Partly my mood after yesterday's appointment, but also the cab we took back from London Bridge to Redbridge. It was a fancy new one with a slide-out ramp for the wheelchair. Saves all the "will it fit in the boot?" stuff you have to go through otherwise. I transferred to the back seat once inside.
Yesterday we went to London as planned - drive to Redbridge, Uber to London Bridge - arriving half an hour or so ahead of our appointment time of 12pm.At just about the same time that a batch of emails arrived saying (paraphrased) "Very sorry, we can't do your operation on the 3rd, can't find a top-notch anaesthetist for that time". Apparently the man originally booked for the early morning (0800) operation on the 3rd is on call the evening before and felt had to cancel.They had been frantically ringing around but couldn't find anyone sufficiently qualified and experienced. I understand it's trickier than usual because of the face-down position needed for access to the back of my neck instead of the usual on-your-back position with the head tilted back to help keep the airway open.
We're now moved on to Monday May 9th at 1300, which is a rather better time for the journey than 0800- we have to arrive two hours before. I don't know if it's the original anaesthetist or someone different.
The trouble is that you build up so much mental preparation for something like this, and then it'all blown off course and you go back to square one. I've now got to do it all again...
Started the day vy taking the scooter for what we used to call "the long walk" to the cafe where we met friends of Sue's for coffee an a toasted teacake. Quite a chilly breeze on the way out but pleasantly warmer on the way back afterwards.
Expecting a hospital stay of several weeks, I bought a Windows Surface laptop/tablet before the aborted stem cell transplant in 2020, and it's not really justified itself since. Nice machine and used occasionally but never really wormed its way into everyday life. So I thought I'd take it along for what should be a much shorter stay of just a few nights. I put it on charge for a while, turned it on and got the usual updates for virus descriptions etc.. Finally, one for a "Windows Security Update".Those are usually small and take just a minute or two. This one turned out to be Windows 11.
An hour and a half later...
Tomorrow (or later today) we go to London for the pre-op tests. More about that in tomorrow's post, I expect. Now I should get a not-too-late night.
If it weren't for the nightly stuff I do in and for Myeloma Support UK (Facebook group) I'd almost forget about my Myeloma. Still in remission, off all treatment, and everything overshadowed by the neck thing. And COVID's still out there of course. One positive Lateral Flow Test would throw all plans into chaos...
Even more emails from the hospital and medical secretaries today, most of them needing careful and time-consuming answers as well as posing conundrums such as "is a taxi public transport?" So I haven't done a great deal else. Roll on next Tuesday!
Needless to say, the promised information pack from London Bridge Hospital didn't turn up in the post as promised. So, after much hanging on the telephone (that's a link) I eventually got through to a secretary who made contact with the hospital. Result: a flood of emails and phone calls telling me (1) that it's Friday 1200 for pre-op tests and answering any questions, and (2) that I'm due in at 0600 (!!!) on operation day for the surgery booked at 0800.She did relent a little and said she could make it 0700, but honestly there's not much in it and if I'm going to have a "nil by mouth" night where it's barely worth going to bed, then there's a case for the earlier the better...
We planned lunch and an afternoon out at Langdon Hills Country Park near Basildon. It's a large one with several different entrances and car parks, and we didn't find the right one (with the cafe) until we were leaving... Nevertheless, had a decent walk/scoot through some woods and open grassland, then an ice-cream instead of lunch. Hopefully sorted out the navigational problems for next time.
As for the myeloma, it's faded very much into the background for a while now but must remember to book Springfield bloods next week - we left doing it until the hospital dates clarified. But we still have the pre-op test to do, and probably a period of isolation before the op. So the sooner the better, I think.
Operation date: May 3rd.
When I called the secretary she said "I've just heard from them this morning". What a co-incidence!
Nothing about pre-op tests yet but expect to hear from the hospital (London Bridge) by email soon.
...for a date for the surgery, let alone for the pre-op tests. This is getting beyond a joke. I'll 'phone the secretary again late morning and I won't try too hard to stop my frustration from showing... As a neighbour said yesterday, for a private hospital it's really not good enough.
The first really beautiful spring day with real warmth in the sun so we took the scooter out to Braintree & Bocking Public Gardens for lunch (cheese and red onion toasties) and a scoot/walk around the park:
and a slight detour to Bretts in White Roding for the first Rossi ice cream of the year:
A date for neck surgery? Still waiting...
'Phoned Mr.Ib's secretary twice yesterday, in the hope of getting a date for the operation and for the pre-op tests. No luck with the operation - sorry, we still haven't had anything back from the hospital, we'll call you as soon as we do. The first call cut off just as I was asking about the pre-ops, and the second time the woman who answered didn't seem to understand what I was talking about. So no progress at all. I have a feeling this is going to end up with a "Can you come in today?" call early one morning...
Going to take a night off blogging. Nothing to write about, except that Pill Organisation is a lot quicker now that I've got fewer pills to deal with and have cut down from three 7-day pill boxes to one. But the infernal little blue Amitriptylines remain, all 28 of them every time.
Come to think of it, my getting out of chairs and standing up has definitely improved. I'm not sure whether that's a real improvement in the condition or just me getting better at coping with it...
Early night tonight. That's the plan, anyway.
As planned and in some very pleasant weather, took the scooter along to Ongar Petanque. Good to meetup with some of the regulars, and frustrating not to be able to play. I'm hoping to be able to return to action by late summer, but time will tell if that's realistic or not.
I'm just visible on the right:
Went to Wivenhoe yesterday as planned and had fish & chips for lunch plus a good walk (or scoot, in my case) along the river. The scooter worked perfectly, including the potentially troublesome removal of the seat in order to hoist it into the car. Score one for White Lithium grease.
I've stayed awake all day, apart from a snooze in the car (Sue was driving of course, it'll be a few months yet before I get back to that, if I ever do. And the neck has felt a lot better now I'm on the regular paracetamol again.
A bit of a strange day yesterday. I felt tired all the time but doing the evening meal I got completely exhausted doing the prep work, then had to go and sit down for five minutes before I could face the actual cooking. And when that was done, I had no interest or pleasure in eating the result - a favourite salmon dish that I make most Fridays. It was like the fatigue that I had from the len & dex, but not so long lasting. Perfectly OK again now at 23:30. Sue points out that it might have been a reaction to yesterday's Moderna vaccination.
The neck was bad today - slight low-level constant pain, and worse than usual with the clicks and grinds that accompany most movements. I put that down to having a day off paracetamol along with everything else. So I've put myself back on the paracetamol and that has definitely improved. Another two in a few minutes...
Planning an expedition to Wivenhoe tomorrow, along with the scooter.
Another quiet day at home, notable for being Day One off all cancer and supporting meds. Now just down to the statin and amitriptyline that I was on before it all started.
Had lunch down the garden by the big pond. Too early yet for dragonflies or even the occasional damsel. They'll come later. I got there by scooter, and then did a solo trip to the post and back. Slightly scary at a couple of points where the pavement is narrowed by creeping undergrowth, but perfectly navigable at very slow speed.
Nothing today, except that I tracked down a 'phone number and email address for Mr.Ib's secretary to get the operation code to pass on to AXA, who seemed happy with it. I asked if anything was happening about a date for the pre-op tests. I didn't get an answer but 25th April was mentioned a couple of times as possible date for the surgery - waiting to confirm theatre availability etc.. I expect to get firm dates within the next couple of days.
Had my monthly consultation with haematologist Dr.Ch yesterday - face-to-face and with Sue also present. With three months gone off len & dex and bloods still good and showing no sign of relapse, he's now taking me off all the supportive meds as well. I did Pill Organisation in the afternoon, and my three 7-day pill boxes look distinctly empty. I may go down to two, or even one.
From our first trip out with the scooter:
And some little videos:
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...
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.
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.
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...
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.
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...
I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 2...
