11/04/22 Marks Hall Estate, and scooter

 From our first trip out with the scooter:

And some little videos:

09/04/22 Hoist

Yesterday's good, if rather delayed, news is that we now have the scooter hoist fitted in the back of my car:

It's a close thing - only a few mm clearance here and there, but after all the fuss and the people who told us it couldn't be done....

Haven't tried it yet but I'm not 100% convinced that the seat has to come off.  If I'm right it would make it a lot easier for me to use solo, if and when I'm able to drive again. It's nearly three months since the last time...

Had an NHS text inviting me to book a COVID booster, which will be my fifth. Should be quite good timing, giving me peak resistance to the plague at the same time as I'll be in hospital for my neck. 'Phoned AXA about that - both hospitals are recognised so that's OK - except perhaps when it comes to next year's premium increase...

08/04/22 Loose ends, the Shard, and surgery

Loose ends, first of all. The coffee machine works. But it only works with Lavazza's own compostable "Eco Pods", despite all the advertising implying that it would take Nespresso and other standard types.  Just one of Lavazza's own range of Eco Pods is decaffeinated. We should have some of those in later today, and I hope we like the taste, otherwise we've got a bit of a problem. I suppose one cup of caffeinated coffee wouldn't be much of a problem, it's not as if either of us drinks five or six a day... Be that as it may, we now have a stock of non-compatible capsules that Amazon won't take back for a refund. Off to Ebay, I suppose.

Careline - they've taken  the mentally deranged old one back and I've now got a fancy new redesigned Mk.II GPS alarm instead. As I write it's in its charger and  behaving itself perfectly. So far...

The main business of yesterday was to go to the Shard Medical Centre to see Dr.Ib The cost of the expedition - hire parking space in Redbridge, taxi from there to the Shard, and the same again in reverse, is not small...

Mr.Ib's consulting room is just outside the waiting room, and when he showed the previous patient out he saw me in the wheelchair and came over to help push me in. That made a good first impression.

We went through the history, the examination, and the scans. Sue thought his explanation of those was clearer than the other two neurosurgeons managed. Anyway, it's going to be surgery (as expected) to screw C1 and C2, and possibly C3, together, plus whatever additional metalwork as may be needed once they get inside. There's also the possibility of myeloma-related softening of the bone, which might require reinforcement with "artificial  bone" (I had to google that when I got home). I suppose my two years of Zometa may have avoided that problem - I forgot to ask the question in the midst of all the rest that was going on.

The likely time-scale is two to three weeks, either at the Shard or at the London Clinic where I had my stem cell harvesting a couple of years ago and would have had my transplant if not for Covid. Likely stay just four days, and lots of intensive physio. As everyone else has said to me, the primary aim is to stop things getting worse. Getting better - if it happens at all, will be a long slow process. All this, and myeloma as well, lurking in the wings getting ready for a come-back. But not just yet - latest set of blood test results came in a few days ago - paraproteins still undetectable, free light chain ratio good although one of them is a little out of range. Not something to worry about, it'll probably come back next time. Everything else is good.

07/04/22 D.I.Y. Appointment

I got fed up with waiting for an appointment with neurosurgeon #3, Mr.Ib, at London Bridge so I 'phoned the hospital directly. Result: an appointment later (1530) this afternoon. I wonder if I would have been contacted about that if I hadn't got in first? Somehow I doubt it.

Driving to a Just Park spot near Redbridge Underground Station (actually one I used regularly for English National Opera etc. in those distant pre-Covid days),then going to take a taxi the rest of the way to London Bridge. That's as low Covid risk as we can manage.

The new capsule coffee machine arrived. Better than it might be, but not the Real Thing. I'll just have to get used to it.

05/04/22 Technology...

Sue and I both spent far too long trying to get through to DeLonghi (manufacturers of the determinedly Polish coffee machine), both by phone and by the completely non-functional webchat. All without success. I then tried Amazon Product Support and they were rather more helpful, suggesting several solutions which of course didn't work. They eventually said I should return the machine. Amazon said they couldn't do a replacement so we're going for a refund and starting the whole process again. I have an unpleasant feeling that we may be forced to a capsule machine. Been there before, didn't like it...

And tonight, shortly after getting out of the shower and putting my Careline alarm in the charger, my Careline GPS alarm went mad. Setting itself off all the time...

Nothing to do with myeloma but it gives me something else to think about...

04/04/22 Slow, slow, slow

That's what gets to me. So slow to get to the next step, which at the moment is a toss-up between getting the scooter hoist fitted and getting an appointment with Mr.Ib, the neurosurgeon at London Bridge. Thursday is his clinic day so maybe there's a chance for next week.

The new coffee machine has been here a couple of days but inevitably there's a problem. Basically, it's got itself stuck in Polish and we can't get it back into English. Two days lost over the weekend without decent coffee at home before we stand a chance of contacting tech support later this morning.

Generally, even the simplest things take far longer than before. Getting dressed in the morning plus the usual routine of tooth brushing, shaving around what's left of my beard, and washing my face - what my mother used to call a "cat-lick" because I can't bend down properly any more - all used to take ten minutes max. Now it's a good hour. BTW I do get a good face-ash in the shower at night!

Cooking. I still do most of it, but all the prep work takes twice the time it used to. And so on and on. Everything is sloooow. It's very frustrating for me and possibly even more so for Sue. But there's just nothing I can do about it.

02/04/22 Coffee, surgery

First, Amazon had some problems delivering our new coffee machine. That's on top of the trouble I had getting them to let me pay for it. But that's irrelevant to the subject of this blog, so moving on....

The day started with some light snow and threatening skies, but it didn't last long:

The people supposed to be fitting the scooter hoist to my car on Monday 'phoned to say the necessary parts haven't arrived, so delayed until Thursday. Great!

The coffee machine finally arrived. Will try to get it up and running later today. It's only a couple of days since the old one went off to recycling. Badly missing the morning cappuccinos.

Then a 'phone call from neurosurgeon #2, Mr.D of Brentwood. He's had his meeting with his colleagues and the joint decision is that I need surgery, which will involve going in at the back of my neck and inserting screws into C1 and C2 and possibly C3 as well, plus whatever other supporting metalwork as may be needed. But this is not a job for a provincial hospital like any of our local hospitals so it's off to London Bridge Hospital and the tender mercies of neurosurgeon #3, Mr.Ib, who seems from what I can find online, to be the top man for this kind of thing. Of course there'll have to be at least one consultation with him first, which means going to London with all the attendant complications of travelling with a wheelchair.

Outside temperature down to just 1C tonight...