31/07/2025 Quickie and update

Just a quick post for the record, it's not been the best of days. Mobility and the limited movement have both been getting bad and getting worse, to the point that I could barely get out of a chair or move around at all. Chemo day yesterday, I had a moan about it and they summoned a haematology doc from upstairs to have a look and a think. Best he could come up with was a letter to GP to request a referral to physio. That obviously doesn't fill me with enthusiasm. As my unofficial medical adviser said ("Couldn't think of anything else, then.") Exactly!

Two incidents today - one when I nearly fell to the left when getting off the WC, just managed to save that. And later, also collapsed to the left on getting out of my recliner chair. Unfortunately landed on Sue's legs and didn't do her knee much good, but she reports no serious damage, thankfully.

UPDATE: Things improved a little after a shower and in the early hours of the morning, but still exceptionally bad. BUT.. woke up this morning, completely back to normal (although the normal of recent weeks isn't exactly good).

I have no clear idea of what's going on. I did have a couple of glasses of wine with last night's fish&chips (a social event we have here every last Wednesday) but that was if anything a little less than I usually drink at such things. Never had a comparable reaction to a couple of drinks before.

It occurs to me that I didn't get the usual dex dose during yesterday's chemo - probably overlooked because of the concentration on the muscle weakness problem. Instead I took the day's dex late at night, and of course another (Thursday) dose this morning. Right now the muscle weakness is pretty much gone, I can get out of a chair without having much to do beyond thinking about it. I suppose the test will come at the weekend, when I expect a crash to come as the dex clears out of my system. But right now, I have to feel a bit of a fraud...

24/07/2025 03:36

Evidence so far is that cutting my dex dose in half from 20mg to 10mg is having no effect at all on the sleeplessness. If that continues, might as well go back to 20...

There seems to be increasing evidence that high dex doses for myeloma (40mg daily, that's usually 80mg for two days weekly and upwards) has little if any measurable benefit over lower doses, so it seems to fit the pattern, not that I've ever been on more than 20x2=40 weekly.

Anyway, going to retire now at 03:48 and try to get a few hours before I have to be up in the morning because it's cleaner day. Would be better to have a later time for that but you have to take what you can get, and at least this leaves the rest of the day clear. And in the morning we also have a mystery McCarthy Stone meeting promising a possible reduction in the service charge. There's bound to be a twist - "beware Greeks bearing gifts"!

21/07/2025 Better

 Had dinner, sat in my recliner in front of Sue's choice of TV (rarely the same as mine!), fell asleep. Nothing unusual there.

Woke up, dragged myself through into my room, for some reason started thinking about whether to give the CPAP machine a go tonight. 

Then, for no obvious reason, I suddenly felt better. As if a veil had been lifted, a crushing weight removed. Just a hell of a lot better.

I hope it lasts...

18/07/2025 Aftermath...

After the ambulance paramedics left yesterday evening I had the usual sleepless dex night - maybe two hours evening and night all told - and at some point overnight I thought what happens if things don't look any better in the morning and we need to go to A&E for a scan and maybe more? Will need a backup plan or two for the Friday Tesco delivery.

In the morning my eye looked if anything a bit worse, and still no memory at all of the fall or the few minutes afterwards. So the choice was to go to A&E Broomfield (NHS, no cost but probable long waiting time)or Springfield (private hospital, £250 or so for a CT plus any amount more for one thing and another, but hopefully much quicker). In the end we decided on paying £100 for a private GP (same day) and his advice. He was particularly interested in finding the reason for my dropping out of consciousness just before the fall and for maybe five minutes afterwards. I now know that during that time people were checking my airway for obstructions and my mouth for loose teeth, and others were busy trying to keep up with the nosebleed and saving the carpet (not very successfully, unfortunately). He suggested a brain bleed or clot, a mini-stroke (TIA), or even some unlikely result of either my myeloma or my myeloma treatment. He rote us a couple of letters - one for Springfield, one for Broomfield, and sent us on our way to Broomfield.  The A&E waiting room was full,with the triage queue stretching out of the doors (and not moving). So we decided to try Springfield instead. No luck there, because the right doctors to deal with the paperwork and the protocols wouldn't be in for hours... back to Broomfield, by which time the queue was shorter and moving, if slowly. Eventually got to the front, got triaged, sent off to another room to wait. And wait...

Had an ECG. Had blood taken for more tests, including a clotting screen. Waited some more. Finally seen by an A&E doctor who made me go through the whole tory again, examined me, and decided to send me off for a head, brain, and facial CT. Then, of course, more waiting for the results of everything, which were: No brain issues, but small nasal fracture and bigger sub-orbital one. Potassium a bit on the low side, blood numbers otherwise OK. Given some precautionary antibiotics and sent home with firm instructions not to blow nose for 48 hours. Easier said than done, I think, but will do my best. And still no real answer as to why I blanked out and fell. And by that time (a bit over 4 hours in A&E, not too bad by current standards) the eye was looking worse:

Just have to wait things out for a couple of weeks and hope that everything gets gradually better and not any worse. Lots of instructions about what to do if I start getting double vision etc....

  

17/07/2025 Another fall

 Not sure how it happened. One moment I was doing some Nordic walking in the corridor, next thing I knew I was on the floor after a substantial nosebleed into the carpet. No memory at all of what happened in between.

Somebody called an ambulance and two excellent paramedics got me up and and into a wheelchair to go back to the flat at the other end of the corridor. They did a very thorough assessment and found nothing of concern. Excellent NHS service. Just a matter of waiting for the bleed to stop (nearly, after six hours) and trying not to set it off again. We've had an industrial carpet cleaner in to deal with the bloody carpet, but apparently he says the section may need to be replaced.

Many thanks to all who helped out in one way or another.

The trouble is that I'm still a couple of thousand short of my target step count for the day, and if I can't rely on the Nordic corridor walking with its many benefits, things will not be looking too good. I've become very reliant on that for all its many benefits and don't want to have to cut that back or out altogether.

Here's a gruesome photo, most of the damage probably caused by the top of my left pole. Those of a nervous disposition might like to move straight on to the next post...

Here it is...

09/07/2025 Confused? I am...

One thing I didn't mention about Monday's Zometa is what happened immediately afterwards. The nurse asked me to book the next one in four weeks time. No, I said, should be three weeks, that's what my consultant has said time and again. So she got all the paperwork out and yes, here's a referral for three-weekly Zometa. But she also found a later referral for four-weekly. So I made the appointment for four weeks time and when I got home I phoned Haematology to clarify. Had to leave a message, of course, no Clinical Nurse Specialists available...

On to this afternoon's chemo appointment. To my considerable surprise, no Dara this time (or next), just the Velcade. And no pills to take and then wait for an hour. That nurse checked her paperwork and yes, that's right. Even though according to last consultant conversation I should be staying on weekly Dara for weeks yet.

I can only assume that she must have looked at the most recent bloods results and decided to change the plan. Without telling me, of course, or asking me whether I'd be happy about that. After all, I'm just the patient with the incurable cancer here, how much do I count? I'm starting to wonder.

Anyway, I got a message back from the Haematology  Clinical Specialist Nurses. As far as I could understand a very crackly line, they want me to 'phone again tomorrow. So much, by the way, for digital phone "lines" improving call quality. Can't say I've noticed.

Got home from chemo and took my Wednesday dex, rather later in the day than usual. Don't know if or how that will affect my sleep tonight...

No recurrence of the "flu-like" shivering and etc.. Told the chemo nurse about it and agreed might be a reaction to the Zometa, or might just have been waking up after getting a bit cold. But no problem unless it happens again.

08/07/25 Zometa and Sandford Lock

   

Had my first Zometa infusion - all done in 20 mins or so, no problems. Very fast and efficient. Was warned about the possibility of flu-like symptoms in the first few days, and yesterday evening I fell asleep in my study chair while the window was still wide open. Woke up feeling cold and shaking. Temperature OK (36.7 rather than the usual 36.6) and feeling warmer and better and less shaky after a hot shower. Will add a couple of paracetamol to the mix later, just in case.

In the afternoon I went out to Sandford Lock, a bit of the Chelmer and Blackwater Navigation that I've avoided before, mainly because the roads are a bit tricky and I never seem to end up in the same place twice. There's some good towpath walking and lots of dragonflies to watch...

03/07/2025 Dex night

I thought last night was going to be a bit better, as I went to bed and turned off the light at about 03:30 feeling that sleep was at least a possibility. But I was wide awake again an hour and a quarter later with that absolute dex certainty of not going back to sleep again. It's now 05:50, I'm in front of the computer (again) and that'll be that for the night.

I hate dexamethasone. Can't wait to get the dose down to 10mg.

02/07/2025 Good consultation

'Phone consultation with consultant today after chemo #10 earlier. She was only two hours late...

Here's the news. Paraproteins down to 2, which is very encouraging. Free Light Chain ratio is 1.8, kappa 6.23 and Lambda 3.3 - that's all very good as well. All other blood numbers are fine except platelets a bit low but that's to be expected. Haven't got the full results through yet, they'll come by post. Eventually...

So we continue with six more 3-week cycles of treatment as at present, and she has agreed to cut the dex dose from 20mg to 10, which should help with the sleeplessness and the weekend crash. That will start with the next cycle in three weeks time. I'm reading lots of studies suggesting that lower dex doses are just as effective as higher ones, so that's in line with current thinking. After those six cycles are done she plans to reduce the Daratumumab to "maintenance" i.e. monthly rather than weekly.

All very good. I couldn't be more pleased.