Woke up 07:00 in a Dex-ish sort of way although not a dex night, i.e. might as well get up because no chance at all of a bit more sleep. Quite a thick fog outside:
It should have cleared by the time we've had breakfast and organised the week's pills. After that it'll probably be Oaklands Park for the oficial one hour of exercise a day.
Apparently March is MYELOMA AWARENESS MONTH. Who knew? Not me for one.
Anyway, Sue and I have both signed up for this, and I think we'll just about be up to the challenge...
<https://www.myelomacrowd.org/muscles-for-myeloma-march-2021-fitness-challenge/>
Another fine morning, with some real heat in the late February sun. We went to Wat Tyler Country Park near Basildon, which is a bit of a favourite and a bit different from the general run of country parks. It has a curious attraction all of its own.
For some reason this image is refusing to open at the proper size. I'll try it again later.
Update: Same thing has happened to all my images. This was one of the bugs that struck the new version of Blogger a year or so ago when it was introduced, but it got fixed. Looks as if it's come back again.
Back home for a late light lunch, then I made some butter (needed for tomorrow's cooking), did the weekly cat fountain cleaning, and generally found little jobs to do. Plenty more of those on the list, unfortunately.
Tomorrow is Pill Organisation Day again. Unbelievable. I don't know if it's the lockdown or the disease or just getting older, but the weeks seem to fly by in no time at all these days. Only two days left to the next set of bloods on March 1st!
Change of plan yesterday morning to take advantage of good weather. We went to Harlow Town Park, which is nothing like as depressing as it probably sounds, and had a decent walk and a couple of coffees. It's quite hilly by our standards, which helped to lift my Activity Level up although the length was't all that high.
In the afternoon I fitted the new Watchman to the oil tank, copied all the settings across from the old one, and everything worked first time. My lucky day - the usual rule is that the jobs that should be simple turn out to be the most complicated and cost far more to fix than you expected. Not this time!
As for myeloma, nothing new to report. I keep taking the tablets, and the dreaded constipation issue is under better control than usual on just the one nightly senna. Things improved when I started the propranolol beta blocker for the tremors, but now I've been off that for a while the effect seems to have lasted.
Just one problem - two more finger splits have arrived. And still nothing from the anonymous oral surgeon, still nothing about the DaT scan although I emailed Dr.Z's secretary back on the 22nd. I got the usual "out of the office" automatic reply. Will try again after the weekend.
A lot of coping with myeloma - at my stage at least - is dealing with the organisation and the paperwork. Of course I bring some of that on myself that I could avoid, but I want to put something back for the benefit of all myeloma patients if I can. On the other hand it's easy to see how this paperwork load could become impossible as the disease progresses.
Some interesting material is starting to come about COVID vaccinations for the immune-compromised, including blood cancer patients. Broadly positive, and the suppressing effect on transmission (symptomatic and asymptomatic) works. We may not get a full immune system response, but whatever you can get is good and there are no known downsides. I'm still waiting for my second shot of Pfizer...
Went to bed a little earlier than usual, just before 02:00, not sure when I woke up but lay in bed thinking for quite a while before I got up at 07:12. Pleased that my ring got it spot-on this time.
Sun sparkling on a light frost on the flat roof over the kitchen this morning. I doubt it'll last long but the temperatures are all over the place at the moment. I'll leave working on the oil tank until later for the sake of my fingers (only one annoying split left, on the side of my right little finger, but it wouldn't take much to start a few more off).
Signed up for a webinar (awful word, should be banned) on 3rd March from the ZOE COVID symptom study (I report my symptoms, or lack of them, to Zoe every day, or when I remember). This one is "COVID vaccines and the Immune System" with obvious implications for cancer patients with some degree of immune compromise. Which includes everyone with myeloma.
Went to Admiral's Park for my walk today and got a good one in, out to the sports Club and back (not the usual direction).
Just had another invitation through Myeloma UK:
We are
looking for 3 patients to join a Steering Group for a project we are
funding. Many of you may be familiar with the idea of a Patient
Registry and I’m aware that some of you may have attended a patient
workshop on the Registry during 2019.
This project has now come to fruition and based on a changing data landscape and the opportunities and challenges brought by COVID-19, Myeloma UK is investing in the Establishment of an NIHR-Health Informatics Collaborative for Myeloma. Please have a read of the below and if you think this is for you, please get in touch. Myeloma UK is funding a portion of this and the expectation is that it will be longer term commitment for patients, but the Steering Group understand that patients may give a year or so, but there is no obligation to commit indefinitely.
I don't think I'm going to fit the profile for this - for a start, small private hospital, not many myeloma patients compared with the big NHS places, but I've sent off an application anyway. Shan't be disappointed if it's refused!
New Watchman (oil tank level monitor) arrived very late from Amazon. I think that's tomorrow morning organised for me. Normal life again.
Did the nature reserve walk at Moreton this morning, and got there just as the sun broke out and a very light rain stopped. Before leaving with Victor the off-road walker I thought I'd just check on the tyre that may still have a very slow leak, and discovered that my cordless inflator appears to have suffered battery death. Spare batteries are out of stock everywhere, and as the supplier is in China I don't fancy my chances with the guarantee. Not worth the hassle.
Don't buy one of these!
I've ordered a different replacement. But before I got to that I had to re-inflate the tyre, now down a bit because of air escaping while connecting and disconnecting from the valve. There's only a very tight space for that. I switched to the inflator I keep in the car, which needs a 12V cigarette lighter socket. That has a screw-on adapter, and getting it on made a bit of a mess of my nicely healing finger and thumb ends. Not nicely healing any more... I hate dex. Everybody hates dex!
Another complication - the Watchman gadget that monitors the oil level in the tank has been misbehaving. I got a couple of new batteries (big lithium coin cells) and removed / dismantled the sensor unit from the top of the oil tank. It had far too much water in it (and a sodden silica gel pack), and the spring clip that holds the battery in place had broken, so replacement impossible. I've got another one coming tomorrow. Amazon must love me! I don't need a new receiver unit, but can't buy the sender by itself. And I have two lithium button cells I have no use for. Just life going on as normal, I suppose, completely ignoring the myeloma.
It's been that kind of day all along. And it's a dex night tonight....
We had to take my car in yesterday morning for service and MoT (it got through with no problems) and stopped for the long walk in Admiral's Park on the way back - which I did again with just a stick rather than a walker. That also means that my watch does a proper step count, which it won't do if I'm pushing a walker, the movement is too smooth for it to pick up. That makes for a useful check on the Activity count I get from the ring, and keeps me loosely in touch with what I used to do before all this started. The only problem with all this exercise is that I do collapse afterwards - I can put it off for a while but an hour or more asleep always comes at some stage.
Watched a very good Cambridge Alumni video about early detection of cancers, and blood cancers in particular "Revolutionizing medicine through early & rapid detection of cancer" - basically about detailed genomic analysis going back many years before symptoms develop. A curious aspect of this is the parallel between one of the two main speakers and my nephew David, currently employed at Columbia University and the Genome Centre in New York (when not Working From Home, of course). To quote from my sister:
"A quite different and fascinating aspect of Dr Blundell is that as we were watching, I was thinking this chap can’t be much older than David, and also that he shares with David’s unusual combination of a background in physics and machine learning applied to biomedicine and genomic research. It came out that he’d done his undergraduate degree at Sidney Sussex and that he had spent some time at Stanford. I looked him up afterwards, and found he did a post-doc at Stanford, starting in 2012 - exactly the year David did. So yesterday I asked David whether he knew him, and David says, Oh yes! He knows Jamie well, they were friends, but not close friends (which I suppose is why I didn’t feel we had heard of him before) David adds that he’s a good guy, and the only person he knows who overlapped with him in all three stages of undergrad, post-grad, and post-doc!"
Small world...
Obviously the ability to spot very early pre-symptomatic genetic changes from blood, urine, or even breath tests a decade or more before development of symptoms would be a splendid thing, opening up a huge window for early (and probably less expensive) treatment. My own interest is perhaps the more immediately practical one of getting in early with correct diagnosis rather than "bad back" etc. once symptoms do appear. That's mainly about making GPs more aware of myeloma. I'm lucky in that my GP spotted the possibility of bone cancer being behind my new back pain and did blood tests which showed MGUS and put me on the right road towards myeloma diagnosis when the infamous 6cm hip lesion developed and made such a mess of my walking.
That's all for tonight. 10mg of dex in the morning...
First day for a long time that I've had no pain or other trouble from my many finger splits. It may be the warmer weather, it may just be time, but it's been very welcome.
Nothing to report myeloma-wise, except that I missed this opportunity from the Advocacy Panel:
Good afternoon,
I just didn't see the email in time and other people got there first. D*mn.
The anniversary Indian from Vojan was good, and big enough that the leftovers will do for tonight's dinner as well. Might get an extra naan to help it along.
Later today, my car goes in for service and MoT.
Never got out for a walk yesterday, but hit my Activity Target anyway. If the weather's decent we might stop at Admirals Park on the way home (Sue will be coming along in her car, because all courtesy cars, collect-at-home schemes etc. are out of action because of COVID).
Slightly annoyed with my wearable medi-tech ring. It monitors when I go to bed and when I get up, and usually gets both times spot-on. It's been nagging me to get to bed a little earlier (between 1 and 2am, rather than often ten minutes or so later). Last night I actually went to bed well before 02:00 but got up for a bathroom visit a bit after 03:00 (this is unusual - more often I go between 06:00 and 07:00 but it ignores that) and it claimed I didn't go to bed until 03:15 thereby making a bit of a mess of my sleep records for the week.
Today is our 39th wedding anniversary day. Celebrations will necessarily be somewhat muted but will include a takeaway dinner from the very excellent Vojan http://www.vojanrestaurant.com/ which claims, with good reason, to be the best Indian restaurant in Essex. It's certainly the best one we know.
Next year, if all goes well, we may try for something a little bigger...
Another very warm, spring-like day. Snowdrops out in force, crocuses starting but not at their peak yet. There's a real feeling - in all sorts of ways - of the world gradually and tentatively edging its way back to "normal".
Usual slightly indulgent Sunday breakfast (a potato waffle with a fried egg, made by Sue) then Pill Organisation, then I made Thermomix Brownies - which would have been easier if we'd had the right amount of chocolate on hand... Some maths required to convert to smaller quantities, but the result was fine.
For the walk, we loaded black bags and litter-pickers into Victor's capacious frame and did our duty by collecting enough roadside litter to completely fill one bag. That will let us opt out of the more organised litter-pick that will be happening in March. Not, for obvious reasons, the community-level event we've had (or tried to have) in previous years, just basically asking people to look after the area immediately outside their property. Crashed out again after that - stamina is really not what it was. I blame the dexamethasone..
22;20 and still completely crashed out. Haven't even got the energy to watch some rubbish on TV. This is the worst one so far,
I started yesterday morning with the firm feeling that we both needed to get out somewhere different for a change and a bit of a re-set of increasing cabin fever. Oaklands Park and Admiral's Park etc. are all very well and we like them both, but sometimes enough is enough. We decided on Thorndon Park South, the other side of Brentwood. That's pushing the "guidelines" for travel to exercise rather a long way but I thought the mental health argument was strong enough.
The car park was more packed than I've ever seen it, although there were a few disabled spaces right at the end. Much warmer again (15 or 16C), sunshine, and a strong wind so we diverted onto a path through the woods rather than staying on the open hillside of the park. We had a good long walk to the lake "Old Hall Pond" and then on in the wrong direction until we realised and backtracked towards the cafe (closed). Both felt a lot better for it, and I had the usual collapse for a couple of hours after we got home. That, of course, is a result of either the myeloma or the Len/Dex drug regime. And me being me, of course, I get to midnight and start waking up and feeling like a normal human being again...
Activity level for the day, BTW: 628/400.
It was a good expedition and did us both a world of good getting away from routine. Here's the lake:
Had a good walk in Hylands Park yesterday, and that got my Activity for the day up to 632/400, as well as discovering a new circular route on good footpaths. ' Phone consultation with GP led to us deciding to stop treatment for the Benign Essential Tremor or whatever it is and just live with it at least until such time as it gets significantly worse. Increasing the propranolol dose would risk pushing blood pressure and heart rate into dangerously low levels, and reducing it to the level the NHS neurologist suggested would seem pointless. Dr.Ku says, rightly I think, that he'd be reluctant to move onto things like Diazapam while I'm on treatment for myeloma. The only loose end still to tidy up is the NHS DaT scan that Dr.Zo (private) was supposed to be arranging. GP asked me to contact him or secretary to chase this up. And there's the invisible oral surgeon as well, but I've done all I can about that.
It's been a bad day (after a bad week) on the Facebook Myeloma group. Too many deaths - one of them of someone who was admitted to hospital because of his advanced myeloma, caught COVID-19 in there, and died of it. After all that shielding... Too many people having real trouble coping with the emotional side (and some of them carers not patients). One of the admins even asked people to post some positive myeloma stories to counter the gloomy mood.
Too many graphic and uncomfortable reminders of what may lie in store further down the road. Best thing is to keep this remission going as long as possible. Had a letter today from Hancock & Jenrick about extending shielding to the end of March for the clinically extremely vulnerable - "guidance not law" - but I shall certainly follow it at least until a couple of weeks after the second Pfizer injection, and that's a good while away yet.
A very successful trip to Specsavers - easy on-street disabled parking followed by Mohammed fixing the pairing problem in just a couple of minutes. I don't go into shops etc. enough for facemask-wearing to feel natural, but I'm getting there. When I came out the rain had just about stopped, so called in at Admiral's Park and had a good long walk with just a stick, which is OK as long as I know I'm going to be staying on good hard level footpaths. Anything less, and I need the extra security of a walker. Probably the best bit of healthy exercise I've had since the ice and snow set in a while ago.
Spring is sprung in the Park, or at least started springing:
Nice to see something of the "old normal" in these strange times.
Rain again, but we went to The Bakehouse next to the Fox & Goose "gastropub" which is of course closed during the current lockdown. The rain stopped for long enough to allow a short walk along Wyses Road off the A414 between Ongar and Chelmsford. Sue did the tedious business of queuing to get coffee and lunch (bacon and egg florentine muffins) while of course I had to wait in the car.
Back at home, another long questionnaire to complete from RUDY (Rare Diseases) about impact of COVID-19 restrictions on quality of life with myeloma, plus both a phone call and an email from AXA confirming next year's cover for Lenalidomide and Dex.
Inside The Bakehouse. Not that I've been inside for over a year...
A warmer day (10C!) but constant light showers putting me off a walk. So I think I'll dodge the rain - such as it is - and clear out the insides of my car a bit - due in for service & MoT in a few days and it's been ferrying muddy walkers around for the best part of a year since I last did it. That should boost the activity score for the day.
A big change in the weather - at 01:00 it's 9C outside - and yesterday was a bright sunny spring-like day with some real warmth and freshness in it once the rain stopped in the morning. Very uplifting for the spirits, which to be frank I needed after a couple of difficult days at home when the cold and everything else has been getting to both of us a bit. I know the combination of the lockdown and all the rest is going to need huge reserves of patience and tolerance on all sides, but it's easier to write that than it is to live through it. And I also know that the effects of the drugs I'm on don't necessarily make me any easier to live with...
Despite all that I spent most of the day at home, reading up on early myeloma diagnosis and then playing the usual weekday online backgammon. Not a good day for me, with the dice giving my opponent double after double and me nothing useful. Lost the day 3-1. Between those I fitted in a walk to Pepper's Green Lane which helped get my Activity Level up to (and over) the mark, but I had trouble getting a decent pace up or keeping it going for more than a dozen yards or so. I need to build up a bit after being housebound during the recent freeze.
One good thing - the sheepskin-lined gloves kept my fingers warm enough.
One bad thing - the plastic bit that locks the lid of my Adteq pill boxes broke a day or two ago, so I had to order a new one from Amazon. That's the second identical failure. I suppose one new one a year at GBP 8 or so isn't too bad. Now wondering whether to get another one in as a spare, just in case.
Pepper's Green Lane in a very early spring:
There's been a moth in my study this evening. A very small one, but definitely a moth. Either a very late one from autumn 2020, or a very early 2021 one. Last year I didn't see a single moth, neither inside nor out.
Warmer today, getting up to +4C early afternoon. Made it to Oaklands Park, coffee (cold and breezy on bench!) and a rather short walk before retreating to the comfort of the car. Sheepskin-lined gloves passed their first test, and splits no worse than they were before. Request for hints'n'tips on the Myeloma FB group produced little beyond a few people's favourite hand creams and olive oil. Passed my activity target (444/400) with an hour of the day left to go.
I now have some heavy reading to do - Myeloma: State of the Nation and a lengthy piece from Science in Parliament (the Journal of the Parliamentary and Scientific Committee). I'll be back later...
Exceeded my activity target (by 592/400 so far) just by spending most of the day in the kitchen. Too cold etc. to get out for a walk, but hoping for better things tomorrow. Made some heart-shaped signature Cheesy Parmesan Biscuits in advance of the day - quite a lot have disappeared already. Use of a heart-shaped cutter not an idea of mine, BTW, I stole it from a friend.
Minus 2C outside now. Stayed below freezing all day. BBC weather says it will gradually climb into positive territory through the day tomorrow. I hope so, because my "mental health" needs me to get out of the house.
01:20 UPDATE: Outside temperature up to 0C. Things are getting warmer. There's hope for tomorrow after Pill Organisation.
09:15, and minus 5 outside according to Alexa although it is bright and sunny, if windy. Good thing I have a kitchen day planned because I'm not going outside in that. Not with these hands, not even with the new sheepskin gloves.
D*mn dex!!
Photo shows ice building up in the small pond, with just the pump outflow still going. Photo taken from inside the kitchen with the 10x zoom in the new phone. The vertical bars are part of the anti-heron defences.
01:24 and Alexa says minus 4C outside, and set to stay below zero all day. Too cold for my dex-affected fingers. Luckily I have lots to do in the kitchen - make both spreadable and hard butter, clean the cat drinking fountain, and make a batch of slightly different from usual signature Cheesy Parmesan Biscuits. As well as lunch and dinner. Today we had a couple of our neighbour's eggs from her chickens poached in the proper way and on toast for lunch. Small, but delicious!
(That's a stock image, not one of mine!)
Sunday should see a return to better temperatures, so a good chance of getting out to test the new sheepskin-lined gloves. I need to get out - the combination of the weather and my finger splits has kept me inside for too long. Cabin fever is approaching, and that won't help the last online backgammon session of the week, postponed from yesterday evening to later this morning.
The second Test Match with India starts at 04:00 UK time. I've set my alarms to see the toss and the first few overs.
Myeloma? Forget it. This weekend is going to be devoted to normal life, as far as I can manage it. Valentine's Day is the main thing.
I'm now on Myeloma UK's Patient Information Panel as well - mainly reviewing and improving material aimed at patients and carers. That makes three, which is enough.
Another cold day, staying under freezing. I've stayed in to protect my fingers. Doing as many trips up and down the stairs as I can think of reasons for to keep my activity level up.
Woke up at 05:45 with that old familiar feeling. Up at 5:45. Big Bang Theory, here I come....
Sheepskin-lined gloves arrived yesterday, along with some more silicone finger protectors. Minus 3 outside, but I may be tempted to a short expedition outside if it warms up a bit. OTOH finger splits are improving after a few days inside, don't want to risk knocking them back.
Back to myeloma - and not before time, the weary reader might say...
My main interest outside my personal experience of the disease is in early diagnosis and GP education about myeloma. I've seen a figure somewhere that the average GP sees only five myeloma cases in a full career so it's hardly surprising that it's not something on te tops of their minds. This luckily matches the current main concern of the Advocacy Panel..
I made a start by posting on the Myeloma UK Support group on Facebook and got a very gratifying return of support and tales of diagnosis - mostly of long delays and a few good ones for balance and contrast.
You never know what's coming - last night I slept right through from about 02:00 to 08:15 despite the dex. So I got no further through The Big Bang Theory.
Things went slightly off routine after breakfast this morning - I had to make the coffees because Sue was heading out to the dentist - and I forgot to take my breakfast pills from the red (cancer) box. So today's 10mg of dex went in after the evening meal instead. I have no idea how that may affect tonight's sleep. Maybe I'll get through a couple of BBTs after all...
The laughs have helped, now and again.
Woke up with both hands swollen a bit - the rings felt too tight and skin redder than usual. I take that as an indicator of what's left of my immune system trying to deal with all the finger splits and etc.. All back to normal within half an hour or so.
Bright sunny day but still freezing within a degree or so, I'm staying inside to admire it through the windows and give the splits a chance to heal..
As a result of this morning's call on Microsoft Teams, I'm now a member of Myeloma UK's Advocacy Partner Panel (APP), see here for details. Never used Teams before - I downloaded it a few days ago and it worked perfectly first time.
21:30 and my Alexa says it's down to minus 4C outside and going to get colder:
I shall be staying in until it warms up. The finger splits are entirely bad enough already.
I've got the under-desk bike machine out again. Boring but it does get the activity numbers up. Very slowly...
A fraction less cold today, but -1 or thereabouts now (22:30). Fingers and hands in a bad way after clearing snow off the cars this morning and doing the bins this evening. Gloves are all very well but not enough. I've cancelled tomorrows Specsavers appointment because they adjusted my glasses while I was in today, so I have no reason to leave the house and I don't intend to. I shall have a finger-healing day instead.
Also expecting an early (10:00am, that's early for me) Microsoft Teams call from MyelomaUK's Advocacy Panel. I've never used Teams, so that might be interesting. Installed it a few days ago, but that's as far as I've got. I have a phone number to call if problems, might need it...
They're in, and the Paraproteins are still at "undetectable". As for Free Light Chains, two of the three numbers are in their normal ranges, the other is just a fraction below, which I suppose is better than being a fraction above. COVID test negative again as well.
So that's all good news, and it's stopped snowing as well. But still -2C out there, so I'm staying inside!
No it hasn't. I've just seen a few little flakes drift past the window...
Temperature still below zero, so cold our heron has frozen solid...
(Apologies to anyone who has already seen that joke on Facebook)
On the advice of my sister, set out to buy some sheepskin-lined mittens from morlandsheepskin.co.uk but they've got a production delay of five weeks so that's probably best left until next winter. Have ordered a new pair of gloves from them instead:
Finger splits much better today, and because of freezing temperatures all day I never got outside at all. There is a connection! Dex, I'm sure, makes them worse and take even longer to heal but the underlying truths are the same as before - it's cold weather that is the primary cause.
On the Facebook Myeloma UK group there's a consultant quoted as saying that Myeloma is one of the better cancers to have. To a point, I'm inclined to agree and I've said the same thing myself. As long as you're diagnosed reasonably early - and from that same group I'm very aware that some people aren't - then you're likely to have several years of reasonable health before things start getting bad. It's not like being told out of the blue that you've got something like pancreatic or bladder cancer and will in all probability be dead in six months, most of them in a bad way. With Myeloma you do have - probably - the precious gift of time before the crunch comes. And it will, eventually, to all of us, cancer or not.
Personally, so far, there are annoyances - the constipation management, the infernal finger splits, the exposed jawbone, the poor walking and worse balance - but none of those really make an intolerable impact on quality of life. They're nuisances, and not a lot more. Rather like the endless round of hospital appointments, blood tests, another bag of pills to take... They can all be coped with. The worst thing, for me, is the drop in energy and stamina. It's hard to start things and harder to keep them going, and that applies as much to the trivial level of getting out of a chair as it does to bigger things. Much easier to fall asleep for a while. But enough of that - time for bed...
Snow finally (15:30) coming down a bit harder but with temperature still around zero some of it's more like hail than snow. I think we might have a decent fall overnight.
Hope not too bad because I have to drive into Chelmsford on Tuesday to sort out the problem with pairing my hearing aids with my new phone, and again on Wednesday for adjustments to my new glasses, which tend to slip downwards and fall off when I'm looking down. It's not the snow that worries me, or even the ice that may follow, it's the effect of the cold on my fingertips. D*mn dex!!
Mid-day, and some VERY light snow has arrived. For the second shot, my phone preferred to focus on the raindrops on the window. Temperature at freezing or very close - "too cold for snow".
Did the Sunday pill thing in forty-five minutes this morning but have some more stuff to order. It all takes time. I think I'll be staying in again - if nothing else that should give the finger splits a chance to heal a bit. They really do not like getting even a tiny bit cold, Typing is easier than it was yesterday, only the right middle finger is causing a problem.
Rain. Rain again. Heavy, continuous, stair-rods of it. I don't think we'll be going anywhere today. The floods will be re-flooding, and there's thick snow expected tomorrow. Fortunately I have plenty to do in the kitchen today - as long as the power stays on...
Afternoon Update: The rain did stop eventually but I was too busy in the kitchen to take advantage. Made slow-cooked pork, leek, cider and sage hot-pot, and because Tesco gifted us with a kilo of carrots we never ordered and four of the biggest leeks imaginable, made improvised cream of carrot, leek, and tomato soup in the Thermomix as well. That's tonight's dinner (plus more for the freezer) and tomorrow's lunch sorted. Sometimes cooking helps me keep a grip on sanity in this crazy world.
Now raining again. Of course. Snow expected in the early hours of the morning. No walk today, but my Oura Ring health monitor tells me I've already hit my activity target for the day (409/400). Should be well over 500 by the end of the day.
Next Morning Update: Snow? Did somebody mention snow? As in Essex being under four inches of it this morning? Not a flake so far...
A much warmer, brighter, sunnier day so we went to Rayne for a healthy walk along the old (Beechinged) railway track. Onion bhaji & mango chutney sandwiches from the Dunmow Co-Op for lunch. They tasted completely unlike any onion bhaji or mango chutney that I've ever eaten. Which reminds me that I should make some more onion bhajis - something the Thermomix does rather well.
I'll be back on the Senna tonight, possibly a Fybogel too. Things can change very quickly!
Went to Oaklands Park for a slightly longer walk than usual to avoid the mud by taking to the roads instead, and it started raining (again!) on the way back afterwards. The ground is now so saturated after an exceptionally wet January that even a tiny bit of rain just lies on the surface. All the cross-country walks through the fields that I did back in the summer are completely out of the question now and will be for a long time to come.
More evidence that the propranolol is having a beneficial - or even slightly too beneficial effect on the constipation brought about by the dex or the len or possibly both. I'm planning on skipping the Senna again tonight, I don't think I need it. Diarrhoea is a listed side-effect but there again so is constipation!
Dr.Ku's response to my letter about propranolol has been to arrange a 'phone call on the 19th. Obviously not seen as urgent (which it isn't). So I'll keep going with the 80mg propranolol for the time being.
Two different views of Oaklands from the bench we normally use for coffee-drinking. One with Walter, one without. The big house containing the Chelmsford Museum is behind us.
I collected my next monthly package of meds from Springfield at 13:00 and didn't get to take my first 10mg of dex until after lunch at about 14:30 instead of the usual after breakfast (which is late, but not that late). Not sure what the effect on tonight's sleep will be.
Constipation has improved since I started the beta-blocker - to the point where I decided to forego the nightly Senna tonight. Only the second time I've done that, I think, since I started on it over a year ago. Now back on Lenalidomide again for the next three weeks before the week off at the end of the cycle - and speaking of that I'm just starting Cycle 10 of this consolidation/maintenance treatment with Dex and Len. So I've been on it for forty weeks now.
The finger splits have been better today - not healed yet but on the way. The warmer weather may have something to do with it. I walked up to Peppers Green Lane and back, with gloves but without feeling the usual chill on the ends of my fingers. All the gloves I use for these walks claim to be well-insulated, but all I can say is not well enough. OTOH I don't like thick gloves so there has to be some sort of a compromise.
I've decided against doing the second Patient & Carer Panel thing - it's a rather wooly and airy-fairy study about how starting new hobbies affects time perception and therefore makes the bad aspects of myeloma more tolerable. Panel members are free to decide which requests to accept and which to ignore, and I don't think this one's for me:
"a research project and associated campaign
to support people living
with multiple myeloma to enjoy new experiences, such as learning a new skill or trying out a new hobby.
They are also developing a new app called the
Time Keeper that will share the activities and hobbies of myeloma
patients and examine how their perception of time has changed in
response to these activities; has it passed more slowly
or quickly. The idea is that by supporting people to undertake
activities they enjoy, their myeloma journey may be less challenging."
No snarks tonight, except perhaps in my dreams...
Nothing about myeloma today (or yesterday), except a phone call from MyelomaUK's Advocacy Panel to set up a video call (i.e. interview) for next week. Otherwise, I refer my readers to the magnificent metaphysical epic to be found here: <https://www.poetryfoundation.org/poems/43909/the-hunting-of-the-snark>
Had my phone call with Dr.Ch not long after 09:00 - only a short one as we didn't have much myeloma to discuss so it was more about beta blockers and COVID vaccines. I wouldn't mind if I got paid as much as he does for the pleasure... Then breakfast and off to Springfield for them to take more bloods and do the monthly COVID swabs (for some reason we missed those last month). Stopped of at the GP surgery to collect a prescription and drop off my letter to Dr.Ku about propranolol, then spent most of the rest of the day with the problems of getting my old mobile number ported across to the new phone. Success finally achieved, although I'm still far from sure that my accounts with O2 (new provider) and Samsung are as they should be. I seem to have at least two of each, with the critical information spread around and each one wanting a different password every time. But that's a job for another day because most things on the phone now seem to be working.
The skin-thinning effects of dex are haunting me again. I thought I'd got on top of the finger splits but they're back in full force (and making typing difficult). More - much more - hand cream and cotton gloves overnight for a few days.
I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 2...
