31/01/21 Writtle, floods

Pill Organisation Day again today, and I did it in forty minutes, which may well be a record. However it may not count because the job wasn't complete - I have a couple of things to collect from the GP pharmacy, which I'll do tomorrow after bloods at Springfield.

Rain overnight, but a dry morning sent us for a walk in  Writtle, combining that with a stop for some shopping at the Co-op (as usual Sue went in, I stayed in the car being one stage more vulnerable to COVID than she is).

Due for a 'phone consultation with Dr.Ch at 09:00 tomorrow, although according to normal form it'll probably be rather later. I don't have any thing much to tell him this time.

It's been dry here today but there's been a lot of rain over the last few days. This photo of the River Chelmer way over its banks was taken from today's papers and identified simply as "near Chelmsford":

30/01/21 (2) MCARTY study feedback

Got this task from the MyelomaUK Patient & Carer Panel finished and emailed off  well before the deadline. And now I have another one lined up to do...

30/01/21 Nothing much, and plumbing

Things just ticking over as normal. Another wet foul day, so I shan't be getting much exercise unless the rain lets up later in the day.

Made a batch of spreadable butter, the cat drinking fountain's in the dishwasher along with the Thermomix bits. Next job is to get the PAC code for transferring my mobile number from me to O2. Getting the code from EE was easy, but the next stage is throwing up all sorts of complications... And, of course, I keep taking the tablets.

I could write about the EU and the Vaccine Wars that are breaking out. But all I'm going to say is that I'm glad we're not in the EU any more.

LATER: Plumbing problems. Yuck. And that's all you need to know...  Myeloma or not, "normal" life carries on, in all its multifarious delights.

That's the guy I needed. Some chance, at a weekend. Do It Yourself!

28/01/21 (2) More bloods and new phone

Not much today. Walked down to Marks Hall Lane, but the main purpose of that was Parish Council business about the flooding we've been having and taking lots of photos for the various Council people we're getting in to try to sort some long-standing drainage problems once and for all. Including finding out where some of the drains  go. Our house is not threatened, BTW. Otherwise, made some hard butter, took some pills, took some more pills...

Next 'phone consultation is on Monday 1st, and then to Springfield for more bloods to be taken, and presumably another COVID test. They didn't do one last time - whether on purpose or accidentally I don't know. I certainly didn't think about it at the time or I would have checked.

Continuing with normal life, busy setting up new phone (Samsung S21 Ultra). Now transferring lots of stuff wirelessly from the old one (Galaxy S9), then I have to deal with porting my number across. You have to find excitement where you can in these endless lockdowns. It's the one on the right:

The government's pack of free Vit D pills arrived today -  IIRC they're being sent out to all "clinically extremely vulnerable" who request them.

Also now waiting for a contact from MyelomaUK's "Advocacy Panel" which I've applied to join. These are the people who argue the case for recognition of myeloma with people of influence - MPs, top people in the NHS, and etc.. I've got through the first stage but I'm not too confident I'll get any further, but it would be a good way to put something back, so my fingers are crossed.This blog will form some of the evidence for my ability to write decent English and make a reasoned argument...

28/01/21 Dex night, NICE, Propranolol

Three hours. Not one of my better dex nights. Back in front of the computer again.....

A little bit of swelling in the right ankle this morning. Last time around that was the "better" of the two. I've got some 40mg Furosemide in stock if needed.

Some good news from NICE this morning:

Myeloma UK welcomes NICE approval for the first maintenance treatment for myeloma

The National Institute for Health and Care Excellence (NICE) has recommended the use of lenalidomide as a maintenance treatment for newly diagnosed myeloma patients in England and Wales who are eligible for high-dose therapy and stem cell transplantation (HDT-SCT).

This is the first maintenance treatment for myeloma to be made available through the NHS and is currently considered the global gold standard for HDT-SCT eligible patients.

I'm about to start my 10th cycle of Lenalidomide maintenance (plus dex) and when I started it could only be obtained privately at my early stage. That's one of the main reasons why I went private. It's working for me, keeping the PP and FLC numbers down and the beast under control so I'm delighted that it will now be available to many many more myeloma patients.

Keeping an eye on heart rate and BP during what are still early days on Propranolol. BP this morning (after being up for a couple of hours) 101/60 - bang in the middle of "Ideal" on my chart, although perhaps a bit on the low side for my age. Heart rate 53. As the initial effect of propranolol on the tremors has faded away, the obvious option would be to increase the dose (Dr.Zo's letter advised 80 - 160mg and Dr.Ku said to start with the lowest) but I'm not sure we should take BP and heart rate any lower. Anyway, I have to write a report for him later today and push it through the surgery's letterbox.

27/01/21 Insurance

I got my renewal quote for my private health insurance, which includes "Comprehensive Cancer Cover" which has been really good for me. Up by 37%! I got straight on the phone and negotiated a reduction to just 6% although I have now increased the excess (which is payable at the start of every policy year unless there are no claims) from £250 to £500 - effectively an increase of £250. So I'm as happy about that as I'm ever likely to be about a premium increase where I don't have the option of moving to another insurer - simply no way I'd get comparable cover for my myeloma at a remotely realistic price, or at all.

We then got my wife's renewal letter. Up 61%. They're having a laugh... Spent the evening on the comparison sites and have found several good-looking alternatives at or below what she's currently paying. More research to do, but it pays to shop around!

Just up to Peppers Green Lane and back again. And a dex night tonight...

26/01/21 Haggis

No news of any significance about yesterday. Temperature stayed close to freezing all day, so exercise limited to a quick (well, relatively) push along the main road to Peppers Green Lane and back before my fingers got cold enough to start another round of splits. It was Burns Night, so we had the traditional dinner and I had a wee dram of Johnnie Walker Blue Label to go with it. Later today I'll make some sort of haggis fritters out of the leftovers.

The haggis came from Marks & Spencer under their brand name, but close inspection of the label showed that it was actually a MacSweens product. That's the One True Haggis for haggis lovers, and Sue and I are both that.