05/08/2026 Anniversary and more

Too long since I posted....

It's the seven-year anniversary of the day we knew for sure that I have myeloma, although the formal diagnosis wasn't until mid-September 2019. I was told I had maybe five to eight years, and I've done seven and am planning on a good few more...

Several test results have come in, including the leg angiogram, and they are all good. Which is sort of bad, because they don't help identify any problems. Nevertheless the GP sent me off for another chest CT - results not due until September sometime.

The persistent cough is now gone, so it looks as if going back onto Omeprazole (proton pump inhibitor to reduce stomach acid) has done the trick. Next step- although not quite yet - will be to come off the Omeprazole to see if the cough returns.

At Chemo today, while the nurse was giving me my Daratumumab injection, she asked if I knew what it cost. My guess was well under the mark. This is a standard myeloma drug and every patient gets it for a few years at some stage. £4,200 a shot! Makes you feel you need to do something to justify it and I do through various online activities, the new mid-Essex patient support group, and so on. But enough? Well, I'll try to update this blog a bit more frequently...

This is the wonderful thing about the NHS - you get what you need irrespective of cost or ability to pay, as long as NICE thinks it's value for money. Far better than the American insurance system...

18/06/2026 Face to face consultation

The chest XR results came through - all ok. So now, according to my GP, the next step will; be a CT to look for signs of sarcoidosis. Nothing happening about that yet but I have an appointment with him early next week.

Had a rather heavy cold last week and that's left me - of course - with a lingering chesty cough. Just to confuse things! 

I had my most recent face-to-face with my haematology consultant last week. All blood numbers still good, no developments, carry on as usual...

However, possibly because I was wearing shorts in the hot weather, she was struck by the leg/ankle swelling in the left leg in particular and decided there must be some sort of fluid return problem there. About time too, as I've brought the subject up several times before with no effect. She ordered an angiogram (CT with contrast medium) and - with amazing NHS efficiency, I had that a couple of days later. Results are due on Sunday. I'll report when I've seen them.

'Bye for now...

15/04/2026 Cough cough cough...

I haven't written about this before, because it's not myeloma related. But maybe it is, in a rather indirect way. Read on...

Back in September 2025 or thereabouts, I developed a chesty cough. My wife thinks it came after a mild cold. It didn't go away. Towards the end of 2025 I reported it to the chemo nurses,they summoned a doctor from Haematology. He had a listen and ordered a chest X-Ray and some blood tests. As far as I know those all came back clear and normal. But the cough didn't go away.

Into the New Year and it still didn't go away. So I reported it to my GP. His first move was to recommend a steroid nasal spray (Beconase). That cost me £14 and did absolutely nothing. Next move was antibiotics (Doxycycline) which had the same result. No effect at all. So now I've told him my smoking history (clean for a bit more than thirty years now) and also mentioned that my sister has a persistent cough and is diagnosed with sarcoidosis. This, like myeloma (there you are!) isn't directly inherited but there is a genetic predisposition towards developing it and it does tend to appear in family clusters. So now (today) he's ordered another chest X-Ray ("it is quite a while since the last one") and if that comes up with nothing (which I suppose means no sign of developing lung cancer) he will move on to a CT scan looking for evidence of sarcoidosis. Well, from the smoking / lung cancer side, I suppose there may be a price to pay for all the pleasure I got from it. I hope not, but...

Anyway NHS admin excelled itself this time. Dr. Singh said I would be getting a letter about an X-Ray appointment. But just an hour later a text arrived with a link to a choice of three hospitals, all offering appointments within a week or so. He said it would be an "urgent" request, but we know what that usually means. I've booked a slot in Braintree on the 22nd, a week today. All credit to the NHS for once. Now we'll see how long the results take to come through...

And of course the cough still hasn't gone away.

13/03/2026 Prostate

I haven't written about this before mainly because it's not related to my myeloma, just general health. I've been developing signs of prostate trouble for some months now and finally decided to take it to my GP. His first action was to order some blood tests which all came back encouragingly normal, including the PSA. I had a face-to-face with him a couple of days ago and he did the infamous finger thing. Not as unpleasant an experience as one is led to believe, and all done very professionally. Anyway he immediately declared a benign enlarged prostate and put me on medication for it (the alpha-blocker Tamsulosin 400 micrograms daily, which I believe is the standard opening move). No side-effects yet, but only taken it for two days so far. So, there you go. Not unexpected at my age. Just hoping the Tamsulosin does help with the symptoms. Dr.Singh seems very enthusiastic about it, and he seems to be  avery good GP to me.

On the respiratory / CPAP side of things I contacted Bromfield a few days ago as requested to chase the referral and they said yes, you're definitely in the system, we'll get to you at some stage... Well, fortunately it's not life-threatening!

That's about it for this month. I'll be back when there's something new to write about.

Nearly forgot - the NHS super-efficient admin has now given me two separate appointments for my next face-to-face with my haematology consultant, within a few days of each other. So much of Monday will probably disappear down the phone trying to sort that out...

06/02/2026 ZZZzzzzz....

 Time for a medical update:

The good news from last week's face-to-face appointment with my haematology consultant, Dr. Elshazly, is that the blood numbers are still looking good on the four-weekly Dara instead of weekly as it used to be. So everything there is fine. We continue as it was.

We also talked about the problem of the fatigue, or tiredness, or sleepiness, or exhaustion, or whatever you call it, that is part and parcel of the package with many cancers, and certainly with myeloma. It does lead to me falling asleep too much during the daytime when I should be doing other things.

She raised the subject of the sleep apnoea and the CPAP machine. I said that while I have been aware for a while that it doesn't seem to be working quite as well as it used to, the numbers that come through from the machine aren't as good as they used to be, and that any effect on improving daytime sleepiness was never very great. It was never dramatic, but it was there in the early days and I don't think it is now at all. Something's not working right, whether it's the machine, the mask fit, something about the way I'm responding, I don't know. Quite often I wake up in the morning and find that sometime overnight I've actually taken the mask off or it's come off, come loose, or the push-fit joint that connects it up to the hose from the CPAP machine has come undone. So it's doing no good to me at all.

One way or another, I was getting close to the point of contacting the respiratory people at Broomfield anyway to ask them to review the situation with this. She independently said that that seemed like a good idea and said I should contact my GP to ask for a review. I said, "Well, wouldn't it be simpler if you just contacted my respiratory consultant and asked straight away?" She said, "No, got to be through your GP."

So I did that. I reported to the GP and the GP texted me to say he was passing me on to somebody at the new Beaulieu Health Center on the other side of Chelmsford in the big new housing estate over there.

So I was there this afternoon and saw another GP, told the whole story all over again, and she wrote a letter to the respiratory consultant requesting that they have me in for a review.

All very well, but it does seem a bit of a farce that this has involved the time and paperwork of two GPs, not to mention me driving about all over the town, all for something that could have been done by a quick internal email in Broomfield. But it's the system. I suppose we have to keep the GPs in the loop at every stage. It's the way it works. It's a small drop in the ocean of NHS waste and inefficiency, but it does seem to me to be an unnecessarily complicated way of doing things.

Anyhow, I now await a contact from Broomfield for them to call me in to have the whole thing reviewed by the people who know about these things. As to how long that will take, we wait and see.

And I think that's all for now.

N.B. This post was written with the assistance of the AI speech to text recognition app Letterly.

25/12/2025 There'll be some changes made...

Chemo yesterday, despite it being Christmas Eve, and the start of 2nd line Cycle 11, which is going to be a bit different.  Now waiting to go out for Christmas lunch in a nearby pub where we've been for the last several years, so a good opportunity to update the blog.

No more Velcade / Bortezomib, so down to just monthly Dara now, which means having to go to Chemo once every four weeks instead of once a week. Dex (steroid) goes down to just 4mg on Dara day and the day after. Omeprazole now just on Dara days (if I understood the chemo nurse correctly, will need to check that with my consultant - will leave a message on the secretary phone line, if one of the half-dozen phone numbers will actually work. Not betting on it...) But I keep going on the anti-viral Acyclovir twice daily as before and Zometa continues until I've used up another two years. Quite a way to go on that.

So now it's just monthly blood tests instead of weekly, so I spent a happy half-hour yesterday cancelling blood test appointments I no longer need. And so it goes, dropping the Dara frequency down to every two-months and then every three as long as the paraprotein numbers stay good. The downside is that I won't get a check on those as often, which does make me slightly tense and nervous. I like to stay up to date as far as possible...

Anyway, a Merry What's Left Of Christmas, and a Happy Shiny New Year. And every day I remember that if not for all the recent advances with immunotherapies and fancy bi- and tri-specific antibodies, not to mention targeted therapies and the progress with CAR-T gene treatments, I would probably be dead by now, or certainly in a much worse state. So my plan for 2026 is to celebrate still being here every day through to 2027 and preferably much longer. There's another General Election to look forward to...

27/11/2025 Something strange...

.... happened during yesterday's chemo session, although I rather doubt it had anything to do with the treatment. 

For months now my walking has been getting gradually worse. A year ago I thought nothing of walking into the High Street and back (that's about 15 minutes when it was good, twenty or more recently). Hard to say exactly what's been wrong, I just don't seem to go any faster or for longer without needing a rest.

The moment I left the Chemo Unit for the short walk back to the car, it felt very different. Faster with no sense of strain, the whole movement seemed easier and more natural than it has for a long time. Later at home I found that turning on the spot was also much better. Previously that required two or three shuffles for a 90 degree turn, now I just do it in one go.

In the shower last night I found something else.For a long time I've been unable to get my left fingers into my right armpit or much past the top of my right shoulder. But now I can, and painlessly as well.

I feared that both improvements might not last through a night in bed (even a short one, it being a dex night) but all is good again this morning. Remarkable. I don't understand it. Must try to sit in the same chairs again next week...

The problems of last week are now resolved and I started Cycle 10 yesterday with both Dara and Velcade. My potassium level is back into good territory and the haemo doctors were happy to go ahead even though the cough is only marginally improved. I gather the chest X-ray didn't show anything too horrible, which is a weight off my mind. I had been having unwelcome thoughts about lung cancer. I did smoke too much for a long time and although my risk is down to non-smoker level after 34 years, that doesn't mean that it's zero. I'm also very aware of the recent death of a friend in the Netherlands who gave up cigarettes much more recently but paid the ultimate price.

Anyway, news is all good this morning. Nice to have a day like that, long may it last.