back normal, including PSA, but that is such an unreliable test that it means little without more evidence, which the MRI should provide. And there are of course other diagnostic procedures for prostate problems which I hope to avoid....

The main thing now is persistent low back pain / stiffness / soreness across the low back. No more problems getting out of bed - that was rather scary. Have to drive to retail park etc. a bit later (11:40) but may try another Oramorph / CoCodamol cocktail after that. 
Urination still not completely normal - combination of low flow and occasional urgency.

05/11/23 Better again...

Another update: mobility much improved - 10 mins to get out of bed yesterday (with help from frame); this morning, straight out almost as normal, no need for frame. Just as well, because I'd left it on the other side of the room. Also, first-thing urination back to normal, or nearly.

Oramorph and 8 Co-Codamol a day working wonders, but Co-Codamol having its usual effect on lower intestines. Praise be to Laxido!!

04/11/23 Better..?

20 minutes from waking up to standing up this morning - partly the result of practice, partly because of the frame. Would probably have been at least 30 minutes without that. Staying with maximum 8 C-Codamol a day and Oramorph at need. One 5ml dose this morning.

Good news is successful first-time urination this morning.

Sue's in for her cataract, driven in by a very helpful fellow resident here. No news as yet.

03/11/23 Quite a day...

I'm not going to try to write this all out again, so here's a compilation of today's posts on the Facebook Myeloma group. It took 45 minutes this morning from waking up to standing up, and only did that with help from the House Manager here who brought a walking frame up from storage downstairs. That made things much easier.

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Going to A&E in hope of x-ray as worse this morning. Ambulance wait may be 4 hours...

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Update: Have had a twelfth-degree interrogation over the phone by a "clinician". It would have helped if she knew anything about myeloma.

Eventually agreed transport to hospital but no promises about what happens then.

Six hours....

One of the questions asked was whether I was feeling agitated. You can imagine...

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Time for yet another update already. But first, sincere thanks to all those who have responded to and commented on all this. I really appreciate it.

Two ambulance men arrived, took my BP and etc.. Not surprisingly a good deal higher than usual!

Long conversation, upshot is they see no point in taking me in to lie on a trolley for hours (A&E already overwhelmed today) and they "very rarely" do x-rays for back problems anyway these days, so better to hang on for the MRI on Tuesday.

They did organise a bottle of Oramorph, which Sue is about to go and collect for me, bless her.

And to top it all, the House Manager here (who was very helpful getting me on my feet this morning) set off the fire alarm while doing some ironing. That meant the lifts automatically stopping working. Just as our weekly Tesco food delivery arrived....

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I've got the Oramorph and have just treated myself to a rather large 5ml.

The lifts are working again but the hot water and heating are both off. The fire alarm turns them off but re-ignition doesn't work as it should. Engineers are expected...

And now for an aspect of all this I haven't mentioned yet. Usually the first thing I do when I wake up is get out of bed, go to the bathroom (just a couple of non-metric yards away) and urinate. All normal. But for the last two mornings when I've eventually got to my feet - half an hour yesterday, three-quarters today) I've produced absolutely nothing. Not a drop. No sensation of wanting to go but can't, just empty-bladder nothing.

Half an hour later, all back to normal.

There are several possible explanations, one or two of them not very pleasant and with potential long-term implications. I think we can rule out prostate as no other symptoms apart from occasional urgency, and pelvic CT last May reported "Visualized parts of urinary bladder , prostate and rectum appear normal". There may be pressure on the relevant nerve roots right down at the base of spine, meaning that something has changed in that area where we know I have several small lytic lesions.

Talked about this with today's ambulance men and basically they said not our problem, keep a diary and take it to your GP. So I called the surgery and got a phone call back from a doctor inside an hour. She wants "urgent" diagnostic blood tests. I have to pick up the form Monday morning and then try to get "urgent" through the heads of the people at the blood test place "Chelmsford Health Hub". Wish me luck!

Myeloma, the gift that keeps on giving...

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Definitely an "interesting" day...

02/11/23 (2) NHS update

Can't remember when I last did more than one post in one day!

After giving up two or three earlier attempts, got through to the GP surgery at 3:30. Told the receptionist the same story. "Can you come in this afternoon? 4:30?" Sue was otherwise occupied, so followed in her car as soon as she was free. I've got one of those removable handle things that fit into the car's lock mechanism on the door pillar, and not for the first time it saved the day. Don't think I would have got into the car, or out of it, without that "pink thing" as we call it, the original red plastic around the handle having faded long ago.

GP prescribed painkillers and precautionary laxatives, and while I was there Broomfield phoned to say they had organised a "fast track" MRI for Tuesday morning (7th) and a Multi-Disciplinary Team meeting (presumably including Orthopaedics) to chew over the results and decide on a plan. So now we wait, and cross fingers that getting out of bed in the morning won't be as difficult as it was today.

All credit to the NHS for speed. As so often, the clinical side works far better than the admin side.