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.

25/01/21 If...

Nothing much to add this evening. Working on the Myeloma UK Panel thing, but it'll take a couple more days to finish. The dex-related skin-thinning finger splits continue to be a problem in this cold weather - I keep on top of them to some extent but as soon as one lot clears up another lot start. The snow never came to much, but enough to keep me inside. The eternal constipation issue is OK at the moment on one nightly Senna but it won't be long before something more is needed.

Now starting to think about the next lot of bloods in a week's time. And I shall also have to report to my GP about the Propranolol by then.

Not happy about the 12-week wait for the second Pfizer shot. Thinking about a letter to my MP - will leave that to brew in my subconscious overnight and maybe write something later. Not that I expect to be able to influence government policy, but you have to do what you can.

Otherwise - something my wife said made me think about where I might be now if my GP had missed the signs and I had never been diagnosed with MGUS let alone Myeloma. That left hip lesion / plasmacytoma would still be there or worse, and others might have developed. I might well be spending most of my time in a wheelchair. More lesions in spine and elsewhere, maybe compression fractures of vertebrae, substantial liver and kidney damage... The plain fact is that I've been very lucky to have fended those possibilities off so far, and  it's only the pills that are keeping them away. Many MM patients have been far less fortunate.

24/01/21 Pills

 It's Sunday so it's Pill Organisation Day. Takes me the best part of an hour every Sunday morning:

Three seven-day four-compartment boxes. Blue for ordinary pills, green for supplements, red for cancer pills. Pity you can't se the pills inside - there are a lot of them....

Not good prospects for exercise today, as it keeps turning from rain to snow and back again. Might have to get the under-desk bike machine out again.

Finger splits remain a problem - as soon as you clear one lot up, a new one appears. It's mainly a holding operation until warmer weather comes. The Calendula helps, but it doesn't make them all go away.

23/01/21 Sausages again

Well. that went the way of all January resolutions. It turned out that we had some sausages in the freezer reaching the end of their time. At least they were venison...

Collected a new box of AdCal from Springfield Hospital, then on to Broomfield for the EMG. Plenty of room in the car park, probably connected to the restrictions on visiting during the pandemic. The test itself took no more than twenty minutes, with just three electrodes on my right arm. Apparently nothing seriously wrong but I got the impression that there were a few things not quite normal. We'll have  to wait for the report - and next week I must find  out if we've actually had a letter from the NHS  neurologist yet.

22/01/21 AdCal shortage

Five hours of dex sleep last night, which is not bad. Bright sunny day, feeling warmer than it actually is. Walked to Marks Hall Lane and back. As noted before, both pace and stamina are down a bit. Scrambled eggs for lunch, and a minor collapse afterwards.

Somehow I've managed to run out of AdCal tablets. I'm sure I had another box but I can't find it. Have contacted chemo nurses at Springfield to arrange some more, but no reply as yet. Won't be the end of the world if I have to miss a few days, but why do these things always happen at weekends?

UPDATE: I can collect more AdCal from the Springfield Pharmacy tomorrow between 0900 and 1200, but I'm due at Broomfield for electromyography at 11:10, so I have to do Springfield first. OK, it just means an earlier start then I had planned.

Pfizer injection reaction: some very slight soreness has developed at the injection site nothing else.

21/01/21 New glasses, dogs, Pfizer, and Research Panel

The 21st day of the 21st year of the 21st century...

No problems collecting the new glasses. They all seem OK so far, although the computer glasses and the main ones are rather more similar than I realised. There is a way of telling them apart by a kind of step in the side pieces, but unfortunately it's the other way round from the old ones. Some re-learning to do.

Went for a shortish walk up to Peppers Green Lane and on the way stopped on Parish Council business to attach a new dog waste notice I made to the gate across the farm track nearly opposite the house - we've been having increasing problems of that kind ever since the first lockdown back in March. While grappling with cable ties and high winds flapping the notice about I slightly misjudged a cut with the scissors and snipped the top of the knuckle on the middle finger of my left hand. Just as I was getting the last of my finger splits under control. It's a bloody mess now, even if it does look like the Mark of Zorro.

No after-walk or after-lunch fatigue episode today. Maybe I just didn't have enough time for one.

The Pfizer injections went very smoothly - on the button for times, not many other people in, lots of helpful staff pointing you in the right direction at each stage. No side-effects at all so far, not even any soreness at the injection site. And the walk from the parking site to the Medical Centre and back added some good steps to my daily count.

To add some Myeloma relevance to this post, I've just received my first task from the Myeloma Patient & Carer Research Panel. Here's the beginning of the email:

Dear Patient and Carer Research Panel member,

I hope you are doing well and keeping safe at this time. We’ve had a request come in from researchers at University College London who have designed a trial for a new CAR-T treatment. They would like patients to review their study and give feedback.

New study: MCCARTY study

A study to trial a new treatment for myeloma called CAR-T.

Who is conducting this study: Professor Kwee Yong together with colleagues at the CRUK/UCL Cancer Trials centre.

I'm told it will take two to  three weeks to complete. I have to read and comment on a densely written 28-page .pdf. So any time in that range that I post without mentioning Myeloma, you'll know what I've been doing!

20/01/21 Fatigue

First day combining Propranolol with Dex. No obvious problems apart from having another of those after-lunch fatigue episodes. Only for half an hour or so but I think they qualify for the name because they go well beyond normal tiredness or even exhaustion. I just can't find the energy to do a thing until it passes, and that includes lifting a finger. Hard to imagine what it would be like to have that all day...

UPDATE 21/01/21: Went to bed 02:15, up and in front of the computer 05:45. Three and a half hours sleep. Later this morning, to Specsavers to collect new glasses, and in the afternoon, first Pfizer injection. Looking forward to that! Possibly a fatigue episode between the two...

19/01/21 (3) Pulse Oximeter etc.

Pulse Oximeter readings this evening bouncing about all over the place between 99 and 95. Not sure what that means. Could be anything from "You need new batteries" to "You need a new oximeter". It's also claiming pulse in the high 70s when it's actually mid-50s.

I took the batteries out (almost certainly the rubbish ones supplied with it) and replaced with a couple of used Duracells I had lying around. It eventually settled on 98 and 55, which is an improvement. I'll see if we've got some new ones in stock next time I go downstairs.

Temperature is OK at 36.4 C with the infra-red thermometer, and BP is 101/58. Nothing wrong with that.

UPDATE a couple of hours later: I put a couple of new Duracells in the oximeter. Readings still jumping around (although not so much), eventually settling within a point each way of 97 and 54. Those are OK numbers but I've never before known it do anything but give a straightforward reading with no variation. I can't believe my blood is that variable almost second to second, so it looks as if the oximeter itself may be failing. Off to Amazon again...

19/01/21 (2) Propranolol again

We did the long Admiral's Park walk this morning. Well, strictly speaking it's Tower Gardens / Admiral's Park / Central Park. Then coffees from the Cafe because for once there was both no queue and an empty bench overlooking the lake. I did the outgoing leg fine, but on the way back we were a bit into the wind and I found it really hard. Had to stop for a break at one point when I was starting to feel a little breathless. Not at all as usual and I think I have to point the finger at the Propranolol. Reduced heart rate and BP must mean reduced oxygen transport to the muscles. I've just checked my oxygen  saturation, which is a little down at 95%. No panic just yet, but will aim for a few more good walks to see if this continues or whether I'll adapt to the new drug.

Anyway, we got home, had a quick lunch, and then I had a real fatigue burst. Couldn't find the energy to get out of a chair or do anything. It only lasted an hour or so, and some of that was asleep, but as bad as I've had. The tremors are reduced but still there, and I can foresee asking Dr.Ku to switch me to a lower dose, or maybe a different beta-blocker.

Feeding the seagulls on the lake:

19/01/21 Beta-blocker side-effects, and EMG

The Propranolol has certainly had an effect, even on Day One. Blood pressure 95/65 (I usually average around 110/70 or a little higher), and heart rate down to about 50 from 65 or so. In other words, back to more or less where I was when I was taking Atenolol (another beta blocker) and Felodipine (calcium channel blocker) for high blood pressure, which I did for several years before gradually coming off them two or three years ago. I coped OK with those sort of numbers back then (no fainting on standing up quickly, or anything of that kind), so I don't anticipate problems now. My Blood Pressure Interpretation chart puts 95/65 just about in the middle of the "Ideal Blood Pressure" zone:

I had a 'phone call today from the NHS at Broomfield Hospital.with an appointment this Saturday for an EMG (electromyograhy) test. This looks at nerve conduction to the muscles and helps (I hope!) to differentiate between the various possible causes of the tremors - Parkinson's included. I'm still not 100%^ convinced that Parky's can be ruled out completely. 90%, maybe. The interesting thing is that when neurologist #2 (the NHS one) ordered this test at my request he said it would have to get past a couple more specialists and he obviously thought the chances weren't good. And getting into a hospital these days for anything other than COVID isn't easy...

But still waiting for Dr.Zo's DaT scan, not to mention an oral surgeon..If I follow my dentist's instructions, I have another fortnight to wait before getting her to chase that up...

18/01/21 Hylands and vaccines

One of the listed side-effects of Propranolol is tiredness and sleepiness. If today is anything to go by, I've got both, or even  more of them than usual...

Had my walk in Hylands Park today, concentrating on the woods and gardens rather than the house and open park.

And the best news - first COVID vaccination (Pfizer) now booked for this Thursday afternoon. Very pleased about that, although less than sure about delaying the second shot for twelve weeks rather than three.

17/01/21 (2) Propranolol

Finally got  an email reply from Dr.Ch (haematologist). He says OK to the beta-blocker propranolol to control the Parkinson's-like tremors, so I start on those tomorrow morning. Another whole batch of side-effects to watch out for! 80mg Long-Acting, for anyone who's interested.

This molecular model takes me right back to school chemistry lessons:

17/01/21 Sausages

A much better and brighter day today - temperatures up around 6 or 8C, blue sky, sunshine. Almost a spring-like feel in the air, which lifts the spirits no end.

We did the short Central Park walk plus once round the lake and that was enough for me because I've somehow tweaked whatever it is in my right shoulder and neck again, making pushing the walker rather harder than usual. I feel I want to have my right arm free to swing, rather than stuck to the handle of the walker. No coffees again - the Cafe is open for takeaways but the queue was far too long.

Diet: Obviously eating well is important for anyone with a disease like mine. I don't attempt anything too extreme, just try to eat reasonably sensibly and keep my fruit and veg intake up a bit. But it doesn't always work out... A couple of days ago we had a little treat of sausage rolls for lunch. Then four more arrived as a totally unexpected gift (along with other stuff) from a friend of Sue's, so that was another two lunches including today's. And we have sausages on the menu for tonight. So here's a delayed New Year Resolution: no more sausages or sausage rolls for the rest of January!

Tax returns finished and submitted - I found a way around the problems I was having with the HMRC website. That makes me even happier!

16/01/21 Snow?

The forecast snow did arrive early morning, but barely 4mm of it, certainly not 4 inches, and most of that is melting away now. Forecasters fail again!

Of course bad weather in these parts means power cuts and we had one but only for half a minute or so. A 'phone call from the power people said only some properties affected. Looks like I may get a local walk in after all.

And one more, taken through a rain-streaked window:

I doubt that we'll see the men working on pavement repairs opposite will be back for a day or three.

UPDATE: Walked the triangle - still a lot of floodwater around, but no more snow after this morning's very light fall.

15/01/21 New local walk

A dry day at last so went for a different local walk - towards Peppers Green Lane but then left along Fountain Road towards Good Easter as far as to the bridge over the Can and back. I've been avoiding this route as it includes the closest thing to a hill we have in this part of Essex and I didn't want to have to push a walker up it. But Sue forced the decision and I found the return uphill bit much easier than I expected, so I may add this to the regular routes.

Still no email reply from Dr.Ch despite following Sarah's (secretary) advice to try again. Also nothing from oral surgeon, nothing about DaT scan from neurologist #1, and no diagnosis letter or news  about EMG from neurologist #2. I know COVID is taking priority over everything else, but that doesn't mean that everything else has to stop completely. Or does it?

Weather is likely to make outdoor exertions impossible tomorrow - up to four inches of snow forecast from the early hours of the morning onwards. All the forecasters seem united on this one, so perhaps they'll be right.

14/01/21 (2) Home gym & Calendula

Rain all day - we have the worst floods here for 25 years, or as far back as anyone I've been in contact with can remember and it may well be worse tomorrow, so I got my under-desk bike machine and the dumbbells out to get some blood flowing around. I hate this kind of forced exercise but something had to be done.

Some Calendula cream arrived from Up The Jungle, as recommended by my sister (who is entirely free to use the Comments, BTW!) for those finger splits. The worse ones are doing a lot better with the silicone finger protectors, so I started a trial on one of the lesser splits. Early signs are good, and it's less greasy than Vaseline, which is a plus point.

14/01/21 Another wet day, and Netflix

Got up at 06:00 under the influence of the demon dex, caught up on some Netflix (still haven't reached the end of The Big Bang Theory but it's getting closer), That makes a bit under four hours, about half an hour short of a normal dex night sleep. I'll probably catch up on it later because the rain is pouring down outside, and the "overflow" area for the farm reservoir at the back is full up again. So it looks like another day confined to barracks.

Dr.Ch's secretary Sarah 'phoned me about a time for the next 'phone consultation so I asked her about getting in touch by email - normally quite efficient but not this time. She suggested one more try - which I did with highest priority - and she said that he is "around" in Springfield but of course everybody is under great pressure from COVID at the moment. So we wait and see...

13/01/21 Nothing new

Nothing new today. It's been wet, cold, grey, and miserable so skipped the daily exercise and hoping for a better day tomorrow. Dex night tonight, so anticipating an early morning. Still no reply to several emails to Dr.Ch so I suppose he must be out of reach for some reason. I think I'll phone his secretary tomorrow.

13/01/21 "Local"

COVID again, but a reasonable amount of fresh air and exercise is also important for "mental health" and coping with myeloma. So Dr.Ch once said...

There's been a lot of very reasonable criticism of the vagueness of the Government's guidelines about staying "local" for exercise. What exactly does that mean?

(Digression which will mean little to readers outside the UK: I've just noticed that Michael GOVE is also the beginning of GOVErnment. There is significance in all things...)

In Northern Ireland, 'local' is defined as 10 miles from home. That would put Admiral's Park and Oaklands Park, both in Chelmsford, within our range.

In Scotland, the definition is five miles from your local authority boundary. We live a matter of just tens of yards from our boundary, and Admiral's Park is six miles away, Oaklands a little over seven. So they would both be outside our range. Staying inside our local authority area and a five mile limit, there's very little offering a decent distance apart from walking along a road and for all sorts of reasons we try to get off the roads whenever we can.

So if the GOVErnment decide to define "local" more precisely, I'm hoping they follow the NI model rather than the Nicola Sturgeon one. Because of the way the politics play out (Boris will not want to be seen as following the SNP), I think that's the likelier outcome.

12/01/21 (3) Patient and Carer Research Panel

I'm now a member of Myeloma UK's 'Patient and Carer Research Panel'. Not  entirely sure how much time and/or work that will involve but good to have an opportunity to put something back.

12/01/21 (2) Bloods Jan 21

The most recent set of blood test results are in - Paraproteins still undetectable, Free Light Chains all in normal ranges, and everything else either normal or close enough not to be a problem as far as I can see, all things considered.  Relief! Now three weeks off worrying before I start getting all paranoid about next month...

Forgot to mention today's exercise - down the road, turn left, and back across the fields and along the farm track. Not a great distance even by my standards, but enough. Got home to find that Dr.Zo (private neurologist) has at last sent his bill in....

12/01/21 Vaccination starts

Our GP surgery has received a batch of vaccine (I don't know which one) and is starting vaccinating the over-80s in age order, as far as possible. No idea how long it will take to get around to Group 4 (that's us) or whether the extremely vulnerable and/or just plain vulnerable will be prioritised above the healthy over-70s. Without actively wishing to delay anybody else's vaccination, I hope so!

11/01/21 Toenail

A better day today, and not only because the temperature got up to 6 and even 8 C for a while, going by the car's external temperature sensor. However, shortly after getting up I was afflicted by a pain in my left #2 toe making walking very difficult. Once I'd made it from bathroom to study I performed minor surgery on the toenail with the scissors on my Swiss Army Knife, and all has been well since then. So I can be reasonably sure of no sinister manifestation of a myeloma bone lesion in my toe, no matter how painful it was at first. And it was...

Went out to refuel the car (that's my excuse, and you need one to leave the house these days just in case you come across an over-zealous policeman) and stopped off at the Tower Gardens car park for my daily hour of exercise. I  did the "long walk" to the Cafe, around the lake and back, and only sat on a park bench (another act now of questionable legality) for a couple of minutes. The walk took me five minutes or so over the hour...

Nothing new on the myeloma, but I should get the complete results from the last blood tests tomorrow. As usual, it's a bit of a nervous time knowing that the paraproteins will start going up eventually and just hoping it won't be this time.

The Central Park lake in fading light:

10/01/21 Lazy day

Rather a lazy day today. Did the Pill Organisation thing in the morning,  had a home delivery lasagne and lemon tart for lunch, dozed a lot, and caught up on some Netflix. Very cold all day again, although a degree or two up on yesterday. Waiting for an email back from Ch about Propranolol and various suggestions for treating the finger splits - but pleased that they seem to be improving with the silicone finger protectors. There again, the furthest I've been outside today is from the back door to the bins, which must have helped.

Must do better on the exercise front tomorrow (it's forecast to be significantly warmer tomorrow) while we're still allowed out of the house at all. The car needs filling up so I'll aim to combine that with the long walk in Admiral's Park. Meanwhile, still no news on the vaccination front. The GP surgery website says "

Please don’t call about the Covid-19 vaccine
The NHS will contact you when yours is available"

which is all very well but it would help to have at least some projections of the likely dates for the various categories.

The only myeloma relevance I can find today is a piece in the Telegraph arguing that those with rare diseases have missed out somewhat with the algorithms used to decide the order in which groups and individuals will get their vaccinations. For instance, all cancers are lumped together although some may have much greater vulnerability to COVID than others. OTOH, the shielding instructions a lockdown or two back separated blood and bone cancers out from the rest. So it doesn't all make a great deal of sense.

09/01/21 Pain au chocolat and car crash (not mine!)

A bright clear sunny morning - although by no means a warm one - so we risked the wrath of the police by driving more than five miles (although no more than seven) to do the extended version of the short walk in Admiral's Park for our daily allowed exercise. The queue at the Cafe was too long, or we might have had an illegal "picnic" of two coffees as well (all that refers to an incident in Derbyshire yesterday when two women were accused of these heinous crimes and fined £200 each). I'm not alone in feeling that the Derbyshire rozzers are taking these things more seriously than they should, even in these difficult times. There's nothing to be gained by making a laughing stock of themselves.

Strange weather on the way home - as we climbed the hill out of Boyton Cross it was like going up into very low-lying cloud and it stayed misty / foggy / cloudy for the rest of the day.

After pain au chocolat for lunch (with Frank Cooper's Oxford Marmalade for a truly mixed European experience) I gave the cat drinking fountain its weekly clean and made some butter - not easy with four silicone finger protectors on my right hand and one on my left. After that and the walk I had a bit of a weekend dex crash and slept for an hour or so. Stamina is definitely not what it was and I get tired far too easily. Fortunately it doesn't take all that much to recharge the batteries.

Bad car crash at the other end of the village today, road closed for several hours. DIfficult conditions with temperatures around freezing all day. PHOTOS HERE

Time for me to go downstairs and start on my signature pork loin dish for dinner...

08/01/21 Finger splits again

I got some of these silicone finger protectors from Amazon. You get three different sizes in a pack. They're quite tight-fitting and you can roll them on rather like - well, I'll leave that to your imagination. Now typing with three of them on and they're hardly interfering at all. Vaseline on the splits underneath of course.

07/01/21 (2) Finger split meds

Not much today. I've had a couple of suggestions for things to treat those finger splits - one over-the-counter vasodilator and one prescription  calcium channel blocker. I'm running them past Dr.Ch to check for interactions with my myeloma meds.

Today's exercise - once around the local triangle.

Last night was a dex night. As usual these days woke up (and got up) early, after four and a half hours sleep. Another one tonight.

07/01/21 Finger splits

I've been used to splits at the ends of fingers and thumbs  for years. Usually they start when the temperature drops to 10C, and that's when I start upping the hand cream and wearing gloves outside. My right thumb has a couple which I think never really heal properly and open up again at the first opportunity. For such small things they can be extraordinarily painful for a few days. The only treatment that sort of works is to keep them covered (not always easy) with plenty of Vaseline. And that takes a couple of weeks at the least to go away.

The cause seems to be low temperatures aggravated by the skin-thinning properties of dexamethasone (of which I took 10mg yesterday morning, with another 10mg due later this morning).

Recently, as well as the finger-end ones (I have one healing and another just starting up) I have had them on the sides of fingers as well, on or adjacent to knuckles. I've just counted six. The trouble with these is that every time I bend an affected finger it flexes that area and opens up the split again so it doesn't get a decent chance to heal and these ones take even longer than the finger-end ones to get past the painful stage and go away.. Immobilisation plus Vaseline is the obvious answer but wouldn't improve my keyboard skills or my chef abilities.

Here's a photo of my right first finger. Apologies for the flash shadow but it was needed to get a decent amount of detail while holding my phone in my left (non-dominant) hand.

06/01/21 B12, RUDY, Propropanol

We had a walk and coffees in Oaklands Park this morning - also wearing in a new pair of shoes for muddy walks. Then off to the GP surgery in the afternoon for my regular B12 injection and a blood sample for the RUDY research project - that was a lot simpler than figuring out the instructions for the biosecure packaging, which took a lot longer than I had anticipated especially as the nurse said "I do lots of these..." Perhaps not with the same packaging. Mine is now safely in the post to Oxford.

Also picked up a copy of the neurologist letter, which turned out to be from Dr.Zo (private) rather than Dr.De (NHS) as the secretary had told me. And collected the prescription for Propranol (80mg slow release to start with) but waiting for haematologist approval before starting them. I've emailed him just in case he hasn't got the letter through the normal processes.

Tomorrow, eye test at Specsavers...

06/01/21 Springfield pharmacy and rings

I collected the next four weeks' bag of meds from Springfield - they threw in a pack of Omeprazole (which they know I get from the GP) and one of Metoclopramide (anti-nausea) as well. Maybe they're over-stocked and trying to get rid of it... No walk on the way back because the weather was too foul. I went home and turned 600ml of double cream into two tubs of spreadable butter instead.

No phone call from Dr.Ku. Perhaps he was at the Parkside Medical Centre furiously getting everything ready for the mass vaccinations next week. We'll see if anything happens later today.

A small thing: I usually wear two rings, my wedding ring in the usual place and a small signet ring that belonged to Sue's father in the corresponding place on my right hand. I took them off round about a year ago as I have to use a lot of hand cream (because of the dex skin-thinning, as well as the cold weather) and it annoys me by getting trapped under the rings. Yesterday I decided I'd had enough of being without them and put them back, along with another ring that celebrated my 65th birthday. And there's another one coming, but more about that when it arrives...

It's been a while since I posted an image. There hasn't been enough of a reason, or I haven't found one good enough. So this will have to do.

What's the reason for going back to the rings? Just enough time gone by? Vanity? Something else? "Taking back control"? I really don't know...

05/01/21 Pharmacists

Mid-day, and waiting for the call from my GP which was supposed to be "9ish"... If the receptionist who made the appointment was right, all he wants to talk about is whether I can get Metoclopramide (anti-nausea) and Loperamide (anti-diarrohea) on prescription. I don't need either (and have several unopened packs) but the Springfield pharmacy insist on handing them out every third or fourth month. The only way I can stop that is by convincing the Springfield pharmacists that I can get them through my GP - as I do with another two of the supporting drugs (Omeprazole (protein pump inhibitor) and Xarelto (blood thinner)).

Horrible day outside - thermometers agree on 3C but it's wet and feels bitterly cold. I may stop off at Admirals Park for a short sharp walk on my way back from Springfield this afternoon, depending on the rain.

I gather that batches of the Oxford vaccine will get to "local hubs" at the start of next week. So far it's only in hospitals (and possibly some care homes). So that gives us a starting point for vaccinations at our local centre, I hope. The GP website still hasn't been updated since 15th December, which I think is not very good. If they want to stop people clogging the 'phone lines to ask about vaccination (and they say they do), then the sensible course is to provide the information by a different route.

04/01/21 Dentist again, & lockdown #3

All went OK with taking the bloods at Springfield this morning, and I got them to add vitamins D and B12 to the usual list. Then to the dentists, where I let myself get thoroughly annoyed by having to wait outside in the car for the best part of forty minutes before being called in. The news is that the patch of exposed bone - which is no longer causing me any problem at all - is looking pretty much unchanged and still healthy. I had been hoping that it had miraculously healed itself, but no such luck. The nearby tooth which had flaked off another bit will need a crown once the jawbone is sorted out. She ground the sharp bit down a little, which is an improvement.

Had the monthly 'phone consultation with Dr.Ch this evening, and we spent most of it talking about the vaccination rollout - which means no big myeloma concerns at the moment. He's seen most of the results from this morning's bloods (but not the PPs or FLCs of course) and has authorised the next package of meds, which I'll pick up from Springfield tomorrow. I asked him one question - as all my white cell numbers are normal or very close, does this mean that my immune system is only mildly (or even minimally) compromised or in a worse state than that? Short answer: as for bacterial infections, probably still pretty good; as for viral infections, really no way to tell. Which is about as helpful as I expected...

Well, after Boris's 8pm announcements, here we go again. Full lockdown, tier 5, whatever you call it. It isn't going to affect us anything like as badly as it will affect many - probably most - others. The unfairness, and this has been true all the way from last March to here, is that Sue (being merely clinically vulnerable) has to do more of the extra shopping etc. than I get to do because I'm clinically extremely vulnerable. At least for much of last year's first lockdown we could get out into the woods and fields but that's less tempting now because the fields have turned to mud and the temperatures are near-freezing. If we get the forecast bad winter there'll be snow and ice as well. I foresee a couple of cases of cabin fever coming up. I think we'll need all our reserves of patience, especially while we're waiting for vaccination. By mid-February for the first shot, Boris tells us. Maybe sooner, if yesterday's Matt Hancock letter is to be believed.

03/01/21 COVID v Myeloma, and no vaccination news

We did the short walk into Central Park - under Tier 4 the Cafe is take-away only and the queue was too long to wait for coffees so we just circumnavigated the lake and went back to the car park. Slight rain on the way back but not enough to worry about.

Myeloma? I barely think about it much of the time, apart from remembering to take the tablets and the constant monitoring of the state of my bowels. It's all about COVID-19, and with the new more transmissible strains, the case and death numbers at horrifying levels, some hospitals close to breaking point - well, that's what you think about most and what dictates what you can and can't do. And it's now getting closer - although no close friends or near neighbours have got it yet, there are now several slightly more remote people we know who have gone down with it. Fortunately none too seriously, so far. But the paranoia level is definitely turned up a notch or two.

As for vaccination, our GP's website hasn't been updated since December 15th when they announced plans to work with the rest of the local Primary Care Network at a medical centre on our side of Chelmsford which is apparently appropriate for social distancing etc.. No detail at all on delivery of either the Pfizer or the Oxford vaccines, no hint of appointment dates or anything of that kind. This morning I had an official COVID letter from Matt Hancock which clearly states that the extremely vulnerable (i.e. me!) will be vaccinated before the general population, which goes against the usual information that over-70s with underlying conditions will be in Group 4 after frontline health workers, care homes, over-80s, and over-75s - all whether vulnerable / extremely vulnerable or not. That's from memory, I may not have got it quite right. I just hope that just for once in this whole pandemic the government knows what it's doing and will get everything right.

To get back to the point, there seems now to be general agreement that myeloma patients should have COVID vaccination, on the basis that it can't do any harm and any level of protection is better than none. Still little if any specific information available on the efficacy of any of the vaccines for the variously immune-compromised. I shall certainly get my shots at the first opportunity.

02/01/21 Diary and RUDY

We did get that walk in - a local one across fields, round a nearby farm, and then back along the road where we did some litter picking. It's a pity nobody else has that much of a social conscience...

Again, nothing new on the myeloma front except that the SFL treatment worked again. I'm just in that stage of waiting for the next blood tests and results along with the next bag of pills. It's the unavoidable rhythm of this disease.

Next week is quite busy. I have to go to Springfield for the blood to be taken on Monday (must remember to ask them to add VitD and maybe B12), then I have the dentist in the afternoon to check up on the exposed bone and the chipped tooth, and at some point there will be a 'phone consultation with Dr.Ch. Then on Tuesday I have a  scheduled 'phone call from my GP and another trip to Springfield to pick up next month's meds (but not for Zometa at the moment, because of the jaw problem). On Wednesday I go to the GP surgery for my regular B12 shot and for a RUDY blood sample. More about that in a moment. Thursday has an eye test - because I have both early cataracts and early signs of AMD (fortunately not progressing, so far) I now get called in once a year. I expect that'll mean new glasses again.

Can't remember whether I've written about RUDY before - the Rare and Undiagnosed Diseases studY. I've signed up for a five-year myeloma research programme which involves regular blood and urine tests. For this first one at least I have to get the GP practice to take a blood sample which I then send off to RUDY in Oxford - they've provided some rather impressive biosecure packaging for the purpose and the practice gets £16 for taking the sample.

More here if anyone's interested: RUDY

01/01/21 New Year's Day

I can't let today go by without posting something to start another year, even though I have nothing to report. Too cold and miserable a day to go out so I spent the time working on our tax returns and watching a bit of TV. Finished the evening with Fybogel and Laxido, which will probably be the way every week or so for the rest of this year...

Sue and I are agreed that we really must get out somewhere tomorrow for air and exercise.