23/05/22 Small improvements, and cutting back on the pills

Again, very little new. The myeloma remains in full remission as far as I know. The neck continues to improve, although rather unevenly. Walking gets better daily but the retreat of the tingling and return of sensation in my fingers seems to have hit a block - no change there for several days. I'm doing the physio exercises and neck mobility generally and particularly neck rotation side-to side is definitely getting better. That's particularly pleasing because I was warned I might lose the ability to turn my head altogether.

Otherwise, a couple of short trips out, tea in the (sunny) garden, celebrating a significant birthday for Sue. And - a bit more good news - starting to lower my daily intake of opiates. Still on two slow-release ones twice a day but cutting back on the fast-acting ones - only two yesterday instead of the usual four. So my aim by the end of the week is to get off those altogether. Then the slow-release ones, then the ibuprofen, then the paracetamol...

Later today, the physiotherapist returns, and we intend to take the dressing off an let the air into the wound. Fingers crossed for that looking ok!

20/05/22 And the winner is......

The Private Sector!!

The "expensive" dressing provided by my private hospital survived its first shower perfectly, even though I took no particular care to "keep it dry".  And it did the same again just an hour or two ago. But the NHS one started to peel off after just one shower despite taking all reasonable precautions including not washing the back of my head and neck.

Here's the current state of the wound:

As for the myeloma, it's still in remission. As far as I know...

19/05/22 (2) Dex Redux

Went to bed about 0100, woke up at 0330 with every bit of that old familiar feeing form sleepless dex nights - just no way you're going back to sleep again.So I'm in front of the computer ready for another show or two from the final series (#12) of Big Bang Theory. Trouble is, I haven't taken a dex for about our months.

Completely pain-free as well as wide awake, but the painkillers are supposed to make me drowsy...

19/05/22 Dressings, and winter fruit

Went to the GP surgery yesterday morning to get my dressing changed. The nurse told us they didn't stock the exact same one because they are too expensive. I've since looked them up online and they're about 1 GBP each - doesn't seem too pricey to me even if we do need two at a time. Anyway, we had a couple of NHS standard dressings and the nurse said that the wound has healed well apart from one area where a bit of new skin is still being laid down. So not too far away from being able to dispense with the dressings altogether and let some fresh air in - otherwise I might be ordering a pack of them in.

Then we had the usual conversation about showering, with the usual impractical advice of "as normal, but don't get it wet". I did my best, but enough water got where it shouldn't and the thing started peeling away and almost fell off. So we had to change it for the hospital issue ones, which experience says should last a few days at least. Then there's the problem of re-ordering some of the painkillers that London Bridge sent me away with. This is a saga so complicated and unsatisfactory all round that I'm not even going to try to explain it.

After that, lunch at The Hare - Sue had whitebait, I had a sausage ciabatta sandwich, with a "winter fruit" crumble and ice cream. What exactly is a winter fruit? Apart from big chunks of apple seemingly cooked in raspberry juice, I have no idea.

Recovery continues well. Mobility gets better every day - to the point where I'm now having trouble remembering exactly how bad I was just from the myeloma before all this started. Some of it may be just down to the painkillers of course - I've just taken my last batch for the night and at the moment the operation site is around 95% pain-free. And the myeloma remains - as far as I know - in remission. I did have a fear that with my body distracted by this other thing and having to deal with all the painkillers, the beast might find a way to come back. That's the thing about myeloma - the gift that keeps on giving, even when you think it's gone away. I've taken a couple of weeks off from active participation and admin work in the facebook support group, but I think I'll be ready to pick that up again after the weekend.

18/05/22 Physio

Yesterday was the first visit (of probably three) by our new neurophysiotherapist. She took a history (again!) did pretty much the usual tests and assessments (again!),and gave me a set of exercises remarkably similar to the ones I had already got from the hospital physios. The only thing really different was the tour of the hose looking for potential problems - all of which we had already identified and fixed...  So, one way of looking at it is as a straightforward waste of 90 GBP. But there was something curiously impressive and confidence-boosting about this physio and I can't find it in me to regret the money. Ask me again after a couple more visits...

15/05/22 Heat wave

Last week's promised heatwave delivered just one good day. Yesterday reverted to the grey cold murk of the earlier part of the week, with added rain in the evening. Now they're saying the heatwave will come this week.

Not holding my breath.

Neurological progress is much faster than expected, long may it last. I've found myself walking around inside the house without a stick but with far more confidence than before. A gold medal for that robot! On the other hand, still very reliant on the painkillers four times a day. I'll have to arrange a further supply from the GP tomorrow. Also need to arrange another haematology consultation with Dr.Ch.

15/05/22 Breakthrough!

This morning  did nor start well, with quite a bit of pain, possibly after going a bit too hard on the physio exercises yesterday. But the breakfast pills kicked in ok after an hour or so.  The best news is that I'M TYPING THIS WITH BOTH HANDS! Accuracy isn't great but that's a big improvement and gives time real hope.

 Now for lunch and some more painkillers.