31/12/21 Not a great day

It started with losing the EPAP anti-snoring device that lives in my right ear overnight. Usually one of the first things I do in the morning is to download the data from that and from the continuous O2 sensor, but yesterday morning the EPAP went missing. I had to turn over quite a bit of the house before I eventually found it under the bed. It must have fallen out of my ear and then I unknowingly back-heeled it under the bed...

I've mentioned problems with our phone system before. They hit crisis point yesterday and - well, I won't bore readers with the details but it was extremely frustrating and we ended up equally impatient with each other, BT, and the universe in general. The upshot is that we are now convinced that there is a line fault behind it all and BT, who seem to agree, are sending an engineer on Tuesday.

Did the Pill Organisation in the morning and emailed Ken at Birchanger Petanque to see if there was going to be anything on in the evening, as it was much warmer than recently. The answer came back "yes" so I went out, very happy to get away from the house for a while. Really needed a break. Only four players there, me included. Played two games, won one, lost the other.

I'm in the middle of one of those patches where my balance is bad - not so bad that I fall over, but bad enough that I think I'm going to. and that made me really slow on the piste, just as at home - which made the day even more frustrating than it was anyway. Getting up from my chair downstairs, and from the stool in use in the shower, has been far harder than it should. I put it down to lack of exercise for the last week or so and that's easily fixed as long as the weather stays not too bad.

29/12/21 (2) Braintree & Bocking

Possibly the greyest and murkiest day yet, although a lot warmer and the sun did even break through for a while in the afternoon, which does wonders for the spirit. We went  to the Braintree & Bocking Public Gardens for a walk and a light lunch:

and this is me in the garden dedicated to the memory of John Ray, father of English botany, who was born in the village of Black Notley just a few miles away:

I seem to be in the middle of one of my occasional patches of bad balance. Well, let's not exaggerate, slightly worse than usual.They normally last for just two or three days so I expect an improvement tomorrow. If not I shall have to report to the team at Springfield.

The potent effects of the Fybogel & Laxido combination are still hanging on a bit - I should have gone for the Laxido a day earlier. One lives and learns...

I took a Furosemide (diuretic) after lunch, washed down along with the rest of my lunchtime pills by the last of my cappuccino. Usually I reckon it takes two hours for the effects to kick in - plenty of time to get home first - but this time it was not much over half an hour. Psychological, perhaps = the mere fact of being away from home?. Whatever the truth of that may be, the post-shower ankle oedema is visibly reduced this evening.

29/12/21 Cable chaos

Yesterday was yet another grey, wet, miserable day and yet again I didn't get out, although I still got to 75% of my quite high activity target. Must get out tomorrow one way or another. Otherwise things roll along as usual with a bit of work on the facebook myeloma group and much relief from the Laxido.  You don't really want to hear about that. But I didn't feel the need for the usual nightly Senna last night.

I keep taking the pills, hoping that they will continue to keep the myeloma at bay even though I know it won't last forever. One day, the beast will be back.

I was searching for an image for this post and then I took a long hard look at the #2 desk in my study, which currently offers a home to (almost) all of my rechargeable devices. It's a chaos of cables and I really must do something to sort them out, but what?

Here it is, with smartwatch, Oura ring, anti-snoring thing, continuous O2 sensor, USB handwarmers, fibre router (nominal 400 mbps but usually better), 24-hour blood pressure monitor, and my Surface computer. Etc...

Before myeloma, all I had was a smart watch...But back then I had a very cavalier attitude to health data, apart from keeping an eye on blood pressure and glucose. My attitude has turned around completely and I'm now a sucker for just about any kind of wearable health and fitness tech.  The more I know about how my body is dealing with the myeloma day to day, the happier I am.

28/12/21 (2) Laxido

 Laxido does it again! Wonderful stuff. Also known as Movicol, I believe.

28/12/21 Soup

No luck with the constipation so far- now three days without action so added a Laxido to the Fybogel and Senna last night. I hope that works in the morning...

We have a lot of parsnips left over from Tesco's vegetable box, so I think I'll roast them off along with a potato or two to get a bit of caramelisation - maybe the leftover carrot batons as well, chop and cook an onion in the Thermomix then add the roast veg and a a bit of mild curry powder and the turkey stock. Should make a decent curried parsnip soup for a couple of lunches. Even better if we can get some creme fraiche in time...

27/12/21 Turkey koftas, stock, constipation again.

Another dismal  wet day, not been out, but activity target met anyway. Spent most of the day in the kitchen although I don't seem to have achieved a lot. Put  half a leek and the rest of the turkey crown into the Thermomix along with a couple of sprouts, the two last stuffing balls, leftover mashed potato from yesterday, and a packet of bread sauce. And an egg. I'll make the result into koftas and pan-fry them for dinner. Along with yet more steamed sprouts, carrots, and red cabbage from Tesco's vegetable box.

Also used the turkey carcass and some veggies to make a turkey stock, which will be a good base for some soup or a risotto.

No furosemide today, I think two 40mg ones on consecutive days is enough. Don't want to get dehydrated! But no good news on the constipation front - last night's double senna and Fybogel wasn't enough. I'll add Laxido tonight, if still needed. And I'll just go and check my stock of glycerine suppositories Just in case.... Yes, still got plenty. Oh, Myeloma is a wonderful thing...

26/12/21 (3) Murk, Fybogel

The greyest, murkiest, rainiest and generally miserablest day of this winter so far,even though the temperature hasn't been too bad at 6 or 7C. Needless to say I haven't been out other than to the garage, but still in sight of my activity target. Took a Furosemide at about 14:00 and effects still going strong as I write (18:00).

20:45 and activity target thoroughly beaten.

It's probably all the Christmas food, but I think I'll be on double senna and a Fybogel tonight. That's unless this evening brings some action.

26/12/21 (2) Weight, splits

 First thing this morning wasa 93.7kg, meaning a drop of 0.8 overnight, which is rather a lot. I'll try another Furosemide today, if I can work out  safe time to take one in terms of going out for walk / lunch.

That sort of loss isn't unprecedented - see the graph. And it happened once before the time frame on that shot.

A quick mention of the Boxing Day test in Australia - no, maybe not. It's too painful. Bad for my frame of mind.

All finger and thumb splits now healed to a point where I can type with all digits on both hands. That'/s quite a relief. Now I have to keep them that way.. 

26/12/21 Tough turkey, weight, water

Yesterday was a pretty good day overall despite being too wet for a walk and the Tesco turkey crown being a bit on the tough side. No natural fats in the crown, of course, and no amount of basting can cover for that. If I do a crown next year I'll stuff some garlic and herb butter between the skin and the flesh. That should help it. Forecast not much better for Boxing Day, so it may be a matter of grabbing a quick local walk during the rain breaks.

Weigtht was 94.5kg yesterday morning (too much, I know...) and on getting out of the shower jusy now it was 94.1.So I've lost 0.3 kg during a day with Christmas lunch. etc. It seems unlikely. The Furosemide I took in the morning must be the answer - I certainly urinated profusely for several hours around mid-day. Must have been a good deal of ddex-inspired water retention. OTOH the ankle swelling doesn't look much different from yesterday, so I think I'll take another diuretic later this morning.

BTW yesterday (Sunday) morning was the second 10mg dex of the week. Dex doesn't affect my sleep anything like as much as it used to, or have any obvious effects on mood (I think!) but that doesn't mean that there are no other less obvious effects. And water retention may sell be one of them. Perhaps it's something I should plan for a little more carefully in the future.

25/12/21 (2) Christmas morning weather

 

No comment needed!

25/12/21 Christmas

 00:34 on Christmas morning, and the temperature outside is 8C. No chanced of snow.

A very Merry Christmas and a Happy New Year to all my  readers. And I think there is good reason to expect 2022 to be an improvement on 2021, unless COVID manages to come up with some even nastier variants...

A phone call yesterday morning told us that the Braintree & Bocking Gardens Cafe was closed, so we went to Oaklands instead for coffees and once around the park. Just enough to get me past my large activity target for the day.

The left arm is a bit bad today - sore and slightly limited movement from the shoulder down to the elbow. It is of course the one where I broke the shoulder a few years ago, Also finding the stairs a bit difficult again on the way up. Not yet intending to put a stairlift in (we had one before for a few years after the Achilles tendon operation on my right ankle), but the possibility is appearing again. Both those things were, of course, before my myeloma or even my MGUS appeared. Not sure what I did to set the left arm off, unless it was bringing a bag of salt for the water softener in from the garage. I've applied a large dose of Universal Panacea and hope it'll be better in the morning. If not, cooking the Christmas lunch is likely to be a bit of a problem. Although not as bad as it would be with my right arm out of action. If needed - which I think it may be - I'll try my massage gun on the arm later.

Reflecting on this Christmas and the disastrous Christmas 2020, we've come a long way thanks to the vaccinataions.ut we're still a good way short of being out of the wood. On a purely personal level, I'm in very much the same place with my Myeloma, the only big difference is that I'm now triple-vaccinated. In terms of shielding etc. I'm perhaps a bit more willing to go to restaurants etc., but still take all the precautions. Myeloma-wise, things haven't got significantly better (except for another twelve months of zero paraproteins etc.) but they haven't got any worse either. And for a remission/relapse terminal cancer, I can't complain about that.

24/12/21 Frost

 In yesterday's post I forgot to add two photos of the first real hard frost of the year, so here they are:

Probably as close to a White Christmas we're going to get.

Went to Springfield yesterday morning for the four-weekly bloods and new meds - it's just lenalidomide, dexamethasone, aciclovir, and co-trimoxazole now, all the other things come from the GP surgery. The strange thing is that the nurse didn't get enough blood from my right elbow and their analyser refused the samples. So she had to top up from my left elbow - and that's the same as happened with the RUDY samples the day before. And it's the first time - one needle has always been enough before.Twice in two days is enough to suggest a connection but I don't know what.. I'm on a blood thinner (20mg rivaroxaban daily) and clotting when I get a little cut etc. is normal or maybe a little slower than I'm used to.  So I don't suspect clots forming too easily and blocking the needle. But something's going on.

Did Pill Organisation a day early to leave as much time as possible later this (Friday) morning for us to have the usual leisurely breakfast, do an hour or so of domestic work, then go out somewhere for a walk and some lunch. If the weather's OK of course.

Post-shower ankle oedema seems to be up a bit tonight. Christmas Day should be a good one for a dose of Furosemide.

23/12/21 RUDY, and two deaths

Did the RUDY blood draw yesterday  at the Chelmsford Health Hub,  You might think that by this time (it's the fourth one there, I think) they'd have got the hang of it and wouldn't have to go off to talk to the bosses to find out if it's OK or not - especially as I give all the details when I book the appointment. But rules must be followed, I suppose. The phlebotomist wasn't all that great either, although she was at least painless. I had holes in both elbows by the time she was finished - and another one to come later today at Springfield.

Didn't get a lot else done yesterday, but my NHS letter about sending a PCR kit ready for fast action in the event of COVID symptome did arrive - although the test kit didn't. Should be here by Jan 10th, although I know that a lot of people have theirs already. The letter also confirms my eligibility for one of the new antivirals if needed (there are now three to choose from). So we've just about made my criteria for returning to live music - a vaccine that works for the immune-compromised, and at least two different treatments. Nevertheless, I don't feel at all confident with Omicron around.

Some sad and related news - the wife of one of he other admins on the facebook group died after nine years of myeloma. She also caught COVID (not sure which variety) and despite being triple-vaccinated had no antibodies to fight the virus. A harsh reminder that even if the vaccines are 90+% effective, that still isn't 100% and nothing can be taken for granted. 

I also heard of the death of an old internet friend I've known online for the best part of 25 years. He had kidney disease and made the decision to take whatever was coming rather than fight it. A deeply cynical, brave, articulate, dark-souled man with a warm heart underneath it all. He went the way he wanted to go, and maybe that's all any of us can hope for when the end of the road arrives.

22/121/21 Superdrug

Our electrician arrived earlier than expected, saso I decided to use the rest of the daylight to make the trip to Southend to dispose of all those empty blister packs at Superdrug. It was in fact probably the longest drive I've done since all this myeloma and COVID business began - over an hour on the way out (mainly because of congestion getting through Chelmsford) and almost an hour on the way back. And the driving conditions weren't great - grey and damp with slightly limited visibility, and I felt pretty tired when I got home, although not in falling asleep kind of way. I think that's established a benchmark for how much driving I can take in a day now. Two hours is the limit without an good long break. 

Advance planning worked and I got into a car park just a few minutes walk away from the Superdrug store. It would have been better still if I hadn't had to drive around two or three times before locating the entrance before I passed it, but I'll know better next time. Nio trouble At all in the sore - the pharmacy accepted the blister packs without any difficulty. It's just a pity the Chelmsford one won'tdo the same thing.

Not the Southend store, but it looks much the same.

RUDY bloods to be done this afternoon, which I may combine with some late Christmas shopping. Otherwise things are ticking over as usual. There's been a bit of admin to do on the facebook myeloma UK support group with people complaining about one thing and another. No big rows, but not always easy to find the best way through different opinions to leave everybody reasonably happy and nobody feeling their views have been ignored.

21/12/21 No more Zometa!

To save typing it all over again, I've copied this from a post to the facebook myeloma support group. This isn't something I do often!:

Back home from my GP surgery after collecting a prescription and talking to reception about the 4th vaccination, which for me is due on Jan 10th assuming a three-month delay after P3. They can't book a date yet, advise waiting to be contacted and to get back to them if I haven't heard anything by Jan 10th. Well, I shan't wait quite that long! Alternatively I could go to a walk-in or book somewhere else online. Basically, in other words, they don't have an operational system and it's just as chaotic as the third vaccine rollout was - and for all I know, still is.

Also had a 'phone consultation with my haematologist - by 'phone at my request because the last two have been face-to-face and it reduces COVID exposure to stay at home on the 'phone. I have to go into the hospital anyway on Thursday for the next bloods to be taken and to collect meds - and at last, no more Zometa! I've done my two years and twenty-four drips. Have cancelled regular twelve-weekly bisphosphonate dental checks as well.

All blood numbers from the last tests are good, so continuing in "complete immunological remission" consolidated by Len & Dex as usual. The news couldn't be much better, all things considered.

Finally made it out of the house for a decent walk around the local triangle, so activity target well met for yesterday.

Yesterday's post included another blood test pack from RUDY (the Rare Diseases study people), and I've booked that in for Wednesday at 1350 - last appointment available before Christmas and end-of-week, which the RUDY people don't like because of the chance of the samples being stuck in the post over the weekend.

Later today I have our electrician coming at some point "mid-day" to look at a problem with the kitchen lights.With luck I'll have time to get to Southend Superdrug after he's finished to dispose of those empty blister packs. Won't be able to do it Wednesday with that blood appointment in the afternoon, so that pushes it on to Thursday after my meds & bloods (but no Zometa!) appointment at Springfield late morning. I'm determined to get this done one way or another - I haven't been collecting all those blister packs just for them to end up in landfill along with the rest of the non-recycling waste.

20/12/21 Various

Another cold, damp, foggy winter day, temperature not getting above 3C until the evening when then light had long gone when it got as high as 6. Despite the best of intentions I never got out for a walk but reached my qute high activity target anyway.

Added to my finger spilt etc. problems by nicking the end of my left thumb with a kitchen knife while doing the fiddly job of peeling some leftover shallots, and then getting a scratch on the base of my left thumb while getting hold of one of the cats for Sue to deliver her monthly flea treatment.

Have been rather less sleepy, perhaps because of two dex days (Saturday and Sunday). Still no sign of a CPAP machine. Will ask Dr.Ch if he can chase it up a bit when we speak later this morning. The appointment is for 11:00 and I have a prescription to collect from the GP surgery so will fit that in after breakfast. On past form he's not likely to call until at least an hour after  the time, and probably longer.

 Depending on how times work out I may try for Southend Superdrug to get rid of all those empty blister packs in a responsible way.

Several moe reports of people getting molnupravir delivered - some by courier, some by post. The postal route is a little worrying with the inevitable delays at this time of year (plus local delivery problems in Chelmsford, where some people haven't been getting post for several days at a time).

Also a rather worrying piece in The Guardian "Rising number of blood cancer patients dying of Covid in England and Wales":

<https://www.theguardian.com/world/2021/dec/19/more-blood-cancer-patients-dying-covid-england-wales?fbclid=IwAR1pgK8D-hqg2r0EG9wHX_BdTSIM4gyXrwLNsUNm80Yzkfo39TkgUD1YjQk>

Too long to quote in full.

Hit my quite large activity target  (by 1 point) by going up and down the stairs a couple of otherwise unnecessary times.

Can't think of an appropriate image to add tonight. So this will have to do:

19/12/21 Dyson, molnupravir, Wuhan

Another quiet day at home, apart from cleaning out the jammed brush bar on the Dyson    For some strange reason JD' s  designers put the foot-operated on/off switch on the right side of the body, which is exactly the wrong place for right-handed right-footed users. That's been annoying me for years!

My Oura ring set me a very high activity target for yesterday,which rather destroyed my motivation for reaching it. I got about two-thirds of the way and I'm happy enough about that.

Someone reported on one of the facebook myeloma groups that she had received a five-day course of  molnupiravir delivered to her home by courier by courier. So she must have had a positive PCR and a definite COVID diagnosis.  It's one of the two antiviral drugs we now have for high-risk people(such as me!) and makes the prospect of catching COVID rather less unpleasant - not that I intend to relax my precautions in the slightest just yet. But I'm starting to hope that a return to live music may be not be all that many months  away. Unless, of course, some evil new variants pop up in the meantime.

Interesting to see that the majority of scientific opinion seems to be swinging behind the belief that the pandemic originated with an escape from the virology institute in Wuhan. If that can ever be established, China may be on the wrong end of perhaps the biggest compensation claims the world has ever seen. Lots of lawyers will get rich, and there won't be any results for decades. But China's position as a world superpower will be profoundly damaged...

18/12/21 Phones, celery, Thermomix.

Another rather lazy day at home - the low-energy fatigue got the better of me a bit yesterday. Did a few things about the house including Pill Organisation but didn't make much (if any) progress on the ones I actually wanted to do.  We had a problem with the landline phones which rejected incoming calls and claimed a "Do Not Disturb" setting which we couldn't track down. Anyway, all working again now - I hope.

Despite that day at home    , beat my rather low activity target twice over.

Thursday night is almost always salmon fillet night, so as we had a lot of celery and an out-of-date pack of mushrooms I threw them into the Thermomix along with a couple of tomatoes, some basil, and a splash of Worcestershire to make a topping before baking them in the oven under foil. Considering how unpromising celery and salmon is, I was quite pleased with the result. Sue not so much, but she didn't have to work out a way of doing it!

That's all for tonight, I think. Nothing new to report on the myeloma front.

17/12/21 Blister packs

Nice to have had an appreciative comment from a reader in New Zealand, and good to know that this blog does get around a bit even if I don't these days.

I spent the morning in then mounted an expedition into Chelmsford for a few things and to take our accumulated pile of empty blister packs (for pills) for specialist recycling. This is, more or less, what I wrote on Myeloma UK Support (facebook):

Several months ago, either here or somewhere else, there was a post about disposing of the empty blister packs for pills that we all generate rather a lot of. Other family members may produce even more. The problem is that blister packs are complex composite materials that require specialist recycling. I researched a bit and found two branches of Boots - one in Chelmsford and one in nearby Danbury - that would accept empty blister packs and send them on in bulk to the appropriate place. A few days ago my wife was in the Chelmsford store and checked that they would accept empty blister packs. She was told yes, they do. We now have two large carrier bags stuffed to bursting, so this afternoon I took them along to Chelmsford. They said they couldn't take them. The man in the dispensary I was dealing with checked with his boss - same answer. I can only think there was some confusion with returning unfinished packs of pills. I wondered whether to phone Danbury but decided to drive there instead - easier to give someone the brush-off over the phone than in person, or that was my reasoning. I got there, stood in a socially distanced queue for what felt like twenty minutes but was probably only about five, and - "No, sorry,we can't take those any more, the bin's overflowing and they haven't collected..." So the carrier bags are still in the back of my car and unless I can find somewhere else to take them, they'll end up in general non-recycling waste where they will remain undecomposed for thousands of years. And in return for trying to be a conscientious green citizen doing the Right Thing for once, I took two totally unnecessary COVID risks and burned some diesel in return for nothing at all but some raised blood pressure. Am I a happy man this evening? You work it out... So, how do the rest of you deal with your empty pill packs? Is it something that bothers you at all?

That produced a lot of positive responses, many pointing out that branches of Superdrug with in-store pharmacies do take blister packs in. Unfortunately the nearest one of those is in Southend. I suppose I'll have to find a reason to arrange a day down there. Fish'n'chips on the front is always an attractive proposition... Many people also said they have small local collections in their churches and the like. Nothing of that kind around here as far as I've been able to find out.

I emailed Dr.Ch about moving Monday's consultation back to 'phone in view of Omicron risk, and he replied "I agree".. The only thing I want to talk about is his promise to forward me the full FISH (genetic) report from my bone marrow biopsy back in 2019.

My Oura ring set me a rather low activity target for yesterday, but I beat it by three times over. Can't be bad..

1612/21 Omicron and light chains

Felt gradually better as yesterday went on and did jobs around the house for most of the morning. Didn't go out otherwise and consequently just missed my (large) activity target for the day.

Becoming increasingly concerned about the Omicron variant of COVID-19,despite being triple vaccinated and the appearance of two different drug treatments for the Clinically Extremely Vulnerable. As far as I can interpret the information I'm getting it is a lot less nasty then previous variants, and I think Boris is overplaying his hand in trying to get us to believe - on the basis of just one very ill-defined death - that it is just as dangerous in terms of hospitalisations and deaths as earlier forms of the plague.

Had a bit of a controversy on the Myeloma UK Support (facebook) group as to whether"free light chains" are the same thing as "serum free light chains" as far as blood test results are concerned. As far as I know they are. But one of the contributor said that her consultant had asked for both and that the phlebotomist who drew the blood  said they were different. If any of my blog readers know the difference I'd appreciate an explanatory comment!

15/12/21 Garage door, right thigh

 A pleasantly warm evening so went to Tower as planned. Also recovered the magnet that I dropped in the car park last time. Somebody picked it up and assumed it must have been mine. 

Before going out I had to do the bins and that involves sorting out the last fortnight's collection of cardboard (thanks, Amazon et al) ready tpu out alongside the green recycling bin. On opening one of the up-and-over garage doors from the inside to take the cardboard out, the latch mechanism on the door broke. That's at least the second time it's happened. The problem is that it includes quite a strong spring which, once liberated, can fire the actual latch piece quite some distance. It can land anywhere in the garage or even outside if it happens to bounce off something just right. I found the spring quickly enough but couldn't find the latch anywhere. Had to get a coupleof torches and enlist Sue's help - needless to say she found it in a couple of minutes. Maybe I should paint it bright yellow or something to make it easier to see.

Yesterday morning we went to Ongar for a walk,  coffee, ans a bit of shopping. On the way down the High Street I had a nast twinge at the outside top of my right hip. Nothing too unusual in that, but when we got home my "trapped nerve" in my right thigh was as bad as it's been for a long time, and I had a couple more twinges in the same spot. That's the first time in all the years I've had that problem that I've been able to link it with something else with 95% certainty. Anyway, made butter (both hard and spreadable) and that filled the afternoon.

Woke up this morning feeling distinctly not quite right. What I used to think of as "viral". Temperature is OK and I'v done aanothe Lateral Flow Test - negative as usual. Feeling a bit better already so I think it's just a matter of giving it a bit of time and not doing too much

14/12/21 A quiet patch

In a bit of a quiet patch at the moment - much the same as yesterday except Epping instead of Ongar. Played two matches, won one, lost one, and then as we were ten minutes or so short of the lunch break, played best of five ends and lost. Weather looks good for this evening so hoping to go to Tower later, and that'll be more than I've played for several weeks.

All fairly routine on the facebook myeloma support group that I (with several others) admin for. Plenty of activity but no particular pattern or posts that I've felt a need to dive in on. Apart,perhaps, from the man who replied to a post about fourth COVID injections with the unfortunate phrase "About the 4th shit..." I sent him a message and he edited. We also had a member application from an Egyptian "Counsellor" - very Arabic and Muslim, and including an interesting reference to his brain leaking out through his nose.

Application denied!

Less than a week now to my next consultation with my haematologist, and a little more than a week till the vampire nurses take the next lot of my blood. Fortunately I still seem to have enough of it left. So gradually moving into the tense and nervous stage of the month, and hoping that those paraprotein and free light chain numbers will stay where they are.

13/12/21 Ongar & Epping

It was pleasantly warm at Ongar boules yesterday morning. Played two games, won one, lost one. It was good to get out again after too long off in the cold. Should be OK for Epping later this morning, although the forecast is not quite as good.

I'm just in the middle of the waiting time for today's lateral flow test. Five minutes to go and looking good.

Negative again!

Nothing else to report this time. Everything myeloma-related is ticking over nicely.

12/12/21 Birchanger breakfast

Yesterday was the Birchanger Petanque Christmas Breakfast (actually more of a brunch, as it started at mid-day). Possibly something of a risk but nwe booked it weeks ago before Omicron arrived, it's a big room at the Sports and Social Club and well ventilated, and the seating was reasonably well-distanced.:

I'm the one with the white beard and the black-rimmed glasses on the left facing the camera, and I'll be treating myself to a Lateral Flow Test every day for a while just in case.

It was a risk to go but sometimes you have to balance one risk against another and calculate the possible cost against the benefit to social life and wider health. There's no easy answer but fingers are crossed for both of us.

It wasn't actually quite that "full" - only one egg and one sausage, but you get the general idea. Unfortunately no black pudding which is an essential ingredient IMO but we did get a fried slice, a hash brown, and mushrooms. IKt was fascinating watching the very French Herv sitting nearly opposite me shovelling the baked beans down with great enjoyment. Not very Gallic of him!

Nothing new about my myeloma this time. The finger splits are gradually healing and the only micro-rashes appearing are tiny ones on left fingers.   The scratch or whatever it is I reported last time isn't starting to heal yet.

The weather forecast for later this morning is much better than recently so I'm planning to go to Ongar  and to Epping on Monday. The USB hand warmers are on charge overnight. I've barely played for two or three weeks apart from that match at Wethersfield, so looking forward to getting out again.    

A small thing in the wider context but itv makes life a lot better. Not much more than a year ago my broadband speed was just 6 or 7 mbps. Then BT gave us Fibre to the Cabinet which took me up to 30mbps on a good day. Now we have Gigaclear Fibre to the Premises at a nominal 400mbps. A speed test a little while ago gave me Ping 4ms, download 251mbps and upload 245mbps, which is pretty typical . I haven't yet figured out why d/l is usually a bit faster than u/l - I's rather have it the other way round -                                                                                                                

11/12/21 Lateral Flow, and Omicron

Did Pill Organisation yesterday morning, despite feeling thoroughly off-colour and viral (not that virus!). Did a Lateral Flow Test, which turned out as negative as all the others. It'll be a real shock if and when one actually goes the other way. Otherwise,footled around in the house, beat my activity target, and felt much better by mid-afternoon tea. That's cats and people - temperature is too cold for feeding the fish now.

The Omicron variant of COVID is spreading like wildfire - it's obviously extremely transmissible. But it seems to be becoming clear that triple vaccination is a good defence against it, and that the results of infection are usually very mild (not that I'm planning on taking any chances). The virus is adapting to its host - it does COVID no good if it kills the people it infects. Darwinian evolution in action - viruses always reach an evolutionary equilibrium with their hosts. In biological matters you rarely go wrong by going back to Charlie D.

Nothing else new apart from breakfast later this morning. More about that in the next update.

10/12/21 Brownies, scratches

Did the "short walk" in Admiral's Park to the Cafe by the lake for coffees and half a chocolate brownie. That got me up to over twice my activity target. Otherwise, nothing out of the ordinary except getting the carpet shampoo machine out for the cats' room and the well-worn bits of the lounge and dining room. Took me a while to work out / remember how to put it together and make it work....

Hands, esp.the right one, still have far too many splits in finger ends and knuckles. Gloves and hand cream again tonight!

And... something new. This:

has appeared on my right upper arm. Found it in the shower an hour or so ago. It's about 8cm long. Probably a coincidence that it's the arm I had the B12 shot in a couple of days ago. I have another couple of similar but smaller things in other places including just above left ankle. Easy to explain this kind of thing as cat scratches or gardening incidents, but I really can't do it this time. Self-scratching, possibly unconsciously? Again it could be, but I don't think so. The next stage of the mini-rashes? BTW there are a couple more of those very small ones on various fingers as well, mainly left hand.

Apologies for the poor focus. It's not easy taking photos of your dominant arm with the non-dominant one. Now just wondering whether to forward this photo to Dr.Ch so he can forward it to the hypothetical dermatologist, if and when we know wo he is.

New Freeview recorder arrived from Amazon. Easy setup and working fine. Interface is a bit different from the old one but I'll get used to it. Not least because it's a lot faster.

09/12/21 B12, fatigue, hand cream

Brighter and a little warmer yesterday, but still not very pleasant out. Went to the doctors in the morning for my twelve-weekly B 12 injection. No reaction, as usual. The nurse hinted that they may be moving towards DIY B12 shots before long - no problem to me as I did my own two or three times during the first lockdown. I have no fear of self-injection now,after that and the GCSF injections into the stomach before stem cell harvesting.

Picked up a sandwich for lunch from M&S, got home,  had the lunch (half of the pack of chicken & bacon, a few nuts, and a clementine) and of course fell asleep. Stamina is not good these days, fatigue is always there waiting to strike. The thing is to keep going once I've started to be active, don't give it a chance.

Stayed in the rest of the day apart from a couple of unavoidable trips to the garage etc.. As a result, only hit about 75% of my rather larger than usual activity target.

I tried changing the batteries in the Freeview recorder's remote control in the hope that  it might miraculously come back to life and behave properly. No luck. There's a new one coming from Amazon later today or tomorrow.

Well, we're into COVID Plan B and the government is going into probably an unnecessary panic over Omicron.  It's not going to make  a huge difference to me on a personal level but as always I fear for the economy. And I'm glad we both had Pfizer for all three vaccinations so far.

Finger splits and etc. still bad on my right hand and not very good on my left. The precautions I've been taking haven't been good enough to keep them away altogether.I can't think what would, except lots more hand cream and wearing gloves all the time, inside or out. Maybe I should look for some that work with touchscreens. In the meantime, cotton gloves and plenty of O'Keefe's Working Hands tonight. Or maybe something else, I have plenty to choose from.

08/12/21 Ashes, Freeview recorder

Writing this while listening to the first day of the Ashes. England on 13/3, which does not make me very happy. Two ducks from the top four...

My Freeview recorder box appears to be about to die the real death. They never seem to last for more than about three years. I don't too much mind getting a new one, but it's all the archived recordings that will be lost. I've never yet found a way of saving them to an external drive or a new recorder.

One of those days...

Wet, cold, and windy again. Went to Ongar for a little Christmas shopping (easier to stay out of Chelmsford at this time of year), otherwise stayed in. No boules at Tower, far too wet etc.. I think I've finished for this winter now, unless we get a warm February like we've had several times recently.

Off to the GP surgery later this morning for my 12-weekly B12 shot. 

No more mini-rashes but a lot of little lesions on both hands making the fingers stiff and uncomfortable. Well, today looks like another day in and plenty of hand cream...

07/12/21 November bloods

November blood test results came through yesterday - all good. Paraproteins still at zero, all three free light chain numbers in normal range, kidney & liver functions all OK. And the new Haemoglobin A1c test (which gives a picture of blood glucose over three months or so rather than instantaneously like any finger-prick BSL test) puts me comfortably within the OK zone - so no question of the dex raising blood sugar to potentially diabetic levels.

Just as the finger split on my right thumb is starting to heal nicely, I've got a new one coming on side of right middle finger...

Possibly a new micro-rash near the base of my left thumbnail. Only 1 or 2mm across and hardly enough to impress a dermatologist, if and when I ever get to see one.

I pulled out of boules at Epping partly because of the weather forecast (cold, wet) and partly because I felt I needed a day to recover from Wethersfield. I just don't have the resources and the stamina to shrug something like that off without giving myself time to get back to square one. Too much goes into keeping the myeloma at bay, and I don't intend to give it a chance to come back. That's not very scientifically defensible, but it's my body and I know what it's telling me. Or I think I do.

Anyway, another day at home. Spent some of the morning replacing the timer-operated LED lamp in the side passage - a trickier job than it might sound and particularly annoying as the last one lasted only a few months. Getting cold fingers doing that is probably what's set off that new finger split, even though I was as careful as possible to keep my hands from getting too cold. But there are some things you just can't do with gloves on.

It seems that a red ribbon is a recognised symbol for myeloma. Well, I've had it for over two years and I didn't know, but...

06/12/21 Wethersfield, Belle

Yesterday morning played for Tower 5 in the Essex & Herts Winter League at Wethersfield. The terrain there is  shallow layer of  pea shingle over a hard base and it was very wet - result: very little roll and difficult ro get length right. Nevertheless, on a cold, wet, rainy,and windy morning we won by a very satisfactory 13-6 and 13-1. Towards the later part of the second game I was getting rather uncomfortable with the weather and dreading a return of the strange phenomenon on a similar evening at Tower a few weeks ago. No sign of it yet, but I haven't been to bed yet either. I don't need another night like that one!

No more Winter League matches until March, we take Jan & Feb off.

Nothing new on the myeloma front. No mini-rashes have appeared for several days, the finger splits are under control and the right thumb one has now moved into the healing phase - I hope, and as long as I can avoid opening it up again.

Finally, and in the interests of feline equality, here's a shot of Belle (our other rescue ncat) that Sue posted on Facebook. She's very good at using that trick of raising one front paw in the air to get attention, and she has the most wonderful eyes...

05/12/21 Lagevrio aka Molnupiravir

When I started this blog my intention was to write an update every one or two days and a little over two years later I've stuck to that pretty well. I haven't missed many days, although sometimes it's been a struggle to come up with something. Today there's nothing I haven't written about before (probably too many times) except something from the Telegraph, even if it is primarily about covid but the myeloma relevance is there:

"The first at-home treatment for Covid is to be offered to patients by Christmas as ministers roll out the antiviral pill to help protect the most vulnerable from the omicron variant.

Sajid Javid, the Health Secretary, is preparing to announce the start of a national pilot of Lagevrio, also known as Molnupiravir – the "game-changing" pill that Britain became the first country to license last month.

Under the plans, the NHS is expected to deliver courses of the tablet to clinically vulnerable and immunosuppressed patients within as little as 48 hours of them testing positive for Covid."

Good news indeed. That gets us halfway towards my criterion of two effective treatments before I think about returning to live music.

04/12/21 Pills, Blue

The foot is 100% back o normal now - I can do the Achilles exercise without a trace of a problem. To compensate for that, the right thumb split is now at its most painful stage...

Did Pill Organisation in the morning, so as to be free of it over the weekend:

Pity about the flash reflections, but every compartment is used. The red box has the cancer meds and supporting pills, the green one has various supplements, and the blue one has non-cancer meds. I've been using the system for over two years, and it works for me.

A bit warmer than the last few days so in the afternoon I ventured out to Ongar for a bit of practice ahead of the Winter League match on Sunday morning (weather permitting), but nobody else was there, the piste was very wet, and it started to rain. So I got my lunch from Tesco over the road and went home again.

Nothing new about myeloma except an invitation to another research study. Not sure this one is quite right for me but I think I'll apply anyway.

Here - just because I like it - is a photo of our blue (i.e. grey) rescue cat Blue fast asleep on my chair downstairs, turned into black & white:

03/12/21 Cold....

The foot is 99% ok now - the best test is an exercise I used to do after my Achilles tendon operation. Ankle fully flexed, rotate foot clockwise. I'm still getting a tiny trace of pain in the arc between 5 or 10 past the imaginary hour and about twenty-five to. When the pain is bad - forget it!  We'll see how it behaves in the morning.

It was another very cold day yesterday, temperature not getting more than a degree or two above zero. I stayed in all day but still somehow managed to beat my activity target quite comfortably. Didn't fall asleep too much either. I didn't go to Birchanger boules because it was too cold for me as well as too far to travel for what would probably have been just one game.

No new mini-rashes have appeared for a week or so - unless they now move so fast that I miss them...

Still awaiting contact from the respiratory man (for my CPAP machine, due sometime this month) and from the dermatologists at Broomfield.

Otherwise, things keep ticking over as usual during this period of remission, long may it last. There are downsides - the fatigue and my general physical slowness and lack of stamina - but I'll happily take them instead of the alternative.

02/12/21 Foot again

I don't understand this right foot pain. It had faded away completely by early afternoon yesterday and it didn't trouble me at all overnight. But as soon as I got up it appeared again, even if only at 10% of its worst. Still just a trace of it left mid-afternoon. Doesn't make any sense at all.

01/12/21 (2) Panic over, and bad night

We've been told today that the musician who had the positive Lateral Flow Test result has since had a negative PCR result, and so has his family.. So it looks as if the LFT was a false positive, and we return to our normal level of precautions. Still, just thinking it all through was a valuable exercise in preparation for nest time. If there is a next time.

Went to bed about 03:00 (after falling asleep in my study again), and then the old familiar and excruciating pain in my right foot started up, and it kept going until somewhat after 09:00 when it began to fade. Possibly a liberal application of Ibuleve in the morning helped. Sleep very disrupted!

I don't know what causes this but suspicion must lie with the shoes I was wearing during that long Ongar walk. They're extra-wide, high instep, and have three velcro straps instead of laces - IOW  they should be ideal for me.but this is at least the second or third time I've  had trouble after wearing them - and by far the worst                                   

01/12/21 Ongar, positive COVID test (not mine!)

Took my car into the local garage yesterday morning for minor bodywork repairs and a check-up underneath after a few bad pothole incidents and my attempt at kerb-climbing. Then (in Sue's car) we went to Ongar for a walk, some lunch, and a bit of shopping. The walk got me to very nearly double my Activity Target, so that goes a little way to making up for the last couple of lazy days.

We got rid of the bottles of Camp Coffee by leaving them in the "food bank" at the entrance to the church - a fine old one with some parts dating back to the 11th  century:

Hope someone enjoys the "coffee".

All that walking up and down Ongar High Street plus a couple of diversions left me thoroughly exhausted when we got home - spent too much time asleep again, both before dinner and after. As usual of course, now we'/re into the small hours, I'm feeling more awake than I have done all day. The curse of my life - I really should have picked a career where working hours fitted me better.

And now for the bad news. Sue went to a wind band gathering last Sunday, The organisers took all reasonable precautions about Lateral Flow tests beforehand and etc. . However, one of the attendees has since tested positive, and Sue was sitting not all that far away from him at the lunch interval. We await developments with some trepidation (on my part at least). He will be doing a PCR test, and Sue will be doing LFTs daily. I will be doing my best - insofar as it is possible while living in the same house - to keep well out of her way and to keep my distance. I don't want to, but I have to regard her as a potential source of infection for a week or so. Of course I have my good result from the antibody test a week or two ago to rely on - it suggests that I have enough antibodies to fight off a modest infection - but nobody really knows how long those antibodies hang around in the bloodstream ready to go. So it's going to be a nervous week or so with daily LFTs for both of us, I think. 

30/11/21 Pothole repairs

Another quiet (and cold) day - didn't do much except go out to M&S to get an Indian meal for myself as Sue was out for lunch and didn't need an evening meal. Nevertheless, somehow met my Activity Target. 

The car goes into the local garage later this morning for a couple of minor bodywork jobs and to check out tracking etc. underneath after potholes and unintentional kerb-climbing. That means no boules at Tower, even if the temperature is as much improved as forecast. OTOH, it'll be a good day for another Furosemide. And that's about it for tonight.

29/11/21

Nothing much new tonight. I'm cancelling all my boules while the temperatures remain around freezing, I need time for my hands to recover. Here's the right one:

Lots of little lesions that can be quite painful and also make the fingers rather stiff. Cotton gloves and lots of hand cream again tonight. That means I leave the Oura Ring off overnight, otherwise it gets clagged up with O'Keefe's Working Hands and needs to be cleaned up afterwards. No real problem but it probably wouldn't get good readings and I have other sensors monitoring sleep patterns so an occasional night off is no big problem.

The main thing is to be OK for the next Winter League match at Wethersfield on Sunday 5th December. Because that's a team I have to be there if at all possible.

Didn't take a Furosemide yesterday, and no sign of the weight loss returning yet. I can have one for the next few mornings if needed as I won't have boules trips to take into account.

Used the time gained  to prep an 8-hour slow cooker meal for the evening - chicken thighs in red wine - and to do some work on the phone system as we move to VoIP - I need a rather unusual cable or an RJ45 gender changer which isn't easy to find at a reasonable price. One step at a time, there's quite a lot of trial and error needed here.

That's all for now. Back to my recording of Doctor Who...

27/11/21 (2) Zometa

Another wet cold and damp day, made worse by a viciously cutting wind. After breakfast at The Hare we really did intend a short bracing walk in Tower Gardens, but just the short distance from the door to the car was enough for a change of mind. So still a bit short of my Activity Target for the day.

No lunch, venison burgers with sweet potato mash for dinner.

Hands & splits improving after a day almost entirely out of the cold. Took a Furosemide when we got back from breakfast, and ankle oedema looks good pre-shower.

Several posts on the facebook group about people having regular Zometa (usually at 12-week intervals) well beyond two years. This goes against my understanding that there is little if anything to be gained by going beyond 24/2yrs. There's no obvious pattern to the replies to my question, all you can say is that different consultants take different views.

Forecast is bad for the morning so will probably sacrifice Ongar Boules in favour of getting a couple of long-delayed jobs done in the house while Sue is off at a wind band day. Monday at Epping will have to go as well because the car will be in the garage after a couple of bad pothole thumps and my ill-advised attempt to drive straight over a kerb in Ongar Sainsbury car park.It was where I thought it wasn't... The car needs a check that all is OK underneath  at the front, and there are a couple of very minor paintwork issues to deal with. There's also some light snow forecast for Monday...

27/11/21 The Hare, Camp Coffee

 A grey, damp, drizzly November day yesterday with the temperature only reaching two or three degrees above zero. I went out in the morning to collect two prescriptions, one for me and one for one of the cats with chronic cystitis. Got home sand took a Furosemide with the usual Niagara-like results after an hour or two. I'm hoping for a better weight reading later as I'm sure I've had a bit too much fluid retention recently.

Planning on going out for breakfast later, probably to The Hare where I expect to have an Eggs Benedict with an added local Garnett's sausage. And no lunch...

I think that photo must have been taken a few years ago during the refurbishment, as there are no cars and no markings in the car park.

Did Pill Organisation last night so as to be ready to take the morning pills out with me. The various finger/thumb splits didn't help with that...

Tesco's delivery inexplicably included two bottles of Camp Coffee. I was surprised that the stuff still exists, and that there may be be somebody not too far from here who gets through two bottles a week. However, pleased to see that the old Empire artwork is still on the bottles, if rather smaller than I remember, and rather more "equal".

Sue 'phoned Tesco to find out what to do with these unwanted bottles, and the answer is that they don't want them back and we could donate to a food bank or similar.

Very sleepy again all day yesterday - possibly no coincidence  that it was the first day back on Lenalidomide after the week off?

26/11/21 Springfield, Zometa

Went to Springfield yesterday morning for the vampire nurses to take more bloods and do my Zometa drip. As usual, pleased to report no side-effects. Also had lunch of egg mayo and salad sandwiches and a pot of tea:

Got home a bit late to take a Furosemide. Evening temperatures down to almost freezing, so emailed Ken at Birchanger and told him it was too cold for me to go out (especially with my hands in such a bad way as they are at the moment). He replied "Wise decision". 

It's U3A boules at Ongar later this morning but the forecast is bad (rain and cold) so the chances are that I'll stay at home instead. At least that will give plenty of time for a breakfast Furosemide to work.

I've just started Cycle 20 of the current regime, with the first Lenalidomide for a week. So now the anxious wait for the next set of blood results begins....

24/11/21 RUDY, FGFR3, finger splits

Did my RUDY (Rare Diseases Study) blood samples day before yesterday at the Chelmsford Central Health Hub. A bit more waiting time than on the last couple of occasions, plus the usual referral from a junior phlebotomist up to a senior one even though it's the third RUDY one I've done there, they're familiar with the paperwork and the procedure etc.. The main thing they were concerned about was whether I would post the completed and sealed package or whether they were supposed to do it. I do it as always. Anyway, they had to use both arms to get enough blood out. Something went wrong with the left one after three blood tubes, so over to the other side for the fourth one.

Attended a Parish Council meeting yesterday in person - first time  for quite a while. Updated everybody on the myeloma, wore a facemask and sat up the far end of the table. Most of the others used masks. And I feel OK today, so far... 

A bit of a memory-refresher for me on that FGFR3 gene and its location at 4p16. 4 means chromosome 4, p means the short arm (from French 'petit', believe it or not),  and 16 refers to band 16. The gene itself - of which half of my plasma cells appear to have three copies not the customary two, is  "Fibroblast Growth Factor Receptor Three" and it's responsible for making a protein crucial to production of connective tissues and extracellular structures in general - including bone.  Also known as CD333.

We went to Oaklands Park for a shortish walk intended to be followed by a light lunch at M&S in the Clock Tower  Retail Park. But the cafe is temporarily closed in favour of more retail space over Christmas and New Year, so we ended up at Costa for a toasted sandwich instead.

Costa is just out of sight on the right. Exciting, isn't it? The glories of C21 Chelmsford. Actually, it's rather useful for us to have that M&S Food Store on our side of the city.

Bad news on the finger split front, and on the general condition of my hands. My fault, I think - when I came back from boules at Epping on Monday afternoon Sue was doing some gardening at the front and, wanting to show willing to play my part, I grabbed a pair of secateurs and started to work - all with bare hands in cold weather. It was only for fifteen minutes or so, but enough to do the damage. Stupid, stupid - all this trouble for the want of a moment or two to put some gloves on.  Well, it's a lesson learned, although I knew it anyway. Don't be such a fool again!

Tonight, cotton gloves and half a pint of hand cream. Well not quite, but that's the general idea.