31/07/21 Nothing out of the ordinary

I can't let July go by without marking it in some way, pretty poor summer that it's been so far. Nothing out of the ordinary for the last couple of days - some rain, some boules, lots of pills. All as normal. Trying to think up some questions for Dr.Ch on Monday so that we don't waste a face-to-face  consultation - after all, I'm sacrificing a boules morning with Epping for that!. I had to chase up Sarah his secretary for the usual GP letter and sleep apnea referral - those have been done now but should have been done ten days ago...

That's about it. I can't think of anything else worth writing about at the moment. I'll be back in August, hopefully with something to say.

UPDATE: Did Pill Organisation after breakfast, then we went to Great Notley Country Park for a good walk and a light lunch - egg mayo and cress sandwiches, very good! Activity target back up to 400, but got there OK with a bit to spare. 

Finger splits! I've got a new one. This time it's o the inside of the first knuckle of my right middle finger. No idea how it got there, but it stings nastily if I get anything into it. Post-shower ankle oedema is bad again and my weight is up, suggesting some water retention. I need  a Furosemide or  two but later today is out because of boules (unless rained off, which is not unlikely) and Tuesday is out because I have to go to Springfield Hospital in the morning.Wednesday we have both the burglar alarm man coming (long story) and the new cleaners, so not ideal. Will have to take one when I get back from boules,I suppose.

29/07/21 Rain. Again.

A wet morning nade us abandon plans to go to Great Notley Country Park (no shelter) but we went to Oaklands for a walk twice round and lunch during a break from the rain. And then had a downpour on the way back home...

Have started work on my collection of diagnosis stories from the facebook group, anonymising, getting consent to forward outside the group, and etc. before sending them all to MyelomaUK where I hope they may do some good. Another couple of fairly uninterrupted days to go before I've finished the job, I think. And one way and another I don't get many of those...

I hear that the grass carp video went down well!

Back to single senna until Saturday evening. Things seem relatively easy to manage at the moment, haven't needed a Fybogel or Laxido for a few weeks.

About to start Week 4 of the current consolidation cycle - the one with no Lenalidomide. So it's going to be back to worrying about the next set of bloods (due August 5th), Zometa drip, and all the rest that happens at this stage, including another face-to-face with my haematologist.

28/07/21 Constipation management again, and grass carp

Hard to believe that we're already nearly into the third month of this rather strange summer....

The constipation management plan worked again - no problems during the evening session at Tower Petanque. I played really badly at first but got it together later on and played some good boules winning a couple of ends, and I was on the winning team in both the matches I played. So not too bad overall. Nothing more until possibly a friendly session at Ongar this afternoon, so I took double senna late last night.

I really hate this need to constantly manage the bowels, but it has to be done. Otherwise it would be the glycerine suppositories again, and I really don't want to reach that point another time,although I'm prepared for it.

Some activity on the facebook myeloma group has led me to re-think my decisions about transplant, COVID, and consolidation treatment, and it has confirmed my decision to defer transplant for as long as possible, if ever. I don't want to go through transplant and a year of recovery unless it's an absolute last resort, and I don't see that coming. I hope...

I've been trying - without success so far - to get some video of the sparks generated by boules, which are only visible when it gets dark - and Tower Petanque has  floodlights which allow play to go on long enough. Instead of  that, I have some video of the big grass carp in our big pond. He's put on a lot of weight since we moved him there, and he's doing a great job of keeping the blanket weed under control.

I've asked Sue to forward this video to the twins who visited recently and were fascinated by our ponds. Thy didn't get to see the big grass carp, so they should enjoy this.

27/07/21 Constipation management

My constipation management strategy worked well enough for boules at Hanbury Gardens (Epping) to be unaffected - although there are decent facilities there if needed, which isn't true of every piste! Nothing else now until 20:00 this evening, which should be plenty of time for last night's double senna to have worked its way through.

Bad journey to Hanbury - I tried the direct route avoiding the M11 and M25 but had several "Road Closed" signs and diversions to deal with. As a result I arrived nearly half an hour late but was quickly accepted into a game  and played well enough, winning a few ends, to get some respect from the other players. And that is what I want. Again, a very friendly and welcoming group of people. The good thing I've found at all the different places I've played at is that nobody gives a d*mn about who you are or your background, all that matters is that you like the game and how good you are at it.

It's been a long night on the facebook Myeloma Support group, and I still haven't got round to new member applications. I think they can wait until tomorrow, or maybe one of the other admins will deal with them before I'm up and about, which won't be too early after a couple of days of morning boules. But it is a dex night, so anything might happen...

25/07/21 Thunder, lightning, fatigue.

Played at Ongar this morning without a drop of the promised heavy rain. Friendlies only, Brian not being available for our last remaining doubles match. Afterwards,nbeing a bit in the right  direction already, I dove to Epping to investigate the Stonards Piste where the Epping club play on Saturdays (my one sworn no boules day!). Small piste, very thin gravel over a hard base with lots of big stones. Looks very much like a place for the high lob and not much rolling...

Constipation management plan working OK so far. Now I have to get past tomorrow morning at Hanbury Gardens....

The heavy rain began almost as soon as I got home mid-afternoon. Lots of thunder and, presumably, somewhere some lightning. Very very frightening... Despite that,I fell asleep of course.

I'm trying to find a way to explain that this "fatigue" isn't just being lazy, and that breaking out of it is very very hard to do. Some people talk about not being able to get out of bed in the morning, no matter how much a part of them wants to. You just can't raise the will to do it. I'm the same, although for me it's a chair and later in the day. You just have to wait until something changes and you feel a bit of energy coming back.

I think the thing to remember is that even though I'm "in remission" - insofar as that can ever apply to myeloma - it doesn't mean that nothing is happening. The body is still fighting the cancer, keeping it suppressed, and that is a huge drain on your energy and resources. And I have to deal with the potent drugs that I take every day - another big drain on resources. One sleep a night just isn't enough to recharge and recuperate. "Remission" isn't a stable static state for myeloma, it's a dynamic one where you have to balance the positives of exercise etc. with the dark side that is always lurking in the shadows, ready to break out again. And that completes the sermon for tonight.

24/07/21 (2) Pill organisation and storage

Had rather a lazy day today, encouraged by heavy rain in the morning. Did the usual weekend jobs, including Pull Organization - I've got my time down to 45 minutes. 

The problem is that with Sue's meds as well as mine plus the general household medical supplies, they're gradually taking over too much cupboard space in the kitchen. I shall have to think of something ingenious.

For some inexplicable reason my ring has already (21:07) recorded my activity target as comfortably met, even though the most active thing I've done today has been watching the Olympics. Some things aren't worth arguing about.

BP 108/72 - happy with that.

24/07/21 Dore's Kitchen

Nothing new today. Went to Dore's Kitchen in High Roding for lunch as Russell is leaving soon and we haven't been in since lockdowns began. 

That's Russell facing the camera,and the man who looks like Marco Pierre White on the right is, in fact, Marco Pierre White.

Then cut the grass at the back - too hot and thoroughly exhausting even without doing the grass-collecting this time. Inevitably fell asleep afterwards... Much cooler in the evening, and likely to be enough rain to interfere with an plans we might make to go out later today. So maybe I'll concentrate on cleaning  the cat fountain and the never-ending paperwork pile instead. Weekend bills paid already.

Pleased to say that all bodily functions are working well - just in time for me to mess them up again in preparation for Sunday and Monday mornings. Ankle oedema still there but reduced, fingers are OK.

23/07/21 Furosemide again

Yesterday's 40mg Furosemide worked rather better - significantly increased urination and the post-shower ankle swelling is better than it's been for the last few days. I'd take another one later today, but I don't think that's going to be practicable. OTOH, the constipation problem has got back to a good place after last weekend's disruptions. Long may it last...

Played Petanque at Birchanger (Thorley) last night, and got invited to play a couple of regional league games for them - probably as a reserve next week, and as a player the week after. As I only started trying to play this game properly this year, I'm rather pleased about that!

There was a rather good moon on the way home. Here it is:

And it's now (01:12) very hot and humid, and I'm sweating like the proverbial porker. It's not going to be a comfortable night. At least it's not a dex one.

22/07/21 Furosemide failure, Advocacy zoom meeting

Had an early breakfast because of the 10:00 start to the zoom meeting, and took a 40mg Furosemide (diuretic) as soon as I got downstairs. The meeting was quite a productive one, but the Furosemide had very slight impact on my urination - and I  went to Ongar for a little Wednesday practice early afternoon with no problems. Also played a singles with one of the strongest players in the club and held him to 11-13, which is pretty good. He said "You played some clever boules there." Everybody seems to agree that I've improved a lot since I started there.

Post-shower oedema report is "no change" - or if anything a little worse. I don't plan on being out of the house later today until Thorley boules in the evening, so I'll take another Furosemide with the breakfast pills.  The swelling is not yet at the stage where I have real trouble getting shoes on, but not that far away from it either.

More developments in the cleaner question. She 'phoned to say she's giving it up, mainly because of family reasons but the COVID thing can't have helped. Sue found a list of possible cleaners from some time ago, 'phoned the first name on the list, and got success first time. A couple of new ones will start week after next, and at the same good price we paid before. Very unusual to get a positive result from the first call when something like this happens. It's not myeloma, but neither of us feel up to doing the whole routine ourselves any more.

According to my ring I had only a little over two hours sleep last (dex) night but of course now (00:35) I feel more wide awake than I have all day. No point in going for an early night, I know I won't sleep for a couple of hours yet. Sometimes being a natural-born night owl is a curse I'd like to be rid of...

21/07/21 (21) Bad dex night

05:15, and I've been lying in bed wide awake for at least an hour before giving up hope of more sleep and firing up the computer instead. Haven't had a dex night like this for quite a while. My ring wants to call it a nap rather than sleep... It's a damp grey misty morning out there, with just a hint of red sky through the cloud:

Think I'll check the Facebook myeloma group for any messages that need an admin response, and then back to The Big Bang Theory, I expect.

21/07/21 Change of plan

Things didn't go entirely according to plan as our cleaner 'phoned to say she'd been pinged by Test'n'Trace and was self-isolating - not replacement available at such short notice. So we're doing it ourselves (or a rather reduced version) over two days. We went out for the "short walk" to the Central Park cafe for lunch,and that of course meant no diuretic yesterday. The post-shower oedema is quite marked and tomorrow all I have is a MyelomaUK Panel Zoom meeting (two and a half hours of it, at least), and optional Boules at Ongar in the afternoon. If I take a Furosemide first thing, I might just get away with it.

Played at Tower (Brentwood) last night - two doubles games - lost one 11-13 and the other rather worse. As usual,I was a mix of brilliant  and rubbish, and the rubbish gradually took over. Really bad misreading of a piste I thought I was getting to know quite well sent far too many throws way off target. Oh well, next week is... another week. Also tried to get some video of sparks coming off boules landing in the dark, but the rain started to come down. I'll get that sooner or later. Bought a TP branded shirt and jacket to go with my Ongar ones. There may be more coming from Epping, but I don't think Thorley bother with that kind of thing. At least, I've seen no evidence.

19/07/21 (2) A bit of Myeloma, and Hanbury Gardens

Warning - very little myeloma content here! We have a change of plan tomorrow (Tuesday) morning meaning I can get the senna routine back on track a day earlier than I expected. Something of a relief, as they say. The ankle oedema is quite marked again - tomorrow will be a good day for a diuretic as I don't have to be out of the house until the evening. And as for those infernal finger splits, I haven't seen a sign of one for a couple of weeks. Another little victory in the never-ending war.

Finally made it to Epping Petanque at Hanbury Gardens near Waltham Abbey, a place which has hosted international championships recently.

My doubles game in progress on the separate piste. Epping have some deadly older ladies! The man in the green shirt is the Chairman, and also a rather good shooter:

A different angle on the surroundings:

There's a high wall on two sides of the separate piste, giving some much-needed shade on a blistering hot day. And three nicely placed boules. I think one of them was mine.

From the single separate piste where I played, showing the very pleasant surroundings:

Kitchen for hot drinks and etc.

The Club House and part of the big central piste:

This huge piste has room for a dozen or more lanes - but has no shade at all!

Epping Petanque also have a piste on the edge of Epping, which I hear is rather sandy. They haven't been using it recently because it's too small for many people and COVID restrictions made it impractical. I shall find a way to go and have a look at it sometime soon. The other problem is that their regular date is on Saturday afternoons, and I have sworn that I will keep Saturdays free for other things. Unless, of course, Sue is doing something on a Saturday, which would leave me with a perfect excuse...

19/07/21 Freedom Day!

I do try to keep living with Myeloma as the primary topic of this blog, but COVID keeps pushing its way in front - and if today isn't a good time, when else? 

Along with the rest of the immune-compromised population I am of course concerned that our vulnerable status has been overlooked in the lifting of restrictions, even though that is going to be far less comprehensive than we once thought. I can't see that things are going to be much different for me - I shall continue to observe some sort of distancing while inside, and I'll wear a facemask in shops etc. even though I have serious doubts as to their value.

A good boules session at Ongar yesterday - Brian and I lost yet another doubles, but this time by 13 - 10 which is by some distance our best score yet. We might even win one before we run out of opponents.

After that I kept being asked to play another game, so I didn't get home until about 14;30. Four games altogether, I think.

Some pre-match "gardening" at Ongar to remove overhanging branches. Either that, or somebody's high lob went wrong and left a boule stuck up there...

We start them young at Ongar:

And here's the remains of a 90th birthday celebration for one of our members, who's still a very useful player:

The cupcakes were top class!

Later today I shall be off to Hanbury Gardens for my first meeting with Epping Boules. That, I think, will complete my survey of places to play within reasonable driving distance. Apart from The Swan at Rayne, but I have a plan for that. And I've paid the sub to join Birchanger Sports and Social Club, which means I'm now a member of Thorley Petanque and will be out there every Thursday evening as long as the light holds out...

18/07/21 More temperatures etc.

37.0 and 36.9 with the infra-red thermometer this morning. I checked with the in-ear one and got 37.1 and 37.0 - but it is a very warm morning.

The PC software for the portable ECG still isn't working - will probably have to call for some tech support later. I did one check and it claimed mild arrhythmia which I can probably put down to not holding the thing properly. So I did another one and it said "Accidental PVB (Premature Ventricular Beats)". The trace shown on my phone does show a couple of irregularities but nothing I'm going to get worked up about. BP is 113/74, btw. That's in "Ideal" territory. And this morning's weight (with new batteries in the scales) was 93.7kg - 14 stone ten and a half pounds. It could be lower, but it's better than I've been for quite a while..

UPDATES: Temperature had dropped to a more reasonable 36.6 by the time I went out for Sunday morning boules.

I tried installing the ECG monitor's software on a notebook. That didn't work either. I must be doing something wrong... OTOH, latest reading was "No abnormalities" so that's good.

18/03/21 Not a lot

Not a lot going on again (hence no post yesterday). I've acquired a portable ECG monitor (and one for Sue as well, she has two stents in posterior coronary arteries). It's not because I have a cardiac problem, more that I'd like to be  ahead of the curve if something does start to develop - much the same approach I take to occasional blood sugar measurements. Anyway, all readings so far have been "normal". The monitor links to an app on my phone, which worked perfectly first time. I've just installed the PC app, which is refusing to connect.  I'll try it again after the overnight restart, but I don't think it will give much advantage over the phone so I'm not much bothered.

Constipation management is going to be a problem over the next few days. Later this morning I have boules at Ongar (and a long-delayed Doubles League match, assuming everybody else turns up). Monday morning I'm due for a visit to the Epping Club at Hanbury Gardens, and Tuesday morning will be an early one as well because our weekly cleaner visit has had to be moved earlier than usual. It feels a bit of a luxury for two retired people, but the full household cleaning routine is now too much for us except occasionally, just as we need to bring in help with the garden (and have done since way before myeloma days). So I have to arrange things with "free" mornings over three days. No senna for two nights, and a big hit of that plus Fybogel and Laxido on Tuesday evening, I think. With luck that should get me back to normal by next Sunday...  It feels strange to be deliberately planning a few days of constipation (mornings at least) when I've spent most of the last eighteen months trying to avoid it. Well, I have glycerine suppositories in stock should it come to that. I hope it doesn't.

16/07/21 (2) Glycosylated Haemoglobin

Another good set of observations this morning - blood pressure 107/70 (ideal) 45 minutes after getting up, pulse 64, oxygen  96%, temperature 36.7

Last time I tried the blood glucose monitor a day or two ago it claimed  dead batteries so I revived it with two new CR2032s (bulk order from Amazon, so revived the bathroom scales as well). It gave me a score of 5.4, which I'm perfectly happy about. I have no reason to suppose that I'm diabetic or even mildly pre-diabetic but I like to do the occasional spot-check just to be confident that nothing unacceptable is going on - and especially so these days because steroids can raise blood glucose. It's been suggested that these spot-checks are pretty much pointless and that I should encourage either my GP or my haematologist to request six-monthly Glycosylated Haemoglobin tests which give a more meaningful result over three months than you can get from spot checks. I'll try, but I have a feeling both will say "OK, but no need until we have reason to suspect an issue here..."

We'll see. Otherwise, got up at 06:30 to a bright sunny morning - sufficiently so that I had to close half of the curtains across my studywindow because of glare on the monitor. Otherwise the day is likely to include a trip to the GP surgery to collect prescriptions for me and for Sue, a Tesco delivery, possibly an attempted repair of Walter Walker, and maybe some boules practice at Ongar in the afternoon.

16/07/21 Southend etc.

We went to Southend as planned, although the weather was more cloudy and less sunny than expected. Had fish'n'chips on the front (you just have to, when in Southend) followed by Rossi ice-creams to clean the palate. Apologies for the amount of mine that ended up on my beard...

Enjoyed watching the people on the rides at Adventure Island. Several end-of-year school trips in evidence, all remarkably civilised.

There's also something of an authoritarian side to Southend. All for the public good but it feels just a little over the top...

In the evening I went to Thorley Petanque (confusingly now based at the Birchanger Social Club with its sand piste). I played one game with a very French family - father and two sons about 12 and 14. I played with the older one, Dad and the younger son making the opposition. Both kids were really good as well as being  very stylish - obviously the game is in their blood and they've been playing for years.

Nevertheless they were kind enough to say I played really well. I might not go that far, but well enough to gain some respect, I think. I dropped one shot on top of the coche so that it got completely buried under the sand. Not sure that the Rules of Boules have a provision for "invisible coche"...

15/07/21 Days out

Day before yesterday we went back to the Braintree & Bocking Public Gardens for a walk and a light lunch. Unfortunately they close early and were out of toasted cheese and tomato sandwiches so we had to settle for a couple of rather dry cheese scones instead. Here's the lily pond - should be spectacular in a few weeks time:

Yesterday we went to the Museum of Power just outside Maldon - a place that has been on the list for years and can finally tick off.Lots of wonderful Victorian engineering there:

We intended a simple light lunch in the cafe but the menu was more extensive than we expected and I had a rather good Eggs Benedict which came served with finely sliced lettuce. Unusual, but it actually worked rather well. Whether that was good for the diet is another matter - I put it down to the "Dex munchies".

Later today, if the weather is good enough, we plan on going to Southend. No doubt that will involve fish & chips on the front... And in the evening I should be playing boules on the sand piste at Birchanger.

I read many many posts on (Facebook) Myeloma UK Support about side-effects of treatment, even at first line. And all I can do is say "Didn't happen to me, we're all different..." On the whole, I think I've been extraordinarily lucky so far. Long may it last! But I suppose that one day I'll have to pay that luck back...

14/07/21 Dex night #2, Tower Petanque

Foot sprain almost back to normal now, and the right hand thumb pain is much improved. Ibuprofen may have helped... Definitely not MM-related as I feared at first.

Played boules at Tower last night - played too much rubbish early on but in the last match still going under the lights I sent one boule at long range straight through the gap between two opponent boules no more than a foot apart when it curved a little to the left and nestled up against the coche another couple of yards further on. That got a round of applause from the rest of the players and the spectators. Very gratifying, because the Tower people are notoriously hard to please, but making some new friends there. My first game was against the Club Champions of Champions,so you can imagine how that one ended...

Nothing else on the myeloma front to report. I've taken all the pills, and tonight is another dex night...

13/07/21 Right foot pain

Now sure this is a sprain and not anything nastier. A bit worse again this morning, but localised to an area on the top and inside, a couple of inches back from the base of the big toe. Just sprayed with Deep Heat again. I can tweak it easily by doing my Achilles tendon exercises - ankle flexed and turned outwards. I can't get as far as I know I should.

According to this diagram, the relevant area is the joint between the 1st metatarsal and the medial cuneiform. I'm not sure if the terminology is 100% up to date:

I tried to find a reasonably simple diagram of the ligaments, but all of the ones I came up with were from the point of view of the outside of the foot or concentrated on the ankle at the expense of the foot itself. Annoying!

Just done BP again at 12:23. 119/76, pulse 71. That puts me in Ideal, even if by just one systolic point. Main thing is that it has dropped since early morning.

13/07/21 Dex night, and more self-obs.

A dex-affected night. Went to bed about 02:15, woke up 04:30 and thought that was it but stayed in bed and eventually fell asleep again till 07:30, when I got up to do a blood sugar test. 7.2 this time and the chart says should be below 7.8 for "at least 90 minutes after meals" so that's ok. OTOH it also says 4.0 to 5.9 "before meals", which isn't OK. Morning cup of tea expected in about 45 minutes, breakfast in maybe 90 mins. I'm going for OK but a bit higher than ideal. Maybe I should make this into a weekly routine rather than when I happen to think about it.

Temperature 36.7, BP 127/77 and pulse 76. Again, a bit higher than I'd like but it is early morning still (when BP is likely to be raised). My chart says Pre-high for systolic (top) and Ideal - although only just, for diastolic. Pulse is on the high side for me. Will check again later in the day.

Finished my document review job for Myeloma UK last night - not allowed yet to say what it was about! But two very well-written documents that gave me only a few tiny changes to suggest.

12/07/21 Self-obs

Just done blood pressure: 117/74 which is "ideal" according to my chart. Pulse 74, also OK. Temperature 36.6, oxygen saturation 96%.

Good to know I'm still alive... Probably about time I did another blood sugar but I think that's downstairs.

Found the blood sugar test kit! Not where it should have been. At 21:55, well over two hours since last eating. But I have had two or three hundred ml of the supposedly sugar-free orange squash it's my habit to drink during online backgammon. I did a test and it came out at 12.5 where my chart says it should be under 7.8 - I'll try again first thing in the morning as I'm not inclined to take that result too seriously. I suppose one must distinguish between added sugar and natural sugars plus anything in the drink that can be metabolised into glucose...

I've checked the bottle. It says "no added sugar" not sugar-free. Beware of easy assumptions!

12/07/21 Probably not PN

All went well in the end yesterday, with the exception of my right foot. It was really bad early morning - could barely walk at all even with a stick, and couldn't get out of a chair (or off the loo) without one. Even then it wasn't easy.

Dr.Ch emailed back saying it didn't sound like PN (OK, it's not the classic presentation but I've learned that like all things myelomatous PN can be very personal and can present in many different ways) and advising anti-inflammatories and contacting 111 or GP Monday morning. He also suggested the  possibility of gout but I don't think so...

I "borrowed" a couple of Cuprofen (high strength 400mg ibuprofen) from Sue and it did get gradually better from mid-morning onwards reaching 80 or 90% of normal by 17:00. I don't know whether that was the Cuprofen or whether it would have happened anyway. I now wait to see if the same pattern will repeat later this morning. I won't bother the doc if it doesn't.

Will go to bed with a stick later. Just in case.

Sue and I both did Government COVID lateral flow tests first thing - both negative - as did our visitors. We had an enjoyable lunch and catch-up chat outside, and the two 9-year-olds - both impeccably well-behaved - were fascinated by the ponds and the cats. Or by Belle at least, because Blue had inevitably made herself scarce with strangers around..

11/07/21 Foot pain

Back and worse than before at 06:00. Couldn't get back to sleep. Partly it feels mechanical, partly like nothing I've had before. I'm thinking, of course, that it may be the onset of Peripheral Neuropathy.

Couldn't contact the cancer nurses because it's Sunday. Sent Dr.Ch an email instead. Will try the nurses again Monday morning, and possibly try for a GP appointment as well.

More later, I expect.

11/07/21 Butter

Yesterday went more or less according to plan, except that the double cream (Tesco) I was using to make spreadable butter simply refused to churn and give up its buttermilk. Only the second time I've had that happen in all the years I've been making our own butter. Panicking slightly because we need more butter for later today, I 'phoned Sue who was out doing some shopping in Ongar Sainsbury and got her to buy some more cream. I used the rest of the Tesco stuff to make "hard" butter and that seemed to work OK but it was unusually soft and squishy at room temperature - would barely hold its shape. I just hope it'll be OK at fridge temperature, or else I'll have to throw that out and start again. Anyway, I used Sainsbury cream to make spreadable, which worked perfectly well. Then made some tuna mayo to go into rolls for lunch,when we expect to have friends visiting (two adults, two 9-yr old heterozygous twins).

Otherwise we had more-or-less the expected lazy day at home, although I still managed my activity target with a version of the short Admiral's Park walk. The oedema is better, yesterday's strange pain in my right foot was still there in the morning but faded quickly. The Pill Organisation Thing is done for next week, as are Cleaning the Cat Drinking Fountain and Paying the Weekly Bills. The main things I have outstanding are doing the new job for a Myeloma UK Panel, and returning a defective keyboard to Amazon.

There was an item on one of Sue's many fly-on-the-wall hospital TV programmes about life in an A&E (Accident and Emergency) department. A woman with myeloma turned up with new acute leg pain. Lying flat, she could only raise either leg an inch or two (I remember that!)

The obvious possibility to my mind was spinal cord compression caused by myeloma-related vertebral fractures, and the treatment would be some form of kyphoplasty to stabilise that area of spine with cement. However, an MRI showed no cord compression or change from established myeloma lesions etc.. She was sent home with, as far as we saw, not even any pain relief. The strange thing is that with an established myeloma diagnosis she must have been in the care of a haematologist and must have had a nursing team with an established contact person but there seemed to be no attempt to contact them - and it seems unlikely that they would have supported discharge without wanting at least some direct contact with the patient, the A&E staff, or both. Perhaps it happened but just didn't get through the editing process. If so, just another lesson in not taking these programmes at face value!

10/07/21 Cycle 15, dragonflies, breakfast

Consolidation cycle 15 begins, back on the Lenalidomide for the next three weeks. Yet again I've failed to notice any difference between the three weeks on and the one week off. I seem to be remarkably free of side-effects in general, apart perhaps from the constipation and the fatigue. And the jawbone, the finger splits... But none of them serious enough to justify changing the first-choice treatment, which is a better position than many people are in.

There's been a (very polite) discussion among the Myeloma UK Support (facebook)  admins over whether we should admit people outside the UK who of course are dealing with different medical systems and often very different approaches to the treatment of myeloma. I took a "no change" position,and that side seems to have come out on top. I also have some more documents to review and revise from one of the Myeloma UK panels I'm on. Must do that over the weekend.

A friendly couple of games of boules yesterday morning with the Rodings University of the Third Age group. My side won both games, and I'm starting to wonder whether it might be tactful to play an intentionally bad ball now and again...

After that I mowed the back grass and a bit of the side, as well as dragging some more weed out of the pond. Gratifying to see lots of dragonflies around there, some of them ovipositing. Was rewarded by a vicious pain in my right foot  - not sure what I did but it must have been connected. Have applied a generous treatment of Deep Heat and hope it will have gone away by the time I get up.

Planning on going out for breakfast in the morning, and nothing else much for the rest of the day apart from watching tennis. I've already done the weekend Paying Of The Bills and have cleaning the cat drinking fountain and some butter-making to do. No Boules on Sunday morning because we are expecting a visit from friends either on their way to a wedding or possibly on their way back from it.

09/07/21 Springfield, soap

 A much better experience at Springfield Oncology Centre than last time, when they all seemed a bit overwhelmed and not coping very well. Yesterday was much quieter and back to the normal standards of calm efficiency. And my nurse Jo got the canula in right at the first attempt rather than a couple of them taking four attempts last time.

Went to the car wash and for a short walk in Tower Gardens on the way home - enough to get my activity target comfortably met. I was hoping it would stay dry for some boules practice on the back lawn, but the rain started as soon as I got back. 

Today's Amazon delivery - and we're not far off one a day - was some more African Black Moisturising Soap. I was advised to find something like it for dry thin cracky steroid skin by one of the cancer nurses back at the beginning, and I've become curiously addicted to this stuff:

That's it for tonight. If the weather stays dry, which it probably should, boules with the Rodings U3A later. That's a very friendly non-competitive game with good company.

08/07/21 Oaklands,and no Furosemide

Not too bad a dex night - went to bed just after 02:00 as usual, woke up just before 06:00, gave up and got up 06:25.

Plans for another Furosemide went out of the window as we went for a quick once round Oaklands Park - stick only for me as we used Sue's car to go to the car wash afterwards. 

Then home for a quick tuna mayo roll for lunch and off to Ongar for a bit of practice and a friendly game.

No chance for a Furosemide this morning either, as I'm due at Springfield Hospital at 13:30 for a Zometa drip, which will mean being hooked up to a drip stand for an hour or so. I just hope they get the canula in a bit better than last time...

The oedema is a bit better tonight - rings came off easily and ankles don't look as bad as sometimes. 

07/07/21 Furosemide and boules in the night

Not a bad dex might last night - woke up and got up about an hour early, but that's all. I took  a Furosemide yesterday morning because there was enough swelling in my fingers to make taking my Oura Ring off to charge it was difficult and the post-shower ankle swelling looked quite bad. For once it didn't seem to have much effect on either urine volume or frequency, but the ring was easier to get off just now although  the post-shower ankle swelling looks much the same. May be able to take another later this morning, depending on how the plans for the day look at breakfast.

Boules at Tower was good, I got second place in the throw-off (everybody throws one boule at the jack on the count of three, and that determines the teams. I was with three of the better players in the club. My pair played two matches and we lost both, but narrowly. Quite happy with my contribution. And we didn't get a drop of rain although it was coming down heavily as I left home and the forecast was bad.

Boules in the night:

My partner Dean has just delivered a boule. On the left, opponent Mark is keeping a careful eye on the score. Another match in the background. We only had two because many of the members were watching some football game instead. The floodlights are wonderful. I'm trying to get the bar staff to order some zero-alcohol beers in, but until them I'm stuck with Tango as the closest available thing to orange juice...

05/07/21 (2) Dentist, haematologist, sleep apnea

The dentist appointment was fast and efficient. I parked outside, using my Blue Badge to stop on a single yellow line. My new dentist is the  timeliest ever - I've not yet had to wait more than five minutes past appointment time, and today he was even quicker than that. Most dentists think nothing at all of making their patients wait half an hour or more. Anyway, he gave me the all-clear for Zometa on Thursday.

After that I  saw haematologist Dr.Ch in the first face-to-face (although both masked) meeting since March 2020. Regarding the fatigue/tiredness, he's adding thyroid and iron to the monthly bloods (Thursday) and has asked me to organise a sleep apnea test through my GP. His secretary says they need a consultant's letter first, so have emailed Dr.Ch to ask him to deal with that. With the current backlog in just about all aspects of the NHS caused by its transition into the National COVID Service recently, I'm not expecting anything to happen very quickly. We discussed reducing the Lenalidomide dose but decided insufficient evidence to take a chance.

05/07/21 Mushrooms, more sleepiness

The forecast continuous rain didn't appear, and all we had at Ongar were a few showers, not enough to disrupt play. Our scheduled opponents for the Doubles turned up this time, but my partner Brian didn't. Involved with something to do with Epping Rotary Club, I gather. So I played a couple of friendlies instead, and pleased that my side won both of them - although more credit to others than to me. Still having trouble with my high lobs, but I think I've found the problem in my grip. Too much thumb.

The natural historian in me can't resist posting this picture:

Mushrooms next to the Ongar piste.In early July,which is supposed to be high summer. Not autumn, the proper fungal season. It may be climate change,it may be something else. But it's not right.

Later today, a bisphosphonate dental check followed  by the first in-person consultation with Dr.Ch at Springfield for well over a year. After that, maybe a walk in the park and a bite of lunch, or something along those lines depending on the weather. Next dental appointment in eight weeks,which works out as Monday August 30th which is a Bank Holiday.so going for Tuesday 31st instead.

Yesterday I got back from boules and lunch and promptly fell asleep for about an hour and a half. Then woke up, made tea, spent half an hour on my high lobs and shooting on the back lawn, made dinner, and fell asleep again. Didn't even make it upstairs to my study until after 23:00. So any idea that a few days off Lenalidomide might help must take a back seat for now.

04/07/21 Pond, football

I had a quiet morning but then in the afternoon decided on  a long overdue clearing of the weed overgrowth in the big pond:

With Sue's help we  got four barrow-loads this size out.They may not look like much but when they're saturated with water they're heavy...

Here's the much clearer  result:

and here's me hard at work:

I don't know what the big grass carp feels about us removing most of his cover. But there's plenty more under the lilies,so I expect he'll cope.

Dragging that stuff out of the pond is hard work, and I've liberally treated my hips and low back with Deep Heat in the hope of being in good shape for the Doubles match at Ongar Petanque later this morning - if the weather allows. Brian and I badly need a win, but the opposition will be tough...

Interesting thing is that I didn't fall asleep once after all that work. Watched most of the football quarter-final,and even stayed awake through that (I'm no football fan). Could it be that Week 4 without Lenalidomide is helping me to stay awake and fight the fatigue? Seems like a possibility.

03/07/21 Consultation 05/07/21

Nothing much new today (again). Weather was better than expected so I went to Ongar for an hour's boules practice and inevitably got drawn into a game. My side won. I'm having trouble with my high lobs at the moment, they just won't come out of the hand right. That was what I was trying to work on, along with my shooting. As usual, rubbish at first but much better after half an hour or so. No more boules now until Sunday morning when Brian and I have a doubles match scheduled. If the weather allows...

I had an email from Dr.Ch asking whether I still wanted our consultation on Monday 5th to be in person rather than by 'phone. I replied:

"Hello Vijoy.

I should prefer face to face if OK with you. No very specific reason but its been well over a year and sometimes things happen in person that don't happen over the phone, and I think we should give them the chance. I was going to email you in advance anyway about the fatigue, which is definitely getting worse, and me falling asleep all the time really (and understandably) annoys Sue... Reduce the Len dose further or would that be too much of a risk? Any other approaches to dealing with it?"

He replied:

"That's absolutely fine Ian

Look forward to seeing you Monday"

If nothing else I should get value for AXA Health's money - one or two of the 'phone consultations have been very short!

Before that on Monday I have a dentist appointment for my 8-weekly bisphosphonate check, just in case going back on Zometa is having unwelcome jaw effects.

Started the Week 4 off Lenalidomide stage of the current cycle last night.If, as I suspect, Len is the main cause of the fatigue, it should be better this week. I've never yet noticed much difference between weeks 1 -3 and week 4, but I've never really looked for it either. I must get Sue to keep an eye on me and see if she thinks things are any better this week.

02/07/21 Thorley Boules, finger

As yesterday was forecast to be the last decent and dry day for a week or more, we went to South Weald Country Park for a walk around the lake and lunch in the cafe. Not the longest of walks but it's quite hilly so it got my activity well above the target for the day. Got home, did a little repair on the side passage door, and then realised that being a Thursday I could take up the invitation to visit Thorley Boules Club at Birchanger Social Club (out in the general direction of Stansted Airport).

It seems to be a rather relaxed friendly group of players, not as competitive as Tower Petanque. Lots of spectators sitting over their beers. The man in the yellow shirt was Mark, one of my opponents.

This is Peter, the other member of the opposition pair and a very good pointer:

No photo of my partner John, but we won. Narrowly.

The real attraction is that the piste is sand not the usual gravel, and I want practice of playing on different surfaces. It's also very flat, unlike other places I've been which all have definite slopes one way or the other, as well as smaller humps and bumps that you have to get to know. On the sand the boules roll on well from a low-trajectory throw, but they'll stop dead from a high lob. Unfortunately I couldn't get my high lobs to work well last night - either too high and too short, or coming out of the hand wrong and far too low. 

Here's a shot of the sand surface with an end nearly finished:

The place also has a rather ancient black dog, and I could easily have run it over as I drove up to the club. It then took to lying on the sand but obviously understands the game well enough to stay well out of the way of descending boules. It also left a little something that one of my boules landed in, and I didn't realise until I'd picked it up... A good thing that I keep plenty of hand sanitiser gel in the car!

I haven't joined yet but am invited back for a few more times before deciding. I think I will - only 25GBP a year - but happy to leave it for a while.

As for the myeloma, yet again nothing much new except that I am going through a good patch as regards the bowels. The constipation is always there trying to get back and so it needs daily monitoring and adjustment of the Senna, Fybogel, and occasional Laxido according to how things go. And there's always the glycerine suppositories in reserve...

I hardly believe it but another finger split has appeared (right middle finger, on the corner of the fingernail). |Just as the thumb one is healing nicely. Is there no end to these tiny but infuriating things?

01/07/21 Triangle, litter, bitter

The dex did bite back a bit last night - I was awake early and got up to face the usual flood of emails and catch up on Clarkson's Farm. Nothing much for the morning and went out for a local walk around the triangle, taking a black bag and a litter-picker with me. Victor the Veloped walker is just right for this. Collected a lot of rubbish, including a good few lager cans dumped, I think, by football fans on the way home from celebrating in Chelmsford pubs. Me, I can't understand why anyone drinks the stuff. Give me a pint of bitter every time, especially if it's Adnams. This is a lager:

and this is the Real Thing:

Otherwise, pretty much as normal. Activity target comfortably met. Pills taken. A bit of admin work on the Facebook group.  Fatigue hasn't been bad - probably a result of the dex. If so I'd expect it to be worse again later today.