29/09/20 Fatigue

Little doubt in  my mind that the fatigue - and having done some research I think I can now safely call it that rather than just tiredness - is slowly getting to be more of a problem.  It's at its worst over the weekend, which links it to Wednesday's and Thursday's dex disappearing from my system. I must ask Dr.Ch about splitting the dose e.g. Wed and Sunday in the hope of avoiding the "dex crash". OTOH I might end up with two of them a week...

This comes from the American National Cancer Institute website cancer.gov:

That fits me pretty well, when it's at its worst. And we could add side-effects of treatment to the list of causes.

Light drizzle all day today, which (yet again) has interfered with exercise plans. However, I now have to get around the back of the computer to replace a USB hub which I suspect is failing. Had to replace the other one a month or three ago, and that was successful. The amount of furniture-shifting involved will just have to be an adequate substitute for a good walk.

UPDATE: USB hub transplant accomplished. All OK so far...

28/09/20 Complications with GP

Complications, complications... I had an appointment at 15:00 for a 'phone conversation with my GP - the regular prescription review. But instead the phone rang at 13:00 and I found myself talking to the "lead clinical pharmacist" at the surgery, who did the review. It seems that she's now doing them all, instead of the doctors. The only issue concerns the 40mg Furosemide (diuretic) which I now take 3 days a week to keep the ankle & foot oedema (probably caused by steroids) away. Last time I found the 20mg didn't have any effect but 40mg daily was enough to banish the swelling (which was bad enough to make putting shoes on near-impossible). It's vanished off my repeats list but I added it as a "custom" item to a prescription renewal that I put in online last night. Now I have to wait around for a call from reception to book a time for a 'phone call from my GP about it. Result: two phone calls where it might have been just one, and I have to hang around at home because I don't really want to take that kind of call when I'm outside with traffic noise and all that. But it's a much better day so I may just go out anyway...

UPDATE: Much better day and have been out round the local triangle. No incoming call from the surgery but I 'phoned AXA to check they're OK with another PET/CT scan, which they are.

27/09/20 (2) Dex crash

It's been an unproductive weekend, as the "dex crash" - if that's what it is - has hit hard. I've been flat out too much of the time and haven't found the determination to get outside for some exercise in this unpleasant weather. Easier to stay inside and do nothing. Well, a bit of cooking and a bit of paperwork, but not a lot else. But inevitably, at a minute or two short of midnight, I'm starting to wake up and feel a bit livelier. Been like that all my life and not going to change now! But I need to find a way to fight this tiredness / fatigue / whatever it is that hits particularly hard over the weekend, although not usually for both days.

27/09/20 Complete immunological remission

 A short quote from my haematologist's most recent letter to my GP:

"he continues in a complete immunological remission"

and long may it last....

Weather still foul today. That'll be at least three days without a decent walk, although I did manage a short one yesterday (in light rain and howling wind).

25/09/20 (2) Weather forecasts

Very disappointed in the BBC, and not for any of the usual reasons. The one time I trust a same-day forecast (see image in previous post) they get it completely wrong. We've not had more than a drop or two of rain since about 9 this morning so could have gone out, although it's cold with a strong blustery wind so wouldn't have been very pleasant. Will try for an expedition tomorrow.

25/09/20 Dex night and bad weather

Went to bed 02:00 last night, read for half an hour (much interrupted by Blue head-butting my Kindle) and slept through to 06:30 before waking in that dex way that says there's absolutely no point trying to get to sleep again. So four hours altogether, which is not too bad for a dex night.

The plan was to go to Great Notley Country Park for today's exercise but the forecast is for rain all day (and cold as well) so we may have to settle for something quick and local if there's a break in the weather.

Things look a little better late afternoon, but that's Tesco food delivery time as well as my regular backgammon commitment so won't be able to go out then...

I've just put a new set of batteries (2 x AA Duracells) in the digital thermometer. As that's been used pretty much daily (and sometimes several times day) for a year, can't complain too much.

24/09/20 Self-checks

Slept OK last night (dex#1), just waking up half an hour before the alarm. I have an ominous feeling tonight (dex#2) may not be as good...

Had a short walk in Oaklands Park this morning before Sue went off to a socially-distanced six-person session with one of her wind bands.

I've mentioned that I take my temperature every morning (except the few when I forget) and I also check blood pressure regularly. This evening was 101/63, which my chart tells me is "Ideal Blood Pressure". Long-term average is around 110/70, also "Ideal" - and that's without any of the blood pressure meds that I used to take until two or three years ago. Other routine but occasional tests are blood sugar and oxygen saturation (because one of the signs of COVID is reduced oxygen without the expected breathlessness - although I haven't heard much about that one for a while now).

I do wonder whether the people now rushing to get their stem call transplants done are paying much attention to the six-month period when their immune systems are rebuilding to full strength at the time when the infernal virus is surging again. I wouldn't want to take the risk of a transplant for quite a while yet, although I realise that going ahead may be more urgent for some people than for others (and I'm in a good position to delay for as long as possible).

23/09/20 (3) NHS Test&Trace

I just installed the new NHS Covid Test'n'Trace app on my phone. If I carry on as I have been doing, I doubt it'll come up with anything. But you never know...

23/09/20 (2) Missing FBC

I got fed up waiting for a  response to my email asking about the missing Full Blood Count numbers from my last set of bloods so I 'phoned Springfield Chemo. They checked the records and found that part of the analysis hadn't been done - they say somebody had forgotten to tick an all-important box.

I went in again this afternoon and they took another sample, borrowing one of the radiotherapy rooms downstairs in the Oncology Centre because all the chemo bays upstairs were in use. I had to wait just a few minutes before a printout of the results arrived - these automated analysers are remarkable machines. The only thing is that platelets are down below the lower limit again, but they keep fluctuating either side of that so no need to panic.

There's an aspect of this that the chemo nurses are concerned about - I got my full package of meds for the current cycle without a complete set of blood results being available, and the policy is that they don't issue the meds unless the bloods say it's OK to do so. That's why I always have bloods done a few days before the end of one cycle and before the start of the next. Fortunately all is OK and that hasn't led to a problem.

23/09/20 All normal

 A normal night last night, although I woke up half an hour before the alarm. Something of a relief that I'm not going into regular bad nights.

Temperature 36.6, which is fine. I aim to check it every morning but occasionally forget...

22/09/20 (2) Non-dex sleepless night

 A rather strange sleepless night last night (Monday), well away from my dex nights (Wednesday and Thursday). Woke up after an hour and a half, couldn't get back to sleep so did things on the computer for  few hours and then went back to bed again. Maybe it was one of the occasional sleepless nights I used to get one of every year or so before this all began. I certainly hope I'm not going to start getting bad nights on top of the expected dex ones.

This morning we did the "long walk" in Admiral's Park - first time for me since lockdown. Another beautiful autumn day, and a very enjoyable affogato from the Cafe (espresso poured over ice cream).

22/09/20 Wivenhoe and fatigue

Wivenhoe yesterday was good, although the drive through Colchester to get there was - as usual on that road - very slow. The northern route through Sudbury would be a good deal longer but might well be faster.

The modern river frontage on the Colne is very attractive. There were several good looking pubs but we settled on a panini from a small Syrian cafe, the Olive Branch

I was fine driving but had my usual collapse when we got home and couldn't keep my eyes open for a while. No other news on the myeloma front, still awaiting a response from Springfield about the missing numbers on the most recent blood test results, no date for the new scans in London yet either. Still a very (very) slight tenderness on the 'flu injection site but nothing to worry about.

Leaving aside the possible  rib lesion / shoulder pain issue, it's becoming increasingly clear that after the dreaded constipation, tiredness / loss of stamina / fatigue is becoming the #2 issue I have to deal with on  daily basis. We're planning on getting a skip in at some time over the next week or two in order to have a major clear out of the garage and workshop but I'm not at all sure I'll be able to do my fair share. Shifting heavy stuff up from the workshop will be hard, even in a wheelbarrow, and I doubt I'll be in a state to do much more than an hour or so without needing a longish break to recover. The problem will be getting Sue to work at a pace to suit mine...

21/09/20 Autumn mists

First autumn mists of the year. Would have been mistier if I'd been awake to take a photo rather earlier...

Today's plan is to achieve the postponed visit to Wivenhoe for lunch.

Nothing else, still  slight tenderness at the 'flu injection site but otherwise fine.

20/09/20 South Weald Country Park

 Another beautiful September day, and some real colour starting to show in the trees. Today's expedition was to South Weald Country Park near Brentwood - somewhere we've rather avoided recently because there's only a fairly short walk from the main car park before it gets either too hilly or too muddy. Today we used a different entry point and car park, and that led us to discover several bits we didn't know about before. The car park is next to the cricket ground, and it was good to watch a few deliveries while Sue was dealing with the ticket machine.

No significant reaction from yesterday's 'flu jab, just a slight tenderness at the injection site that developed overnight.

Coronavirus news is not good again, particularly as I shall have to travel to London for a PET/CT scan at some stage - no idea of when just yet but it's looking as if London may well be back into some kind of lockdown again. Not very good timing.

19/09/20 Flu jabs

There's been a lot on the Facebook Myeloma group as to whether we should have 'flu jabs or not. Sue and I had ours this morning, and no reaction at all (yet), not even a slightly sore arm. It was all done in the open air in the GP surgery car park at one of several socially distanced stations they had set up, which makes a lot of sense from the point of view of reducing COVID risk. Face-masks all round, of course. It was a warm sunny morning with not much wind - might have been different on a cold rainy day with the wind  blowing everything around. I suppose they would have just moved inside. Sue found it a bit odd having the injection in full view of passers-by etc., but that didn't bother me a bit.

Tesco's food delivery yesterday came in "tray liners" rather than the usual plastic bags. These liners are like oversized bags but without handles. Stuffed full - especially with bottles of milk and fruit juices - they are heavy and not  easy to handle when you have to lift them off the floor and carry them through to the kitchen. The consequence this morning is that after several days with no shoulder/neck problem, I've now got it back again. Not badly, but definitely there. Just muscular, or is that side of it triggered more easily because of the rib lesions? It's very hard to decide.

After the 'flu jabs we went for a short walk in Tower Gardens (the first bit of Admiral's Park in Chelmsford). I didn't have a walker in the car so had to do it with just a stick - that was OK but definitely slower than I am with a walker, and had to pay very close attention to avoid tripping or stumbling - one tree root nearly got me. I can't help remembering what it was like just a year or so ago when even a tiny stumble (with two sticks) would send agonising pain through my hip and freeze me to the spot for a few seconds before I could move again. Slightly scary if it happened while crossing a road... 

18/09/20 Shoeburyness

A better night last night - slept a straight five hours after the second dex morning. We had planned to go to Wivenhoe (just south of Colchester) and maybe have a pub lunch, but reports of two separate delays on the A12 forced a change of plan and we ended up at Shoeburyness, on the far side of Southend. A little bit run-down, not very interesting, but the great advantage of being very quiet. Maybe everybody else was kept away by the wind. Had a decent walk along what passes for the front and enjoyed watching the kitesurfers and a windsurfer.

Drove into town to find a chippy and brought the food back to the car park to eat sitting on the grass - I had my walker in its seat mode, and Sue had brought a collapsible garden chair.  Never eaten fish & chips outside in such a wind before - not very easy!

Results of last week's blood tests have come through - paraproteins still undetectable, lambda light chains a trifle below normal range. But all the haemoglobin and red and white cell results are missing - I've emailed a query to the chemo people at Springfield but don't expect a reply before Monday.

One pleasant surprise - the new pack of AdCal tablets (chew two a day) are lemon-flavoured. Rather nicer than the pseudo-orange flavour I've had so far.

18/09/20 Nothing much

Not a lot today. Went for a walk with Sue along to the ford at Good Easter, and expecting another sleepless night tonight. Got some more computer housekeeping done, wrote a few emails, and that's about it. The right shoulder is still good(ish) symptomatically, but I still have that instinct that the back rib lesion is doing something... No news yet from the Scanning Centre about an appointment date.

17/09/20 (3) Dex side-effects

Just two hours of somewhat interrupted sleep last night, not entirely looking forward to tonight after another 10mg of dex this morning. Some people say dex side-effects get worse the longer you're on it, which does not augur entirely well for the future. I can't imagine how people on 160mg a week long term cope with it.

17/09/20 (2) Cannulation

I've been searching for details of the process of intravenous cannulation, as used for zometa drips and other things. There's a lot more to it than one might imagine. Fascinating stuff. I shall watch the next one with a lot more insight.

17/09/20 Pepper's Green Lane

Nothing much today, by which I mean yesterday 16th as I usually write these posts after midnight. Slept badly after dex night #1, we'll see what happens later tonight after #2. And also the first Lenalidomide of the new cycle.

Spent most of the morning cooking (see last entry) and doing housekeeping work on the computer, and got in a just-good-enough walk to Pepper's Green Lane, including finding a new route past an area of 40 or 50m that usually forces me into the road facing the oncoming traffic, which isn't entirely comfortable. And coming back the other way, in the same direction of the traffic, is rather worse. The alternative is to cross the road twice to the lay-by on the other side and back, but the visibility isn't the best there so it's just swapping one risk for another. American readers will have to remember that I approach from the left on the right hand side of the A1060, and traffic approaching from the right (Chelmsford) is on the left side of the road as they see it - and often going rather fast.

Inevitably, now we've got a plan to investigate, the right shoulder has been good apart from that slight feeling that it isn't quite right. In fact, apart from the slightly reduced range of movement, the left shoulder that I broke nearly three years ago feels better than the right one.

16/09/20 (2) Soup

It was a dex  morning (10mg today, the other 10 tomorrow) and Sue was out with a friend in Central Park so I made Broccoli, Spinach, and Parmesan soup in the Thermomix, and Gordon Ramsay style scrambled eggs for my lunch. The soup, which we'll have for tomorrow's lunch, is mainly to use the carton of sour cream that I ordered to go with the Pork, Beetroot, and Apple thing I made a week or so ago. I twice forgot to dress the veggies with the sour cream...

Otherwise, about to go for a walk down Pepper's Green Lane way. There's some shade in that direction, and it's another very hot day in this Indian summer. If you're allowed to call it that these days. Probably not.

16/09/20 Zometa & Oaklands Park

Back to Springfield yesterday afternoon for my four-weekly Zometa (bone strengthening) drip and a new batch of pills. Not for the first time, the pharmacy forgot my dex so there was a small delay while that got sorted out. In the morning we had coffee and a couple of circuits of Oaklands Park in Chelmsford by way of exercise. It's not very much, but enough to abolish the guilt feelings from not going out at all.

That's the front of Oaklands House, which is also the Chelmsford Museum and Chelmsford Regimental Museum - currently closed because of the infernal virus. There's more park round the back.

14/09/20 (2) Phone consultation awith DCr.Ch and non-secretory myeloma

I've had my four-weekly 'phone consultation with Dr.Ch. The basic plan is to continue with the current Len/Dex indefinitely (or until there is evidence that it isn't working any longer), although with an eye to gradual reduction of dosage if we can get away with it. So "consolidation" gradually turns into "maintenance" without any real distinction between the two.

He accepted the possibility of the rib lesion becoming active again and of my myeloma becoming non-secretory. He is organising PET and CT scans to check for this, which will be at The Scanning Centre in London so at some point I'll have to make the journey there. I hope we're not into a full-blown second coronavirus wave by then...

He also raised the possibility of involving a muscle specialist for an opinion about the shoulder thing, but that didn't develop any further at this stage.

Another promise to send the Bone Marrow Biopsy results through, along with a cytogenetic report which apparently does exist after all, and I've asked for copies of the early blood tests - first one I have is 18/11/19 and there were three or four before that, as far as I recall.

I had a decent walk around the triangle as well.

14/09/20 Wat Tyler Country Park

Yesterday's exercise excursion was to the Wat Tyler Country Park at Pitsea on the edge of Basildon. We've  been there several times before but not for two or three years. A lot of interesting history, some of it C14 and some of it WWII when it was an important munitions and explosives site.

Particularly fond of these wooden sculptures of Wat Tyler and his revolting peasants.

The back has slowly improved through the day and will probably be OK in the morning. The shoulder problem is there but quiet.

13/09/20 (2) Right shoulder improved

The right shoulder seems a good 75% easier this morning, but it's complicated by what feels like a muscle strain in middle back, left side. Quite a nasty one. I'm assuming it's something I did while grappling with the trellis panels yesterday and have upped my paracetamol dose for today. If it's not one thing it's another!

Pills organised, so we're now free to go out somewhere for the afternoon and some lunch somewhere. That's a more attractive option than reading the Sunday papers, still full of the returning coronavirus. It's not over yet, by a long way. I fully expect to be told to go back into full isolation - not that it would actually make a great deal of difference.

13/09/20 Right shoulder problem

The right shoulder was OK first thing yesterday but started to get difficult in the afternoon. That may, of course, have been because I did some gardening including removing a couple of broken trellis panels from he top of the fence between us and our neighbours on the left. I wasn't all that easy - both getting access with a stepladder and removing all the vegetation that had worked its way in and out of the trellis - so the consequences might have been just muscle tweaks. It got worse for the rest of the day, and I was aware of "something wrong" in or behind the shoulder-blade, rather reminiscent of the way I was sure there was something mechanically wrong with my left hip before we found out about the lesion and the extramedullay mass there. Or, now I've got the idea in my head, it could be just an over-active imagination. Either way, I've given myself a good post-shower spray of Deep Heat and we'll see what it's like in the morning.

12/09/20 Glycerine suppository time #3

For the sake of the record - glycerine suppository time again. I think I should have gone to Laxido a day or two earlier...

Live and learn! It needs constant and careful daily management to avoid reaching this stage. Third time now, and that's more than enough. This one did rather creep up and take me by surprise.

I was going to illustrate with some humorous clip art, but maybe not.

11/09/20 (2) Springfield Macmillan Award

Back to Springfield today for the nurses to take another lot of bloods and do my third COVID-19 test. Full results will be in a week's time. I tried the non-secretory idea out and it seemed to go down quite well - certainly not dismissed out-of-hand.

Some good news about Springfield:

11/09/20 Dex and Maldon

A better sleep last night after the second 10mg of dex - a good uninterrupted five  hours. after only two and a half the night before. Strange that the sleeplessness should only return to this extent at the end of four 4-week cycles.

Good walk yesterday in Maldon, which has become a bit of a favourite destination. The tide was as low as I can remember seeing it, and this statue is of Byrhtnoth (alternative spellings are available) an Essex leader who died in the Battle of Maldon in 991.

10/09/20 (2) Sunrise and non-secretory myeloma

Dex sleeplessness again - the first bad one for a while. Went to bed a bit before 02:00 as usual, woke up about 04:30, gave up the attempt to get back to sleep at 05:00. Still wide awake at 05:50, with a couple of sunrise photos. Just like old times.

On the non-secretory myeloma subject, here's another post from a new contributor to the thread:

"Currently relapsed, not shown in bloods. Detected by growing pain, phoned team for advice, they requested CT scan, phoned following day, admitted that morning & MRI pm, evening told MM back & fracture of L1 surrounded by mass, follow up PeT scan showed 5 other small but active lesions. BMB showed MM active, going forward consultant said I would be monitored by pain levels, BMB, PeT scans."

I know I have (had?) a number of other smaller lesions in upper and lower spine and pelvis. The big left hip one was #1, followed by the 4th rib #2. None in the cranium, to the best of my knowledge. As far as I know none of the smaller ones are causing any trouble, but might be wise to monitor them more closely.

10/09/20 Non-secretory myeloma

Some interesting ideas have come up on the Facebook Myeloma UK Support Group today, possibly related to my intermittent right shoulder / neck pain problem. My rational mind says that it's purely muscular, if I've done something a bit stupid the day before. That's supported by a generous spray of Deep Heat usually being effective. But sometimes it appears for no obvious reason and it doesn't always go away quite that easily.

The other part of my mind remembers that lesion in rib #4 at the back - the one that was most probably responsible for the pain in my right shoulder blade. I've always had the feeling - and if I recall correctly it may have been supported by either the radiotherapy consultant or one of the technicians - that I might end up having a course of radiotherapy for it.

Here's the important part of the first Facebook post:

"Can myeloma relapse without showing in the blood work? My father has multiple tumours but his bloods made us and his consultants believe it was still at bay. It was only due to him being less energetic/ mobile that a scan was done."

and the second:

"Mams doctor told us that light chains are important blood indicators however another doctor told us it is not always about the blood numbers but how you feel in yourself any pain or recent changes in health"

I certainly get occasional pain in that area, and the tiredeness / fatigue is getting slightly worse, especially after any exercise when I tend to collapse in a chair downstairs and go dead to the world for an hour or more before I can raise the energy to stand up and start doing anything.

the third: 

"That is interesting- thank you so much for replying. He has been on dara, Dex and revlimid for a year. He started slowing down very slightly in lockdown but was put down to him not having his physio and weakening. Last 3/4 weeks been getting worse so a scan was done. His consultant wants to be sure it’s def myeloma so is doing a biopsy tomorrow and then hopefully treatment will resume ASAP."

and the fourth and last:

"Yes can change to non secretory."

Non-secretory myeloma means no production of paraproteins or excess free light chains, so it could match the bloods results I've been getting. But the effects on bone can remain - and get worse.

That's not a complete picture, but it's enough pieces of a jigsaw to suggest what the full picture might look like. Or on the other hand, maybe it's just muscular...

I have a 'phone consultation with my haematologist on Monday (14th) and will raise this with him. If he doesn't reject the idea out of hand, I suppose the next diagnostic steps would be a PET scan (probably involving a trip to London, not a great idea at this time), X-ray or CT scan, and another BMB (bone marrow biopsy). All of those should be possible at Springfield.

That's the first completely myeloma-related post I've written for quite some time. And I did get a good walk around the triangle and across the fields this morning. I then fell asleep for long enough to be late making lunch...

09/09/20 Consolidation or maintenance?

 Another day without much to report. Had a decent walk early afternoon, took my last Lenalidomide last night. This week, starting today, is Week 4 of Cycle 4 of the original "consolidation" programme, and week 4 is always without Len although the dex continues. I'm just focused on the next round of bloods, 'phone consultation, Zometa, and paraprotein / free light chain numbers - as well as finding out exactly what Dr.Ch has in store for me next. The original plan was to go on to "maintenance" with Len only (probably at a lower dose than the current 25mg) but a couple of things he said last time suggested he might want to continue dex as well.

07/09/20 Essex Way, Ongar, Sainsbury

Had a good walk this morning on part of the Essex Way across the fields at the back of Sainsbury's in Ongar - more interesting than perhaps it sounds. We followed that with coffee sitting outside at the King's Head and then did a bit of shopping in Sainsbury's - first time I've been inside a shop of any kind since the lockdown began. Not too many people in there, and very high compliance with face-mask wearing - must have been something like 95%, which Sue tells me is much higher than the average. 

07/09/20 Pork loin with beetroot

Spent much of the day in the kitchen, with Pill Organisation, butter-making, and this evening's rather complicated dinner. It's good for me to get stuck into some proper cooking from time to time, but the trapped nerve (or whatever it is) in my right thigh doesn't like the amount of standing that's involved. 40mg of Amitriptyline a day keeps it under control most of the time, but when it breaks through that it's as bad as ever. No choice but to sit down, slap my thigh as hard as I can a few times (what I really feel like doing is sticking a knife into it) and waiting for the searing burning pain to go away. This is nothing to do with my myeloma - it goes back some thirty-five years at least.

Getting caught up with all that I completely forgot to take my lunchtime pills after a home-made tuna mayo sandwich (I made the tuna mayo for Sue, who was out at a first birthday party for the son of a friend). Fortunately none of them are time-critical so I just added them to the evening batch.

The meal - a sort of Eastern-European inspired Griddled Pork Loin steaks with Beetroot, Red and White Onions, Apples, Caraway, and Paprika - turned out well and gave an opportunity to use my new "professional" mandoline on the onions. The old - and rather more amateur - one somehow disappeared during the last clear-out of the kitchen cupboards and drawers. Can't believe that I threw it out on purpose, and Sue denies all knowledge... IMHO a kitchen is not complete without a decent mandoline, even if you don't use it very often.

I'm annoyed that I forgot about the sour cream which was supposed to go on the veggies, but half the dish is in the freezer and the sour cream is OK until the 19th, so we can try again in a week or so.

That's it, with half a (microwaved) "baked" potato as well. A recipe worth saving.

Water butt update - a tiny leak where the rainwater diverter enters the butt, but that's no problem. The seal around the tap is still good, no leakage down there.

Constipation update - pretty much back to normal on one Senna a night. But this is my last week of Lenalidomide on the current cycle, it's just dex from Wednesday onwards. That change might well throw things off balance again.

Tues 15th will mark the end of the originally planned four cycles of "consolidation". I'm not quite sure what Dr.Ch will want to move on to after that - original plan was low-dose "maintenance" Lenalidomide only, but last 'phone consultation suggested he wanted to keep some level of dex going as well. I have another 'phone consultation with him booked for the 14th, so should know more after that.

06/09/20 (2) Beware beetroot!

Memo to self: don't mix prepping the evening's dinner with the Pill Organisation Ritual. Especially not when it involves peeling, quartering, and roasting 500g of raw beetroot. I nearly ended up with rather more red pills than expected...  Same applies to butter-making, unless you want pale pink beetroot butter.

One thing at a time!

06/09/20 Myeloma face-mask, Marks Hall

Again, nothing much new. Forgot to mention that my MyelomaUK re-usable facemask arrived a few days ago - haven't used it yet. Yesterday we went to Marks Hall Arboretum (near Braintree) and got a good walk in. We also found that our membership expired last November, so I've had to do a quite expensive and unexpected renewal. We've been there at least three times since November 19 without anybody spotting anything wrong with our membership cards...

Myeloma continues. A few rather depressing posts on the Facebook group from people having a very much worse time than I've had so far. They remind me that I'm still very much a beginner at this.

05/09/20 Water butt and air cooling

 Not much to record for yesterday. It was one of those days where I seem to have been quite busy with small things but never found the opportunity for a walk. It wasn't helped by the timing of the Tesco delivery, right in the middle of the block of time I might have used otherwise.

The people who sold me the water butt (through Amazon Marketplace) have agreed a return, but things moved on overnight. We had enough rain to fill the water butt up to the point where the rainwater diverter goes in. This gave enough water pressure to "pop" the dent out (which did not happen when I filled it from a hose). That straightened the area around the tap hole enough to reduce the drip to less than half the original rate. I emptied the water out and was able to tighten the tap rather more than before. I've refilled from the hose and now there is no sign of a leak around the tap, although it is still off-true rather than on the centre line. I think the way forward now is to leave things for a week or two and see how it goes, as I have 30 days to do the return if it's needed. 

I've installed a couple of "personal space coolers" (mini air-conditioners with evaporative cooling) either side of my computer desk - not needed as much now as they would have been a few weeks ago when the combined heat output of my rather complicated computer and the TV made things close to intolerable in here. My hope is that they will reduce, if not eliminate altogether, the need for the fan which blasts air across my neck and shoulders and I'm sure contributes to the various muscular problems I get in those parts.

"Personal Space Cooler" at bottom left - there's another one out of shot on the right. T20 highlights against Australia on the TV, blood pressure monitor just below the middle of the three monitors. You can just see the edge of the right hand one if you know what you're looking at...

That's all for today. I keep taking the tablets and waiting for the next lot of bloods (full results should be in on the 18th) and hoping that the paraproteins and free light chains will stay where they are. Sooner or later it's inevitable that they will start to go up again, that's the nature of this remission-relapse disease. And then it will be the big decision - move on to second line chemo, or do the transplant.

Live music is starting, very tentatively, to return to a few of my regular haunts. It's very tempting to take a chance and go to something, but my policy is clear. Not until there's a vaccine that works for immune-compromised people, and I've had it. If that means no live music for another year, as it very well might, that's too bad. I think I've bought enough tickets over the last few years to have done my bit for a while.

03/08/20 Dunstable Downs

Yesterday we went for a socially distanced picnic lunch at Dunstable Downs (near Luton and Whipsnade Zoo) with my old college friends Mr.Anonymous from the Comments and his wife. Pleased to say that the Cheesy Parmesan Biscuits went down as well as usual and we didn't have to bring any back. It was good for all of us to get out and see and do some different things. The natural route for us is M11, M25, M1 and then a fairly short cross-country drive, but sat nav warned us of problems on the M25 because of a crash so we took the alternative route north of Harlow. It was a nightmare, complicated and very slow. We were best part of half an hour late for the designated meeting, and there are few things either Sue or I dislike more than being late for anything. The motorways were clear on the way back, apart from many long stretches of 50mph limit for little obvious reason. Most frustrating.

The laxative precautions worked OK and I've put myself back on just the senna for the time being. But, never as far as I can remember ever in my life taking a laxative until this all started, I think it's clear that daily monitoring and management is going to be a "regular" feature of the rest of it. At least I'm better at it than I was at first!

02/08/20 Constipation over

Made a batch of my signature Cheesy Parmesan Biscuits this morning, for reasons I may write about tomorrow. The last batch I made was a bit disappointing, but I think I got it right this time. Also went out to Tesco to fill the car up with diesel - using a glove to avoid any viral contamination of the pump. Paid at the pump to avoid going into the shop (not that that was unusual even before the virus). And that's about it.

The recent constipation crisis is now over - two Laxido nights sorted things out. I haven't taken anything except the usual "background" Senna for the last two nights and if I've calculated aright should be OK until this evening.  Back to Senna / Fybogel / Laxido again after that, I expect.

Starting to feel that the pressures of lockdown are beginning to get to both of us. Although in many ways it doesn't feel like six months (and a whole spring and summer) of little but our own company, a day out will do us both good. And maybe I need to find a way to get out on my own for the best part of a day, just to remind myself that there is a world out there that doesn't know a thing about my myeloma and wouldn't give a d*mn if it did. Get a bit of perspective back.

01/09/20 Blog anniversary

 Here we are - by month at least - starting Year Two of this blog. The good news is that I'm still here, still in International Stage One, in full remission after first line treatment only, and generally in a far better state than might have been expected. On the other hand, that's one year of my Revised Myeloma Life Expectancy gone... Overall, health is not too bad although a combination of the disease and the treatment undoubtedly leaves me with less energy and less stamina than I used to have. I get around the house and garden without a stick, but outside I need at least one for short distances on good ground and rely heavily on a walker for increased security and stability. Things could be a lot worse, and my walking is a very great deal better than it was a year ago.

Back at home, the #2 water butt remains a problem. I removed the tap and found that the external sealing ring had been damaged by - I presume - whatever impact in transit dented the plastic and knocked the tap off-centre. I replaced the seals inside and out from stock and by cannabilising the old water butt, but that failed to cure the leak. So it's back to Amazon. I have to wait for two days for the selling company to get back to me about return or replacement. Not much point in returning it now I've drilled a hole in it for the rainwater diverter...