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:

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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!