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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29/09/22 Double century

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