07/07/26 Red

Some years ago I bought  a red light gadget that you insert into your nostrils and it's supposed to help with persistent blocked nose / sinusitis problems, which I have rather a lot of. I wasn't very much impressed and stopped using it. Recently I've dug it out and started again, with more regular and frequent use than I did first time around - and I'm pretty sure it's working....

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.

20/11/2025 Updating...

Things went wrong - or at least unexpectedly - in my chemo session yesterday. For a start I had an hour's wait after the appointment time before a nurse called me in. Then I decided it was time to tell about a chesty cough I've had for three or weeks now and which isn't going away on its own. I nearly talked about it the week before but as there are no indicators of infection I didn't. Anyway, the nurse summoned a doctor from Haematology to have a look and a listen. Fortunately he arrived quickly, and not the same one as I've seen before. This one was much better. He got his stethoscope out and listened to my chest, concentrating on left side but wouldn't be drawn too much on what he heard. But he ordered a chest X-ray and more blood tests (!!! - I only had three blood draws last week!!!) and went off upstairs to talk tvo my consultant.

Then what I already sensed was inevitable happened - no treatment this week "just in case" - of what I'm not quite sure but presumably some lurking infection. I got a printout of my last few bloods, and they do show a number of the white cell counts being very slightly above normal, but not enough that anybody had commented before.

Was pleased to get a phone call yesterday with an X-ray appointment next Monday, which is pretty fast and will let the consultant have a look at the results before making a decision about next Wednesday's chemo. Even better that the times work out so I can combine it with my next Zometa, so only one trip up Broomfield Road required.

I had a 'phone consultation earlier today - she was almost two hours late, which did not please me very much. Hanging about waiting for important phone calls is not my favourite thing.

Free light chain ratio is good, paraproteins still too low to measure, so that's all good. The Velcade / Bortezomib will stop after the next cycle (which I hope will start next week) and the Zometa will continue until two years done, which will be June 2027. I think NHS funding limits is the main reason for stopping the Velcade...

Otherwise things go on as usual. No dex this week, so it will be interesting to see how the fatigue issue develops. I would have welcomed a dex sleepless night tonight, as Day One of the first Test in Australia starts at 2:30 am. I intend to stay up for the first hour or so whatever happens, maybe catch a bit of sleep first.

19/10/2025 Three...

Nothing much to report again. Chemo continues as usual on the same three-week cycle. Dex is now down to 20mg per week and - as happened during first line - the sleeplessness effect is not as strong as it was. So haven't been up until 4am or so for a while now.

The abscess is just about fully healed now, no longer a pain on sitting and I've been able to do a couple of longish car journeys without needing a cushion. I think we can write that little incident off as in he past now.

As for the future, next week includes no fewer than three blood test appointments: one on Monday before my next Zometa, one on Tuesday before Wednesday's chemo, and one on Friday from the GP surgery after my "Long Term Conditions Review" last week. Good thing I live little more than five minutes walk away from the test centre and can park right outside with my Blue Badge if necessary. So if this turns out to be my last ever post, you'll know what happened. Unexpected death due to loss of blood...

A little more realistically, I'll be interested to see my Hba1c (diabetes) result, because I've lost a lot of weight since the last one, which should mean a big improvement and getting well clear of the "pre-diabetes" danger zone. I hope.

20/09/2025 Six!

Should have posted this yesterday, because the 19th was the sixth anniversary of my formal myeloma diagnosis "multiple myeloma type IgG kappa" and "a new aggressive myeloma". I've not done too badly so far, and rather better than that consultant predicted!

11/09/2025 Back to normal

Started Cycle 7 of chemo last Wednesday as normal, which is something of a relief after two weeks missed because of the bursa / cyst / abscess / whatever it was. Still tender after the minor surgery, but not in a bad way. Going down to Dorset tomorrow for my sister's birthday and not exactly looking forward to three hours in the car - will need lots of service station breaks to give it a rest.  

Now trying to correct a lifelong habit of sitting with more of my weight on the left. Cunningly placed cushions help. 

03/09/2025 The story continues...

Last (Tuesday) night was my first without any discharge at all so it was a little disappointing to get a phone call from Chemo this morning cancelling today's chemo session as the docs had had a conference and decided still too much chance of infection complications. 

Sent to my GP for "review" and another week of antibiotics, which I've now got. So if it's any consolation, at least the NHS worked fast and efficiently this time. Which is more than can be said for the farcical new disabled parking system at Broomfield, but that's story for another time.

30/08/2025 Long time...

Long time since I posted, and that's mainly because non-myeloma health issues have rather taken over these last few weeks. First there;'s that rather nasty fall a few weeks ago. Although the black eye is now almost gone (thanks to lots of arnica gel, which I think has helped), my confidence on foot is nowhere near back to where it was. I do not want another experience like that one! So my daily step count is way down, I've abandoned the Nordic walking in the corridors as too risky for the time being, and I'm barely going outside without a walker or two sticks - or making more use of the scooter which is all very well for fresh air but does nothing for exercise. I need to get back to more movement again but with the temperatures starting to go autumnal the longer walks in the park etc. are less attractive. And of course my boules sessions once or twice a week have been cancelled more often than not since the fall. None of that helps, but it's just a bad patch I need to get through.

The other thing is that I've developed what I think is best described as an ischeo-gluteal bursa - that's a swollen cyst-like lump on my left hip bone, right at the point you sit on. And as I naturally tend to sit with more of my weight on that side, that's been something of a problem. I first noticed a bit of a lump there a few months ago but it didn't cause much problem apart from a bit of pain when sitting, but two or three weeks ago it got bigger and more sore and tender and very painful when sitting, so obviously something had to be done. Last week at my 4pm chemo when the nurse asked the usual "How have you been this week?" question I told her, she had a look and immediately decided to call in a doctor from haematology, consult my consultant, and send me straight off to A&E. 

Consultant decided to cancel the treatment (a Velcade-only day) because of possible infection complications, and I got wheeled off to A&E, Sue following on foot. We waited, I got poked and prodded by various people in between waiting some more, and eventually got seen by a couple of docs from Surgery who decided that it needed draining and they could do it straight away under a local anaesthetic, or next day with a general. I decided to go for straight away.

The anaesthetic injection wasn't exactly fun, but it worked. They did the job, dressed the wound, gave me some antibiotics, and we got home 11:15pm. Oh well...

That was last Wednesday. Today (Saturday night) still a little pus drainage going on but manageable, and I've got past the "no soap, water only!" stage, thank the lord. And this week we start the next chemo cycle with Dara and Velcade, and I hope everything else will be back to normal. Whatever that is these days.

12/08/2025 Cycle 6 tomorrow

Temperature is still 31C outside at 9:20pm! I haven't done a thing this afternoon or evening, just too hot. Likely to be as bad tomorrow and Thursday, when we have a concert at Saffron Hall in the evening. Fortunately I should be on a dex high by then.

Tomorrow should be both Dara and Velcade, then Velcade alone for the following two weeks. So that means tomorrow will include the one-hour wait for the pills to take effect. THat should give me time to finish Richard Osman's "The Last Devil to Die" - I've barely managed a page for the last two times. Nevertheless, detective fiction - not a genre I generally have much time for- seems well-suited to reading in the waiting rom. If that means anything, I don't know what it is.

 The physio business has come to an end. There was some doubt as to whether the GP was supposed to contact me or the other way round. We chanced to meet the haematology doctor in question in the corridor outside the chemo unit last week, Sue got his attention and asked him. Turns out we were supposed to contact the GP (and also that he hadn't written the letter he said he was going to write. So, as the surgery is not far off the route back home from the hospital we called in and explained. And got offered an appointment the following morning!

Somehow typical of the NHS to produce an unpresented burst of super-efficiency just when I'd rather the whole thing had got buried in the usual pile of administrative incompetence. But we turned up, met the very pleasant physio, and he agreed that he knew nothing at all about issues of fatigue, muscle weakness, bone and joint problems in blood and bone cancer patients. He salved his conscience by printing off a page of very obvious hip exercises, agreed he was being used as a "Physio of Last Resort" ("it happens a lot", he said) and we parted on good terms but with nothing useful achieved. And that, I hope, is the end of that little story.

Enough for now, I must try to get some sleep on this very hot night...

10/08/2025 Happy Birthday...

 ...to my Myeloma! It's six years since we knew beyond doubt that I've got it, although the formal diagnosis, letters, etc. took another month. Still just the on relapse, second line treatment is going well (although not without some problems), and plenty more new treatments coming through the pipeline. Things are a lot better than they might have ben and I'll give thanks for that.

There are other things in the queue to write about, but they can wait another day or two for the next post. Today is about those six years. And the next six...

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....