31/12/20 New Year

A short post to wish all this blog's readers a very Happy New Year. For those with myeloma and their carers, we've made it to the end. Now let's go and do it again. For everyone waiting for COVID vaccine appointments, let's hope they come soon. For the light at the end of the tunnel, let's hope it gets brighter by the day. For those in the UK in particular, 11pm tonight marks the end of the Brexit transition period and the start of the new deal. There will be many and various feelings about that but we are, as they say, where we are. Time to put aside the differences and build a new and better future. Hopefully one with the return of live music. I've been nine months without it!

30/12/20 Diary confusion and the light at the end of the tunnel

I had my next lot of bloods at Springfield down for 11:00 tomorrow 31st. I clearly remember a discussion with the nurse who booked it about whether I was OK to come in on New Year's Eve. I said I'm OK as long as you are and she said they would all be in as usual so no problem.

We went for the long Admiral's Park walk this morning - never seen so many people there, not even in height of summer - and came back to a message on the landline saying "Where are you? Appointment for blood this morning..." Today is the 30th.

I 'phoned them. No chance of doing it tomorrow because it's a "treatment day" when the chemo nurses are all over in the main building. I've booked Monday 4th Jan at 11:30, the main problem is that the regular 'phone consultation with Dr.Ch is booked for 10:30. Even if he's on time he won't have the bloods results. I've emailed him and reckon that he will still be able to see the results by the end of the day and be able to authorise the next batch of meds for me to collect as booked 14:00 on the 5th.

I also have a dentist appointment at 14:30 on the 4th, further reducing the options for delaying the 'phone call with Dr.Ch until later in the day.

More good news on the vaccination front - the Oxford / Astra-Zeneca vaccine has been approved "rollout" will start on the 4th. My best guess is that Sue and I will reach the front of the queue at the end of  January or early Feb, followed by at least four weeks before the second injection.

On the way back to the car park from the walk we spotted this. It seems appropriately symbolic:

30/12/20 Bobbington and the failure of the state

A rain-free day for once, although the temperature stayed at just 2 C all day. Feeling a need to confirm that the outside world still exists outside the version of it that lives on the internet, I took the car out for a drive and ended up at the Bobbington nature reserve just outside the village of Moreton. That gave me a reasonably decent walk, and as it's all on paths I abandoned the walker and did it with just a stick. However, I did underestimate the amount of mud I'd find on paths that had clearly been flooded by the recent heavy rain...

Nothing else to report. Still waiting for copies of GP letters from the two neurologists, still waiting for contact from an oral surgeon, and of course still waiting for a COVID vaccination date. The GP surgery website tells me that they will be working together with several other practices in a "Primary Care Network" and that they have identified a Medical Centre on the western edge of Chelmsford as a suitable venue because its layout is good for social distancing and queue management. Apart from that, it seems they have very little information about what they will be expected to deliver, and how. Seems to me that they haven't got enough parking available, especially with the requirement for drivers to wait 15 minutes after injection in case of a negative reaction, but perhaps they've taken that into account.

If we've learned one thing from COVID so far, it must be that the machinery of the state has been completely not up to the challenge. Everything from the failures of Public Health England through to accepting volunteers to help with testing and vaccination has been frustrated by an obsession with irrelevant rules and targets and a failure to show the flexibility needed to cope with an unexpected crisis or to co-operate with the private sector, all combined with far too much panic spending. We need a complete revolution in how we get things done, and what better an opportunity to reboot all these things than Brexit?

29/12/20 Frost

Yesterday gave us the first hard frost of the year, with added fog that lasted all day. Temperature never got above 2 C. Here's the familiar shot out of a back window:

Otherwise, no news on the myeloma front except that I was exceptionally bad at falling asleep during the day and evening yesterday. I just keep taking the tablets and we're at the stage of the four-week cycle where I start thinking about the next set of bloods (to be taken on the 31st, full results a week later). 

Sooner or later the paraprotein numbers will start going up again, and that will mean making a hard decision between stem cell transplant or moving on to second line chemo. Psychologically there's a big point here - as long as I carry on as I am at the moment, it's possible to believe that remission will carry on without limit, or at least until I drop dead of something else. But once I go from first line to second line that view becomes impossible - things become finite and third line becomes inevitable. And with each new line of chemo the treatment becomes less effective, the side-effects become harder to deal with, and the remissions get shorter. Not many people get beyond fifth line.The effects of myeloma on bone, kidneys, etc. etc. get stronger and the inevitable end becomes not only closer but a lot less pleasant than where I am at the moment. That's why I start getting a bit nervous around this stage of the cycle, waiting for the next set of blood test results. As long as the paraproteins stay at zero everything is ok, once they start going up again, we're in another world. And not a very pleasant one.

26/12/20 Monoclonal antibodies

Finally got my local Triangle walk in today, despite some very light drizzle. That's made me feel a little less bad about the lack of exercise over the last few days.

I thought it sensible to take a Fybogel and a Laxido last night after the Christmas lunch (as well as the daily Senna). A most satisfactory result this morning...

Some promising news today about the NHS running two clinical trials on monoclonal antibodies for COVID-19. This is similar to, but not the same as, the "Regeneron" treatment used on Donald Trump. This is of particular interest to immune-compromised people, which includes everyone with myeloma. The vaccines we have so far depend on the recipient having an immune system response to provide "active" immunity by making antibodies to match the vaccine - but if you have a seriously weakened immune system that isn't going to happen, or not on a big enough scale. But if you can introduce the right kind of antibodies directly into the bloodstream you have "passive" immunity for as long as those antibodies hang around. The two trials are looking at two different angles on this - the use of passive antibodies as soon as possible after exposure to risk of coronavirus infection, and as an alternative to vaccination in the immune-compromised population. Expectation seems to be that passive antibody injections could give six months to a year of protection, which is in the same territory as vaccination (so far). 

From my personal point of view, my blood numbers show my white cells as being pretty much in the normal ranges, so I hope that my immune system is not (yet) in too bad a way so that there is hope of a good response to vaccination. But it's very comforting to know that there may now be an alternative route towards immunity as well as something getting close to a treatment for COVID-19.

Here's a little something I found about monoclonal antibodies (produced in the lab from clones of a single cell). It explains some of the strange and un-pronounceable names of some of the myeloma drugs that start appearing in second-line treatments and beyond:

--------------------------------------------------------

Monoclonal antibodies are man-made proteins that act like human antibodies in the immune system. There are 4 different ways they can be made and are named based on what they are made of.

• Murine: These are made from mouse proteins and the names of the treatments end in -omab.
• Chimeric: These proteins are a combination of part mouse and part human and the names of the treatments end in -ximab.
• Humanized: These are made from small parts of mouse proteins attached to human proteins and the names of the treatments end in -zumab
• Human: These are fully human proteins and the names of the treatments end in -umab.
• -------------------------------------------------
• Never knew that before. Live and learn!

25/12/20 An unusual Christmas

 A very Happy Christmas (what's left of it) to anyone reading this today.

Decent weather for once so we had a morning walk in Admiral's Park - a rather muddier one than usual. Then back to start on Christmas lunch which we had on the table by about 15:00. Well, not so much a table as the breakfast bar in the kitchen. And that's it - nothing else to report today. Like everyone else, we're just looking forward to another national lockdown and then things starting to return slowly to something like normal as we move into spring and the vaccination programme really gets going. It would be good to meet my haematologist in person again rather than over the 'phone!

24/12/20 (2) Very short walk

Better weather today, which fooled me into waiting until after lunch for my local walk, intended to take me round the triangle. I got about two hundred yards before a gentle rain began, and in another hundred it was turning hard and looking to be set in. So I turned around and retreated. Not very good!

24/12/20 Another dex morning

Went to bed as usual, a bit after 02:00. Got to sleep straight away, also as usual. Woke up just after 06:00, tried to get back to sleep but failed totally. In my study on the computer by 06:45. The sleeplessness effect of dex is less predictable than it was when I was on the higher dose, but still just as potent on some days. 

Also had morning TV on - very unusual - in expectation of a Prime Ministerial announcement about a Brexit deal between 07:00 and 08:00 but mid-morning now loks more likely.

23/12/20 (2) Tier 4

As expected, all the remaining parts of Essex will move into Tier 4 on Boxing Day. That includes us and Dunmow. I had quite expected tomorrow or even today, but I suppose that would not have been practical. 

The Myeloma relevance is that going into Chelmsford (or almost anywhere else) will no longer require crossing a Tier boundary, so Admiral's Park, Oaklands Park, and all the various country parks etc. will be open to us for strictly socially-distanced walks and exercise. When it stops raining, that is.

We now also have "quarantine" - effectively Tier Five - where you aren't allowed any contact with any other person at all. This is a response to the new South African variant that we heard about for the first time this afternoon.

23/12/20 Tiers and paperwork

Went up to the GP surgery in Writtle to collect a prescription that should see me through into the New Year. Heavy rain (again) let me avoid making a decision about crossing a Tier boundary to go to Admiral's Park. Will hope for a local walk this afternoon, either before or after the Tesco Christmas delivery.

Otherwise, after showing interest in three of their "Panels", I have quite a mound of MyelomaUK paperwork to get through.

If I read between the lines correctly, I shan't be surprised if we're in Tier 4 by the end of the day.

22/12/20 (2) Pepper's Green & The Black Lion

I did make the local walk along to Pepper's Green Lane and back. Not very far, but enough to get rid of the guilt feelings built up over the last few days. Nothing else at the moment.

On the other topic, here's a Facebook post from The Black Lion in High Roding. That's a bit over four miles away in the direction of Dunmow:

"To all of our customers.

Unfortunately we have had an outbreak of COVID-19 here at The Black Lion. We have been notified the dates surrounding the 16- 18/12/20. All staff have been tested and the pub has been deep cleaned, we will be enforcing temperature checks to each customer on arrival. Ultimately, it is now safe for the pub to be reopened.

We thank you all for your support and cooperation during this very difficult time."

No mention of whether it was the original strain or the new one. Either way, it's getting closer...

According to new Government advice for the "extremely vulnerable" (aimed at Tier 4, but as we're only a dozen yards or so away, I'll take it as applying to me) I have to go back to shielding. Don't leave the house except for essential purposes, avoid other people, etc.. Well, that's not all that different from what I've been doing, except that I really should cut out going any distance for exercise. Can we still do Admiral's Park which is on this side of Chelmsford? Strictly, probably not. In practice we probably will, just have to be even more careful about avoiding other people, sanitising everything, and so on.

22/12/20 RUDY and Myeloma UK panels and COVID again

Yet another wet day yesterday filled with one thing and another around the house. Really must find a way to get out for some exercise later today, even though it's forecast to be another wet one. I  suppose this will end sometime. 

It occurs to me that one advantage of not having heard from Dr.Zo (private neurologist) yet is that I haven't had his bill either. The longer it stays in my account rather than his, the happier I am.

Yesterday's post included a package from RUDY and its "Prepare" research project which I signed up for - the main purpose is to monitor effects of COVID vaccinations on Myeloma patients. Stage 1 is to get my GP surgery to take a blood sample which I then send off to RUDY in Oxford. They've sent me some very fancy packaging and a couple of explanatory letters. I've copied them and will put them through the surgery door later today. The surgery should feel happier when they get the confirmation that they get paid £16 for every time they do this (quarterly, I think). The plan is to combine this one with my next B12 injection on Jan 6th which means that I won't be doing the B12 shot myself this time. I shall almost miss that...

I've also put my name forward for some "panels" at Myeloma UK. One way to put something back and hopefully make a positive contribution. I'm particularly interested in the "Early Diagnosis" one which is mainly about better GP education regarding myeloma. A commonly quoted figure is that most GPs only see one new myeloma case in five years so it's not surprising that it isn't in the forefront of their minds and opportunities to spot it early are often missed, leading to years of ineffective treatment for the wrong thing. I was very lucky in that my GP did think about bone cancer early and that put me on the road through MGUS diagnosis and myeloma a year later - before much bone damage had been done. And that's why my "myeloma journey" so far has been as good as it has. Another year or so's delay and things might have been a lot worse.

COVID-19 new variant - I fear that we are in deep sh*t with this. It looks as if the new variant is already present across all parts of the UK, which makes the imposition of Tier 4 and travel restrictions including the effective cancellation of Christmas look like a bad case of mistimed stable doors and escaping horses.

It's 99.9% inevitable that before long the whole country will be in full lockdown again, with incalculable damage to the economy, not to mention the performing arts and etc. which are on their last legs already. As for schools and education, now that the new variant seems to go for young people as much as older ones, more school closures are inevitable apart from the need to use school premises for vaccinations and testing of teachers and pupils. Home learning is all very well, but we already know that its main result will be to widen the gap between those able to take advantage and those without the basic level of computer equipment and quiet study space needed to make effective use of online learning resources.. The impact of the virus will go way beyond last year's dubious GCSE and A level results. It's not looking at all good.

21/12/20 One word...

Four letters, starts with R, rhymes with 'again'. Looks like another day shut inside.

Having some low back / hip troubles. Started a few days ago on the right, well round to the side, and has now moved across to the left side. Bad in the morning, gradually improves through the day. Purely muscular, I think, and not related to the myeloma. Anyway, I need to get a couple of bags of water softener salt in from the garage, and I'm leaving that until later in the day when it should be better.

As for the myeloma, my main hope at the moment is that I'm past the fatigue or dex crash or whatever of yesterday and won't spend as much of the day asleep either downstairs or up here in front of the computer. That's just empty wasted time when I could be doing something useful.

Still waiting for copies of consultant letters, oral surgeon appointments etc.. Probably close enough to Christmas now that nothing will happen until we're into the New Year.

20/12/20 (2) COVID tiers again

If we pay strict attention to the rules (stay in your local area and don't cross from one tier to another except for unavoidable reasons) we can't go more than a short distance for exercise and walks to the west, south, or east. That leaves the Tier Two corridor north to Dunmow so as it wasn't raining, that's where we went this morning after Pill Organisation. The planned walk from St.Mary's churchyard was a bit boggier than expected so we modified it a bit and got a reasonable distance in the end - made harder for me by having to push Victor through some deep gravel. At least his last punctured wheel is holding air OK, and the new drinks holder works. Felt shattered when we got home, complete lack of energy for a couple of hours and most of the evening as well. I haven't had a proper dex crash for a while, but that's what it felt like.

I don't suppose it'll be long before we're moved into Tier 4 (Tier 3 is effectively non-existent in London and the South-East now) and one benefit of that will be to free up movement in the other directions. Not that that's exactly the point! I'm just going to keep as low a profile as I sensibly can until I get vaccinated, and signs are that may not be until February.

All this sometimes makes me forget that my main problem is the myeloma I have got rather than some pernicious upstart virus that I haven't. But not for long.

Dunmow is the home of the restaurant Square One, and the young Head Chef there Alex Webb won this year's Masterchef Professional title. I hope it survives long enough that when this is all over we can book a table.

20/12/20 Wound Spray, etc.

No walk today, partly because of the inevitable rain. Spent the morning paying the weekly bills, making a batch of hard butter, giving the cat drinking fountain its weekly clean, and finally getting the drink holder fitted on Walter the Walker - the necessary parts arrived from Stefan in Sweden a day or two ago. In the interests of getting that done I've sacrificed the second stick holder on that side but I'm way past the stage of needing two sticks now and if I ever need to go back to it I've still got the parts.

Haven't mentioned the constipation issue for a while, which doesn't mean that it's gone away. Not much action for a day or two so I had a well-timed Fybogel a couple of nights ago (as well as the routine daily Senna) and that has sorted things out. No need, this time at least, to resort to Laxido. It's all about getting the timing just right.

I've been having trouble with finger (and thumb) splits. For quite a few years I've been prone to them especially when the outside temperature drops below 10C, but the skin-thinning properties of steroids (dex) makes me even more vulnerable to them. So I wear gloves - which, basically, I hate - whenever outside at this time of year and plaster my hands with various hand creams, none of which seem to make much difference. These splits are ridiculously painful consideing their size, and take a couple of weeks to heal. Regular applications of Vaseline work as well, and probably better, than anything else. I've also been getting splits alongside knuckles and on my wrists. The knuckle ones make moving the relevant finger difficult and painful, the wrist ones won't stop bleeding once they're disturbed. The blood thinner Xarelto doing its job, perhaps. Elastoplast Wound Spray, which squirts a layer of plastic over the "wound", helps once the bleeding has slowed.

(Off Topic) I've been greatly enjoying pianist Gabriel Latchin's new album "I'll be home for Christmas". Me, buying a CD of Christmas songs? It seems unlikely, but these aren't the usual superficially "jazzed up" versions. Most of them are by songwriters of "The great American songbook" and Latchin has got deep inside them and treated them with the respect they deserve. His versions strip out all the Christmasy schmaltz and relate the songs to the jazz traditions. They are, in short, simply brilliant, showing these familiar songs in totally new lights. Highly recommended!

19/12/20 (2) Off Topic - COVID Tiers

If anyone's wondering after today's announcements by the Prime Minister, we're in Uttlesford (as well as in Essex), if only by a matter of yards. Or metres. That means we are still in Tier 2 - for the time being... 

We are closely surrounded by new Tier 4 areas on three sides, with only a Tier 2 corridor up towards Dunmow allowing legitimate travel for other than essential reasons. I shall, for instance, continue to go to Broomfield or Springfield Hospital, both now in Tier 4 Chelmsford, when necessary. It's not going to make a huge amount of difference to our Christmas which was going to be a quiet one at home for just ourselves anyway. Fortunately all the planning and food-ordering has been done already so as long as the deliveries turn up on time there shouldn't be any big problems. Others, of course, will have had their plans thrown into complete chaos and one can only sympathise.

19/12/20 Consultant letters

I saw Dr.Zo (neurologist) privately late afternoon on December 2nd. Yesterday (18th), during a call to my GP surgery about something else, I discovered that they had not received his diagnosis letter - which explains why I haven't had the promised copy. That saved me a 'where is it?" phone call to his secretary, although I expect I'll make one early next week. My insider contact describes this delay for a private consultation as "simply unacceptable".  I'm inclined to agree.

On the NHS side, I saw Dr.Da on the 14th. My insider tells me that two to four weeks is normal for a letter to the GP (and, with luck, a copy to me), so that means I shouldn't be expecting anything yet. But why not? It seems reasonable to expect the consultant to write up his notes and dictate a letter within two or three days (if not same or next day) which means that with a moderately well-organised secretarial and postal system the letters should reach their destination within a week. And why are we still talking about the post? Have they not heard of email?

As so often, the NHS is superb on the front line but the administrative systems that underlie it all are antiquated, error-prone, and grossly inefficient. I could write a book - and if you put together all my posts elsewhere about my experiences over the last few years (going way back before my myeloma) - you would have a good start on one. 

I'm feeling a bit annoyed tonight, which is probably obvious. If I can manage to turn up on time for appointments all by myself, why can't the doctors with all their support people get the admin stuff done on a reasonable schedule?

No complaints here about any of the consultants I've dealt with at Springfield (or Broomfield) about my cancer. Communications with me and my GP have been fine - to the point where my GP has been heard to complain about the amount of historical detail he has toi wade through every time after the monthly 'phone consultation.

18/12/20 Matching Green

The rain let up a bit in the afternoon so I went off in the car more for a change of scene than in the hope of a decent walk. I ended up in the village of Matching Green and had a good walk - with just a stick and no walker - around the Green and up and down a couple of side roads.

Pills all back on the right schedules now, the only problem being that I appear to have mislaid one box  of gut health capsules. No doubt they'll turn up somewhere before long.. 

17/12/20 (2) Dex confusion

With my system of three seven-day pill boxes it should be impossible to take the wrong pills at the wrong time. Nevertheless, nothing is impossible. This morning (Thursday) I took Thursday morning pills from the Routine Meds box, Thursday morning's from the Supplements box, and Friday morning's from the Cancer box. Which meant I didn't take my dex when I should have done. So I took them this evening instead. That may produce an interesting night's sleep - or lack of it. I might be glad of my Netflix subscription later...

UPDATE: It wasn't too bad. Went to bed an hour later than usual, slept OK for three hours, then stayed awake thinking about one thing and another all the way to 08:15. I expect I'll catch up a couple of hours during the day. Probably won't be going anywhere much because - big surprise - it's raining again.

17/12/20 Dex morning

A good night's dex sleep until 06:30 when I woke up with the certain knowledge that I wasn't going to get any more. Probably only those who've been on dex will understand quite how that feels. So came through to my study to get an early start on the online news, email, etc.. Joined by Belle, who has started coming in here a lot more recently:

16/12/20 Bloods and Cafe

After two unanswered emails I 'phoned the Springfield Cancer Centre about my results from 3rd December, and that produced the usual email  a few hours later. The good news is that the paraproteins are still undetectable, the slightly less good (but probably insignificant) news is that a couple of the Free Light Chain numbers (lambda and the mysterious kappa : lambda ratio) are slightly in the red. But they've been there before and gone back to normal. My sixth COVID swab test came back negative.

Went for the "long walk" in Tower Gardens / Admirals Park / Central Park, had sausage rolls and coffees for lunch. The Cafe is now down to takeaway only, no seating outside but there are plenty of park benches around. Technically we were probably wrong in driving from Tier 2 (us) into Tier 3 (Chelmsford) for exercise, but we used judgement and discretion. Never got close enough to anyone for even the most minute risk of virus transmission.

10mg of Dex this morning (10 more tomorrow), so might be a fun night but at the lower dosage the dex doesn't affect me as much as it used to, particularly when I was on the higher doses.

Did my six-monthly update of RUDY (Rare Undiagnosed Diseases studY) by filling in near-endless tick-box exercises. I've also signed up for their "Prepare" study into Myeloma which will involve blood and urine tests at regular intervals over the next five years, as well as plenty more tick boxes. It'll give me something to look forward to, and if it helps understanding of the disease and development of new treatments, it can't be bad.

Nothing on the calendar for later today, apart from Sue having a dental appointment at 13:30 and probably not feeling much like a walk later. So if the weather permits, I'll do a local walk at some stage. Still haven't tested that troublesome Veloped back tyre so that should be a good opportunity. It seems to be holding pressure well while standing idle in the garage.

Look, no photos today!

15/12/20 The Tide is High

A bright clear sunny  morning so we decided to leave Dunmow for later in the week and head for the coast - or an estuary,  which is more or less the same thing in this part of the world. Maldon has been a favourite destination for a while, Promenade Park in particular. And for once we got there at high tide with the usual mud banks invisible below the water. It gave the place quite a different feel.

Lunch at the Lakeside Cafe was Christmas Slices - imagine a rectangular Cornish Pasty stuffed with turkey and the usual Christmas bits and pieces. Very tasty.

https://www.youtube.com/watch?v=BQU2SY_D31M

A bit more on topic, still no blood test results from  December 3rd coming through from Springfield, even after two emails. Maybe the labs are all too busy doing COVID tests, but I've never had to wait this long before, and it's always a rather nervous time. As the emails aren't working, I'll phone the chemo nurses in the morning.

15/12/20 Off Topic - COVID tiers

West Essex - where I live - is moving into the most restrictive Tier 3 because of the rise in COVID cases in our area, possibly related to the new mutant strain.  But that's not quite the full story - we come under Uttlesford not Chelmsford, if only by a few dozen yards, and therefore we remain in Tier 2. Of the surrounding towns, Chelmsford, Ongar, and Harlow are all going into Tier 3, and we are discouraged from going into Tier 3 areas except for passing through and "necessary” reasons including work, education, youth services, to receive medical treatment, or because of caring responsibilities". Shopping - even for food - is not included. The only nearby town with a couple of supermarkets and a good range of other shops is Great Dunmow. And that's where we plan to go later today, for a much-needed decent walk (rain permitting) and a bit of supermarket shopping.

14/12/20 Postural Tremor

That's what today's neurologist says it is. So  the score is 2-0 against Parkinson's but unclear as to which of the many forms of non-PD tremor I've got. Haven't had time to much reading about Postural Tremor yet. Treatment is likely to be the same as Dr.Zo talked about, i.e. beta-blockers. The new man, Dr.De, will put a request for an EMG (electromyelograph) through to the appropriate consultant neurophysiologist and assuming he accepts it, that will give us two tests (with the DaT scan) that should help to pin it down more precisely.

Today's doctor has the splendid first name Ravishankar (or Ravi Shankar, I've seen it written both ways). And yes, he was named after the great man.

Rain again. At every opportunity for a walk, the rain came back. Fortunately I had quite a long walk along the corridors of Broomfield Hospital as they shunted me around from one reception desk and waiting area to another. In total, an hour and ten minutes wait before getting to see the neurologist.

13/12/20 Drinks holders

A week or two ago I decided that it would be good to have a bottle/drink holder on each of my Trionic walkers. Be careful what you wish for...

What should have been straightforward has turned out to be anything but, and there has been intensive exchange of emails and photos between me and the very helpful Stefan at Trionic. He's now going to send me a couple of longer screws and some spacers which will allow the Walker bottle holder to fit over the lower cane holder on that side, which would otherwise have to be sacrificed.

Off topic? Well, if I didn't have myeloma and if it hadn't shown up by having such a big impact on my walking in the early days I wouldn't have the walkers so I wouldn't have the problem. Even now, although I can walk well enough on flat and familiar ground for shortish distances, the security and stability of a walker is a huge benefit. And I am, TBH, a bit terrified of falling and breaking one of my myeloma-weakened bones - still got those lytic lesions in there!

Here's an image from Stefan showing how you don't use both of the two obvious screw holes...

It's been raining all day. Depressing. Listening to Dexter Gordon on my Echo Show (Alexa) instead of going out for a walk.

12/12/20 (3) Still off-topic, and going round in circles

I've been searching for Central Orthostatic Tremor in preparation for Monday's appointment. I tried my usual high-privacy search engines without success, and did no better with Bing. So it had to be Google. Fifth place in the rankings: none other than Ian's Myeloma Blog, complete with a large selection of totally irrelevant images from here...

If this blog is the fifth best source of information about Central Orthostatic Tremor on the internet, then something's badly wrong somewhere!

12/12/20 (2) Mainly off-topic

More rain today. Spent some of the morning starting a Chicken Korma to go into the slow cooker for this evening (and tomorrow as well). The Broomfield appointment letter arrived at the last opportunity, and should make things easier when I get to the hospital.

There's a request in the Comments for more about Toasted Teacakes. Here's a photo, with one of them split and generously buttered (some people like jam on them as well, but teacake purists stick to butter):

There's a fairly typical recipe at https://www.bbcgoodfood.com/recipes/tea-cakes although there are many subtle variations. It's been a couple of years since I made some, maybe I should do it again - this is the ideal time of year for them.

12/12/20 Teacakes, phone calls, letters

Not much for yesterday. We dodged the showers and did the extended version of the short walk to the Central Park cafe and had coffees and toasted teacakes for lunch, if that makes any sense. Otherwise, kept on taking the tablets. The exposed jawbone caused by Zometa is now pain-free, but no sign of an oral surgeon appointment as yet. And although I now have an early and unexpected cancellation appointment for my NHS "Parkinson's?" appointment on Monday morning (about four or five weeks being a lot better than the 47 weeks I was warned to expect), but the appointment letter hasn't arrived yet. One more chance later today. I 'phoned Broomfield after yesterday's post arrived at about 4pm but got a brush-off because the appropriate staff weren't in. COVID, possibly. So I tried Central Referrals for the local trust and they couldn't help much but at least told me the request had originated from the Writtle Surgery (mine) so it has to be that appointment rather that the DaT scan ordered by Dr.Zo at Springfield, which is a lengthy business that takes four or five hours. I never intended the self-pay private side and the NHS side would run into each other like this but can't be helped, it would have been crazy to refuse this cancellation appointment and possibly go back to waiting 40 weeks or so. And that reminds me that I haven't had a copy of Dr.Zo's diagnosis letter yet. Maybe I should blame the Christmas post.

10/12/20 Good dex night

Because of the delivery problem, I took yesterday's dex after lunch rather than after breakfast (generally recommended to minimise sleeplessness). Went to bed half an hour later than usual, woke up after a bit less than four hours. All dex-normal. But then went back to sleep for another two and a  half hours - most unusual. Took today's dex at usual time, we'll see what happens tonight.

09/12/20 (2) Mystery appointment

Had a 'phone call from the Central Referrals people offering me a cancellation at Broomfield - 09:25 (early for me!) on Monday 14th. Because of the way the conversation went I assumed this was the neurologist appointment that I wasn't expecting for the best part of a year, but Sue correctly pointed out that it might be for the DaT scan ordered by Dr.Zo after my appointment with him at Springfield last week. We'll find out when the appointment letter arrives.

09/12/20 Interruptions and pill delivery

If yesterday was a day of frustrations, today has been about interruptions. I lost count of how many times I tried to start scrambling a couple of eggs for lunch, but someone pushed the doorbell, a 'phone rang, or an incoming email demanded attention. Or something else. But I got my lunch in the end, and after several 'phone calls in both directions a courier arrived with my delayed meds.

Because of the need to stay in until important deliveries arrived, I was down to a local walk this afternoon. Decided to take Victor the off-road walker from the garage rather than take the time to get Walter (the other Trionic walker) out of the back of the car. But Victor now has a very deflated back tyre... Not sure if it's a puncture or just a leaky valve - leaving that until tomorrow. Being convinced that changing to Walter would inevitably reveal another flat or some other problem to delay my exercise, I headed off for The Triangle with just a stick. It had to happen sooner or later. By far the longest distance I've done that way for a long time and it went well, apart from giving me a bit of an ache in the non-stick shoulder. Easy to forget that reliance on walkers does mean that some muscles don't get the work they need.

But main thing - the pills are here and I've started the next cycle on time, although the dex pills were after lunch rather than breakfast. That might have consequences for sleep tonight...

Another 'phone call from my new Case Manager at AXA HEALTH, my old one the very helpful Liz Cash having retired. On the surface he was having a friendly chat to introduce himself and as about how I'm doing, but I don't doubt that underneath he was looking for ways to save some money on me. So we played a round or two of verbal chess and I think we ended on a stalemate.

08/12/20 Delayed meds

Went into Springfield early afternoon for what would normally have been a Zometa drip, but this time just to collect the next package of pills. But there had been what I shall politely call a failure of communication between Dr.Ch (writing a new prescription on Sunday) and the pharmacy (failing to notice it on Monday), result being that nothing had been done. So I went away empty-handed and am now awaiting the arrival of a courier with the pills, promised later this afternoon.

After Springfield I drove to a nearby supermarket with low fuel prices to fill up the car, but their filling station was closed. Had to drive across Chelmsford for the next best instead. It's been a day of small frustrations like that, and once I got home and had some lunch, the fatigue / tiredness / exhaustion hit hard for a few hours. The weather doesn't help - just a degree or so above freezing, grey, with traces of overnight fog still lingering.

Well, tomorrow will be a dex morning, assuming I have any dex to take. I think I need a touch of dex mania to lift me out of a bad frame of mind today. And I haven't mentioned the heating oil delivery, which turned up early morning without - for the second time running - having sent the usual warning text the day before so the side gate and the oil tank padlock weren't unlocked in readiness. Good thing I was up.

UPDATE 00:20 on 09/12/20: No courier, no pills. I can't say I'm surprised. I'll wait until 11 or so before I 'phone the pharmacy. Tomorrow should be a dex morning, don't really want to leave that for later in the day (for sleep reasons) or for Thursday, which would mean taking all 20mg in one go as was the original plan. Splitting the dose over two days has made a small but noticeable difference.

UPDATE 11:50 on 09/12/20: 'Phoned the pharmacy, now awaiting a call back...

07/12/20 Fog, Pills, VitD, no Zometa

Fog and within a degree or two of freezing all day. Had to go to the GP Surgery to collect a prescription that I forgot about at the end of last week, so that let me complete Pill Organisation Day Part Two. Fitted in a shortish walk around Writtle Green and up St.John's Place as well. Enough to clear the lack-of-exercise guilty conscience from the last few days.

Had the monthly 'phone consultation with Dr.Ch. He wants to add VitD to the next round of blood tests to see if there's any need to take up the Government offer of free VitD, and he thinks I should get a COVID vaccination as soon as possible although there is still some (or a lot) of uncertainty as to how well any of the current ones will work in the immune-compromised. "Anything is better than nothing" seems to be the guideline.

As for the oral surgeons and the exposed bone in my jaw, he agrees firmly with those who say no Zometa until that is sorted out. The dentists are on their own in advising staying with it as normal.

05/12/20 (2) Floods

Went for a walk in Admiral's Park in Chelmsford, aiming for the Central Park Cafe but frustrated by floodwater across the path after a couple of days of heavy rain:

Although some were not discouraged from wading through:

We admitted defeat and retreated to the car before driving on to a different car park for the short walk instead. Cafe had far too long a queue so we extended the walk around the lake and called in at a small Tesco on the way back for a lunchtime sandwich. 

05/12/20 Oral surgeons

Just a story about oral surgeons, from some twenty-five years  ago. Every word is true. I had an impacted wisdom tooth that my dentist didn't want to deal  with because it was very close to a major nerve, so I was sent onto an oral surgeon. I made an appointment but when  I arrived I was told that the surgeon had died of a heart attack, and the envelope containing my x-rays was open on his desk. I made a new appointment with another oral surgeon but as soon as  he opened the envelope with my x-rays he emigrated to New Zealand. I don't remember what happened to the third one, but he disappeared as well. Later I heard that he too had died. Surgeon #4 gave me an appointment, did the job, and all has been well in that area ever since. As far as I know he's still fit and well.

My fingers are crossed for the oral surgeons at Broomfield. I really don't want to kill another one. Or two. Or three...

04/12/20 (3) Dentist

I saw my dentist this morning. There is a small patch of exposed bone in the angle of the jaw. The plan is to cut into this to generate some blood flow and promote healing of the bone and the gum that should grow back over the top of it. This would go uncomfortably close to nerves so I'm being referred to an oral surgeon at Broomfield. Maybe two weeks, the dentist says, which sounds rather optimistic to me! However, it's a lot less sore and occasionally painful than it was, so I should be able to stand the waiting.

She advises continuing with Zometa on the current schedule, which means having a drip next Tuesday 8th. I've emailed Dr.Ch (haematologist) to keep him up to date with things.

04/12/20 (2) Diverse alarums

Woke up at 06:15, so a bit under four hours altogether. Dex the night before is better than an alarm clock every time. Told Alexa to "cancel alarm", which she did. My phone is still in the bedroom as a back-up, must go and get it along with my normal glasses which don't work well for computer screen distances. I have a separate pair for that and they stay in the study. The clock-radio is permanently set  for 08:45 and it's just a one-button push to turn it on or off. Alexa is the best and most flexible of  all.

Temperature is 36.4, according to the new infra-red forehead thermometer. No need to get the digital in-ear one out and waste one of those little plastic caps. I cross-checked them yesterday and they agreed perfectly.

Now it might be time for a couple of Big Bang Theories...

04/12/20 (Bloods, dentist, and ECG)

Got my bloods taken at Springfield and filled the chemo nurses in on recent developments to do with dentistry and the mystery tremor. Also had my sixth COVID swab test done. Results for all that should be due next Friday so there's another nervous week of waiting to come. I should be used to that by now, but I'm not. Managed to fit a short walk into a gap in the rain which otherwise has continued hard all day.

Later today I have a dentist appointment and hope to get an idea of whether the recent problem in the angle of my right jaw is bisphosphonate-related or not. Also hoping that the chipped tooth can be ground down or filled or whatever is needed. Hope the answer isn't going to be yet another crown but I wouldn't be surprised. Have to get up a bit early to be ready for that appointment, but as it's a dex night I don't expect that will be a problem.

I'm advised by my old rheumatologist friend (and also by several websites) that an ECG might be another valuable diagnostic tool combined with the DaT scan. I think I might try to contact Dr.Zo's secretary later today to suggest that one might be added.

Tiny little cut on the last knuckle of the middle finger of my right hand won't stop bleeding and keeps leaving droplets of blood over the keys of my new keyboard. I get these from the skin-thinning powers of dex. This one just won't clot. Obviously my blood thinner (Rivaroxaban) is too effective...

03/12/20 Bloods and COVID

About to leave for Springfield Hospital for this month's blood tests, and I expect another COVID test as well. Will fit a bit of a walk in afterwards, if the infernal rain stops. Fingers crossed that the PPs and FLCs stay in remission territory.

02/12/20 (3) Week Four

Now starting the last week of Cycle Seven of consolidation / maintenance / whatever, which means no Lenalidomide for the next week but the dex continues. Last time we spoke Dr.Ch said many patients feel a distinct difference (less fatigued etc.) during this fourth week. Can't say I've noticed but will concentrate harder this time. Meanwhile, there's a dex night coming... I've emailed him a quick summary of yesterday's neurology meeting but there'll be a lot more in Dr.Zo's letter when it arrives.

02/12/20 (2) Not Parkinson's?

I had my appointment with neurologist Dr.Zo at Springfield today. He thinks I do not have Parkinson's but isn't prepared to go quite as far as saying I definitely don't have Parkinson's. He thinks what I have is Central Orthostatic Tremor. I have to say that I'm not totally convinced. It is a rare condition but he says he has often found it associated with blood cancers referred to neurology by haematologists, and thinks it may be caused by the myeloma treatment - possible side-effect of Thalidomide and Lenalidomide, although that doesn't explain some of the shakiness going back many years before myeloma. Be that as it may, the plan is:

I have a DaT scan at Broomfield (NHS).  Dr.Zo works there as well so this should - as I rather hoped - give me a shortcut onto the NHS side of things, and I won't have to involve my insurance. It's another glow-in-the-dark one with a radioactive tracer that looks at levels of dopamine receptors in a bit of the brain responsible for motor activity. That should go a long way to confirm what sort of tremor I've got. 

Treatment: probably beta-blockers to control the tremor, possibly gabapentin. Not the beta-blocker (Atenolol) that I took for years to help control blood pressure until we decided it was no longer needed. I've now been off all BP meds for a few years. Whatever he decides on (and after I've run it past haematologist Dr.Ch for possible interactions & complications) can be prescribed on the NHS, so no cost to me again.

Now I just have to wait for that DaT scan appointment to appear in the post...

02/12/20 Castle Park

 Yesterday was a bright sunny morning for once - very good for the soul:

We went for a walk in Castle Park (Bishop's Stortford), discovered a new route, and got a sandwich for lunch from the Posh People's Supermarket (Waitrose) which is a short walk over the road from the car park. Otherwise I've been preparing myself for the neurologist appointment later today, searching for Parkinson's and Essential Tremor and working out how to respond if the decision is that I have got early/mild Parkinson's and need some imaging etc. to confirm. A new private claim will cost me at least £1000 a year (loss of No Claims Discount and excess) on top of what I'm paying already, or I could self-pay again. Or wait the best part of a year for an NHS appointment. That will depend on whether things are likely to get significantly worse over that time scale, and the value of starting treatment early. All rather complicated. 

Nothing new on the myeloma front today.