27/11/25 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 ai 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....

  

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.

26/06/25 More fatigue, and statins.

Everything is going well - now finished Cycle 3 (nine treatments altogether) and the only real problem is the fatigue that hits at the weekends. But I know it's coming so to some extent I can plan around it. But in the last couple of weeks it's been complicated by my GP surgery. I got a phone call saying they wanted to increase my statins from the very low dose 10mg daily that I've been on for years up to 20mg daily. No obvious reason, and my lipid numbers are all good so my guess is just that my age has put me into a different risk level. Needless to say the pharmacist who called couldn't give me any better explanation. So, reluctantly, I agreed. Don't want to get an "awkward patient" black mark from the doctors.

Within a few days of the increased dose the fatigue got worse. Longer, deeper, and clear muscle weakness. Walking distances I did easily a few weeks ago, like into town, round a few shops and back again (between 4,000 and 6,000 steps) started feeling like climbing mountains, like they did before I started losing the weight. Slow, terribly slow, and too much effort to keep putting one foot in front of the other, needing to sit down two or three times. My daily average dropped from 6,500 or so (and sometimes a lot more) to having trouble getting to 4,000 and sometimes settling for just 2,000. Couldn't motivate myself to do enough Nordic walking in the corridors to make much difference.

So yesterday I sent a message to the doctors (you have to do an online message form these days, I believe it's called progress) asking for the dose to go back down to 10. To my complete surprise a doctor (one I've had nothing to do with before) 'phoned a couple of hours later. He seemed to want to talk about amitriptyline and once I'd convinced him that the current dose is fine and doing its job and we played around with different doses years ago, we moved on to statins. I explained, and he agreed straightaway. So a 20mg pill on alternate days until the next prescription, and back to 10mg daily after that. Now, of course, the test will be whether that puts me back to where I was, or whether I've wrongly blamed the statins and it's all more to do with the chemo....

That's a bit of a mixed bag from the NHS. Some bits good, some less so. I still don't think they had an adequate reason to change the dose in the first place, but if the computer says to do it they don't seem to have the initiative to add a bit of human interpretation and avoid making a change which isn't justified by any more than another click of the calendar?

14/06/2025 Fatigue!

Bad case of "dex crash" fatigue today. We went to Maldon for lunch (half a cheese & tomato toastie each) and a walk in Promenade Park. As agreeable as ever with a warm breeze, sunshine, and the tide right in for once. But the fatigue hit on the drive home (I wasn't driving, fortunately) and has continued all afternoon and evening. Worst case I've had yet by some distance - it's a common enough reaction a couple of days after dexamethasone, curious that it's regularly worse this time around than it was during 1st line and maintenance.

Going to try for an early night (by my standards); boules at Ogar in the morning if I'm up to it. Which I hope I will be, missed the last two Sundays for bad weather. Too cold, in June...

Some good news from NICE - bispecific antibody treatment has been NHS-approved after successful trials with remission times up by x3. That should be another big step forward in the war against the beast. 

28/05/2025 Chemo #5

Had my fifth Dara & Velcade injections today without problems except that everything was running late at the Chemo Unit so what should have taken an hour and a quarter was actually close to two hours. Annoying, but that's hospitals for you.

One more to go to complete Cycle 2 - just three weeks to a cycle. I'm expecting several more cycles before we drop the Dara frequency down from weekly to fortnightly. Must now go and get some corridor walking done - fish&chips night at Walter House so I won't do much later.

Think I'll allow myself a glass or two of something red this evening.

17/05/2025 Fatigue

It's hit a day early this time. I've done just about nothing today apart from slump in a chair in front of the computer and write a few Quora answers. Made a huge effort and pushed myself out to Tesco to get a sandwich for lunch, and that's about it. Should go to Ongar for boules in the morning, hope I feel up to it. And that it will be warm enough.

It's not just feeling tired, it's worse than that. Hard to explain. Both body and mind so occupied with the battle going on inside between the disease and the drugs that there isn't any energy left for anything else. Sleep - although I need some topping up after two dex nights - doesn't really touch it. Just time. Wait it out...

UPDATE: Did manage to get my 6000 paces for the day by Nordic walking the corridors here. Didn't think I would do it today but pleased that I did in the end.

15/05/2025 Chemo #3, Consultation, blood numbers

Chemo #3 yesterday, and the end of the rather short 3-week cycle 1. Just an hour and a quarter now, as I don't have any immediate reaction to the Dara. The only noticeable effect is some fatigue hitting on the second day of the weekend and into Monday. Consultant said that fitted with the treatment levels falling off at that stage.  Also reported a couple of minor nosebleeds - advised to go to A&E if I get a bad one that won't stop.

The forward plan for the chemo is that we continue as at present until there is clear sign of improvement not just in the numbers but in a scan, probably in 6 months time, to look at any bone changes. If that's good, then reduce Dara to 2-weekly and then to 3-weekly and finally monthly, continuing for as long as it's working i.e. blood numbers start going up again and/or new bone lesions appear. Velcade to continue weekly for the rest of the year, so I shall still have to go in to hospital once a week. Also Zometa starting early July, 3-weekly. That's on a drip in hospital.

Speaking of the numbers:

Paraproteins 23, down from peak in low 40s just before treatment started. FLC ratio 46.36 with kappa down from the 400s to 297. So the treatment is working, long may it continue!

Everything else is good, unless I'm going to worry about my red cells being minutely below the normal range at 4.49 (bottom end of normal is 4.5). I'm not worrying. Corrected calcium, which has been a tiny bit high recently, now back to inside the normal range.

That's it for today. This is a Chemotherapy image, I'm sorry to say that it isn't entirely accurate... I just get two stomach injections, and this time it was a male nurse. At least, I think so. Can't be too careful these days.

13/05/2025 Broomfield again

Back to the Cardio Unit today, Chemo tomorrow, consultant appointment Thursday... Good thing I've got a bus pass!

The story about the contrast echo cardiogram is that they didn't get very clear images last time and wanted "more definition of the heart wall". No suggestion of any right-left leakage. Anyway that was easy enough, and tomorrow's chemo should be just an hour or so which means I won't have to take as much stuff with me to pass the time. But will probably miss out on the free sandwiches.

Beautiful weather again today, it's as good a spring as I can remember. But some rain badly needed, although everything is still lush and green.

Still getting that bone pain in my back and ribs. I'm sure there's more there than the scans have shown.

07/05/25 Chemo #2

All went well today, no unpleasant reaction to either injection (Daratumumab and Velcade/Bortezomib) and no side-effects so far. Delighted to say no repeat of the hay fever like nasal problem of last week so now reasonably confident of putting that down to the high evening pollen count rather than the treatment. First of the week's two dex nights tonight, so not anticipating a lot of sleep (have to be up by 8:0 am no matter what...)

Bortezomib:

06/05/2025 Round Two tomorrow

The story so far...

The "hay fever" attack last Wednesday evening was followed by a smaller one the day after. There is some circumstantial evidence that it was the result of very high evening pollen counts and therefore nothing to do with the Daratumumab but obviously can't be sure. We'll see what happens this week.

Also some mild fatigue over the last two or three days, difficult to motivate myself to a decent exercise level or do anything much. That's not unexpected with any form of chemotherapy. And a nosebleed last night followed by another this morning - both dried up quite quickly. Also a recognised side-effect of Dara. Will talk to the nurses about these things tomorrow.

A small delay in the dental work needed to clear me to start on bisphosphonates - my dentist has replaced one big filling with some decay showing underneath and has done the preparatory work for the root canal job on the adjacent tooth. That will be finished (and should be signed off Friday morning - an 8am appointment!). That week's delay isn't a significant problem but will mean another trip to Broomfield to deliver the report to Haematology. Starting to live there again...

Broomfield Cardio called me in for a repeat of the cardiac echogram with added contrast medium "for clearer images". What I only discovered from the appointment letter that arrived a couple of days later is that they're going to do a "bubble echogram". There's only one reason for that, which is that they suspect some leakage between the right and left atria - basically that's a leftover from the "hole in the heart" that we all have in the womb and which normally heals up a few days after birth. Except that sometimes it doesn't, or not fully. That's not uncommon and usually trivial - if I've got it I've got along ok for 76 years so I'm not exactly worried, and no way they're going to attempt a surgical repair so I'm struggling a bit to see the value of investigating further. Just the NHS dotting the i's and crossing the t's, perhaps. But I shall ask some questions next Tuesday.

01/05/2025 Second Line #1

Day One of 2nd line treatment yesterday. All very good and civilised at Broomfield and as I'd taken my phone, my Surface notebook, two Kindles and an old-fashioned paper book I had plenty to occupy myself through the six hours. I spent most of the time with the paper book!

No side effects or reactions from the Dara as yet unless I count a particularly bad attack of runny / blocked nose at about 7pm. I'm not too sure how it can be both at the same time, but it does. I think this is just my usual combination of rhinitis, solar sneeze, and hay fever but even worse than usual. If it's still bad in the morning I'll have to report it.

Back again next week, and just very happy to be on the attack again!

UPDATE 01/05/25

Pleased to report that things are back to normal this morning so I think it was just the usual rather than the Dara. But I'm not up to 48 hours yet! OTOH I didn't get to bed until after 2am and was wide awake at 4:20. Yes. Dex nights are back. Almost like an old friend...

26/04/2025 Scan reports

 Here they are, in  .jpg form. NB I haven't had a chance to look up lots of things yet...

24/04/2025 The Saga Continues...

More NHS confusion. Day before yesterday I got a phone call with an appointment in the cardiac unit on Monday for a heart scan and ECG. OK, just routine, I hope. Then yesterday morning I had an email from Patients Know Best. Assuming it was just a confirmation of these other appointments, I got on with some other things before I opened it at 12:20.

Notification of a Haematology appointment at 12:00 - twenty minutes earlier. My Tardis being temporarily unavailable, I hit the phone for Broomfield and for Appointments Central Command in Basildon. Twenty-something in the queue for both. So as I'm due in Broomfield Chemo anyway at 14:00 for pre-assessment, I got in the car and headed for the hospital. Got to Haematology at 13:00, only to be told that they have no record of an appointment for me today, and I was given the firm impression that they don't have a high opinion of Patients Know Best...

Nor do I.

Anyway, secretary told me that Dr.Elshazly would see me either before the 14:00 appointment or after. The pre-assessment came first, nothing new there, just going through my history and etc.. And after another hour in the waiting room, I got to see Doc E, whose voice had just about given up after a long day consulting. I could barely hear her some of the time.

We looked at both the CT and MRI scans. Small lesions pretty much everywhere, one "extra-medullary mass" in the low spine but not threatening any nerve roots, and two big "fleshy areas" in the bone marrow halfway along each femur. So plenty of evidence of active myeloma. I gather that the radiologist for the CT scan was thoroughly confused by the big blob of bone cement in my left hip...

I should be getting the scan reports emailed to me later today. On past performance, I'll have to ask at least another three times.

Treatment starts in the Chemo unit on the 30th, continuing weekly at present. Daratumumab (injection into abdomen), Velcade (injection again), and Dex (2 days of 20mg per week, as before. Sleepless nights coming! Not to mention constipation, but I'm better prepared this time and should be able to manage it OK. Blood tests weekly, and I've just spent a happy half hour online booking lots of them at the Chelmsford Health Hub a few minutes walk away. Couldn't fit the first two in so will have to phone Haematology (Don't make me laugh, in the words of Mr. Ring-a-Ding) to arrange for the Clinical Nurse Specialists to do them.

The long watch'n'wait is over and at last things are starting to happen. That's a Very Good Thing.

If only I could say the same for Patients Know Best.

23/04/2025 Another Surprise!!

Well that's a surprise! Just had a 'phone call from Broomfield Chemo saying pre-assessment appointment tomorrow afternoon, first Dara (Daratumumab / Darzalex) injection on the 30th. First I've heard of it, I've had nothing from my consultant. I'm assuming that she must have seen at least one of the scan reports to make things move this fast (next consultation is on May 15). She's not waiting for next bloods results. Can't help wondering what's on those scans....

At least no more vacillating about "relapsing". It's relapsed. Wouldn't be starting treatment otherwise.

17/04/2025 Timescale frustrated

I had an email about a new imaging report on Patients Know Best. 

Full of anticipation I logged in and found this about my MRI scan:

The report will be available on 17 May 2025 at 16:07

Remarkably precise! But two days after the next consultant meeting.

Oh well. Perhaps the email and the blood numbers will be enough.

UPDATE: Someone on the Facebook Myeloma group that I used to admin has pointed out that the appearance of test and scan results on PKB may be delayed so as to give consultants the opportunity to deliver bad news to the patient in person before they read it online. Fair point. So I'm abandoning my idea of 'phoning Haematology Central Command at Basildon to put the appointment back a week, and crossing my fingers that she will have all the evidence she needs by the 15th.

16/04/2025 Timescale

 Now both scans are done (MRI last week, CT this afternoon), here's the timescale:

Approx 2 weeks for the scan reports to come in (although the CT tech told me that the scan would go direct to Haematology). That takes us to the end of April.

2nd May: Dentistry. After which I should be clear to start treatment including bisphosphonates.

6th May: Get bloods taken.

15th May: Face to face Haematologist consultation.

And then, I hope, some long-awaited action!

12/04/25 Surprise...

Had my pelvis MRI, no problems. But when I came out and checked my phone, there was the inevitable Gmail message about my email to Basildon Haematology HQ: "The recipient server did not accept our requests to connect".

In other words, the email address on the Dental Review form is just as useless as the telephone number. What a surprise!

11/04/25 The saga continues...

 Of course it couldn't possibly have gone smoothly...

This morning I had an appointment with my dentist to fit a new crown after root canal treatment last week. I took my Pre-Bisphosphonate Therapy Dental Review Form with me and gave it to him. Being the thorough and efficient dentist that he is (and far and away the best time-keeper ever, I rarely have to wait even a minute beyond the appointment time) he took a couple of new X-rays and compared them with my last ones before announcing that I have two teeth "requiring investigation" - one will need an old filling replacing and a possible crown, the other will be a new crown and probably a root canal job. So I went to reception to make an appointment. First one available was in June, meaning a delay of at least a month and probably more before being in a position to start my 2nd line treatment.

I was not pleased, but nothing to be done.

So I tried to contact Haematology at Broomfield Hospital to talk about this. Every 'phone number I have - reception, Clinical Nurse Specialists, Secretaries - didn't work. Either cut off immediately or "This number is no longer available". I tried the hospital's main reception and they gave me a new number. "No-one is available to answer this call".

I found some contact details on the Dental Review form for the centralised Haematology service in Basildon. I 'phoned the number. "This number is no longer in use. Goodbye".
So I wrote an email and sent it off. At least that hasn't bounced back as "Undeliverable, address not recognised" yet, but I won't be surprised if it does.

Then it was time for my regular online backgammon game. And while we were on our second game I was interrupted by a 'phone call from the dentist. He's had a cancellation and can fit me in at the start of May, just a week before my next haematologist consultation when I hope to fix the details of the new treatment. And I'll have had an MRI (tomorrow) and a CT (next Wednesday) by then as well. So, after after something of a roller-coaster day when I have several times felt like throwing my phone across the room or out of the window, all the pieces have fallen neatly into place. Sent an email to cancel the first one. But why do we have to through all this frustration?

10/04/25 Good news (sort of)

In the immortal words of Etta James - At Last....

From today's post in the Facebook Myeloma UK Support group:

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"It looks as if the long and frustrating watch'n'wait is over. Today's blood numbers (five weeks after the last set) show PPs up from 10 to 18 and the FLC ratio up from 17 to 31. Not quite the doubling that my haematologist was looking for, but close enough. I was also able to offer her two possible symptoms - bone pain in the back rib cage on the right (where I had a previous lesion) and a left hip issue affecting proper movement - very similar to the problems caused by an "extra-medullary mass" i.e plasmacytoma five years ago.

I now have an MRI pelvic scan booked in two days time, and a CT skeletal survey in the middle of next week. Once the results are in we expect to start second line Dara, Velcade and good old Dex. She now seems confident that she can present that to the funding people (meaning that my years of Len&Dex "consolidation" don't count as a separate line of treatment). That's good news.

After five years of remission I suppose it's inevitable that a stupid part of the mind thinks "it'll never happen to me" and "maybe I'll be the first myeloma patient who never has a relapse" even though the rational part knows that's not the way the world works. But now there's the hard reality that I'm just like everyone else and the future will be filled with more repetitions of relapse/remission. Nothing there that I haven't known for years but today it's a bit more real. I expect those reading this and further along the road will know just what I mean; those who have never been diagnosed with a remission/relapse cancer will never really see the same view of their future.

Enough of the philosophy. I'm just glad the nine months or so of feeling helpless while watching the PPs drift slowly upwards then accelerate are over. We're going to do something, and my aim is to blast all those mutant plasma cells into oblivion just as quick as we can.

Have a good day, what's left of it. Keep positive!

Finally, my haematologist plans to start me on a new course of bisphosphonates (Zometa). I queried this, as my understanding is that once you've had 24 treatments or two years of it, that's it for life. But she says "new line, new Zometa". Have others had that?"

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After that, tea, coffe&walnut cake, and a walk in Galleywood Country Park on a most beautiful spring afternoon:

06/03/25 Another consultation...

 ...with my haematologist this morning, face-to-face this time.

Paraproteins up from 6 to 10, light chain ratio up from 6 to 17, but that's still not enough to start another round of treatment. I had nothing in the way of new symptoms to offer, just the usual collection of more-or-less transient aches and pains, all of which might possibly be myeloma-related but none of them convincing enough. She thinks most can be explained by arthritis here and there, which is likely enough at my age...

We had a good and lengthy conversation about the current position. I am now "relapsing" but not yet relapsed - not until I can present some new lesions and associated bone pain, or signs of kidney damage, or other things I'd rather not get to. I'd like to get straight on with treatment but there are complications with NICE guidelines and NHS funding. One of the problems is with the dexamethasone and lenalidomide "consolidation" that I had privately after the stem cell transplant that never was back in 2020. My consultant then refused to call it "maintenance" (which, arguably, it was) and the reason is now obvious. If it had been maintenance it would have counted as second line (even though I hadn't relapsed, and as far as I've been aware new lines only begin with a relapse). And that would have meant that we would have lost the option to go back on either of those two drugs at a later stage. Such as now, or before too much longer. And if we can't do that it might mean going on to drugs not normally used until a stage or two further down the line, meaning that I might lose access to them when I really need them. Complicated.

She's working on ways to present my case to the funding authorities in a way that gets around these difficulties. So at the moment I'm in another sort of limbo, poised halfway between first line and second line, and I have to rely on her ability to find a good way through these tangles. I could help by developing a few good unarguable symptoms, so in essence I'm hoping for it get worse so that it can get better.

I hope that's clear. Or clearish, which is all it is to me. The alternative lies in those blood numbers. If the PPs get to 30, that could be grounds for starting a new line. Might be there in six months? Anyway, increasing the frequency of monitoring to six or eight weeks.

Bloods also show (corrected) calcium slightly above normal range. She thinks this is a hydration issue and I should drink more water (I freely admit I don't drink as much as perhaps I should) but I pointed out that it could also be a consequence of bone breakdown if new lesions are forming. But she doesn't want to do a scan to look for them without evidence of bone pain...

Ah well. It's back to watch'n'wait again.

On other things my walking is now back to normal after a few weeks of trouble with either my right foot or my right shoulder, and a beautiful sunny spring day in Chelmsford - 17C this afternoon after a 1C start this morning. Had a good walk into town and back through the park, with spring springing up all around. 9379 paces as I write, and will get that a long way beyond 10000 with Nordic corridor-walking later. And weight loss is also back on track after too many days of enforced reduced activity - now 13.8kg below my worst (2 stone and 2.4lbs). Over halfway to my ultimate goal.

19/01/2025 Results update

Slightly annoyed with my consultant. Reading my copy of the clinic letter sent to GP after the last consultation, not only are my paraproteins up to 6 but my free light chain ratio is also at 6. Normal range is 0.26 - 1.65. That's another strong indicator of myeloma activity starting up again in my plasma cells. She just told me about the PPs and said "Everything else is OK."

Well, sorry, but it isn't.

07/01/25 More Results

 'Phone consultation with my haematologist today. Paraproteins up to 6, everything else normal. So the pattern over recent months has been ...0..0..0..0..2..3..6. That, she agrees, is a definite trend and can't be dismissed as a blip, wobble, testng error, or similar. The Beast Is Back after five years of remission, three of them off all treatment.

She doesn't want to start treatment yet as I have no new symptoms to offer and therefore she thinks too early for another scan as risk of x-ray exposure outweighs chance of finding any new lesions. Not sure I agree but PPs at 6 is still very low and I can see the case for waiting. I do, of course, have the selection of aches and pains that can be expected in the second half of my 70s but they can be explained by degenerative changes (right wrist/thumb), return of old problem (right Achilles tendon getting troublesome again) or doing something stupid leading to muscle strains. I think I know how to recognise "bone pain" now, and I don't have any.

So it's back to watch'n'wait for another few months but if the PPs continue to increase at same rate or above (virtually certain, I think) she will order a CT next time. 

So there we are. Remission is over, even if relapse hasn't (arguably) quite started, and 2nd line is coming. Can't complain, I've had five years and general health is still good. Speaking of which, weight loss continues - now 11.7kg lighter than my worst, or 1st 8lbs if you prefer.