Tuesday 30 November 2021

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.

Monday 29 November 2021

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...

Saturday 27 November 2021

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?

Friday 26 November 2021

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....



Thursday 25 November 2021

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.

Wednesday 24 November 2021

24/11/21 Trisomy of FGFR3

For some reason I don't understand my haematologist Dr.Ch has been reluctant to divulge the full details of the  genetic analysis of my myeloma (mutant plasma cells) from the bone marrow biopsy back in 2019. But I now have a letter confirming that the FISH (Fluorescent In-Situ Hybridisation, IIRC) revealed trisomy of the FGFR3 gene on the short arm of chromosome 4 in 50% of the plasma cells examined. More about this later, but it actually feels rather good to have a genetic basis of my disease confirmed.

Here's the relevant bit (4p16)on the left hand end:







and here's human chromosome 4 in all its glory:



Tuesday 23 November 2021

23/11/21 Consultation, and the Suffolk game

Face-to-face consultation with Dr.Ch at Springfield yesterday morning. Pleasant conversation but not a whole lot new except that he's taking up my unofficial medical adviser's suggestion of adding a Haemoglobin A1c test to the bloods due to be taken on Thursday. Steroids such as dex can kick the blood glucose up into Type 2 diabetes territory and although I do occasional tests the best they can offer is a snapshot of that particular moment. The advantage of the new  test is that it gives an overall figure for the previous three months or so. Not that I have any real suspicion that I'm turning diabetic, but definitely best to keep an eye on the possibility for as long as I'm on the dex. And as far as I can see, that's not going to stop any time soon.










Went straight from Springfield to Hanbury Gardens for the afternoon session and after finishing off one game got introduced to a variant known as "the Suffolk game" for three players. It involves using two coches, both thrown together from the same hand, and you can play for whichever one you want. It's an interesting and very tactical variation, but not too easy to work out the correct order of play...



Monday 22 November 2021

22/11/21 Next consultation

Face-to-face consultation with Dr.Ch at Springfield 11:00 - not much to talk about except the mini-rashes / vasculitis (again) and I'm expecting him to confirm the next Zometa on Thursday when I pick up the next bag of meds. They'll also take bloods so that will start off the whole nervous week again waiting for the results.

Decent boules at Ongar yesterday morning - played two, won one, lost one. Significantly colder and almost everyone wearing gloves. Mine kept the nasties away again. Will go to Epping tomorrow for the afternoon, after I'm finished at Springfield. Won't be able to do Tower on Tuesday evening because a Parish Council meeting clashes. I've decided it's time I went to a live one again - facemask, sit away from the others at the end of the table, insist on an open window, etc..

Nothing else new tonight, except this photo of a near-new moon taken through the landing window with double-glazing reflections and just a hint of the farm reservoir at the bottom. I think it looks better in b&w than in natural colour - what little of it there was pre-dawn:



Sunday 21 November 2021

21/11/21 COVID Pass

For the start, an interestingly quasi-palindromic date. It works if you read it but not if you take it character by character.

Did the pills this morning and managed to make a bit of a mess of them so had to re-do Saturday and Sunday later.

Not much except computer stuff in the morning but went out for a local walk to the post and back in the afternoon and that got me to my Activity Target. Did it with stick only,no walker. 1.32 miles, 3315 steps, and 193.6Kcals according to the GPS tracker in my pedometer app. For once I remembered to set it before I started.

It's good that my Primary 3 third vaccination now appears in my NHS record, and that I've received my "COVID Pass" NHS letter - even though that only includes the first two vaccinations!














Weight is likely to be up a bit in the morning because I had an attack of the "dex munchies" yesterday - constantly hungry and too many biscuits etc..Hope it's better today.

Saturday 20 November 2021

20/11/21 Autumn leaves

I had a domestic day yesterday - cleaned out the inside of the car, particularly in the boot where the walkers deposit lots of mud and general earthy rubbish. It now looks fine and will stay that way until the next time I go out...

Then swept up and disposed of the fallen leaves around the maple in the front garden - some into our compost and the rest into the green garden waste bin. We had a light(ish) lunch of cheese biscuits and a clementine and I didn't fall asleep too much in the afternoon. Fatigue has, I think, been a little bit better over the last few days.














Apologies for the window reflections, and you can also see the effect of the recent hedging people on that hedge. Looks a bit rough at the moment but will be fine once the new growth appears in the spring, and will be a lot easier to maintain in the future.

The right wrist mini-rash has 99% faded away now but a new one has appeared halfway up right forearm. About 3mm x 5mm, and still in the angry-looking red phase.

Nothing else new.

Friday 19 November 2021

19/11/21 King's Head, Birchanger

Went to Ongar for some shopping and a shortish walk followed by lunch at the King's Head. They used to do a superb Scotch egg with prosciutto and sage which we both fancied but the menu has changed and now it's with chorizo and sundried tomato sauce. Not that either of us could taste any chorizo. The egg was medium hard, not oozy at all, and the outside was blackened - obviously too long in the fryer. We should have sent them back to try again, but who wants that extra wait while they do it?

Most of my cappuccino - delivered by a pleasant young waitress doing her best - arrived in the saucer rather than in the cup, but my dessert of apple and berry crumble was the best part of the meal. I ordered it with vanilla ice-cream rather than salted caramel. I just don't see the point of that -why add to my salt and sugar intake in return for no particular pleasure?

Good boules at Birchanger in the evening,even though my side lost a close match by just one point. Here's the GPS tracker of the evening from my pedometer app:















Everything else as normal - the mini-rash has nearly faded completely, and the right hand finger and thumb - both with splits that are neither fully formed or healed - are staying about the same thanks to the heated gloves. Nevertheless, hands and fingers are a bit dry and scaly so I think I'll do the massive hand cream and cotton gloves thing tonight.

No boules scheduled for later today. Instead, cleaning out the back of the car and tidying up fallen leaves in the garden - if I have the stamina for both. We'll see.

Thursday 18 November 2021

18/11/21 Shower, eggs

More about the shower: Once I was reasonably awake I was going through guarantees and orders and trying to find invisible product codes and serial numbers (all needed to summon up a Mira service man) not to mention hanging on the 'phone waiting for a human to answer, when Sue had a blast of inspiration downstairs. Strange noise from outside the bathroom window. Turned out that somebody (not me) had left the outside tap turned on. There's a hose from that to a distributor block, and one of the hoses connected to that had blown off with the unrelieved pressure, and therefore mains pressure water was flooding out, resulting in low pressure and flow in the house - low enough for the very sensible shower to turn its heating element off. All now restored to normal, but all that rushing around in the morning knocked me out until lunchtime. And that's the myeloma relevance - I just don't have the stamina to take those sorts of things in my stride any more.

Woke up in time to scramble a couple of eggs for lunch (and to poach one for Sue) before heading for Ongar for a little light practice. I was rubbish but it got me very close to my activity target. And I completely forgot that I should have been on a MyelomaUK Zoom meeting...



Wednesday 17 November 2021

16/11/21 (2) Dreaming, shower

Rather a strange night. After falling asleep in my chair in my study (not unusual these days) I went to bed a little after 03:00 and was sure I had a badly interrupted and sleepless night until  got up at about 08:00. But the various sensors that now monitor my sleep are all agreed that there were only a few small interruptions and it was basically a good night. So I've been dreaming that I've been awake and not dreaming...

The double senna worked, and now about to go for a walk in Central Park.

(LATER) Had a good walk in the park, and I followed it up with a local walk for Parish Council purposes - more dog waste on the pavements so looking for good sites for some more posters, and clearing overgrowing vegetation which is hiding our 40mph sign. Unfortunately I couldn't reach high enough with just a pair of secateurs so will have to go back with something longer.

Hard rain in the evening so I abandoned the usual Tuesday evening boules at Tower in favour of  staying at home and watching the Bake Off semi-final. Needless to say, I slept through most of it. I think two walks in one day took a bit too much out of me. It's not so much the exercise itself but the energy needed to get the second one going. I found it really hard work coming back home, which means I was more drained than I thought.

And then my thermostatic electric shower failed. I think the heating element must have blown. Wasted the best part of an hour trying to book a repair online, will have to 'phone later in the morning.



Tuesday 16 November 2021

16/11/21 Not a lot to report

Not much tio report this morning. The mini-rash on my right wrist is unchanged, or possibly just a little smaller. Finger splits are being kept at bay by the heated gloves - definitely worth the three-figure price as long as they last well. Undistinguished boules at Epping - played three games, lost all three. For some reason not on my best form.

Constipation starting to build up again - took double Senna last night and will move on to Fybogel if that doesn't work.

Got home a bit late for a Furosemide yesterday but today is clear up till 19:20 when I should leave for Tower Petanque, so plenty of time for one to work through the system if I add it to the breakfast pills. The post-shower ankle oedema is still quite noticeable but still not bad enough to interfere with shoes etc..

Interesting to watch part of some Netflix show Sue was watching where a woman was diagnosed with breast cancer after finding a lump and was thrown into a rather brutal diagnosis which moved from "Yes it's cancer" to "We're booking you in for a double mastectomy"  in not time at all. Always interesting to me to see how people handle the unwelcome news, but but I thought this was rather unrealistic. There's only so much anyone can deal with at one time.

Monday 15 November 2021

15/11/21 Furosemide, weight, sous-vide

Not much change in that new mini-rash - following the typical pattern so far. Post-shower ankle oedema  a bit better after I took a Furosemide at lunchtime. May repeat the dose tomorrow depending on what time I get back from Epping boules. Wasn't too sleepy yesterday, which is an improvement, and weight loss is good - yesterday morning was down to 93.9kg and should be better later.
















Did sous-vide fillet steaks last night. It's a lot more to do than just throwing them under the grill, but the results are worth it. Here's the prep all done, steaks bagged up with home-grown rosemary and home-made butter:



Sunday 14 November 2021

14/11/21 Great Notley

Several posts on the facebook group yesterday (including one from me) on the same theme: although we tend to take paraprotein numbers followed by the light chain ratio and absolute numbers as the main indicators of myeloma activity, that's not the full story. There are the "non-secretory" forms of the disease and it can still be affecting bone structure and lytic lesions even if those indicators are all good. It's a tricky little b****r of a disease.

On that theme, another mini-rash has appeared on my right wrist - close to the position of the earlier ones but a cm or two further round. This one's about 3mm diameter and at the dark red stage. I suppose it's possible these rashes may be caused by some aspect of the myeloma (triggering vasculitis?) rather than a side-effect of the treatment. I think I have some reading up to do about that possibility.

Post-shower ankle oedema is quite marked tonight. I'd take a Furosemide before breakfast, but I have boules (Ongar) at 10:00. Maybe with the lunchtime pills when I get back.#

The weight gain produced by two birthday meals out seems to have worked itself out - I'm back to 94.8kg out of the shower, to be set against 95.3 yesterday morning. So I'm expecting a good number later this morning.

We went to Great Notley Country Park for a decent walk - something we both felt a need for after a few lazy days. My pedometer app reported:



Saturday 13 November 2021

13/11/21 Olio

A slightly less sleepy day yesterday. Should have been U2A Boules at Ongar, but too wet.even for a practice, and much of the piste was several layers deep in fallen autumn leaves.

No new mini-rashes and all the old ones have healed nicely. No other side-effects of either len or dex to report - I'm doing rather well compared to the experiences of on that pair but there's no doubt that they do slow me down and take quite a toll on the resources. They're not just pills you can take and then carry on as normal.

In the evening we went to Olio in Writtle (Italian restaurant) for a late birthday dinner. I had a dish (Lunnette al Tartufo) which I had as a takeaway during lockdown - possibly the best pasta dish I've ever eaten. Inevitably last night's version, although good, fell a long way short of that level. Moral: Never Go Back!

Sue took this photo as the waiters finished singing me a surprise "Happy Birthday". The effort was appreciated, but not too many fine Neopolitan tenors among them...



Friday 12 November 2021

12/11/21 Len & Dex

Another decent night's sleep followed by a rather dozy day. This sleepiness is getting rather more than I'm happy about, even though it can be explained by len & dex on the one hand and sleep apnoea on the other. Just waiting for that CPAP machine...

Was way behind my activity target at dinner but made up for it with boules at Birchanger. I'm still surprised by how much distance you cover with all that walking up and down the piste. Played one game with the very French Herve against a couple of good Birchanger regulars and won 13-3. The sand was slightly damp and very sticky, most frustrating having to wipe the balls down after every end. The USB handwarmer and heated gloves are doing a good job of stopping the splits from getting any worse but they haven't yet been challenged by any really cold weather.

A couple of interesting posts on the facebook group about people having trouble with Len & Dex, particularly including fatigue and daytime sleepiness. Good to know that other people have similar problems,although their len/dex issues are often much worse than mine, and to be reminded that both are potent drugs which are going to have an impact...

No mini-rashes today, finger and thumb splits are there but not getting any worse.

Thursday 11 November 2021

11/10/21 Birthday, breakfast

I usually write blog posts in the early hours of the morning, so the content applies to the day before the date in the title. Confusing, isn't it? The point is that yesterday was my 73rd birthday.Significance? Not a lot except that I suppose it marks a signpost on the road to being too old to be considered for a stem cell transplant. I've got maybe one or two of those left before that door closes - not that I expect a transplant now anyway, I think my road will be a different one.
















Yesterday,  after taking one of our cats to the vet (4-week antibiotic injection for recurrent cystitis) we went to the MT2 Cafe for an excellent breakfast. I had Eggs Benedict plus a local sausage, black pudding, and a few other things from Sue's Full English. No lunch after that, and rather a lot of sleeping it off during the afternoon. Result: I fell slightly short of my Activity Target. But will make that up with boules at Birchanger later today.




Wednesday 10 November 2021

10/11/21

Slept badly last night with several interruptions (as confirmed by the under-mattress sleep monitor) and had a very tired sleepy morning and afternoon despite all the excitement of having some tree specialists in to do a large-scale cutback of all the various hedges etc. that have been gradually taking over for years. They've done a lot today but will be back tomorrow afternoon to finish the job.

That thing on my left forearm now appears to be forming a scab. Not sure if it's a mini-rash or something else altogether. And that other thing at bottom left might just be one. It's all very unclear at the moment:












Played boules at Tower in the evening - two doubles games, won one, lost the other. Several people intrigued by my heated gloves. But I was embarrassingly slow with my balance being far from its best and the old trapped nerve in my right thigh blasting away at full power. I needed to use my stick to get over the piste edges safely and found myself juggling stick, magnet-on-a-string, and three boules all at the same time. Harder than it sounds. I get these short spells of poor balance - or perhaps of lack of confidence in my balance - every few months and they usually last for just two or three days.  And on top of that I think I've lost a magnet.




Tuesday 9 November 2021

09/11/21 Mini-rash?

 I'm a little concerned about this mini-rash or whatever it is on my left forearm:













It looks OK to the naked eye but the photos reveal a gash with some skin breakdown, which I haven't seen in the others. It also seems to be taking a little longer to fade away. Keeping a careful eye and will keep the photo for the dermatologist. Needless to say,I've heard nothing yet about an appointment date.

Nothing much else for yesterday. Played boules at Epping in the afternoon - a few good balls and too much rubbish. Still waiting to hear from the respiratory man about an appointment or CPAP machine arrival.

The hand cream and cotton gloves thing worked quite well last night and helped to clear various splits and scratches and etc, off both hands, right in particular. But, as I expected, the gloves made the overnight O2 sensor  and the Oura ring impossible. So I'm going for alternate nights and will put the O2 sensor and my Oura ring on tonight.

Monday 8 November 2021

08/11/21 Handwarmers and mini-rashes

Slept well last night despite the dex. However, and despite my best precautions, finger and thumb splits are back and that means I'll have to go back to sleeping with lots of hand cream and cotton gloves. That in turn means no Oura ring and probably no O2 sensor - will find out tonight if that will still work over the top of a gloved finger - I suspect not. 

Played for Tower in the Herts & Essex Winter League yesterday. Got there for 10:00 start and left at 15:30. Main lesson learned is that neither the USB handwarmer nor the heated gloves last that long - I was without both for at least the last hour and a half. I've got a pack of chemical ones as well and must keep a few of those in the car as spares and top-ups.

As for those micro-rashes, I now have several on the left hand and one big enough to be called a mini-rash on inside left forearm.:














Here are some shots from the Earl's Colne piste  yesterday. It was quite crowded.























Here's a little video from the match. This is how I get most of my daily exercise...


I had to make it quite low-resolution because of the file size limitations here.


Saturday 6 November 2021

06/11/21 (2) Hands

Did Pill Organisation this morning (still took me the best part of an hour). Much better to have it back on a Saturday morning.

Backs of both hands in a bit of a mess today, and I don't know why.













That larger thing on my little finger might well be a micro-rash, even though it's no more than 2mm across.


My right hand is a bit of a mess - no idea where all those spots,lesions, abrasions, whatever they are - I don't know where they came from. No bigger ones anywhere else that I can see.                                 

















I've even got one on my nose.....
















Ankle oedema is still there, but just short of the level that makes me reach for the Furosemide. I've got some 40mg in stock, just in case.

06/11/21 October bloods, dermatology

The October blood test results came through yesterday - #33 and counting - and the good news is that paraproteins are still at zero, free light chains are all within normal range, and everything else is either normal or close enough not to worry about.

Went to Ongar in the afternoon for a little gentle practice to test my right arm out. It's OK, just about, and I'm reasonably certain that after another day's rest I'll be fine for the Winter League game on Sunday morning. Playing a match is less intensive than practice as you have to wait for everyone else to take their turn.

MyelomaUK has produced a document and a letter addressing the never-ending problem of confusion over the third COVID vaccine - Primary 3 or Booster or what? Unfortunately it isn't as well-written as it might  be and probably does as much to increase confusion as to resolve it. By strange coincidence they also sent me a document about MGUS to review and check for readability...

Finished the  RUDY questionnaires that I have to do every six months for the PREPARE study. It seemed much harder to get through this time, and I'm far from sure about some of my answers.

I had a letter from the NHS about my dermatology referral for these mini-rashes that might be vasculitis (and suggestive of more serious blood vessel inflammation internally), or a harmless side-effect of lenalidomide, or almost anything. I was offered a choice of five hospitals to make an appointment - every one of them said "There are currently no appointments available for you to select at this clinic".

NHS admin triumphs again!

So, as suggested, I've sent an appointment request to Broomfield. Now we wait for something to happen. And wait. And wait some more...

Friday 5 November 2021

05/11/21 Antibodies again, and senna

I asked Superdrug if they could give me more detail on the antibody test result, beyond just ">0.8U/ml" which appears to be the threshold between a negative and a positive result, and this came back:

-------------------------------------------------------------------

Dear Mr Crisp,

Thanks for contacting us. 

Your spike protein antibody level is:

Outcomes
COVID-19 SEROLOGY.
Roche Anti-SARS-CoV-2-S Result1322.0 U/mL
Anti-SARS-CoV-2-S QualitativePOSITIVE
< 0.8 U/mL Negative
>= 0.8 U/mL Positive
Clinical CommentSARS-CoV-2-S Total Ab Positive
Consistent with either SARS-CoV-2 infection or
immunisation at some time.
Methodology: Roche ECLIA

This is as reported by our lab using the Roche Elecsys® Anti-SARS-CoV-2 S test. 

There is, as yet, no international standard for antibody levels, and therefore your value is not comparable to any other test result. The units and measuring criteria Roche use are for their analysis alone. And because this is a new and emerging field with limited data, we are unable to say whether your level is high or low, or how much immunity this might provide you with. We also cannot say how long it might remain at this level; we just don’t know yet. 

Thank you for using Superdrug Online Doctor.

--------------------------------------------------------------------

That puts me some 1,650 times above the 0.8 threshold which has got to be better than being close to it. I'm very happy with the result despite the various unknowns. It seems to me that it shows that my immune system is still in a good enough state to mount a defence against COVID-19 spike protein antigens. Given that capability plus whatever memory functions there may be, it looks as if I'm in a pretty good place to deal with any COVID infection I might get. Which is encouraging, but isn't going to stop me being careful!

Otherwise, another rather lazy day at home concentrating on recovery from that right shoulder injury. It feels pretty good now and if anything the problems have moved to the left, which is their more usual  home. Nevertheless I did somehow beat my rather modest activity target.

My main concern is to be in good shape for the Winter League match at Earl's Colne on Sunday morning. If the weather's OK later I'll go to Ongar for some gentle practice, and do my best to avoid getting drawn into a game and pushing the shoulder too far.

I haven't mentioned the constipation issue for a while, mainly because it's going reasonably well. I haven't needed a Fybogel or a Laxido for several weeks and I get along on one Senna a night - or none if I want to be sure of a clear morning, usually followed by a compensatory two the next night to get back to the standard seven Sennas a week. It's a considerable relief to have reached this level of predictability and control after what went before... I just hope it lasts. One of the less agreeable side-effects of the treatment.

Thursday 4 November 2021

04/11/21 Papermill Lock, chargers, antibodies

Went to Papermill Lock on the Chelmer & Blackwater Navigation for a walk along the towpath and then lunch at the cafe (toasted cheese, red onion, and tomato sandwich with crisps and a pot of strangely unpleasant coleslaw. But I did finish it. We had a  small boat there years  ago and then sold it to move up to a share in a  syndicate narrowboat on the canals, and then a share in a cruiser on  the Norfolk Broads. But age and arthritis etc.caught up with us - and that was a few years before myeloma struck.  Should have done it long ago...























Note your indefatigable blogger well defended against the cold and the finger splits! And the cappuccino was not too bad at all.

I spent most of the evening re-organising my many chargers and rechargeable devices onto what is now the spare computer desk at the back of my study.  I've moved the rather old giant notebook HP computer that used to live there out - it hasn't got an operating system on it at the moment so it's been taking up space for no good reason. A "one of these days" project is to put an up-to-date Linux distro onto it.











That's not everything that could go there. Not by some distance.

This reorganisation needed quite a bit of getting down onto the floor and grovelling around under that desk. The getting down is easy but the getting up again is another matter...


The new micro-rash I mentioned yesterday hasn't developed any further and ,looks likely to fade away tomorrow. More of a micro-rash TBH, or even a nano-rash.


Best news of the day - the result of my COVID antibody test is in:

----------------------------------------------------------

Dear Mr Crisp

Your result is POSITIVE for the SARS-CoV-2 spike protein antibody (>0.8 U/ml).

This means you have COVID-19 antibodies. Unfortunately, at this point in time we can’t say exactly what that means about long term immunity yet. 

--------------------------------------------------------------------

I'll settle for "Positive". That's very good news indeed.


Wednesday 3 November 2021

03/11/21 Right shoulder, backgammon, chargers.

The right shoulder / neck is much improved, and probably helped by sacrificing an evening's boules yesterday. Depending on how things go with the weather we're planning lunch and a walk at Papermill Lock, I might go for an hour or so of gentle practice at Ongar in the afternoon. The trouble is that you go for a quiet practice at your own pace, and then you get drawn into a game.... Then online backgammon at 17:00. I've had an extraordinary run of good dice for a couple of weeks, but it can't last much longer. I'm almost looking forward to the pendulum swinging back the other way, just to confirm that the Cosmic Balance always wins in the end.



T








Too many rechargeable devices - my Samsung smartwatch (now somehow restored to health after recent problems I may not have mentioned), my "spare" watch / fitness tracker, my Oura Ring, my USB handwarmer and two batteries for the heated gloves, the EarPAP, my phone, my Surface laptop, and a few more. I'm setting out to rationalise the whole spiderweb of chargers and charging cables.That's a project that should keep me busy for a day or three and won't do my boule-throwing arm any harm..

I mentioned my phone, which now spends its nights on my bedside table running several "health" apps including SnoreLab - which last night gave ne a Snore Score of 151. Which is not good. Still waiting for my Christmas present of a shiny new CPAP machine from the NHS...

There's a possible mini-rash appearing on my right wrist, but not in the usual place. Will keep an eye on it.

Tuesday 2 November 2021

02/11/21 (2) First frost, antibodies

The first frost of the year on the flat roof at the back of the house this morning:












Bright and sunny at the front, with the maple doing its best:













Quite an improvement in the right neck and shoulder this morning - pretty much pain free and I can turn my head a bit to the right again. Nevertheless, I'll give this evening's boulles at Tower a miss. Maybe some gentle stuff at Ongar on Wednesday afternoon and the usual Thursday evening at Birchanger.


As it's well over two weeks since my Primary 3 COVID vaccination, about to do an antibody test. Fifty quid, but well worth it IMO whichever way the result goes.














Plenty of blood from just one finger prick this time, and I'm getting better at getting most of it into that rather narrow tube. Off to the post after lunch to send it on its way to the lab.

02/11/21 Misjudgement and massage gun

I badly misjudged my abilities yesterday. Played decent boules at Epping in the morning (three games, won two and lost one). Had lunch in the car on the way back (a Jamie Oliver egg,tomato, and salad cream sandwich from a petrol station and topped my diesel at the same time). Then felt quite energised at home and as it was a decently warm day I  decided to tackle a job on the big pond that I've been wanting to do for a long time - basically to break the big lily patch into two and haul one of them to the other end. It was far harder than I had anticipated even with the new extendable Gardena rake, and I badly overdid the exertion. Half an hour later I could barely move my head and neck to the right at all and it was very painful. At least it makes a change from having little movement to the left...

Some hours later after four Ibuprofen (and another two coming in an hour or so) on top of the usual pills,  a hot shower, and a plentiful application of the Universal Panacea (Deep Heat). it's starting to feel quite a bit better. There's even a chance of a decent sleep.

Now to get the massage gun out and give it a few minutes at minimum setting. I've already done that once and it seemed to help.



15/04/24 Good news, mostly

I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 2...