30/06/20 (3) Essex Way to Farmbridge End

Eventually got out for my walk at about 14:45. Went up the road to where it crosses the Essex Way, then turned left along the Way to the point where it descends rapidly towards the bridge over the Can at Farmbridge End. Not that that will mean a thing to anybody who doesn't live around here. Anyway, the track was drier than I expected after the recent rain, and I didn't get another puncture. The Essex Way is in serious need of some maintenance on this stretch, with huge ruts sometimes all the way across. That's when an all-terrain cross-country walker shows its worth!

30/06/20 (2) Bread, superglue

12:52 and still raining gently but steadily so I can't get out for a walk yet. Sue's out meeting some socially-distanced friends in Basildon. I've been checking last night's photos from the wildlife camera and will post a few on Facebook next. Then I think I'll get the bread machine out and make a loaf. Postman delivered some new superglue from Amazon so will attempt a repair of the microwave door handle. Almost hoping it'll go wrong so I can buy a new microwave - I've never got along with the touch controls on this one, and the chamber isn't quite big enough. 

Probably best not to go out for an hour or two yet, as this morning's diuretic pill is still working...

30/06/20

A better day in some ways yesterday - it was cold and blustery between brief bursts of sunshine, and I got a good local walk around the "triangle" of local roads:

and I hardly nodded off at all during the day. During the walk I met the #1 local businessman and landowner of the parish who didn't know that I have myeloma, so he asked about why I was using a walker. The answer is simply that with one I can go both further and faster than I could with just a stick (or nothing at all), and because I have an increased risk of bone fracture in the event of tripping over something and falling, the walker gives me a much better level of stability and security. It's not that I need one to get around at all.

I finally got the results of last Tuesday's tests. As for COVID-19 - big surprise, I'm negative. As for the bloods, the main things are that the paraproteins are still at zero and the free light chains are within normal levels. So I'm delighted...

Next thing on the horizon - but not myeloma-related - is my self-administered B12 injection on 01/07. I'm getting the hang of this self-injection thing, but still  a little nervous. It's not as easy as the GCSF injections I did before stem cell harvesting, because I had pre-filled syringes for that. With the B12 you have to crack open the ampoule, draw the stuff up into a syringe with a red needle, then change that for a blue one before injecting. Last time I was fumble-fingered enough to drop a blue needle on the carpet, which meant it had to go straight into the Sharps container. Fortunately they'd given me a spare. We'll see how it goes on Wednesday, which is also my next Dex day...

29/06/20

Haven't had a decent walk/roll for a couple of days, mainly because of the weather. Every time I find the drive to go out, it's either raining already or I go outside and decide it's going to rain pretty soon. Some of the "showers" have been short but far too heavy to get caught out in. Mustn't let myself get into bad habits of finding excuses not to get out...

I've felt generally low-energy for a while now, possibly a side-effect of the Lenalidomide - although I still perk up around midnight, as I always have done. If I do anything around the house during the day, such as a spreadable butter making session yesterday, I tend to need an hour or so of dozing in my chair downstairs afterwards. Stamina is definitely not what it was...

I've been thinking about my experience of myeloma and treatment so far, compared with so many stories I read on the Facebook group and elsewhere. I have, to be honest, had it pretty easy so far. The worst was the effect of that 6cm hip lesion on walking, and that was before I had the myeloma diagnosis. After that, I suppose it was the severe constipation and the glycerine suppositories - luckily I learned a lot from that experience and have been much more able to keep on top of it in the current "consolidation" stage  - and I'm on only half the dex dose, which must help. If there's a reason why things haven't been worse, it must be early diagnosis and start of treatment. The radiotherapy fixed the hip lesion problem wonderfully well (I still have a suspicion that one day I'll need more of that for the 4th rib lesion), and we got the paraproteins coming down before they had much of a chance to interfere with liver and kidney function. All my blood numbers are good, with the exception of a slightly low lymphocyte count. Other people don't get diagnosed until much later, by which time a lot of irreversible (or nearly so) damage has been done and their blood numbers are all over the place. Not to mention their crumbling spinal columns.

It's still an incurable / terminal cancer (without some very big advances in e.g. gene therapies) and I know it's going to get me in the end, unless something else happens first. I could get run over by a bus, or decide on a one-way ticket to Switzerland before I get too ill to deal with that. But what I'd really like to do with the rest of my time is to show that early diagnosis is immensely valuable for this disease, and that the seriously ill phase can be pushed a long way down the line so there's plenty of quality of life left before the crunch comes. And on that cheery note, goodnight!

28/06/20

Back when I had my stem cell harvest - seems a whole world away now - they wanted to give me an injection of Plerixafor between Day One and Day Two to increase the mobilisation of my stem cells and release into the bloodstream. They said it was expensive and they needed to contact my insurers to authorise it. I never looked it up at the time, but that one shot cost about £4,900... The GCSF injections were a mere £280 or so.

It does annoy me a bit that neither the hospital nor the insurers routinely provide detailed breakdown of costs. For several reasons I want to know and have to ferret around the internet to find probably outdated answers. Not Good Enough!

27/06/20

Still awaiting the results of last Tuesday's bloods and COVID-19 test. I sent the chemo nurses an email Thursday evening, expecting a response on Friday but nothing came in. I 'phoned Friday afternoon but only got the answering machine. I left it a message, and am assuming that they've all been off on a course or something. We have a number for the main hospital for anything urgent if we can't get through to chemotherapy but this hardly qualifies as urgent, although I do want the COVID result! I suppose they would have let me know if it was positive...

Expecting to hear from them Monday morning.

25/06/20 (2)

I had a message yesterday from AXA-PPP about the complaints process I started last week when they refused to pay for Zometa etc. That's all OK now so I 'phoned the number they gave me to say I was happy to withdraw the complaint because as far as I know the matter has been satisfactorily resolved. Their response was, I think, rather good - although I'm happy now I wasn't happy when I launched the complaint so they still have to investigate the reasons and look at their processes because they "want you to be happy". All good PR, even if there's nothing much behind it. The test will come when I move on to low-dose Lenalidomide for maintenance.

25/06/20

Dex night. Went to bed at 02:30, slept well to 04:25 then woke with the old familiar wide-awake feeling at 04:25...

Nothing on  the calendar today except the usual online backgammon at 17:00 so no big deal if I end up sleeping rather late after a couple of Big Bang Theories or whatever it takes to get me feeling sleepy again.

Dex is a devil. I'm on just 20mg, one day of the week. Some people are on 40mg for four days and report huge side-effects including the dreaded mood swings. I hope I never have to go that far...

There's a wonderful blazing sunrise outside my study window. Some compensation for being up and about at this time!

24/06/20 (2)

Just one thing in the diary for today - a repair man from Zenith due to replace a perished seal on our back door, supposed to be coming between 12 and 4. So of course he arrived at about 08:30, bringing a sudden and unwelcome end to my plan to sleep a little longer as I no longer have to be up at 08:15 for the Bonefos pills.

20mg of dex after breakfast, and my first Lenalidomide / Revlimid later tonight as I'm starting Week 2 of Cycle 1 of the new regime. I shall treat the Len capsules with rather greater respect, as I now know they cost something over 200 GBP a time! However it looks as if Celgene's patent is in its last year, so there should be some reputable generics coming along after that, as well as the somewhat dubious Indian imports.

It's been a very hot day and we both felt the need of the sea - or at least the lower end of the Thames Estuary so we went down to Goldhanger with Victor the Unpunctured Veloped.

That photo was taken from the sea wall at the opening of the narrow part of the Goldhanger Creek where there's a handy bench for a picnic lunch. 

Link: Google Maps (opens in new window)

A few other people came by and a couple of them were very interested in the cross-country walker and made a note of the Trionic name.

We were parked close to The Chequers, a lovely classic 15th century pub with an interior even more attractive than the exterior (and a bar billiards room) and the idea of a pint of lemonade shandy seemed just the thing in this heat - it hit 31C today. But of course the place wasn't open. Damn the virus!!

24/06/20

Big day yesterday. We started with a walk along part of the Essex Way (it was very hot and most of that route is well-shaded) and I didn't get a puncture... Then in the afternoon I went off to Springfield - first time I've driven since the last Springfield visit four weeks ago. The car park was the emptiest I've seen it.

First was taking the blood  from my left elbow vein because the nurse had trouble with getting a canula in my right wrist. It's unusual for me, normally my veins are very co-operative. Then we set up the Zometa drip and the way they do it involves 15 mins of saline first, then  the Zometa which took about half an hour, then another 15 mins of saline to flush the line and make sure that all the Zometa has gone in. And before any of that happens they have to get the Zometa from the pharmacy and make it up to the right amount and concentration for my body mass and that stage always takes longer than seems  reasonable. Perhaps there's more to it than I know about. At any rate, no more Bonefos sodium clodronate pills to take at the unearthly hour of 08:15. I've re-set my alarm to go off at 08:45 but because I no longer have a reason to get up on time, I may well just ignore it and go back to sleep.

Then my first COVID-19 swab test, which they're now doing before every treatment. It's the one that involves putting an extra-long cotton bud right into the back of your throat, then inserting it up one nostril a surprisingly long way into the passages and chambers that lurk up there. Unpleasant, but not as bad as some of the reports I've read. Results in  couple of days, and I firmly expect to be negative. By the time that was finished the pharmacy delivered my package of pills for the next cycle of Len/Dex including the Lenalidomide/Revlimid which I shall treat with increased respect now I know that one Len capsule costs, according to one site I've looked at, 208 GBP per capsule. Or was it 280? I have three weeks on and one week off, so that works out to well over 4,000 GBP a month either way...

Got back home just in time for the regular online backgammon session (I'm ahead this week, after a bad run of rubbish dice for the last couple of weeks), and then discovered that the meal plan wasn't going to work. We were going to use a jar of Dolmio Bolognese Sauce that arrived in the one food box we got some weeks  ago before cancelling, but nobody had noticed that it needed some mince as well. So I improvised a vegetarian version out of some celery, a red pepper, and mushrooms that we had in the fridge and were starting to look a little tired. It came out OK with a lot of Italian hard cheese grated on top.

After dinner I had a 'phone call from Dr.Ch. After going through the "How are you doing?" routine (answer "Pretty well, side-effects under control") and some discussion of the obstacles AXA-PPP have been trying to put in the way forward. As for that, all the evidence from several sources is that they'll try to hide behind a smokescreen of fine print in the policy but give way if they're challenged by some decent arguments from the patient or consultant. I'm  not going to get worked up about the ethics of insurance companies, I've spent too much of my life doing that already. All I care about is finding ways to make them face up to their responsibilities, and I seem to be doing OK with that so far. It is called "Comprehensive Cancer Cover", after all!

 I raised the subject of whether a delayed transplant is still the best way to go in the light of things we know now that we didn't know back in March - the virus and my excellent response to chemo so far. He accepted all my points but we agreed no decision needs to be taken at this stage.

That's about all. Later this morning, 20mg of dex and back to Lenalidomide in the evening for Cycle 2. Right now, a quick tour of YouTube for anything interesting, then I aim to get to bed at a sensible hour (for me). That may be harder tomorrow...

22/06/20 (2)

'Phone call from Liz, my Personal Case Manager at AXA-PPP, about 09:15 this morning. Fortunately, because of the need to take the Bonefos (oral bisphosphonate) pills by 08:30 I was both up and reasonably conscious. Otherwise I might well not have been...

Yes they had the case management team meeting on Friday, and yes they've agreed to fund Zometa and Lenalidomide and dex. This fits the pattern that a number of other people have reported - they try to refuse but if the patients and their consultants put up a fight and a decent argument, they fold. And of course they've avoided a formal complaint process!

Great relief all round at home!

I emailed my consultant (who will probably have been informed anyway) - nothing back from him yet - and also 'phoned the chemo nurses to tell them that we should be OK for Zometa on Tuesday. As for the promised COVID-19 test, today is too late to get result for Tuesday so they'll do it then. I was expecting a call-in on Friday but that never happened.

I've spent a bit of time over the last few days looking into the possibility of importing Lenalidomide from India, which is the only way I could get it if the other routes failed. Obviously don't want to go down that road because of quality concerns,  but I now have contact with a few people who have been doing it for years, have had the imported drugs tested in university labs, and have had no legal issues or import taxes to pay. I have "recommended" websites, email addresses, and etc.. I can see a possibility that AXA might get awkward again once I move from consolidation to maintenance, so good to have all the information ready in hand. Of course there's also the "one foot private, one foot NHS" route, which would be the first option if AXA get difficult again.

Next thing is to 'phone the GP surgery to arrange delivery of the pack of bits and pieces I need to do my own B12 shot next week, but for some inexplicable reason the pharmacists refuse to answer the 'phone between 12;00 and 14:00. Everything's medical these days...

22/06/20

Success!

More later, breakfast first.

20/06/20

Some developments on the insurance problem, but none of them as big as a solution yet. Dr.Ch and I have both been in touch with AXA-PPP and got it referred up to my "case management team" and I have reason to believe they discussed it yesterday morning. He was promised an email but hasn't had anything AFAIK. I definitely haven't. 

The 'phone consultation with GP clarified a few things. He can't prescribe Zometa or Lenalidomide for me because they're both "disease-modifying" drugs (I need to do some research about that), but he could prescribe Dexamethasone given a letter from Dr.Ch to authorise it. He said that if AXA-PPP continue to be difficult the best solution would be for Dr.Ch to take me on as NHS as well as private (he also works at Broomfield, the Chelmsford NHS hospital) and get the disputed meds through that route. He says "It's quite a common arrangement". I did suggest something along those lines to Dr.Ch a day or two ago and he replied with something like "We don't need to think about that yet".

I've also stirred up a hornet's nest on the Facebook Myeloma Support UK group by posting about this and asking for anybody with a good experience of importing Lenalidomide from India to get in touch privately. Two people have done so with very helpful information. The price is roughly one-fiftieth of the "official" UK price, which brings the idea of self-payment out of the completely impossible into the affordable (just) if no alternative. But of course the primary aim is to persuade AXA-PPP to live up to my policy's name of "Comprehensive Cancer Cover" instead of trying to hide behind the fine print...

It's a little difficult putting a decent argument together for AXA-PPP because I have very little detail of exactly what they've paid out for, and how much. There's no itemised invoice on the website, just the name they're paying, a total amount, and a vague heading like "Chemotherapy". Some of the invoices obviously arrive months after the event so you can't build up a complete picture. I was advised to call the Claims people for help with this, and that's when I found out that my account was locked, almost certainly because the case management team meeting was looking at it. Anyway, here's the answer I got back:

I've emailed that to the chemo team at Springfield and asked them to help. I'll be in there on Tuesday for bloods (and possibly Zometa, but I rather think I'll be on the Bonefos pills for another month before this gets sorted out) - or possibly on Monday for a COVID-19 test before they'll do anything at all...

Weekend coming up, and I'll try to put all this out of my mind for a couple of days. Get a few walks/rolls in, collect a puncture or two. What passes for exercise has been a bit too limited at the end of this week with too much rain and too many other things to get on with. Can't afford to get too lazy about that.

18/06/20 (2) Trouble with insurance

Had a 'phone call from my insurers AXA-PPP this morning - they're refusing to pay for my current "consolidation" treatment on the grounds that it's not chemotherapy (which, by the tightest definition, it possibly isn't). It's not my idea of "Comprehensive Cancer Cover" either!

Options are to go self-pay (I have no prices as yet but would probably be prohibitive) or to bring in the NHS - or to persuade AXA-PPP to a more liberal interpretation of their rules. Much scouring of the fine print in the policy, and I've got both Dr.Ch (haematologist) and Dr.Ku (GP) working on it. 'Phone consultation with GP booked in for tomorrow afternoon and have exchanged emails with Ch.

This is the first time I've been anything less than extremely happy with AXA. A complaints process has been started...

18/06/20

Got to bed at 02:20, read on my Kindle for about half an hour before going to sleep fairly easily. Woke up just before 04:00 with the old familiar feeling. So here I am at the computer again (04:30) - it's taking too long to get going at the moment because the most recent Windows update has lost most of my automatic logins etc. so I have to do them all individually and the options  to make them automatic seem to have disappeared. I'm getting a stream of "update failed" notifications as I write, although AFAIK  I'm logged into everything that's needed.

Obviously not! Big tangle with my Gmail p/w - think I've sorted it out at 05:05....

Went back to bed at 06:00, got another decent hour after visit from rescue cat Blue.

Still raining at 09:30. Not going to be easy to fit any outside exercise in today.

17/06/20

No walk today. The espresso machine has been misbehaving so while Sue was out at a nearby farm shop I spent the morning cleaning out the grinder and putting the rest of the machine through a cleaning cycle and a complete descale. Rather complicated and tedious processes but they  need to be done every couple of months. We are both addicted to our after-breakfast cappuccinos.

The afternoon threatened rain and there were distant rumbles of thunder. During my regular online backgammon session late afternoon the heavens opened fully and I made myself unpopular with Sue because I had left several downstairs windows open, as well as the back door. Far too much rain got in...

Up here, there was only a bit that found its way in through my study window.

It was the last Lenalidomide of cycle 1 yesterday (3 weeks out of 4 only), but the dex continues all the way through and I had 20mg this morning. It may be a late night tonight, or possibly a rather early morning...

16/06/20 (2)

Interesting news today about dex as a treatment for severe COVID-19. One can't help wondering if 20mg a week might also have a prophylactic effect? Probably better not to bet on it.

'Phoned the chemo nurses today to check that they were aware of the switch back to Zometa next week - inevitably they weren't but will now chase it up. They also said they're now COVID-screening everybody prior to any kind of treatment, so I'm likely to be called in Friday or Monday for a test.

Also 'phoned the GP surgery about my next B12 injection, due on 1st July. They're now doing nurse appointments again for that but I'm arranging for home delivery and self-injection like last time. No point in the 'extremely vulnerable' taking any coronavirus risk when there's an alternative.

16/06/20

Several posts on the Facebook myeloma group have made me wonder whether the right shoulder and neck pain I've had on-and-off for the last couple of weeks might be a side-effect of the Bonefos pills rather than just the muscular tweak I've been inclined to attribute it to. I'm due to go back to Zometa drips on the 23rd, so that should reveal the truth. Either way, I'll be glad to be rid of the discipline of the 08:15 alarm and the hour before breakfast at 09:30.

My puncture repairs on Victor the Veloped have been tested with a couple of walks and they seem to be OK.  The new inner tubes (two 14" for the Veloped and one 12" for the Walker) have arrived at last and I'll put them in if/when I get any more punctures.

Just one more day of Lenalidomide to go - I have a week off that during Week 4 of each cycle (which starts tomorrow 17th) but the Wednesday dex continues all the way through. So I shall join Dex's Midnight Runners again...

15/06/20 Transplant or not?

It's coming up to the three months that Prof. Gribben at The London Clinic said we could delay transplant for before needing to review the whole situation. That process has already begun with an email from Diana the ward manager asking how I'm doing and what my plans are.

The big unknown, of course, is how the coronavirus pandemic will go. It seems clear that most of the country, and London in particular, is now past the first peak - and also that this thing is harder to catch than at first thought (outside hospital and care home environments). Nevertheless, there's a a good chance that as lockdown is lifted there will be a second wave and maybe a third after that - all at a time when the NHS will be under the usual winter pressures and possibly worse than usual winter 'flu. OTOH there's a quite impressive argument that the virus has an internal dynamic of its own that is pretty much independent of whatever measures we take against it. It starts off highly infective and dangerous to health, then gradually fades away in both respects over a period of several months. 

The second aspect of the coronavirus situation is to do with the prospects of a vaccine and a treatment becoming available within the timescale of any transplant I'm likely to have. The vaccine situation is complicated by the arrival on the scene of RNA and DNA vaccines which (if I understand them correctly and I'm not 100% sure I do) do not require an immune system response and therefore should be OK for immune-compromised people, unlike many traditional vaccines. At the most optimistic level, population-level doses of a vaccine of some sort may be available by September. More realistically, I wouldn't expect it in much less than a year. As for a cure - many existing drugs have been flagged up as prospects but AFAIK none of them have lived up to early promise. So, even with the huge international effort towards finding a cure, I don't expect one soon.

Turning to my personal situation, 70 is the generally accepted upper age limit for transplant. I'm 71 already ("but you're a fit 70!" as a several haematologists etc. have told me) and if we delay for long enough for the problems above to be resolved, I'll be 72. Or even 73. That argues for going for transplant as soon as possible.

One thing we know now that we didn't back in March is how good my response to chemo has been - paraproteins still at "undetectable" and all other bloods numbers good apart from lymphocytes being just a trifle below normal range. In another week or so we'll have an idea of whether the new chemo regime is keeping things under control (and me in remission). If the answer is "yes" then I have to think about whether it makes any sense to change horses mid-stream and abandon chemo that works in favour of a transplant that might give me many years of remission but also might fail after just a few months - and I'm reading more and more cases of people whose transplants did just that.

The recovery process from transplant can be very tough. There's the first two or three weeks in hospital (nausea, diarrohea, total loss of appetite, etc.) and then maybe six months of being in a pretty bad way while the immune system rebuilds itself. As always with myeloma personal reactions vary widely, but is a bad outcome something I want to risk? After the best part of three months isolation at home I'm definitely not looking forward to the prospect of another six months isolating while feeling utterly lousy for most of the time as well. 

Post-transplant monitoring will involve regular trips to London, whether I feel up to travelling or not. Something I could do without...

Finally, it's clear from everything I read online that the era of SCT being the "gold standard" treatment for many blood cancers (including myeloma) is coming to an end, as various new chemo and gene-therapy options become available. Overall, my enthusiasm for transplant is definitely waning. If not for the virus, I'm sure I have gone ahead with it in late March. Now, I'm not at all so sure.

14/06/20

 Nothing much to do with myeloma, but worth recording anyway, not least because of the amount of good it did to my locked-down state of mind. And even more so for Sue, I think. She had a clarinet-playing friend from her wind bands around to play some clarinet duets in the garden. All socially distanced, of course. It was a huge pleasure to me to hear live music being made again, it's been far too long since last time and nobody knows how long it will be before that side of life, so important to me, will be back to the way it was before the virus.

Video (excuse the wind noise - recorded on my phone)

12/06/20 (2)

I was wrong about the right shoulder / neck thing - back in full force today. I must have tweaked it again somehow, but I don't know how. Back to the Deep Heat after tonight's shower. I don't know if it does much good but it makes me feel better.

12/06/20

Dex Night Plus One - slept well, waking up half an hour before the alarm went off at 08:15. The dry mouth side-effect was quite marked yesterday, hoping for less of that today. Physically I'm in quite a good place for me - going up and down stairs properly without the need to hang on to things, and the right shoulder / neck thing of some days ago has sorted itself out. I'm convinced - with a complete lack of supporting evidence - that going back onto steroids fixed the low back / left hip thing that gave me a few unpleasant weeks.

Plan for today includes making Jamie Oliver's Chocolate & Orange shortbread, and expected food and drink deliveries. For once I can barely face the online newspapers that usually occupy the hour between Bonefos pills and breakfast - full of economic doom and mob-rule leftist takeovers. I shall take the long view and hope we come back to our senses. As well as cutting the 2m social distancing" down by half asap. Such as today...

11/0620

Dex night... woke up 06:30 in the way that perhaps only people who have experienced steroid sleeplessness will  fully appreciate. There is just NO POINT in trying to get back to sleep. So I'm up and at the computer although under the new (and now temporary) Bonefos regime breakfast will not be until 09:30. It could of course be worse - I did get to bed at 02:15 and slept through to 06:30, apart from a visit to the bathroom some time after 03:15 to deal with the last product of yesterday's diuretic pill.
The effect will probably continue tonight and then fade away for the rest of the week until next Wednesday when I take the next 20mg of Dex. Last time I was on 20mg for two consecutive days a week, this time it's only one day which probably explains why I wasn't up until 05:00 or so...

10/06/20

Some good news today - haematologist Dr.Ch has accepted my suggestion of going back to Zometa instead of the oral Bonefos (bone-strengthening bisphosphonates aimed at countering the destructive effect of steroids on bone). Not confirmed yet but I expect the change will take place next time I go in for four-weekly bloods on June 23rd.

No walk/roll today because it's been raining continuously (and probably enough to make most of the off-road routes muddy and impassable until they have a chance to dry out again. Once this heavy clay soil gets thoroughly wet it just sticks in great clumps to everything... So I devoted myself to puncture repairing this morning instead. Here are the thorns:

Blackthorn, I think. The one on the left did it, I found the other two in the tyre as well, not (yet) far enough in to do damage but they would probably have worked their way through eventually. Also wrote a long answer to someone on the Facebook Myeloma group who is about to start VTD chemo and is worried about the long lists of side-effects.

09/06/20

The right shoulder problem is now 99% resolved so no continuing worries about that. The constipation treatment (just Senna and Fybogel so far) and the diuretic (40mg Furosemide) have both been so effective that I've scaled back to Senna only and Furosemide on alternate days. Maybe it's because I caught things earlier than before, but  both treatments seem about twice as potent as they did last time.

Blood sugar level - I've never been diagnosed as diabetic or even as the currently fashionable concept of "pre-diabetic" so it's not something I check regularly although I try to remember to keep an eye on it once a month or so. It was 4.9 this morning on an overnight empty stomach (apart from two Bonefos pills with lots of water), and my list of NICE recommended target blood glucose level ranges gives 4.0 - 5.9 so still OK for that.

07/06/20

A painful right shoulder and neck started yesterday evening. I had a fairly long day in the kitchen with one thing and another (enough to set my old right thigh trapped nerve issue off again, despite the daily 40mg of Amitriptyline I take to suppress it). I gave the shoulder a couple of extra Paracetamols, a long blast from a hot shower, and a generous squirt of Deep Heat. It's feeling a lot better now and of course I hope it's just a muscular tweak that will sort itself out in a day or two. But OTOH it's not all that far away from that lesion I have in no.4 back rib and I have to think about the possibility that it may be active myeloma again, despite my good paraprotein levels. We'll see how it is in the morning...

UPDATE at 23:46 - It was a good deal better in the morning and I've treated it as gently as possible all day. Staying with the extra Paracetamol and will have another spray of Deep Heat after the shower in half an hour or so. Fears that it might be myeloma-related have subsided almost completely.
However, the anti-constipation treatment has proved rather more effective than intended so no senna tonight and probably no Fybogel in the morning. On top of that, the effect of 40mg of Furosemide (diuretic) has been stronger than I remember from last time. Water balance now all over the place!

06/06/20

I've just done my morning self-check, and for the sake of the record, here are the results:

Temp 36.5C, Oxygen 96%, BP 108/72, Pulse 65. All OK, and now for a fried egg on a potato waffle. Also toast (home-made bread, although out of the bread machine) with home-made spreadable butter, Frank Cooper's Oxford Marmalade, and Manuka honey. Then cappuccino out of the espresso machine while exercising the brain with today's free Kuroso games. And a whole load of pills, of course.

BTW an old friend is back. Constipation returns... I'm gradually ramping up the treatment - Senna and Fybogel so far, Laxido will be back on the menu this evening.

04/06/20 (3)

No walk or roll today - I got my exercise by putting together a new double-bin tumbling compost maker to replace our ancient (well, nearly 18 years old) rotating bin which had come to the end of its working life with a split where the axle went through on one side. The new one came as a flat-pack and assembling it was quite a challenge. Of course the assembly instructions were diagrams only and often only possible to interpret with a good deal of trial and error usually involving backtracking and starting again... but got there in the end. I may have a few unfamiliar aches and pains after that.

Old familiar dex side-effects started to kick in today - the curious combination of dry mouth with excess salivation, and the off-putting taste of fruit juices. Tomorrow morning is a grapefruit day, which I'm not entirely looking forward to. I may suggest moving grapefruit day from Friday to Monday, as far away from dex day (Wednesday) as possible. Tuesday is an egg day, no chance of moving that!

04/06/20 (2)

07:20, which means it was a classic dex night. Not the worst ever, but bad enough. I went to bed at 02:20, read on my Kindle for ten minutes and slept for two hours. From 04:30 onwards I was awake most of the time and gradually made it till about 06:45, sleeping very fitfully, little more than five minutes at a time. Eventually had enough so got up, took my Bonefos pills (the new bisphosphonates), washed, shaved, dressed, booted the computer and here I am three-quarters of an hour before my alarm is due to go off.

No more dex for a week so the effect should be less tomorrow. I look forward to that...

04/06/20

Looking back over the beginnings of this blog I realised that the second-ever post "Background" left several important things out of the case history. I've edited it for completeness of the record, and the new bits are in italics.

To find "Background" click September in the 'Blog Archive' box on the right, then scroll almost all the way down. As far as I can tell there's no way to link directly to an earlier post, which would be a useful feature.

03/06/20

Unusually, I didn't fall asleep after getting back from my daily "exercise" - which, for once, my watch registered as 'cycling' rather than ignoring it altogether. It must think I'm the slowest cyclist on record.
Maybe staying awake was because of the 20mg of dexamethasone I took this morning. The dex still comes in 2mg pills, so I take ten at a time. Why don't they make it in bigger sizes?

02/06/20

My myeloma may be in remission and inactive, but that doesn't mean that all effects have gone away. My stamina is not what it was, and I get tired more easily. Every time I get back from a walk/roll I can't stop myself falling asleep and dozing for an hour (or two). Yesterday afternoon we did the local two mile walk around the two farm reservoirs visible from the end of the garden. Going downhill to reservoir #1 is hard work even with the all-terrain Victor the Veloped, mainly because the field-edge footpath slopes badly from right to left so I'm constantly fighting gravity trying to send him off to the left and into the crops. The rest of the route is much easier but nevertheless I crashed out at home after feeding the fish and the cats (Sue did the people tea) and nearly missed my regular weekday 5pm online backgammon date. Thanks to Sue I didn't - it would have been an unforgiveable sin.

I don't know where this exhaustion comes from. My red cell count is OK, although at the low end of normal (4.58, where "normal" is 4.4 - 5.8). It can't be the chemo, because I had it through all of the three months treatment-free that have just ended. I don't think it's lack of physical condition because I do get out for a decent walk almost every day and have done so all through the lockdown - although I certainly wouldn't claim to be super-fit. Not by a long way. It isn't anything like as bad as full-blown fatigue, which I expect I'll experience at some stage. That means you can't even raise the energy to get out of bed. My daily routine isn't all that different from what it was before MGUS and myeloma - I just haven't spent as much time sitting in the car for the last several weeks. "It a mystery" - Detritus the troll (the wise and much-missed Terry Pratchett).

01/06/20

Great news from last Tuesday's bloods: paraproteins still "No paraproteins detected". The other numbers all look fine to me.