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

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