30/05/22 Blood Pressure

After several years of stability around 120/70, give or take, I've been getting some rather higher readings over the last few days. I had my BP taken several times a day when I was in hospital recently, and nobody seemed very worried about it then. The only thing that's changed since then is that I've got myself completely off morphine (an almost completely off paracetamol as well). Ankle/leg oedema is bad again. I feel I should contact my GP - much luck with that these days! Think I'll start a diary tomorrow and let that run for a few days first.

On the other hand, one of my two home BP machines has just indicated a desire for new batteries, which might explain a lot...

28/05/22 Better than a poke in the eye with a sharp stick

Or is it a blunt stick, I'm never sure and a little searching suggests little to choose between the two versions? Anyway, had a letter from AXA today with the  promise of a refund on my 2022/23 premium. The logic is hard to follow but the main point seems to be that because of COVID they paid out less in claims than exacted so we the customers were overcharged. I'm due for £111 back which doesn't make much of a hole in the amount AXA extort from me every year, but better than...

It was a nice day and the roads will be very restricted over the weekend because of a huge London & Essex bike event, so went to Hatfield Heath for brunch at the Village Tearoom. Took the old lightweight three-wheeled walker which is OK on smooth pavements etc. but hopelesws on rough grass, as on the Green:

It still being a very nice day when we got back, took the scooter out for a trip around the local triangle. 

All OK apart from a bit of misjudgement turning right out of the drive. There was a big white truck just visible coming from the right rather faster than I judged. Also, my max speed was set low for going over the gravel and I didn't turn it up when I got off the gravel and onto the pavement just before our dropped kerb. The result was that I got across with time to spare, but less of it than I should have had. Several lessons to be learned from that.

Here's a bit of life on the open road:

After that, Pill Organisation which now seems more complicated than before although there are a lot fewer meds. And doing my best to get through the pain attacks (mainly left shoulder) without reaching for a fast-acting morphine capsule. These bursts of pain do pass, if I wait long enough.Slow release morphine now down to one a day, or none, rather tan two a day as at first.

27/05/22 Follow-up

Yesterday's first problem was an Uber driver who parked in the middle of the road a hundred yards away. Apparently he was "looking for his hands-free". Whether he found it or not, he spent most  of the drive on the phone in a language neither of us could recognise. And when we got close to the target, it became clear that he didn't recognise the name of the Shard or have any idea of what it looks like. How can you be taxi-driver in London without knowing an iconic landmark that can be seen from half the city?

Anyway, we got there in the end and in time. Mr.Ib was pleased with progress, and we left with a DVD  of images from the surgery.. As usual there's quite a learning curve withe viewer that comes along with the images, and to put it mildly I haven't exactly mastered it yet. But here is one image showing my neck and the robot lining up the screws:

He was quite positive about returning to driving in a few weeks, and that of course will mean a return to boules. The sooner the better for my "mental health"!

26/05/22 Back to the Shard

Later today, back to the London Bridge Hospital, or the part of it that occupies the bottom two floors of the Shard for an early afternoon follow-up appointment with my surgeon. Considering that it will cost us something in the area of 100 GBP to get there and back, I hope we'll get a fair bit of his time!

24/05/22 Physiotherapist

Huge relief to be free of that dressing on Day 14, and to have a shower without having to worry about getting it wet!

Physio appointment yesterday, concentrating on head position. This one is really good - almost good  enough to ,make me revise my opinion of physios in general. Romanian, 23 years over here. Later today, the chiropodist cometh. Essex born and bred...

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.

14/05/22 ...and Hello again

Back from hospital last Thursday 12th, and everything seems to have gone very well. Arrived at London Bridge at 11:00 Monday for the operation at 13:00. There was a small delay because some machine had to be re-booted, but that's all. No long wait for pre-meds these days, just arrive, quick chat with the surgeon and the anaesthetist, and off you go. One injection in the arm, and it's like switching a light off. Just gone,in an instant.

The procedure itself - four titanium screws, two rods, and a plate plus some "synthetic bone" - was done with me face-down with my head over the edge of the table to open up the cervical vertebrae as far as possible. The robot works with the map of my spine built up by CT scan and also from live 3-D X-rays, The result is - so they say, far more precision with cutting tools etc. than a human urgeon can achieve, and the ability to work fro "impossible" angles. The robot in question was, I think, one of these: <https://www.stgeorgesurgical.com/naviokneereplacement/> or a more advanced version of the same thing. 

So, after four hours of general anaesthesia, it was done. But I had a build-up of fluid around and/or in my brain, leading to me lashing out at random and being, in the anaesthetist's words, "all over the place". I don't remember a thing about that - when I came round it was all over and just like switching that light back on again. They sent me off to High Dependency, apparently not unusual for recovery from prolonged GA. And then, fearing another burst of whatever it was, they moved me into Intensive Care and inserted a drain to remove that excess fluid. And that's where I woke up. I could tell it was a different room because the TV was on the other side of the bed, and there seemed to be rather too many nurses around. But nobody told me it was an Intensive Care Room.

One of the theatre nurses had said she would phone Sue as soon as I was out of theatre, but needless to say, she didn't. So I was left assuming Sue knew I was OK but in fact the first she heard was the morning after: "Oh, he's in Intensive Care..."

Not good.

Not good at all.

Anyway, back in my original room, various fun things to deal with. No urination for several hours after getting the catheter out - and lot of stining when I finally did get a flow. And bad constipation from all the painkillers...

Now for some photos in, as they say, no particular order. As for the scars, the left one is the main incision and the one on the right is for the drain. Or so I was told.

And now for the big question. What has all this got to do with myeloma? As it has turned out, nothing at all. But when you have a condition with such a wide range of not very clearly defined symptoms it's natural to look in that direction when something new appears - especially if bones are involved. It isn't anything to do with my myeloma but it easily might have been.

And now for the recovery - right hand is already some distance on the way back to normal, left hand shows slight improvement but still a long way to go. Walking still bad. More in a few months...

08/05/22 'Bye for now...

Early tomorrow morning I'll be on my way to London Bridge Hospital for my neck surgery, so this is likely to be my last blog post for a few days or more, depending on how things go. We're due to arrive just a couple of hours before operation time, so I doubt I'll get a chance before I'm unconscious....

Anyway, keep checking in. I'll be back, and once this is over I hope I'll be able to get back to the proper subject of living with myeloma rather more than recently!

07/05/22 Malevolence

The Day of Judgement is getting closer - just three sleeps away, as some would put it. We've been planning and organising, apart from being interrupted by a dying car battery, our plumber fixing a couple of things, a late PCR test,and the general malevolence of the universe. Today will involve some last-minute shopping, an "On Your Drive" new battery, cutting what little is left of my hair, and Pill Organising for when I get back and (I hope) remembering to take the original pill boxes with me...

05/05/22 Lift

What a day to find out that the firm you bought your stairlift from just a few months ago has gone into administration. So, for the time being and unless somebody moves in to take over everything, we have no guarantee, no service agreement, and a problem. The seat won't stay in the upright position. Call-out charges for local firms run into three figures...

04/05/22 Blood

It should, of course, have been operation day...

The last set of blood test results are in. Far and away the most important, paraproteins are still undetectable.Two of the three free light chain numbers are a little out of normal range but not enough to worry about.They usually come back next time or two. Everything else is good, so all most encouraging.

03/05/22 Sufficient unto the day...

Pleased to report that the scooter-charging problem has been solved, at least until it's time for new ones - which should be a good few years away.

It's a week since the last lot of bloods were taken at Springfield,so should get the results later today.

02/05/22 Sand, batteries

An interesting sort of day...

Went to Great Notley Country Park, where there are plenty of tracks in good enough state for the scooter. Unfortunately there are a couple of sandy play areas that you have to cross. From previous expeditions on foot I thought the sand was no more than an inch or two deep  so I set off full of confidence. But halfway across it hit four inches, which is the scooter's ground clearance. Firmly stuck, couldn't go forwards or backwards. 

Several spectators rushed to my aid and with some difficulty managed to push me out,with maximum power assistance,prompting Sue to observe that there are still good people around. Quite so,and many thanks to them.

By the time we finished at Great Notley the charge level in the batteries was well blow 50%, which meant time for their first charge.And that, according to the place we bought the scooter from, meant taking the batteries out and putting them into the separate docking station. All very well until we found that the crescent-shaped bar clamped around the seat tube (which is the bit the hoist attaches to) didn't give enough room to get the batteries out.And we can't move that bar because the piece clamping it to the seat tube uses some unusual fixings which need a specialist tool that I haven't got. That isn't very clear but some photos and a video might help:

Great frustration! Still, it helps to keep the mind off other things. And then we discovered that there is a very well-hidden charging socket on the tiller.Which would appear to mean that the shop was completely wrong.Anyway that's plugged in and going overnight.Later we should be able to figure out whether it's charged both batteries or just one - the shop assured us that the only way to do both at the same time was in the separate docking station.