30/08/20 Breakfast at The Hare

The tentative and cautious return to something like normal continued this morning with breakfast at The Hare (Roxwell). We had hoped to sit at an outside table but it was too cold and windswept for that. Not crowded inside so we went to our usual table inside, well away from everyone else. I had Eggs Benedict with a magnificently spiced Garnett's (local) sausage added, Sue had the Small English. We stopped at the Essex Way (Peppers Green Lane) on the way back and had a good length walk in the hope of working some of it off. Then got home and completely forgot the need to do the Pill Organisation Thing before my lunchtime pills, which were therefore rather later than they should have been. But timing not critical for any of them, so no big deal, just annoying.

Also annoyed by the new #2 water butt. It's leaking from where the tap goes in:

so now I have to empty it out, disconnect the diverter at the top, find a way to get one arm down inside while I tighten the tap with the other arm, and put it all back again. Tomorrow, I think.

The trouble may be that the tap has clearly suffered some damage during shipping:

It's been knocked off-true to one side, and the body of the butt is carrying quite a dent. It came in a big cardboard box with no protective internal packing against damage - I was just hoping that it would all put itself right with enough weight of water inside, but it seems not. If there is actual damage I'll have to deal with the problem of a return to Amazon. But maybe they'll just send me another one instead... the Lord knows I must be a good enough customer!

Oh well. Keeps me busy and off the streets. I suppose I should welcome the distraction of these little problems (and others, such as why Sue's Bluetooth wireless earbuds seem to have decided to unpair themselves from her phone and computer, and how to get them back again). It's just that they always seem to turn up at the wrong moments...

29/08/20 (20) Tower Gardens

Better news on both blockages today. Enough said, I think!

Avoided some rain for a shortish walk in Tower Gardens. Better than nothing. Then had a bit of what is now becoming the regular weekend "dex crash" but coming out of that now as I have dinner to cook.

29/08/20 Constipation

Very little movement (literally) on the constipation issue yesterday. Took the Senna / Fybogel / Laxido cocktail again and hoping for better things in the morning...

No walk today, prevented by rain. Seem to have been quite busy with one thing and another but not sure that I actually achieved very much. It seems clear that the downpipe from the gutter that feeds the diverter into the new water butt has got blocked. Will ask our gardener / odd job man to have a look at it, he's due later today. Maybe flushing it through with the hose or even the pressure washer might do the trick.

27/08/20 Papermill Lock

 Had a good long walk along the towpath at Papermill Lock this morning. The place seems to be under new management as there have been several changes including toilets now restricted to tearoom customers only, and a £5 charge for the car park that used to be free. Despite all that, the place was as busy as we've ever seen it - and with at least 150 cars in the car park by lunchtime, a healthy little extra income. We backed out of the car park entrance and parked on the road  using my Blue Badge for being slightly into a double yellow line area.

Finished changing the #2 water butt over to the new one, and there's been plenty of rain. Tomorrow morning will show whether all is OK with it or not.

I've been pleasingly un-snoozy today, probably the result of 10mg of dex this morning. Got a bit annoyed on the Facebook Myeloma UK Support group by a poster saying her consultant had argued that the immune "damage" caused by Lenalidomide was no different from that caused by stem cell transplant. Well, if that were true I'd have not much of an immune system at the moment. I allowed myself a slightly snappier response than usual...

Constipation - definitely my #1 side-effect - bad again today. So after building up to it for a couple of days, tonight I've taken the full cocktail of Senna, Fybogel, and Laxido. Hoping for some action in the morning.

26/08/20 Myeloma & COVID

Right back at the beginning, in post #1 'Introduction', I wrote "This is meant mainly as a more-or-less daily record of my time with Multiple Myeloma." and that's still my aim. The problem is that back then we had never heard of SARS-COV-2 but for the last six months or so it has dominated every aspect of life. Without it I'd be five months post-stem cell transplant. Still pretty much stuck at home during the long recovery period, still not doing the weekly Tesco food shop in the store, still not going out to live music two or three times a week. The big difference is that there would be live music I could go to, and now in the real world there isn't.

My time with Multiple Myeloma is also, like it or not, everybody's time with COVID. So no apologies for writing about the infernal virus more than I'd like to.

Decent local walk around the triangle today, made a batch of spreadable butter, and the right shoulder has been good.

25/08/20 Wet & Windy

Wet and windy today so I don't see much chance of getting a decent walk in. Again. I'll attack the paperwork pile instead.

Right shoulder is better today. Still can't make up my mind whether to report it or not.

UPDATE: Not as much rain as predicted but very windy all day. I devoted myself to the task of replacing the old #2 water butt, which has developed a number of pinhole leaks, with a new one delivered from Up The Jungle this morning. Having - with some difficulty - removed the rainwater diverter from the old butt I found that I haven't got the right size of flat bit that I need to make a suitable hole in the new one. Under normal circumstances I'd have got in the car and gone to Homebase or B&Q to get one. These days, of course, it's upstairs to the computer to order one from Amazon...

Also had to help Sue with cleaning inside windows - some bits are not easy to reach. That put my right shoulder to something of a test. Feels OK at the moment but tomorrow morning will tell.

Paperwork accomplished, main filing trays cleared. Already they're building up again.

24/08/20 Dex crash & right shoulder

Made a complete mess of timing my (local) exercise walk today, as it started raining quite heavily before I'd got very far so I turned round and came back home. Blue sky and bright sunshine now...

Haven't felt so tired today, confirming the theory that it's "dex crash". I suppose I'll just have to live with it.

Still getting some problems with right shoulder / side of neck. It comes and goes, sometimes seems related to lifting etc. or a fan blowing that way, but sometimes just random. Starting to wonder if it may be myeloma-related - another lesion somewhere round there perhaps? Maybe I should talk to the chemo nurses and/or Dr.Ch about getting it checked out. 

23/08/20 Dex crash and Admiral's Park

If yesterday (Saturday) evening was anything to go by, the idea of minimising any weekend "dex crash" by splitting my 20mg dose into two lots of 10 hasn't worked. Completely zonked out in the evening but inevitably perked up again coming up to midnight and my nightly shower.

Yesterday we did the "short walk" to Admiral's Park and the Central Park Cafe, which allowed me a well-distanced look at how the anti-Covid precautions work in practice - something I've still seen very little of as yet. The affogatos (vanilla ice cream with a shot of espresso) were excellent, and we had them on a bench by the side of the lake. All very pleasant.

21/08/20 (2) Blood test results

Another good set of blood test results today, and my COVID-19 test came back negative as well. Paraproteins still undetectable, Kappa light chains 9.81 (normal range 3.3 to 19.4), Lambda light chains 6.14 (5.7 to 26.3), Kappa//Lambda ratio 1.60 (0.26 to 1.65). That's all four of the main indicators of the progression of myeloma behaving themselves. Also encouraging that platelets are back into normal at 165 (150 to 400) after hovering around one side or the other of the lower limit for the last few months. So I'm still in remission and just hoping to stay there as long as I can...

21/08/20 Duck eggs & pill confusion

Remember that thing on my wrist that had to be a burn from an oven rack even though I didn't (and still don't) remember doing it or experiencing it any pain at all? It happened again a few days ago, on the right hand side of the original mark, and this time I definitely did touch an oven rack there while getting something out from the rack below. And it did hurt, although not a lot, and I took the time to run it under cold water. If there's any myelomatous significance to that difference, I have no idea what it is.

Something went wrong with the pills this morning - I think I must have taken both Thursday's and Friday's ones from the "routine meds and painkillers" box, meaning an accidental double dose of paracetamol and Optivision. No big problem there but it's a warning not to get too casual about the pills. I've refilled the Friday box with new pills and I'm not going to run out of any of them 

I'm totally converted to poached duck eggs. They work superbly. Crack the egg(s) into a sieve to drain off the watery part of the white, add about four times as much salt to the water as seems reasonable to increase the density so as to make the egg float and not catch on the bottom of the pan, and allow about half a minute longer than you would for a large hen's egg - three minutes or just a little over. Not forgetting a splash of white wine vinegar in the water. Drain on kitchen paper before serving. There's much less white in a duck egg than on a hen's egg and a much higher proportion of yolk so you get a well-formed result every time with a well-set white and lots of oozy yellowy-orange yolk. Delicious on a slice of good toast well-buttered (with home-made butter, obviously!) and a little Maldon sea salt and plenty of freshly-ground black pepper.

20/08/20 Day of small things

 It's been a day of small things so far, starting with my second 10mg dose of dex (to make up 20 after yesterday's 10mg). Sue's out with socially distanced friends in Hylands Park so I've had the place to myself. Did a bit of gardening, put new hand grips on the wheelbarrow when they arrived from Amazon, answered several questions on the FB Myeloma Support UK group, back-flushed the fishpond filter, poached a very large duck egg on toast for lunch, then inflated all eight tyres on my three-wheel and four-wheel Trionic walkers (yes that does make sense, really!) All had lost quite a bit of pressure since I last did it (but not gone flat) and they're definitely a little easier to push when up to 30psi. Then went out for a good long (local) walk, by some distance the best I've had for a while. Weather much improved today! 

With all this activity and not feeling tired at all I think I must be having a touch of dex mania. Will probably pay for it later. Also have a bit of the "dex munchies" - even harder than usual to stop snacking too much.

19/08/20 (2) Lenalidomide arrived

Wheelbarrow wheel replaced. It's the right size but the real problem was getting a connector to fit over the valve in the very tight space available so that it would stay on while inflating. One does wonder whether the people who design these things ever test them out in the real world.

Lenalidomide has arrived from the Springield Pharmacy. Capsules now distributed into the cancer 7-day cancer pill box.

A large pile of Amazon and other deliveries dealt with, and a post on the Facebook Myeloma group responded to and my reply liked.

But still raining. Still can't get out...

19/08/20 Rain

 Rain.

Rain again.

Can't get out.

Need to get out...

Anyway, have fixed the lock on a downstairs window (WD40!), improved the flow from the tap on the water butt (cunningly bent paperclip),  and a replacement wheelbarrow wheel has just arrived from Up The Jungle, so I can pass some time either fitting that or discovering that despite careful measurement it's the wrong size.

Maybe it will have stopped raining by then.

No phone call from Springfield about my delayed Lenalidomide yet.

18/08/200 (2) Zometa & constipation

Arrived at Springfield Hospital 16:00 only to find that they were expecting me at 14:30. No idea how that confusion happened as I know I checked the unusually late time when we booked it last month. Still, it didn't seem to matter and we got the Zometa done. No reaction to it going in, as usual. I also got the bag of meds for the next four weeks - apart from the Lenalidomide which isn't in yet. They will courier it out to us tomorrow or whenever it turns up.

Not a good day from the exercise point of view. I planned a longish local walk between lunch and leaving for Springfield, but heavy rain came at exactly the wrong time and so I never got out. Must do better later today...

Just the nightly Senna last night, no Fybogel. And 10mg of dex in the morning, followed by another 10mg the day after. I'm hoping that will work, because when the constipation gets bad enough for the glycerine suppositories, it is no fun at all. Will definitely take at least one Fybogel and maybe a Laxido later tonight as not planning on going anywhere on Thursday. I don't enjoy dwelling  on this subject, but I enjoy it going wrong even less. One of the Springfield nurses said to me long ago that whatever side-effect dominates early on tends to stay with you through all the later stages of treatment, so I just have to get better and better at dealing with it proactively.

18/08/20 Diuretic pills

Mondays (that's yesterday), Wednesdays, and Fridays are my diuretic pill days, aimed at avoiding the ankle and foot oedema that gave me problems during first line chemo. I've found that 20mg Furosemide has little effect at all but 40mg is much better and three of them a week has kept the oedema (fluid retention is a side-effect of dex) away splendidly. I no longer need the two long-handled shoehorns I bought from Amazon when I couldn't get shoes on any other way. Obviously the pills increase both frequency and quantity of urination, so planning diuretic days has to take account of that. If, for instance, I'm expecting to go out in the morning I'll shift the Furosemide from breakfast to lunch or even later. 

Yesterday was ridiculous. Took the pill after breakfast and in and out of the loo all day long, I've never known anything like it (except perhaps in the long-ago days of four or five pints in a session). Just managed to fit a short walk to the post box and back in, but it was a close-run thing. The strange bit is that when it gets to 23:30 or so and the midnight shower, the effect just switches off no matter whether I took the pill early or late. I know there's a hormonal mechanism that reduces urine production at night / while asleep and I suppose that must over-ride any lingering effect of the Furosemide. Remarkable things, bodies.

17/08/20 Phone consultation

 A quick report on the 'phone consultation with Dr.Ch:

Friday's bloods all good (and platelets up a bit) but I'm still waiting for PPs and FLCs before getting a copy emailed (probably Friday).

Agreed to try splitting the 20mg dex into 10mg on each of day 1 and day 2 in the hope of reducing the "dex crash" that I've been getting at weekends.

Partly in order to keep insurers happy, will continue with current consolidation indefinitely rather than switch to low-dose Lenalidomide maintenance as originally proposed.

Bone Marrow Biopsy report will be emailed to me...

16/08/20 Oaklands Park

It's been wet for the last few days since the Great 2020 Heat Wave collapsed, so getting out for decent walks has been difficult and I've been getting appropriately frustrated. Haven't been into a shop of any kind since late March or anywhere else except a few country parks, and those daily walks have become essential to keeping me sane. I missed three in a row because of the rain, but today we did an after-breakfast rush to Oaklands Park in Chelmsford, theory being that although it's only small you're never too far from shelter in event of the heavens opening again. We had coffees from the cafe and walked round twice - still not a lot but much better than nothing. No signs of the biblical flooding that affected central Chelmsford yesterday - photos and videos online were astonishing. There's been nothing like that in the eighteen years we've been living here.

I've now got to prepare myself and make some notes for phone consultation with Dr.Ch in the morning. Only one four-week cycle of "consolidation" left and I need to find out exactly what his plans for the "maintenance" that will follow are. I expect low-dose Lenalidomide (probably 10mg as against the current 25mg) and no more dex but unsure about which of the various supportive meds - Zometa, Co-Trimoxazole, Aciclovir, Rivaroxaban, Omeprazole - will still be needed. And I suppose the anti-constipation things will change as well. No more troubles on that score BTW, but I have ordered another pack of glycerine suppositories online. Just in case...

14/08/20 Constipation

This is supposed to be an honest account of life with myeloma, so here we go...

I've mentioned that the constipation problem has returned, presumably mainly as a consequence of dex. I haven't taken Lenalidomide since Tuesday night, this being my week off, which may mean that it plays no big part in this. Or maybe it's a reaction to coming off it...

I take one Senna every night, topping that up with Fybogel and Laxido according to need. I had one Fybogel last night and wondered whether I should double it up or take a Laxido as well but decided to go one more day without going that far.

Mistake. Very bad this morning. Not pleasant at all. Resorted to two glycerine suppositories (and a great deal of rather loud bad language) before much appreciated relief - of a kind that put the macerator behind the upstairs WC to its toughest test yet. Followed up with a shower and now feeling a lot better. Am going to put myself on regular nightly Fybogel for a week or two - really don't want things to get so bad (not to mention hard and compacted) again, and this crept up on me without enough warning. Goes to show that I've not been quite as on top of this issue as I thought I was.

13/08/20 (2) Sunrise & the Facebook Myeloma Support UK group

Well, it wasn't much of a sunrise.

Red sky in the morning, sun not up yet:

Just a murky grey haze:

And finally the sun broke through. Much redder in real life than it appears here:

It wouldn't have been worth getting up for if I hadn't been wide awake anyway. And at 07:45 we had a short heavy shower. Still raining gently now (08:05), and thunder rumbling in the distance...

Myeloma content in this post: zero, apart from the dex being why I'm around at such ridiculous hours.

I spent some of the time on the Facebook Myeloma Support UK group, reading through posts and comments I've only skimmed over the last few days. It makes me realise how much further there is to go on this road. There are people on second and third lines of chemo (if not more), people who've had two transplants (and not the "tandem" kind, which is planned that way from the start and more common in the USA than in the UK). And people with horrifying tales of Peripheral Neuropathy (mainly feet), spinal surgery, as well as the usual dex side-effects. I've done remarkably well so far, and sooner or later it's going to get a lot worse. A year on, and still just a beginner. 

More bloods to be taken at Springfield tomorrow afternoon, and then the waiting bit to find if the PPs and FLCs are still behaving themselves. 'Phone consultation with Dr.Ch on Monday and Zometa on Tuesday. Maybe that little burst of activity coming up is why I'm turning all philosophical again.

13/08/20 Dex night and heatwave

 04:05. I went to bed just after 01:30 and slept, with plenty of interruptions, through to 03:45. Two hours and a bit, which is on the low side of normal for a dex night. The same tactic worked much better last week when it wasn't quite as hot. Sunrise is 05:39 according to the BBC weather site, so no excuse for missing it this time! It also gives the outside temperature as 18C, and in my study my thermometer is at 29.5C - there's a huge amount of retained heat after the last week or two. It's going to start off very hot again - upper 20s not 30s - with a chance of thunderstorms early afternoon. To further increase the confusion, my phone says 22C for the nearest weather station in Writtle (five miles away), which makes it another "tropical" night above 20.

I've got a bit obsessed with the weather, but I claim it's excusable after what I think is the hottest and longest heatwave in my memory. Summer 2018 was much longer of course, but IIRC it never got quite so hot for so long. And you don't need all this and dex as well. Climate change? Not a topic for this blog!

12/08/20 (2) Peak heatwave

Probably the hottest day yet, right from the start. No relief in the morning unlike yesterday.

After breakfast and the obligatory cappuccino from the Sage coffee machine I went to the GP surgery to collect prescriptions for both of us - one thing I can now do to take a little of the strain off Sue. Much of the car park was taken up by a truck unloading a large number of portable air conditioning units - they must be putting one into every room. Things have also changed in that patients are now allowed into the waiting room and up to the reception desk and dispensary window although under strict distancing rules, and there are perspex screens to protect the staff - so collecting the prescriptions was a lot quicker than it was in the days of queuing up outside and waiting for someone to notice you and come to the door.

The temperature was so high that I allowed myself to declare that expedition sufficient exercise for the day, which it certainly wasn't. I've felt fairly good all day (possibly a touch of dex mania from the 20mg this morning) but it was just too hot. The next thing is to find out what sort of dex night I'm going to have tonight.

Nearly. Not quite but very close. Highest reading I saw on the outside thermometer (in full shade, surrounded by leaves so probably some transpiration cooling, but no max/min function) was 37.5C or 99.5F. The digital weather station maxed at about 33.2C (91.8F). It certainly felt hotter than that! In theory a digital sensor should be more accurate than a simple alcohol thermometer, but there are reasons to doubt it. I've already sent one of those back because it was consistently about 4C lower than everything I could test it against. This one doesn't appear to have a consistent error - it under-reads at high temperatures and over-reads at low ones.

12/08/20 Tollesbury, and a daring lunch

At risk of repeating myself too much, another very hot day reaching 35C give or take a degree or two by mid-afternoon, although it was cloudy and cooler in the morning. We drove to Tollesbury and had a decent walk by the Marina and then along the sea wall to the renowned Tollesbury Salt Marshes (a SSSI). 

Also had what was meant to be a light lunch in (yes, IN) the Tollesbury Cafe. We started at one of the two tables outside, but it was so hot that the invitation to go in was too hard to resist. All the COVID precautions were there in full force - reduced number of tables, one-way flow, hand sanitiser stations at both entrance and exit, and so on. Well, it was going to happen at some point.

"Light" lunch was a Tuna Melt panini, which came with salad and coleslaw and crisps. Enough of a meal that all we had in the evening was poached eggs from our neighbour's chickens. Very good they were too - thanks to Amanda and Henry!

Last Lenalidomide for a while last night - tomorrow starts the last week of consolidation Cycle 3, and that's the week off but the dex keeps going through to the end of Cycle 4 in mid-September.

10/09/20 (2) Myeloma anniversary

My actual myeloma diagnosis is dated 06/09/20, but it's now just about a year since my GP 'phoned me to say that the X-ray on my troublesome left hip had revealed a big osteolytic lesion there and some smaller ones elsewhere. That's when it became almost certain that my MGUS had progressed to myeloma. So I'm making 10th August the official birthday of my awareness of my disease. That's one year's survival ticked off. Many more to come, I hope.

10/08/20 Shoulder problems

Just as hot again today (35C on the outside thermometer) but I seem to be handling it a bit better. Maybe yesterday was my weekly "fatigue day" to complicate things. Main problem today has been the back of my left hip - I tweaked something when carrying a heavy delivery of cat food into the garage with one arm a few days ago, and the result has been bouncing back and forwards between right shoulder and left hip ever since. It took several hours to settle down this morning, which could alternatively have been interpreted as falling asleep in my chair downstairs... But when you can't bend as far as the bottom rack in the dishwasher without a vicious stab of pain, something has to be done, even if that something is basically doing nothing.

Better now, so time for daily exercise. Yesterday was turning left out of the drive, so today I'll go the other way. Anything for variety.

09/08/20 Too hot!

It's been up in the low 30s again today and despite what should have been a refreshing breeze I've found it really difficult. Sue's coping with the heat better than I am, and rather than acclimatising I seem to be getting worse day by day. I'd like to blame it on the myeloma or the dex or the Lenalidomide, but I don't think I can. Forecasts are for another two or three days of this before it breaks with the inevitable thunderstorms and flash floods. The sooner the better for me, because it's been a real strain finding the energy to get out for a bit of a walk or to cook the evening meal. I'm not usually good in the heat, but not usually this bad.

08/08/20 Short walks

The heat makes it hard to do anything much - we've been between 30 and 36C for the last few days (depending on which thermometer you believe) and it hasn't let up much at night. Have managed some walks but not as long as I'd like for exercise purposes. I just keep taking the tablets - including Fybogel and Laxido last night, because the constipation has been back again. Fortunately that combination did the trick again this afternoon. It could be either the dex or the Lenalidomide causing it, or the combination of both.

06/08/20 (2) Good dex night

It turned out to be my best dex night yet - went to bed at the usual 02:00 or so, slept through till 08:15. The effect usually lasts two days, so tonight may go either way...

06/08/20 Small nosebleed

Had a very (and I mean VERY) small nosebleed overnight last night. It clotted quickly and didn't recur. So either my reduced number of platelets are still enough to do the job, or the blood thinner I'm taking daily (10mg Xarelto/Rivaroxaban) isn't working... Nothing like as bad as the one I had back in January which bled profusely and took at least 45 minutes to stop. I suppose I should report it to the chemo nurses at Springfield.

Dex night tonight. 01:15 and very wide awake...

Interesting and slightly worrying post on the Facebook group this evening:

"after xxx was doing extremely well according to his MM team and responding well to treatment he's become poorly again. Double vision and eye bulge, totally unstable on his feet. We were told to go straight to Barts on monday where they done bloods and lumbar punch followed by intrathecal chemo and an MRI. The cancer cells in his brain have spread and become active again."

All I can find on myeloma invading the brain (or any other part of the nervous system) suggests that it is an extremely rare complication. And not one that I much like to think about, while I've still got a brain capable of it.

05/08/20 Brightlingsea

Another government U-turn, and extended shielding for  the over-50s has been dropped like the proverbial hot potato after protests from all directions. One can hardly be surprised, as more and more government policy appears to be made up on the back of an envelope more in response to public opinion and political pressure than on the basis of solid evidence.  Nothing new on the myeloma front, but a near neighbour has been diagnosed with a slow growing cancerous tumour on her right kidney. They aim to operate within three months and to be able to save most if not all of the kidney, No chemo or other treatment before surgery, but something after to discourage a return. It's a strange thing but for most of my life I've been untouched by cancer among my contemporaries and near-contemporaries but now that seems to be changing. A natural consequence of advancing age I suppose, so not so strange after all.

Yesterday's plan was to go Brightlingsea for some sea air and radioactive potatoes for lunch (fission chips), figuring that on a weekday a small coastal Essex town wouldn't be too crowded. We got that part right, more or less, but failed to predict that the chippy would be closed.

The walk was OK, with the tide very high and waves splashing onto the promenade.

We did find a pizza / fish'n'chips place inland a bit and ate at a table just outside - not the best view, but better than nothing. And we did get the day's exercise, although not in as pleasant weather as we had expected.

03/08/20 Thorndon Country Park and personalised letter

A slightly cooler day today, and the "fatigue" back to normal so after lunch we went to Thorndon Country Park in Brentwood, expecting it to be reasonably quiet. How wrong can you be? Car parks pretty much full, and glad of the Blue Badge for getting us a spot. Visitor Centre open again (we didn't go in) and more people around than I think I've ever seen there. Had a good long walk but too many people for comfort, and constantly having to think about distancing and avoiding them takes much of the pleasure away. In fact I think about COVID-19 risk so much that it tends to drive cancer right out of my mind - unreasonable really, as one of them will probably kill me in time and the other one probably won't.

So now we await details of Boris's "enhanced shielding" for the elderly (apparently that now means over-50!) and vulnerable. I await my personalised letter with my individual risk rating, which has to be pretty high as I'm over 70 with a blood cancer.  I doubt it'll make much practical difference to me, as I had no intention of rushing out to shops and pubs and cinemas just yet. I shall continue to use my best-informed common sense as far as I can and if that coincides with government advice, so much the better. If it doesn't, that's just too bad. There's a long way to go before I shall feel safe doing anything much different from what I've been doing for the last three or four months. Basically I'm holding on for a vaccine that works for immune-compromised people and at least one effective treatment for early-stage COVID-19. If that takes us well into 2021, as I think it probably will, that's just too bad. I can wait...

02/08/20 Fatigue day?

I think yesterday was my "fatigue" day for this week. I don't like calling it that because I understand that all-out fatigue goes way beyond what I get, but equally it goes beyond just feeling tired. I'm getting an instinct - without any supporting evidence - that it's a reaction to the falling dex level three or four days after taking it. And if that's right, the reason why I didn't get the same thing when I was on double the dose (over two days) is that the dex level never dropped low enough. Maybe I could try splitting the current 20mg on  one day into 2 x 10mg over two days? Something to talk to Dr.Ch about next time. Before then I'll try to do a little research on the point.

Some quick Googling suggests this may be right. Dex fatigue a few days after taking it tends to increase with prolonged use of dex, and the combination with Revlemid / Lenalidomide (also a cause of fatigue by itself at higher doses such as my 25mg daily) can increase the effect. Well, I'm halfway through Cycle 3 of the current consolidation program and the last week of that is off Len. And after Cycle 4 I'll be off dex altogether (that's Sep.16th, if I've worked it out right) but staying on low-dose Len. I can stand a touch of fatigue for that long, especially if I know it's coming.

01/08/20 Hanningfield Reservoir

Another very hot day yesterday, apparently the third hottest on record in the UK. We recorded highs of between 33 and 36, depending on which thermometers you believe. Resisting the temptation to head for the coast on the grounds that everybody else would either be there or jamming the roads on the way there, we headed for Hanningfield Reservoir instead - both some water and plenty of shade on the footpaths between the (closed) Visitor Centre and the Fishing Lodge. That gave a decent length of walk and this is the view from one of the hides:

The many black bits are flies etc. trapped in spiderwebs across the opening. Personally, I've never seen the attraction of birdwatching. Seen one duck, seen them all... I hope an old friend and very keen birdwatcher never reads this!

Nothing new on the myeloma front today, I just keep taking the tablets and hoping for the best.