31/12/22 NYE

A few random end of year thoughts. First, delighted (and not a little surprised) that the Ring video doorbell is keeping going on solar power only this far through the winter. It's on 79% of full charge as I write and has never dropped below the mid-70s. I fully expected it would need two or three full recharges (by taking the battery out and charging it inside) to get through the winter. The only problem is that we won't be able to take it with us when we move. They have a door camera system there but it works through the TV, so not much use if you haven't got that on!

Good dinner last night - salmon fillet with blowtorched skin, buttery sauteed new potatoes, and pea, mint and garlic puree:

Nothing new on the myeloma front, but in three months time it'll be the third anniversary of my non-transplant. Still doing well without it!

Continuing (very) slow improvement in my left hand, but can't say the same for my left thigh problem. Will get the NHS onto that as soon as I get an appointment.

A strange thing - despite the cold weather I haven't had a single finger (or thumb) split yet this winter. First time for many years. Something has changed, but I have no idea what.

Another "weather station" died the real death a few days ago - the outside temperature sensor stopped working and I couldn't bring it back to life with new batteries or anything else. It's off to recycling and we'll do without one now. It always read two degrees low anyway, and a digital thermometer really shouldn't do that.

I've just counted up as this blog moves through the last hour towards its fifth year - one thousand two hundred and fifty six posts so far...

Finally, a very Happy New Year to all who read this. 2022 was certainly a strange one, let's hope for better times in 23.

26/12/22 Christmas Lunch

Really good Christmas lunch at the Horse & Groom:

https://www.chefandbrewer.com/pubs/essex/horse-groom/

Turkey moist and tasty, gravy thick not thin and watery (one of my pet hates), veggies properly cooked and not too al dente.

I started with the goat's cheese and fig tarte tatin and the first glass of red since last January, and a glass of water to help it along....

25/12/22 Eye drops

Eye drops finished at last! 

New eyes are as good a Christmas present as any. Still a little less than 100% happy with full distance but perfectly liveable with and very much better than before. Seeing optician on the 29th and have a feeling they're going to want me to get some glasses for driving...

And of course, a very Merry Christmas to all who read this! 

23/12/22 Blood test results

Back to myeloma. The results from the blood taken on the 15th are in, and all is good again. Paraproteins still undetectable which is the most important thing of all, one of the free light chains a fraction low which pushes the k/l ratio a little high, but nothing far enough from normal to cause any concern. Everything else is good.

However, the tiresome left thigh pain is still there and getting slightly worse by the day although still far from as bad as it was a few months ago. Dr.Ch observes that what we really need is an MRI of the left thigh, and perhaps I'll be able to talk the NHS into that in due course. Perhaps.

And I scored another 100 on the CPAP machine a few nights ago. Would have done it again last night if the sleep time hadn't fallen a couple of minutes short of seven hours.

22/12/22 Moving

I haven't blogged for a while, and now I can reveal what's been keeping me a bit occupied for the last couple of weeks. After twenty years here in Margaret Roding, we're moving. This place, much as we love both house and garden, has become too much for us and it's time to downsize and go while we are still reasonably capable rather than wait until it's too late and we won't have any choices left. We're planning on going to a 2-bedroom retirement apartment in Chelmsford (a short walk to the bus station, and a bus route straight to Broomfield Hospital). More about all that as and when.

17/12/22 Letter

I had an NHS letter yesterday. Somehow it managed to get through the postal strikes and the mountains of undelivered Christmas cards (we've had very few this year so far, way below the usual numbers). It didn't have an NHS logo on the envelope so I doubt it had any priority delivery. Anyway it said that my referral to Broomfield Haematology has been received and is being reviewed, and I should 'phone the central bookings people if I haven't heard anything by Feb 1st. So that's some sort of progress.

16/12/22 Last time...

 ...at the Springfield Oncology Centre yesterday for them to take some of my blood. Quite sad really, as for a while when I was going in regularly for Velcade and Zometa it felt almost like a second home.  Not quite the last myeloma-related visit to the hospital because I have a last face-to-face with haematologist D.Ch on the 19th (but that's in the main building not the cancer centre) and then a final 'phone call on the 29th to deal with the blood test results. And then it's back to the NHS.

12/12/22 Overnight snow

We're following the advice and not going anywhere today!

11/12/22 Snow

The long-forecast snow has arrived:

Both Sue and I need to go out late tomorrow morning. Might be difficult, depending on whether we get more overnight.

09/12/22 Stairs and triage

I just climbed the stairs, alternate feet, no hands. First time I've done that since well before the neck operation. Other things such as general balance and bendiness slowly improving as well and I'm starting to be able to cope with buttons with my left hand, as long as they're big and not too tight. But left handed typing is still very hit and miss. Mainly miss...

I spoke to the haematology secretary at Broomfield and she says they have received the re-referral letter from my GP. It's now in the process for "grading" / triage, after which I'll be contacted with an appointment date. She couldn't tell me anything about the likely time scale for that to happen.

08/12/22 Catching up...

Freeview. A few weeks ago the TVs in my study and downstairs both started behaving badly on Freeview:

I tried everything I could think of, with no lasting effect at all. We found a couple of slightly loose connections to the splitter/amplifier box in the loft, but tightening them up didn't work, although we thought for a few hours that it was a miracle cure. Eventually, not having a signal strength meter of my own, called an aerial man in. Result: the TVs and Freeview recorders were being overloaded by a signal too strong for them. It seems that our local transmitter had boosted its output without bothering to tell anybody... So he removed the amplifier and replaced it with a simple splitter box. And all is wonderful again, although the Freeview in my room still needs an attenuator to bring the signal strength down a bit more. Never would I have thought of that explanation, if anything thought the signal must have been too weak, perhaps that amplifier was giving up the ghost...

Batteries. Had to change my mouse battery after far too short a time. It was an Energiser. In my experience, Energiser batteries are invariably cr*p. I've replaced it with a Duracell Max, which will last for ages. Why do Energiser keep their market share with such a poor product?

Axe & Compasses, now our nearest pub. Went for lunch a few days ago. Had a game pie - pheasant, venison, rabbit, smoked bacon, and figs. The figs weren't detectable, but the flavour was magnificent. Too long since I've had a good game pie, really enjoyed that one. Spent the afternoon sleeping it off...

Rangemaster. One of the control knobs for the induction "rings" has started to lose the silvery material around the edge, showing the white plastic underneath. Can't find an identical match online, the cooker is probably too old (2010). I've emailed Rangemaster to see if they have a few old spares in the back of a cupboard somewhere. If they can't come up with one I may be forced to replace all five.

Eye drops. I'm running low on the steroid ones for my right eye, and I'm supposed to keep them going four times a day for four weeks until after Christmas (although the surgeon did let me off them for the left eye after two weeks as it was doing ok). Had a lot of trouble getting him to prescribe me another 10ml bottle. All the nurses would say was "It's supposed to last..." Obviously my technique was over-generous and wasteful. I've been working on that with some online help from a cataract surgery facebook group (which is full of horror stories from people who've had it all go wrong), and I think I've got a better method now. It seems to be working.

Here's a photo from my study window of the moon rising late afternoon with a delicate pink sky behind:

Now at 00:45 it's -2C outside, and the promised cold spell has clearly started.

And the most important thing of all. AXA's private health premium last year was bad enough, and close to unaffordable. This year there's bound to be a big increase for all the usual reasons not to mention my neck surgery claim as well as the "Comprehensive Cancer Cover" and it's clearly going to burst the budget. So I've decided not to wait for the renewal in March. I've cancelled AXA after this month and will start the New Year by returning to the tender mercies of the NHS at Broomfield, and the haematologist who diagnosed my Myeloma and organised my first treatment plan. Wish me luck!

06/12/22 Notes

Haven't blogged for a week and it's late at night - I've managed to bring my normal bedtime forward by an hour - so just some notes to myself about things to write about later if I get the chance.

Freeview

Batteries

Axe & Compasses

Rangemaster

Eyes and eye drops

and a Margaret Roding photo taken on a rare sunny afternoon while taking the scooter to post a letter (also a rare event these days) and take a trip round the triangle:

29/11/22 Frustrations and good news

Trying to book my car into the local Ford dealer for a small job on the door seals. I used to be able to phone them directly. Not any more...

I 'phoned. Automatic voice said "We'll call you back".

Human being called back from Tyneside. I explained the problem. She said she'd send an email to the Chelmsford dealership and they would call me back...

Not yet.

On another matter, I need to speak to the secretaries at my GP surgery. All I can get is "The surgery is closed". No hint of that in my texts or emails or on their website.

Better news - the right eye is doing very well, both eyes working together as they should. But early days still, regular eye drops, anti-infection precautions etc..

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

Update: good news on the car. Found a new phone number, got through and booked straight away. Much better!

27/11/22 Cataract #2

My second cataract operation is tomorrow morning - I'm due at Springfield Hospital by 07:20, which means getting up at some unspeakable early hour... The first eye has healed well, haven't had any of that flickering for several days now. Hoping for an equally good result tomorrow.

Dr.Ch decided that my PET scan was good enough and no need to go back and do it again. Nothing new to show, which leaves this leg/hip pain unexplained. It has been a lot better for about three weeks but I can still feel it there in the background and has been worse again a couple of times in the last few days. Only 10% at most of what it was at its worst, but definitely the same thing. Sue says "Maybe it's just arthritis".

Last blood test results were good again - PPs undetectable, FLCs normal, everything else ok.

The rumour of a month or two ago that the late Queen died of myeloma now seems to be confirmed by Gyles Brandreth's latest book. Highly unlikely that he would have published that story without approval from the family. The new "Royal Disease"?

21/11/22 PET scan again, and jazz

Southend PET Centre 'phoned this morning - their doctors say the scan is ok so I (probably) don't need to go back, but final decision is up to my haematologist Dr.Ch when he sees the report, which should be four to five working days. Strange, it was three to four days just a couple of days ago.

This afternoon it was raining solidly and I had some things to take to the post. So I decided to drive, as my vision is so much improved. That went fine, but even better was that my left hand, thumb and forefinger in particular, were much better on the handbrake, heating controls, and etc. than when I last drove back at the end of September. It's now six months since the neck operation and I had pretty much given up hope for any further improvement in that hand but this shows that nerve regeneration is still going on and there's reason to hope it will keep on going.

Last thing of the day was to send the BBC a complaint about "Young Jazz Musician of the Year" shown on BBC4 a couple of nights ago. I was shocked by the extraordinary and frankly ridiculous decision. Here's my complaint, much good it will do anyone:

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

YOUR COMPLAINT: 

Poor choice of judges, bad choice of winner 

The judging panel represented only a small part of the current London jazz scene and were all unknown to me (a 74 year old lifetime jazz lover) and probably to almost the entire audience outside London as well as most of those inside. Same could be said of the presenters, insofar as they mattered. I have nothing against the winner - nice lad who may well have a good career - but the saxophonist Emma Rawicz was so clearly the obvious choice. She has a fully-developed and individual jazz voice plus everything you could wish for in terms of technique, feel, musicality, and all the rest. The BBC missed a great opportunity to promote the career of a real star who is already doing a lot for "diversity" and helping to build new audiences for the art form. And how ironic that this programme was followed by a repeat of one about the late "Lady Saxophone" Barbara Thompson, a true pioneer of the female voice in British jazz. Rawicz could well be her successor. Not a good day for what little is left of the BBC's involvement with jazz. 

20/11/22 More PET problems...

Yesterday I had my second attempt at my third PET scan - first try was postponed at the last minute because "the machine broke down". This time everything seemed to go ok but then I was told that the radioactive tracer had "got stuck" in my arm and hadn't circulated properly all round my body, so the images were less than perfect. Strange, as I have perfectly good circulation in that arm. At any rate, it hasn't fallen off yet... They said "it happens sometimes", and didn't mention the obvious possibility that the man who inserted the canula and did the injection didn't do it very well. Going by what they said and the looks on their faces, I think there's at least a 75% chance that I'll have to go back for a third attempt. Not happy!

19/11/22 Pet scan, second attempt

 Heading off to Southend early afternoon, and hoping not to get another last-minute cancellation. Had an early breakfast, now nothing but water until the scan.

Left eye still doing well, no pain or other issue, but still an occasional slight flickering at the left of the field. There's a slight loss of clarity and intensity particularly at full distance, but that is normal and should improve again. Still far better than it was, and no need for computer glasses any more. Reading glasses (1.0) coming from Amazon later today. With no glasses on, text on the screen is perfectly sharp with left eye only, an unreadable blur with right only. And that's the "good" eye!

No change on the myeloma front. Had another lot of bloods taken at Springfield yesterday.

15/11/22 (2) The morning after

I couldn't get the eye shield and the CPAP mask to fit together without a lot of leakage, so abandoned the idea and slept without CPAP for the first time since I got the machine. The spy under the mattress reports sleep apnoea in the Normal to Mild range (as is now usual, pre-CPAP it was always into Severe), and no snoring detected. I'll do the same tonight.

Still some slight flickering in the left visual field but the halo / diffraction effects around bright lights appear to have gone completely, although I can't be sure of that until night time.

Difficult to believe that those eye-drop bottles contain enough drops to last for four times a day...

Pleased that in these short and gloomy days the battery in the video doorbell is still showing charge of 75% or a little more on solar charge only. Starting to hope that it might get us through the winter without having to take the battery out and top it up indoors via USB.

15/11/22 First cataract done

The worst bit was at the beginning, waiting for the three lots of eye drops to have their effects. Then it turned out there was a mistake about the expected sedation - could only be done with an anaesthetist present, and they hadn't booked one in for that day. So I had the choice - reschedule or go ahead with local anaesthetic only. I decided to go ahead.

As so often in life, the anticipation was worse than the reality. Really not too bad at all, definitely better than a root canal job. I shall not be worried about next time with the other eye. There was a minor problem early on with some of my eyelashes getting in the way but that was quickly sorted out.

Afterwards, more hanging around with an eye patch on while they sorted out the eye drops and the paperwork - all taking far longer than seemed reasonable, but that's hospitals for you. Following orders, I took the eye patch off at 7pm, and the improved vision in the left eye was instant and dramatic. Everything much sharper, colours more intense, and all of that. Now typing without glasses and seeing what's on screen is far, far easier than it's been for months - in fact my "bad" left eye is now showing up just how bad my "good" right one has become.

I did get just a hint of the "grittiness" in the eye that you're warned about, but that lasted only a couple of hours. No pain at all, but getting halos and diffraction patterns around bright lights. That's also expected and should go away in a few days. Also some occasional slight flickering on the left, which should resolve itself in the same way.

A bit of a struggle to pierce the tops of the eye drop bottles, but got there in the end. One is an antibiotic for a week, the other is an anti-inflammatory for 28 days. And guess what, it's my old friend dexamethasone back again...

Have to put the plastic eye shield back overnight for the first couple of nights. That may be a bit tricky with my bad left hand because it has to be taped in place, and hopefully in such a way that it doesn't interfere with the CPAP mask. But if I have to go a couple of nights without CPAP, it won't be a disaster.

13/11/22 Mist

 A very misty morning:

After negotiating far too much data protection bureaucracy, finally got hold of the full spinal MRI report.Nothing apart from some age-related disc degeneration, which is to be expected. Should know more about the hip and leg, which is where I suspect the problem lies, after the delayed PET scan on the 19th. Before that, my first cataract operation tomorrow at 12:00 at Springfield. Apprehensive? Just a bit. Actually a hell of a lot. I think I'll need every drop of sedative they're prepared to give me...

08/11/22 Postponed

'Phone call from Southend just as we were about to leave for the PET scan. The machine's broken down...

Now re-booked for the 19th. More delay, but what can you do?

05/11/22 Pets and Cats and breakfast

PET CT scan (the one involving a radioactive injection) is booked in for this coming Tuesday at Southend, Very fast action once the process actually got started. CT scans don't take long and the machine is much less claustrophobia-inducing than MRI machines, so no problem anticipated. I've had two of them before.

The cataract operations are booked in for i2:00pm on the 14th and the ungodly hour of 07:30am on the 28th

The pain in my left thigh has given me no trouble at all for the last couple of days, so almost pleased to feel it coming back a bit earlier today.

;We decided on breakfast out this morning and went to the Axe and Compasses. There was a "Staff Wanted" sign outside. We went in - no breakfasts because no chef. So we turned back and went to The Hare. All locked up, nobody around. Ended up at the 2MT Cafe, which was close to packed out, with two chefs working flat-out in the kitchen. Even so, it was less than warm inside. All signs of the times, I fear, and I have an unpleasant feeling that The Hare is never going to re-open. It's not been the same since the ownership changed some months ago.

30/10/22 (2) MRI

 Got through the MRI - over an hour of it - OK after the Diazapam and with Sue being allowed in again. No recurrence of the unexpected claustrophobia that contributed to my having to abort the first MRI some three years ago. So that's all good. We're told results will be available in three days. Tomorrow we'll push haematologist Dr.Ch, fresh back from his holidays, fr some progress on booking the PET scan date at Southend.

30/10/22 Sedative

 About to take Diazapam no.1 (of 4) before the MRI at 2pm...

29/10/22 Apologies...

...for rather neglecting this blog for the last several days. Have had to give a lot of time to the Facebook myeloma group that I admin for (now the Lead Admin!), big works in the garden, and so on. Just haven't had the time, or the energy when I have had some time. Visiting friends in Guildford later today, MRI scan Sunday, haematologist consultation Monday. The cataracts are getting me down, and the left leg bone pain isn't going away. I'm sure I've got a new myeloma lesion in that femur. The scan will tell a lot, as will the PET scan in Southend, if I ever get a date for it.

21/10/22 Pictures

This cartoon was posted in the Myeloma Support group. There were complaints about it being "insensitive" and we had to remove it. I suppose it could upset some patients in fear of medical examinations I think it's rather well-drawn and it doesn't bother me at all.

This was taken in the kitchen of the Reid Rooms where we had a meeting about the new defibrillator in the village. It's a beautiful old deck oven, in need of some repairs and restoration. Far too nice to spend its days warming plates in there, it should be working 24/7 in an artisan bakery/

19/10/22 Cataract decisions

Decisions made, and not before time as I'm now finding reading anything including computer screens, rather difficult.

Dates are 14/11/22 for the left (worse) eye, and 28/11/22 for the right one. I'm going for Johnson & Johnson "Eyhance" extended depth of focus lenses - right eye optimised for distance and intermediate, left eye biased a bit more towards the intermediate so I should be ok for computer use without glasses. Will still need over-the-counter reading glasses for close vision. Not exactly looking forward to the surgery!

Now to tell Optical Express they've lost my business...

15/10/22 Politics

Normally I would regard the subject as off-limits for this blog, even in its new and more far-reaching form. But this is not normal. Never, in all my years of watching  UK politics, has there been a cock-up so multi-faceted and overwhelming. Never has the Conservative Party, once so famed for its election-winning unity, split apart into so many factions so completely. The mob got the scent of blood with Boris, and now it wants more. That seems to be the only thing holding them together. And once Truss goes, as she surely must before long as her party becomes uncontrollable, what happens next?

I really have no idea.

13/10/22 Frustrations, annoyances

I 'phoned my haematologist's secretary to progress-chase the PET scan he's organising at Southend. Left a message.

'Phoned Springfield Radiology to check they had got the nrew MRI request form that I emailed to them a couple of days, and hoping for news of an appointment. "Sorry, can't help. The computers are down, can't get into the system."

The secretary called back. He forgot to do it before going off on holiday, sends apologies. Will try to do it online from wherever he is. I'm to get back to her if heard nothing by the end of the month...

More delays!

My cataracts are getting worse, almost "visibly" by the day. Reading low-contrast text on computer screen now very difficult, even with aid of magnifying glass. Unfortunately this includes all the sites I've been looking at for information about multifocal lenses...

This is outside the back door:

The white thing on the fence is the temperature sensor for the weather station that we keep in the kitchen. The eucalyptus tree is in a raised bed made from(very heavy) railway sleepers. Yesterday I noticed that the temperature sensor wasn't there. I think one of the cats must have knocked it off while climbing to an observation post on top of the fence, but obviously neither of them is admitting a thing. 

I figured that it must have fallen into the narrow gap between the raised bed and the fence. Too dark to do much about it yesterday evening but this morning, shining a torch into the gap, I spotted a bit of white below the ivy in there. Getting it out was quite a challenge. I devised various plans with duct tape on the end of a stick. But that wasn't needed because after a lot of wiggling with a bamboo cane I managed to work it through the tiny gap under the fence and out the other side (which is also our land). And now I've moved that black container with the red flowers in along and back a bit, so that if the temperature sensor does get knocked off again it will fall into that and not all theway to the bottom of that gap again.

12/10/22 Progress

Just an addition to the tale of the Springfield ophthalmologist. There's a fancy new laser machine that measures the curvature of the cornea and the length of the eyeball - both needed to get exactly the right replacement lens. He couldn't get the machine to work on my left eye - apparently the cataract is so bad that it couldn't penetrate to "see" to the back of my eye. So I have to go back next week, by which time he will have got his old ultrasound machine out of the attic or wherever it lives, dusted it off, and got it ready for me.

That's progress for you! An unwelcome week's delay, but at least it gives time for some more research on the different types of lenses and the AMD risks.

11/10/22 Frost, cataracts, paraproteins

 The first frost of the year on the flat roof over the kitchen this morning, and some good autumn colour on the Virginia Creeper as well:

Went to see the opthalmologist at Springfield this morning. Unlike the optical Express man, he is prepared to give me multifocal lenses despite small risk of problems if my AMD gets worse. But it has remained very early-stage and stable for  what must be at least ten years, with daily Optivision and keeping out of bright light and away from UV - hence the hat I'm always wearing in outside photos. I think I'm willing to take a small risk in return for being free of the hassle of my normal varifocal glasses and another pair for the computer and another for driving. I'm always going up stairs or downstairs or out and finding I've got the wrong ones on. They drive me mad. But of course I'll need some top-quality UV-blocking sunglasses for every time I go outside.

The saga of the MRI request form continues, but more about that (probably) when I eventually get a date. And the good news is that I've at last got the paraprotein result from the last blood test - still undetctable, which is very good news indeed

10/10/22 I can't go on...

 ...with The Rings of Power. I just made another attempt to finish episode 3, and the best I can say of it is that I did actually get to the end. But it was so silly that I very nearly didn't. 

It's a disaster, it's as simple as that. The scripts are hopeless. The writers should have been fired and the whole thing re-thought from scratch. Or better, abandoned altogether. But I suppose Amazon had to get something in return for all the money it paid for the rights. At least we can hope that there won't be a series 2.

09/10/22 Bedtime, etc.

A third tricky little MyelomaUK problem landed on my (virtual) desk 00:445 last night. It took me half an hour to deal with, so a later bedtime than the 1:00 am I aim for these days in order to give the CPAP machine time to get the 7 hours of my sleep it needs for a decent score. I was a little short of that last night but still got 98%.

Another lovely warm Indian summer day today. Went to the monthly Farmers' Market on Writtle Green, bought a couple of cauliflower cheese tarts for Monday lunch, and a rather sticky but tasty chocolate cookie for a snack. It's not really a Farmers' Market as nobody is selling fresh local produce - it's just the usual collection of stalls and vans that appear in street markets in all the local towns, but very pleasant anyway. There's more out of shot:

The maple in the front garden is still in two minds about whether autumn has really arrived, but as usual it's doing its best to put on a show. Hard to remember that itwas just a sapling a few feet tall when we put it in nearly twenty years ago.

Another photo of the maple, borrowed from Sue's Facebook

09/10/22 Support Group

Two different kinds of really difficult stuff to deal with on the Facebook Myeloma Support Group. It's taken up most of my afternoon and evening (and up to 1am in the morning) and cast a bit of a shadow over an otherwise lovely day. Had 'flu jabs in the morning followed by Full English in the Rose & Crown and a walk around Writtle Green including a very peaceful sit on a bench by the pond. Then we got home and I oiled my boules for the winter. Watched Strictly Come Dancing, made cheese on toast (tip: add mayonnaise to the grated cheese, along with mustard, parmesan, and breadcrumbs). Then back to Facebook...

06/10/22 Rings

 Most of the way through Episode 3 of The Power of the Rings and I think I'm just about ready to give up. There are so many things wrong with it, they just don't let the things that are right come through.

05/10/22 Cataracts

(copy of a FaceBook post on the Myeloma Support UK group that I help to run)

My cataracts, which I had assessed for surgery nearly three years ago, have worsened substantially over the last few months. Back then the decision was not to go for surgery as they weren't quite bad enough and because I was told there was an increased risk of complications or failure because of my myeloma, which was active at the time. I asked my haematologist about that during a consultation a couple of days ago and he saw no reason at all for any myeloma complications. I had the cataracts assessed again today at Optical Express and am now anticipating surgery in six to eight weeks. No concerns about myeloma! Next week I'm seeing another specialist at my local private hospital where I have my cancer treatment, and we'll compare with what he has to say before deciding which way to go. Unfortunately the NHS, with a waiting time of over two years and only basic monofocal lenses, is not an option. I've been told to stop driving until my vision is fixed, and the idea of being off the road for that long is not one i would be happy about!

I asked this morning's cataract expert for any ideas as to why the cataracts have worsened so much recently and he immediately asked if I had been on steroids. Apparently the patterns he could see in my cataracts are strongly associated with steroids. Of course I have been on dex for a long time, but came off it in January. That's a bit of a gap until they started "visibly" getting worse about three months ago, but not impossible.

03/10/22 Cataracts and scans

Going to Optical Express in Lakeside tomorrow morning for assessment of my cataracts and to find out what they can offer me in terms of multifocal or accommodating new lenses. And of course, prices and waiting times. Then next week we'll compare that with what Springfield's ophthalmologist has to say and how much AXA will pay towards the total cost.Whatever the outcome of that is, I want them done with minimal delay because I'm getting to the point where I shall have to ban myself from driving.

Springfield Radiology have refused the neurosurgeon's MRI request, saying not enough information, so that's going bac for him to try again. And haematologist Dr.Ch has refused his request to arrange hip and leg X-rays, saying that myeloma has "moved on". Instead he's sending me to Southend for what will be my third PET CT scan. In other words, more delays on both sides...

Not a great image, but best I could find:

02/10/22 Epping / Ongar

 The second (home) leg of the annual Epping/Ongar challenge this morning. I wasn't down to play (no competition boules for me this year) but got drafted in as a sub for one of the Ongar teams in Round 4. Regrettably we lost 10-13, but there's a reason for that. Possibly. Overall result - Ongar won 14-2, retaining the trophy for the sixth successive year.

That reason? A week or so ago some of the fine young people of Ongar stole a motorbike at night  and were messing around with it on the piste to such an extent that they were revving it up and tore the membrane underneath the gravel. We had to do an emergency relaying of the piste and took the opportunity to build up the low corner so the surface is now much flatter than it was. Couldn't get hold of the same kind of gravel in time, so we now have a mix of two different types. Result is that it's much more true than it was and also distinctly slower, although that may change as the new surface beds in. Anyway, everybody else had time to adjust to the new conditions but I went straight into competitive play from my first throw. That's my excuse...

In the Ongar team photo I'm third from the left in the back row, half behind the very tall Ray. I was wearing a blue Ongar fleece, but all you can see is the red "Not Today" myeloma t-shirt underneath

;

29/09/22 Double century

 Another CPAP  100 last night!  Definitely no more liners for me.

28/09/22 100!

My first perfect CPAP score of 100 last night:

There's a bit of a story to this. I found the mask a bit uncomfortable at first, so bought some liners which I've used ever since. But yesterday one of them vanished in thewash, leaving me without a clean one to put on the mask. I found the liner-less mask more comfortable than I remembered, and the 100 score was the result. Will be interesting to see what happens tonight.

In other medical news, after my complaints of various aches and pains, neurosurgeon Dr.Ib ordered neck x-rays, which were 100% ok. He's now ordered a full spinal MRI which will be done locally at Springfield. No date yet. I think I can see more surgery in my future...

I had an eye test this morning, which I asked for because I have become sure that my cataracts are getting worse. That was confirmed, so the next step is going to be cataract surgery. NHS waiting time is now over two years so I'm gong to go private (also because that will give access to the more modern varifocal and accommodating lenses, which the NHS doesn't offer.) I've started talks with my insurers AXA who say they may cover depending on the optician's report and etc. Certainly it's outside their normal processes and trying to start a new claim online as advised ran into a problem when I had to choose whether my consultant was NHS or private. There's no honest answer to that one at this stage, so back on the phone in the morning.

24/09/22 Maldon

 Went to Maldon for lunch and a walk/scoot along the Promenade and the Quay. It was both high tide (for once) and market day with various entertainments on the Quay:

And us:

Lunch was vegan sausage rolls. Very nearly but not quite like the real thing.

Got home and made my signature beetroot and goat cheese risotto accompanied by a tomato and mushroom salad. Delicious as usual!

Mourning the death of Pharoah Sanders, R.I.P.  The Creator has a Master Plan, Peace and Happiness for Every Man. If only...

21/09/22 Dragons, Rings, and Dreams

Now we're a few episodes into both The House of the Dragon and The  Rings of Power it's time to attempt a comparison. Dragon was a little slow getting started but has gradually shown all the strengths of Game of Thrones apart, perhaps, from the leavening of humour provided by Tyrion and Bronn. Its strength is that the large cast of characters and their various intertwined story lines are held together by the single issue of the successor to King Viserys. Rings, by contrast, has an even larger cast and more storylines but lacks - so far at least - any coherent focus to hold them all together. You can see where all the money went, but to what purpose? Much tighter scriptwriting needed.

Dragon has one stand-out performance in Milly Alcock as Rhaenyra. For me she just beats Morfydd Clark's feisty warrior Galadriel, and not least because her part is much better written. Not only does Galadriel have some pretty awful dialogue to deliver, but it's also a bit too much of a stretch to see her as the same character as the Galadriel of LOTR

So far, Dragon is well in the lead. I look forward to watching a new episode, but I'm already feeling that keeping up with Ring is more of a duty than a pleasure. Tempting to turn to The Sandman on Netflix instead...

Good boules at Tower last night. Played one very long game and lost it 11 - 13. The heated gloves are back!

18/09/22 Poachers

 I like to think I mastered the art of poaching eggs the traditional "cheffy" way years ago. Drain off the watery part of the white, enough salt in the water to make the eggs float so they don't catch on the bottom of the pan, 2mins 50 seconds for room-temperature eggs, and drain off on kitchen towel. But despite doing all of that, yesterday evening's poached eggs on toast were a complete disaster. 

The first one somehow retained far too much water so the toast turned disgustingly soggy, the second one for some reason split into two, giving me an overdone yolk quite separate from a blob of white.

Nobody's perfect...

17/09/22 Breakfast

Still no reaction to the Covid shot apart from very slight soreness at the injection site, also still no symptoms from last Sunday.

Full English breakfast at the Horse and Groom followed by a short walk in Tower Gardens which I did with just one stick.It might have been longer but a chilly wind cut it short. Much colder this evening, and heating on for the first time this year. It's going to be a bitter night for all those people in the queue  for Westminster Hall. I can't imagine doing that at any time in my life, certainly not now.

16/09/22 #6

I had my sixth Covid vaccination this morning - the new "bivalent" Moderna  which is effective against Omicron. No side-effects, as usual.

Also no undesirable consequences from four hours of Wagner without a facemask at Saffron Hall last Sunday. That gives me confidence to return to more live music.

12/09/22 (2) Mist

Forgot to post yesterday morning's photo of the first of the autumn mists. The first I've been awake early enough to see, anyway:

12/09/22 Tannhauser

Saffron Opera Group did it again with a superb concert performance fully on a par with their pre-Covid Wagner productions. How they do it with such limited rehearsal time and for so low a ticket price is a mystery. It wasn't perfect - what Wagner ever is? - but the wobbles were minor. The brass were a little uncertain in that very exposed opening to the overture, and Elizabeth interrupted her own big aria early in Act 3 with a coughing fit.

Here's the Hall before it all began and at the end:

Getting there involved a big diversion between Thaxted and Saffron Walden but I still got there in time to get a disabled parking slot right outside the main entrance. Getting back afterwards was a nightmare. In order to avoid that diversion I used - or tried to use - an alternative route through Bishop's Stortford. I got yet more diversions, roadworks, lights, queues for no apparent reason, mysteriously blocked exits, and just about everything. A trip that should have taken 45 minutes took all of two hours.

Not much problem with any of the aches and pains yesterday. Even the neck one didn't hit until I got out of the shower, and then only mildly. Now hoping I haven't hit the panic button too early and unnecessarily, but can't take chances were myeloma might be concerned.

10/09/22 Music

Tomorrow will mark my return to live music indoors after two and a half years. I'm indulging my inner Wagnerian with The Saffron Opera Group doing Tannhauser at Saffron Hall. I booked my ticket for it in 2019 shortly after the 2018 performance of Parfisal, but it's twice been postponed for a year because of the plague.

I haven't engaged much with this year's Proms anything like as much as usual, but not all that happy about the Beeb's decision to cancel the Last Night "as a mark of respect" for the late Queen. I'm guessing that it's rather more out of fear of anti-British anti-monarchist etc. protestors. No-one wants to see riots in the Albert Hall but the Last Night is above all a celebration of Britishness, and what better way to mark the things that don't change as we come through this time of upheaval? Of course it should be a rather different Last Night, but all the more potent for that.

Unfortunately being at Saffron Hall tomorrow afternoon means missing the opportunity as Vice-Chairman of the parish council to read the Proclamation (probably to a very very small audience in our tiny Parish). I would have liked to do that.

Some good news - that vicious stabbing pain in the back of my left rib cage has been very much better. Looks as if we can write that one off as a muscle problem that has taken rather a long time to heal.

10/09/22 Aches and pains

I saw my haematologist Dr. Ch at the start of the week and described three problems on my left side that have  developed or substantially worsened over the last few weeks.

1.      Pain in left side of neck and shoulder.This goes back at least as far as the 2017 fall. It can appear for no obvious reason or after standing for some time. It is partially controlled by paracetamol (now back to 8 daily) and by lying fully reclined for ten minutes or so.

2.       Pain in back of rib cage, left side. This is a very sharp pain which is particularly triggered by getting up from a chair (or trying to). It is intense but not persistent. At first I thought it was a strained/torn muscle, but it is not healing after several weeks.

3.      Pain in front of left thigh and hip. A dull persistent pain which can stretch around the hip and behind. It comes and goes without obvious cause and is often present first thing in the morning.  Five or ten minutes in my recliner chair often alleviates it.

All three are intermittent but severe at their worst. Dr. Ch thinks that these are unlikely to be related to myeloma (although #3 is very reminiscent of the pain caused by the left hip lytic lesion which led to the myeloma diagnosis) and suggested that the cause may be neurological – or at least that this should be eliminated first.

So I contacted my neurosurgeon and he decided first step should be a neck X-ray to check the metalwork etc. probably followed by another MRI. He sent me an X-ray request form to have it done at Springfield and I took the form in yesterday afternoon.To my huge surprise the radiology receptionist said "Do you want to do it now?"

That's speed and efficiency for you!

08/09/22 And another era ends

Impossible to ignore the death of Queen Elizabet II and the passing of the second Elizabethan age. I have never been a monarchist for several reasons, but she was a truly admirable woman and lived a life that was the most potent argument imaginable in favour of the institution that she led for so long.

The Coronation was the first public event that I (rather vaguely) remember. She was there all my life, and almost in the words of Shakespeare and the Night's Watch, we shall not see her like again.

So now it's King Charles III, Best of luck to him and he's going to need it. This succession will take place in a very different world from the last one, and the extremist wings of the anti-monarchists, republicans, anti-Charles-ists and anti Camilla-ists will be out in full force on Twitter and Facebook, let alone on the streets. I think he's going to have a very hard time.

R.I.P.

07/09/22 A new era has begun...

Two changes in this new re-launched version of the blog on its third birthday, more or less:

First, I'm abandoning the self-imposed target of posting at least every couple of days. From now on it'll be when I feel like it or when I have something to say.

Second, myeloma is no longer at the centre of things. It'll still be there of course for as long as I'm around but after two and a half years of remission it's no longer something that dominates day-to-day life, except for the week of blood test results. I think this blog should reflect that.

I'm giving myself licence to write about anything - which will certainly include petanque, eating out, country parks, and my return to live music, starting with Wagner's Tannhauser at Saffron Hall on Sunday (postponed twice because of Covid) - without feeling that I'm somehow failing myself and the readers if I can't come up with a tenuous connection to you-know-what.

To get us started in this bright new future - guess what, it's myeloma again. This appeared in the Facebook group yesterday. No comment necessary.

06/07/22 Back!

It's been more of a long weekend than a fortnight in the sun, but I'm coming back after a good long think about how this blog should develop.

More about that in the next post.

02/09/22 Vacation

I've been writing this blog for very nearly three years now and with a very few exceptions I've stuck to my intention of posting at least every couple of days. But I've been in remission for over two years now and it gets harder and harder to find things to write about that are even vaguely myeloma-related. I could do a piece about my recent (minor) problem with dental appointments, but why?

I don't know why, so I've decided to take a break from blogging. I'll be back when something important happens about my myeloma, or maybe just when the blogging urge becomes refreshed. Until then, and before the last of this extraordinary summer fades away, I'm off on holiday. See you when I get back...

31/08/22 Results from blood tests #41

Good news! Paraproteins still undetectable, free light chains all ok, and that gamma glutamyl transferase is firmly back in the normal range where it belongs. Potassium a little bit low again so back on the bananas.. Nothing else to cause concern as far as I can tell - mot important of all is that remission continues!.

30/08/22 Bloods and boules

It's a week since the last bloods were taken at Springfield, so as usual I've sent an email to the cancer nurses to remind them to send me the results. That should give me something myeloma-related to write about next time. The rest of this post is probably of interest to other petanque players only (I know there are at least two among the readership, curiously located at opposite points on the earth's surface.)

Played a very enjoyable doubles game at Epping yesterday morning. The opposition got off to a good stat with five points from the first end. Difficult to come back from that, and they built up a 10 - 2 lead before we started a recovery and squared it at 12 - 12. The final end came down to my last ball and the opposition's last ball. I made a good throw, pointing right up next to the coche and taking the lead. The opposition had no choice but to shoot, and he hit my "on" ball perfectly. It flew off five or six feet to the right, and that could so easily have given them the point. But instead the coche just followed my ball, stopping six inches away and giving us 13 - 12. Two good balls to finish a very tight match, and it could have gone either way. Just luck that my team came out on top.

28/08/22 Hare

 Breakfast at The Hare yesterday (Full English) followed by a walk in Tower Gardens:

Ate nothing else all day apart from half a can of soup (with some grated cheese added) and a leftover crust off the last loaf.

26/08/22 Thunderstorm

Last night brought the long-awaited thunderstorm, and a LOT of rain. 

Result: a leak in what we rather grandly call the boiler room. Actually, rather more of an alcove. Looks to have been just the sheer quantity of rain getting into the flue rather than a leak in the flat roof where the flue goes through.

24/08/22 (2) Harlow

Very hot again, very humid and sticky. Went to Harlow Town Park for a walk/scoot. The strange thing about this park is that every tine we go, the cafe is somewhere different. Or the route we carefully memorised last time no longer works. Yet again we went wrong, so we ended up in the pub (The Greyhound) for lunch instead. Excellent scampi & chips with garden peas - it seems to be making a bit of a comeback - and very strange cappuccinos. Stopped for Rossi ice-creams on the way home - more than welcome in the heat.

24/08/22 No news...

 It's a very quiet time for bloggable material. Nothing new again...

21/08/22 Ongar

 Still nothing new about my myeloma. No news is good news, as they say.

Played at Ongar this morning and again did it without my frame and the attached boules bag, although I did get a bit tired towards the end. In the first game an Anglo-French alliance of me and Joel won comfortably against an all-English team, in the second game we swapped all the pairs around and my team lost a close game. Tomorrow, Epping. Tuesday, another blood test...

18/08/22 Birchanger

Progress on the boules piste. Played just the one longish game (we won 13 - 9, I think) but did it all free-standing without problems. I used the frame only to get from car to piste and back again. Veery pleased about that.

17/08/22 (2) Proper rain

 At last, some real rain accompanied by thunder:

It only lasted for half an hour or so - enough to get one of the cats (Blue) thoroughly soaked, but there should be more on the way.

Regular 3-monthly B12 injection this morning, and the ankle oedema is coming back despite the new pills. Maybe it's the heat. Or the new cool.

17/08/22 Cooler

The heatwave has finally broken. much cooler yesterday and some decent rain although not enough to make much impression.

Played at Tower in the evening - won one, lost one.

As for myeloma, nothing new except, maybe just possibly... for a week now I've been getting pain in the front of my left thigh. It feels like a strained muscle, but it isn't getting any better. I'm getting to the point of thinking maybe I should mention it to the cancer nurses at Springfield, just in case. I don't want it to turn out to be a new lesion in my femur or anything like that.

15/04/22 Sun

 No escape from the sun at Epping Petanque:

Played two, won one, lost one. Still using the frame for support when standing, but doing more and more without it now.

Our plumber arrived in the afternoon to fit the new macerator. Something of a relief to have the upstairs WC back in action, even though I have to wait till tomorrow afternoon for the mastic to set properly before I risk sitting on it...

A little rain this evening, but nothing remotely like the downpours some other parts of the country have been getting.

14/08/22 Shade

 Some welcome relief from the sun at Ongar this morning:

Played one game (won 13-8) then quit as too hot - about 33C. Spent most of the rest of the day crashed out with the heat. Might be some rain overnight...

Finally made it to the end of The Big Bang Theory" last night. Final episode was really quite moving - a lot invested in those characters in all that time.

13/08/22 Suffolk

 Another very hot couple of days with temperatures well above 30. At least it was a little cooler on the Suffolk coast yesterday.

The plan to take both walker (for Saxmundham church and High Street and scooter (for Aldeburgh) was less than successful. It's possible but less than practical and it would have been simpler just to have hoisted the scooter in and out another time or two with a less cluttered boot. Also, now I've fitted it with an alarm, I'm more prepared to park it and go off for a walk with a stick or two than I was before.

Welcome shade in the Garden of Remembrance:

Lunch at the Wentworth in Aldeburgh:

Expecting it would be easy to eat with my bad left hand, I ordered coq au vin with rice, expecting a mound of rice and lots of chicken pieces on the plate. Instead I got a whole chicken quarter in a little pot with a pepper and mushroom sauce and a tightly packed little dish of wild rice. Very difficult to eat without creating rather more mess than I like!

A walk along the front:

And finally to Snape for tea behind the concert hall and a visit to the fascinating Early Music Shop which has recently moved there from Yorkshire: