30/06/21 Dex and Tower Petanque

Slept well last night, despite the dex. My ring tells me that my "latency" (time taken to fall asleep) was 0mins and 0secs - and warns that may be a sign of various things including not getting enough sleep...

I have a feeling dex may take its revenge tonight (dex night #2). We'll see.

Bowels seem to be in a fairly good state after the Sunday deviation from standard routine. 

Good Boules at Tower last night - I think I play better later in the day. Not many people were there, possibly because of some football game - and we started with a shooting workshop led by the very French Davide. Very useful for me, because it's not the strongest part of my game.  Then played two games and was on the winning side for both. I feel I'm able to hold my own against most of the players there. Have also entered for the Doubles in the Eastern Region competition - will be good experience if nothing else.

As Tower play on into the dark under floodlights, fascinating to see the sparks as one boule hits another, and even sometimes when it pitches onto the gravel. A whole world of physics that you're completely unaware of in daylight. Sometimes you see better in the dark. 

There are several Ians at Tower. So I am now identified as Ian The Hat - never go out without one, even at night. 

On the fatigue front, things have been rather better. Didn't fall asleep during the day or when I got home after Boules. Possibly the dex is responsible.

29/06/21 Deep Heat, fatigue

Pleased to say the Deep Heat worked splendidly. Have ordered some more from Up The Jungle as I'm nearly out of it.

A very quiet day today, not least because the effects of 40mg of Furosemide made it impossible to go anywhere, even with my collection of emergency toilet cards. Did the usual few small jobs, fell asleep too much, watched some tennis, played some online backgammon Somehow beat my generous activity target by 8%, maybe because of a bit of exercise with the 2.3kg weights before I had my shower.

The fatigue, if that's the right word, is getting to be a real problem - not least because Sue finds it hard to cope with. I get to the point where I just can't stay awake, and when I wake up from that I just can't find the energy to get going again. I'm assuming that it's mainly a side-effect of the Lenalidomide. It doesn't hit while I'm actually engaged in doing something, which suggests a partial solution, but I get ordinary-tired and I need to take some time out to cope with that, and the fatigue-tired sneaks in...

Will talk to Dr.Ch about this next time (July 5th). One obvious thing would be to cut the Len dose down from my current 15mg to 10 - not sure if it comes smaller than that - or move to alternate days. But that would increase the risk of the beast coming back... Maybe I'll drop him an email a couple of days beforehand to give him a chance to think about alternative approaches.

15mg x 7 days comes to 105g for the three "on" weeks. Moving to 3 x 25mg would be 75mg - not too much of a drop. Might be worth suggesting.

Whatever happened to the days when a GP would prescribe a "tonic" or a couple of weeks vacation at the seaside and some long healthy walks?

28/06/21 Right hip and Deep Heat

Not a particularly good day at Ongar Boules yesterday morning, as my right hip was in one of its awkward moods and I felt a bit unsteady on my feet throughout. Brian and I didn't have a match, so I played a couple of friendlies - not especially well - and left a bit earlier than usual. Post-shower I've treated the troublesome area with a generous spray of Deep Heat - seems to do as much good as anything else, and ordered some more from Amazon.

Taking a night off Senna worked as planned - no problems Sunday morning - but I've now taken double Senna to compensate. Staying in today so should be able to cope with any unintended consequences, as well as getting a few domestic jobs out of the way. Might even take a Furosemide...

27/06/21 Heybridge Basin

Another hot day, and we set off for Heybridge Basin. We haven't been there for a while - Sue thinks not since Lockdown#1, I think we've been at least once since then. It was a favourite destination in the days of e-bikes, but not so much now it has to be on foot.

There's a new attraction:

Very realistic model animals in this fake African zoo.

We got lunch from a Costa in Maldon and ate it sitting on the sea wall. Sue had a bacon roll and I had a sausage roll - in the sense of a couple of sausages in a  bread roll. No high-fat flaky pastry involved. CMOT Dibbler, with his eternal cry of "Sausage in a bun!" would have been proud of me.

Got home and mowed the back and side grass (Sue did the rest) before the fatigue had a chance to kick in.. Wanted to do it because next forecast is not too good for the afternoon. OK for the morning, which will be occupied by Ongar Boules.

Made Spaghetti Bolognese (British version!) then did the Pill Organisation thing for next week. No Senna last night in the hope of being OK in the morning. Double Senna planned for tonight.

Life goes on. Remission continues, although I know it will end somewhere down the line. Until then, what can I do? I think the answer is just to keep living, keep involved with the world, keep taking the tablets, find enjoyment wherever I can. And that';s what I plan to do.

26/06/21 One thing and another

Again, little to say on the myeloma front, apart from an admins argument on the Facebook Myeloma UK Support Group about how far we should support fundraising for Myeloma UK (no connection). I'm taking a middle-of-the-road position, but it isn't over yet. Watch out for "The Straight Arm Challenge" - there are hopes that it will go viral like the ice bucket challenge of a few years ago.

Bowels seem to be well on the way back to stability, and the ankle swelling isn't too bad this evening. Ideally I'd take a Furosemide later this morning busy that will be impossible if the weather is decent and we go off somewhere.

Yesterday played Boules with the Rodings U3A - my team was doing not too well until we stole the match with a five-point end. Then home for lunch and back to the piste for some practice with a couple of the Ongar regulars. Followed by the usual fatigue collapse at home...

Fixed - I hope - a long-standing problem with my keyboard where it would go dead for no obvious reason. I eventually tracked it down to a problem with the battery compartment - taking the batteries out, swapping the left and right ones around, and rotating them a few times for better contact usually worked but sometimes not for long. I've got a new k/b (same Logitech model) which is identical apart from a different and tougher-looking spring in the battery compartment. Maybe I wasn't the only one having that problem...

Anyway, installed the new keyboard, mouse, and receiver and everything seems good. Fingers crossed.

Speaking of fingers, the new split on the end of my right thumb is now in the painful throbbing stage.. I blame dex for it.

Just for the sake of a photo, here's my current setup in my study at home, where I'm writing this:

Just the things with screens:

Top row: TV, monitors 3, 1, & 2 for the main PC.

Bottom row: phone, tablet, notebook/laptop, Alexa.

Overkill? Quite possibly. But it makes me happy.

25/06/21 Fatigue

Did a few jobs about the house in the morning, then we went out to a couple of local farm shops for fresh veggies, bought lunch (there goes this week's sausage roll allowance) and had a couple of Rossi ice-creams on the way home as well as taking a walk around the Leaden Roding cricket ground. Then I felt exhausted and fell asleep for too much of the afternoon, woke up for afternoon tea and a bit of boules practice on the lawn, made dinner, fell deep asleep again... I don't know why the fatigue is worse on some days than others (except, perhaps, for dex) but this was a bad one for no obvious reason. And that, I think, is all for tonight.

23/06/21 (2) Hylands

A much better and warmer day - but the last few colder days have opened up a split in my right thumb and another on my left little finger. Seems crazy to be wearing gloves in mid-June, but if that's what I have to do... I used to be safe down to 10C, but probably because of the skin-thinning powers of dex I'll have to up that threshold to something more like 15.

Went to Hylands Park for lunch (toasted cheese, tomato, and red onion sandwich with a bit of salad and too many tortilla chips which IMHO should only ever be used as a carrier for dips). Then went into the gardens in search of some Wisteria that has been in spectacular bloom this year, but arrived at the site to find we were too late - flowers all gone. Nevertheless, a pleasant walk ending with a couple of ice-creams (a mango Solero for me, and a chocolate one for Sue) to try to get rid of the taste of those tortilla chips.

Since putting myself back on occasional Furosemide I reckon I've lost a good 2kg - all fluid retention. Little obvious ankle swelling as I write (22:08) and the looseness of the You-ID-Me medical bracelet I wear on my right wrist suggests that I've slimmed down a bit there as well.

Bowels still a bit unpredictable after the weekend. Took a Fybogel last night on top of the usual Senna, to moderate effect. Maybe another one tonight, I don't think I'm quite at the Laxido stage yet.

23/06/21 Oedema, new boules place

Post-shower ankle oedema considerably reduced, although it's starting to reappear now, an hour or so later. I've lost the best part of 2kg since starting the occasional Furosemide, which shows that water retention accounts for most of that weight. We have nothing planned for later today, so a good opportunity to take  another one.

Tiredness has been good, probably because last night was a dex night.

Joined Tower Petanque yesterday, north of Brentwood and half an hour's drive away. The floodlights on their rather nice piste meant that we played right up to 22:30. I played in two games, narrowly lost one and won the other. I think I showed I've played the game before, in fact I played as well as I ever have. The surface is similar to Ongar, although perhaps a little thinner gravel over the hard surface. The biggest difference is in the style of play - it's much more aggressive with shooters coming into play right at the start whereas at Ongar shooting only comes into most games  right at the end. And the standard of shooting at Tower is way ahead of Ongar. I now have two more places to investigate, both of them the same half hour or so away.

You can see the floodlights. What you can't see includes the very nice scoring system, the little shelves for drinks (there is a bar!) and the hooks to hang your circles on. All very well thought out and made, I understand, by a member who also owns an aluminium factory.

Again, a very nice friendly welcoming bunch of people. All very good for my "mental health", I have no doubt.

22/065/21 2MT, breakfast, boules, bloods

Yesterday morning we went to a new cafe on our side of Chelmsford for breakfast. "2MT" is named after the call sign of the first entertainment radio station launched by Marconi in 1922 from a base in Writtle, just down the road. And the Marconi factory was in west Chelmsford - now inevitably turned into flats.

A curious coincidence is that I grew up in Sandbanks (Poole), long before it became the lunatically expensive property hotspot that it is now. And the Sandbanks Hotel was the base for Marconi's first successful transatlantic radio transmission.

Excellent breakfast - I had Eggs Benedict boosted by some black pudding and a sausage and a few other bits from Sue's Full English that she did not want. I hope the place keeps the same standards once it's been going a few months - it will certainly be a regular breakfast or lunch stop for us.

I took my morning pills with me and had them at the cafe. Then, as the rain was getting harder, we forgot the possibility of a walk and, apart from driving into Writtle to post a letter (what an archaic process that now seems to be!) went back home where I took my Spogest and decided to have a diuretic. As usual, a couple of hours waiting for it to kick in, and then the flood gates opened...

It's MyelomaUK's "Myeloma Awareness Week" (and in fact it was Myeloma Awareness Month a little while back, not that anybody outside the Myeloma world seemed to notice). This year is about spotting the signs and symptoms of myeloma early, which can lead to early diagnosis. That's the best possible start to anyone's life with it, and I'm in no doubt that my early diagnosis (thanks to my on-the-ball GP spotting signs of possible bone cancer quickly). Of course the pressures applied to GPs by COVID-19 have not helped with early diagnosis of any cancer, let alone the trickier blood cancers.

<https://www.myeloma.org.uk/dont-miss-myeloma/?bblinkid=252178948&bbemailid=32207799&bbejrid=2006817588>

Dex night tonight.. 01:04, feeling good and wide awake...

Later today, I have a choice of two new boules pistes to investigate. One is a U3A group playing at a pub in Rayne - cheap to join, but half an hour's drive away, the other is on this side of Brentwood, much the same drive time but with a covered and floodlit all-weather piste and various social club "advantages" that probably won't be very valuable to us. And rather more expensive...

<http://www.towerspetanque.co.uk/>

What I do will depend on the weather. Yesterday wasn't quite as wet as the last few days, bujt temperature down as low as 13C. That's almost into finger split territory.

Springfield finally sent my last set of blood test results through. Paraproteins still undetectable, free light chains all normal or very close, everything else looks ok to me under the circumstances. So remission continues, as does the consolidation regime of Len/Dex. I'm very pleased. As well as very awake. 

21/06/21 It might have been Freedom Day...

Nothing new about myeloma, except for some admin problems on the Facebook group because of somebody posting stuff against the group guidelines - although I rather think the truth may be that he's been hacked and there's a spambot somewhere posting the stuff in his name. Also, the tiredness/fatigue was bad this afternoon and evening (although, as usual, it vanished after my midnight shower.) 

Ankle oedema is still there, and it's not been practical to take a diuretic for the last couple of days. It won't be later this morning either, as we'll be going out for breakfast. Tuesday should be OK.

Yesterday morning at the boules I had a couple of good warm-up games before the doubles match with Brian against a very strong pair. We were always going to lose (surprise!) but set ourselves the target of beating our best score so far of 5. The first few ends were very very close, with the opposition winning one point by very small margins. I played some very good throws (along with the usual rubbish) and they could so easily have gone the other way... Three games ended up with one of their boules, one of mine, and the coche so tightly grouped that it was just a millimetre or two that made the difference. But in the second half of the match they pulled away and the final score was just 13-1. We were also the victims of a tactical ploy where the opposition took a one-point win to eliminate the good chance that we might have made five points... a tactical lesson learned there! Brian and I are defeated but not discouraged - back again next Sunday.

20/06/21 Horrible day

Cold, grey, drizzly, most unpleasant day. No temptation to go outside at all and after considering various possibilities and rejecting them all, we stayed inside all day. At least I have some justification from my wearable tech ring, which said "If you feel that you're low on energy, take it easy today." Mind you, it says that most days, but yesterday I followed its advice. So stayed in and caught up on some sleep time.

Surprisingly I hit my quite big activity target, probably because of some work in the kitchen. I made Asparagus Risotto with Poached Egg and Herbs. It tasted better than it photographed:

The idea of putting a poached egg on top of a risotto is a good one. I may well try that with some other risotto recipes. 

It was 50/50 as to whether to take a Furosemide yesterday or not. While we were still thinking of going out around lunchtime it seemed best not to, but by the time we decided to stay in it was getting too late. Inspection of my post-shower ankles suggests that I missed a trick. Maybe this morning, if the weather is too bad for the usual Sunday morning boules. Can't risk taking one before going out, even if there are plenty of convenient trees and bushes just a short walk away from the piste....

19/06/21 Tesco delivery, risotto

Another wet day yesterday. I decided against a Furosemide on the grounds that the ankle swellings had gone down substantially, and I had hopes of getting out for an hour of boules at 13:00. The ankles are up again now post-shower, but not too badly. Later today we plan to go out for lunch at about 13:30, which means a delicately balanced diuretic decision after breakfast...

Constant heavy rain prevented boules, and I spent most of the day inside, fiddling around with VoIP telephony and getting the True Call call blocker to work with it. Surprisingly complicated, but I'll get there in the end.

Mid-afternoon brought the Tesco delivery, but it was all wrong. We got a small box of stuff we didn't order, and none of the stuff we did. I don't fully understand what went wrong because I don't handle the orders myself, but there was clearly only one solution - my first solo trip to a big supermarket to do what was effectively a full weekend shop. I haven't done that since early March 2020.

Fully armed with facemask, hand sanitiser, two Pfizer injections, and those COVID antibodies I found a trolley in the rain and joined the queue for admission to the store. It moved quickly and once inside it wasn't too crowded, but I was surprised by several people using visors without facemasks as well. Masks may be close to useless, but visors certainly are 100% useless in that kind of situation.

Shopping done, and somewhat soaked by the rain in the car park, I got home in time for half an hour of online backgammon. Won one, lost one, leaving me still behind for the week. Now that summer is coming (although you wouldn't have believed it from yesterday's weather) we're cutting back to just a regular Wednesday game plus others on an ad hoc basis depending on weather etc. etc..

After dinner, made two batches of butter - one "spreadable" and one "hard" which will be needed for this evening's planned meal, asparagus risotto with poached eggs. Surprisingly few good risotto images online, so this one will have to do:

18/06/21 Rain, Furosemide

My plan to visit Thorley Boules Club (near Bishop's Stortford) yesterday was frustrated by heavy rain. At the moment their piste is sand only, and it would be unplayable  when really wet. I'll try again next Thursday. Heavy rain and thunderstorms are forecast for later today, which will probably put a stop to the usual Ongar Friday afternoon "friendly" session. Sunday morning looks a little more hopeful, but not a lot...

Despite missing the "exercise" I'd anticipated, I still hit my activity target. I think trying to fit an oversized lightweight duvet into a standard cover might have something to do with that...

The Furosemide I took yesterday produced large quantities of urine, but visually the ankle oedema is unchanged. I'll take another one after breakfast as I can stay in during the morning and I doubt that I'll be going out for boules after lunch. I probably need to stay on the Furosemide for alternate days - or as close as I can manage - for a week or two before my fluid balance sorts itself out.

I don't know why this problem has re-emerged recently after many months without it. No change in the meds, except going back onto Zometa. Offhand I can't think of a reason why the two should be connected.

Passing mention: Blood Pressure has been good recently - I got 102/70 not long after getting up yesterday morning, which is well within "Ideal blood pressure" according to my chart. 98/61 just now (01:26) - still in the "Ideal" zone but getting close to "Low". Temperature has been at the high end of 36.something, and oxygen  saturation has stayed good. 

17/06/21 Furosemide

This morning's diuretic pill (40mg Furosemide) is having quite a impact on my water balance! Couldn't leave the house even if I wanted to.

Slight correction to previous post - yesterday evening was the match against Epping, not a practice. I gather Ongar beat Epping narrowly (8.5 - 7.5). No doubt I'll hear about it all on Sunday, when Brian and I are due for another humiliation in the Doubles League...

17/06/21 Sand, oedema's back.

Woke up early again after dex night #2, did a few things about the house, made tuna mayo for lunch then went to the Ongar piste for the regular Wednesday afternoon. Nobody else there - the reason being that there is a match coming up against Epping and the team had an organised practice session arranged for the evening therefore they all missed the afternoon. 

So I had a good long practice and was just about to leave when a couple turned up and we played a few ends of singles before I had to leave for tea (fish, cat, human) in time for backgammon.

Tomorrow evening I plan on going to have a look at a Bishop's Stortford club that has recently moved from a pub (the landlord wanted to use the piste area for more outdoor seating) to a social club where I understand that, for the time being at least, the piste is just sand. That would meet my desire to play on a completely different surface...

Myeloma? Haven't thought much about it today, apart from a couple of Admin issues on the Facebook group, and remembering to take the pills four times a day.

Looking at my feet after getting out of the shower, the ankle oedema is back again probably as bad as ever although the insteps aren't swollen as they were before. That fits with my feeling the need of a long-handled shoehorn (I keep one upstairs and one downstairs) although I'm not at the stage where I can't get a shoe on at all without one.Not planning on doing anything much later today until the evening, so it's time for another Furosemide (diuretic) with the morning pills.

Finger splits, BTW, are now fully cleared up with the warmer weather. However, while grating a giant garlic clove for my pasta sauce yesterday evening, I did manage to remove a 2mm diameter piece of skin from the tip of my right index finger. It bled for a while but has stopped now. The mix of blood thinner (20mg Rivaroxaban taken daily) and slightly reduced platelets seems to leave clotting pretty much as normal as far as I can tell. 

Raining this evening. Might get a thunderstorm or two overnight. We've had a distant lightning flash or two.

16/06/21 Maldon piste

As planned, we went to The Ship in Tiptree for lunch:

Very healthy. It's got salad. 

And then on to Maldon where we had a good walk and found the Boules piste. Rather a nice one, but with a surface that looks very similar to Ongar. We watched for a while, walked on a bit, then had a couple of Rossi ice-creams.

Back home just in time for online backgammon. Now we're into summer and wanting to be out more, we'll be cutting that back from every weekday to something rather less dominating of the weekday schedules. Negotiations are in hand...

15/06/21 Dentist

Dentist at 09:00 yesterday morning, and my plans worked to perfection. Have taken double senna to nudge back to more "normal" tomorrow. I hope.

I had two fillings to repair - i.e.drill out and replace - which meant two lots of dental anaesthetic. I honestly didn't feel one of them at all, and the other was near-painless. Quite remarkable.

Went home via Brewer's Hoppit in Writtle but the paths are very overgrown and need cutting. Hardly surprising, as everything is growing fast in this weather. So it was a shorter walk then expected.

I left for the dentist before breakfast, so by the time I got back and the  anaesthetic had worn off a bit, it was a very late breakfast.Which meant very late breakfast pills, including five dex tablets. That might make for an interesting night - I usually try to take them as early as possible (within our late morning lifestyle!)

Tomorrow we plan on going to Maldon, partly because Sue wants to check out a nearby pub where she and her friends may go for lunch, and partly because I've discovered that there is a boules/petanque piste operated by the Maldon U3A. I'd like to have a look at it before deciding whether or not to  join up. I've been doing some research and have discovered a few other pistes not too far away - emailing all the clubs/groups to arrange visits. I can't possibly go for all of them, but I do feel some variety of pistes and quality of competition would be good.

Myeloma? It will do what it will. Meantime, I intend to get as much enjoyment out of life as I can. COVID permitting,  of course...

Activity target met again, mainly because of some boules practice in the back garden. I'm experimenting with methods for side-spin. As far as I can tell, only one of them works.

14/06/21 Boules, Barbecue, Bowels

 Another beautiful summer day. It took a lousy spring and a poor start to this month, but we're well and truly into "flaming June" for several days now.

I was due an early start at the Ongar Piste for Brian's and my doubles league match (he had to leave early for a family commitment) and all would have been well if our opponents had turned up. But they didn't and couldn't be reached by 'phone. Presumably the attractions of a day at the seaside had been too strong. We now expect to play them next Sunday if  Brian can make it.

Brian and I took advantage of the confusion with a gentle singles to warm up, and then the secretary fixed another match up for us, against a rather strong pair including her father who has been playing the game since the year dot and who knows every hump and bump on that piste as well as anybody. Not surprisingly we lost 5-13 but I wasn't unhappy with my contribution. Sue was there to support and shot this snatch of video of me from behind:

One of the members had a birthday to celebrate - excellent cupcakes!

I had the usual collapse in my chair downstairs after getting home, eventually waking up in time to do cat and fish tea while Sue looked after the people side. Then we had a little barbecue to organise (fillet steaks, mushroom and red pepper kebabs, tenderstem broccoli, and frozen "oven" chips done in the air fryer for crunchy outside and fluffy insides.) Somehow, between us, we managed to bring all the elements together at more or less the same time...

Altogether, a day without giving much thought to Myeloma. Nothing admin to do on the Facebook group as I'm letting other admins deal with approving new members for a day or two - I've done my share recently. On the whole, the best days are either ones where I barely think about the disease apart from remembering to take the pills four times a day, or ones where one aspect or another of it dominate the day.

Later today - 09:00 - I have a dentist appointment to repair a couple of fillings that need a little work. With luck I'll get through that without need for anaesthetic, which I absolutely hate. The problem is managing the bowels in such a way that I'm "safe" for a couple of hours in the morning, so I omitted last night's senna. Fingers crossed... And if my planning fails, I have several physical cards to address the problem, as well as this digital one that works via Google Pay (or Apple Wallet, for those so inclined):

Temperature was a little high yesterday morning at 37.0 on the infra-red forehead thermometer - I'm usually 36 point something. Checked with the Braun digital in-ear thermometer, which confirmed the reading. Not high enough to panic, but high enough to keep an eye on. It dropped to 36.8 within a couple of hours and has stayed OK since, so no problem. .Blood pressure also OK at 117/78 - just inside "ideal blood pressure" according to my chart which doesn't take account of age. Oxygen saturation also OK.

13/06/21 Hanningfield

Another good day, and less humid than recently, so we mounted an expedition to Hanningfield Reservoir (Essex WIldlife Trust, of which we are members) for lunch and a walk through the bordering woods. Lunch was a rather good egg mayo sandwich and a bottle of fresh apple juice. Hanningfield is a regular two or three times a year destination. Always pleasant, although it's not one of the more photogenic reservoirs:

After that I did some rather cautious boules practice on the back lawn before the big doubles match this morning. Cautious, because my back has been bad for a few days. Just the usual kind of muscular strain, I think, which usually clears itself in a few days. I just hope it hasn't been caused by too much boules. I don't want to start completely re-thinking my stance just as I think I've got it right...

If I play as well later as I did in the back garden, the opposition haven't got a hope. Everything was working well - high lobs, spinning both ways, and shots bang on target. But I probably won't. This time I'm trying to arrange half an hour of warm-up time before the match starts. Don't know if that will work out, but I do know that I start playing a lot better after getting some of the rubbish throws out of my system.

12/06/21 Lenalidomide collected

I collected my 15mg Lenalidomide from Springfield Oncology at 12:30 yesterday, in between boules with the Rodings U3A group in the morning and more boules with some regulars from the Ongar Club in the afternoon before getting home for the Tesco delivery. So Consolidation Cycle 14 is under way (I took the first Len last night), which means that I've now been on that regime for just over a year with never a sign of a paraprotein or anything else unpleasant - apart from the manageable side-effects that I live with every day. Can't ask for much better than that.

For the biochemists and molecular biologists, this is Lenalidomide:

Pleased to say that my side won in the morning, although I wasn't so good in the afternoon. Either way, I'm sure it's good for me.

10/06/21 (2) Springfield has a bad day, and more Boules

Not too pleased with Springfield Oncology Centre today. I arrived a little early for my 12:00 appointment, and a good hour later they still hadn't managed to get a canula in for my Zometa drip. We had four failed attempts and three nurses on the job before they got it right on the fifth attempt. I don't think it's ever needed more than one try before, and they always talk about what wonderful easy veins I've got - but perhaps that's just part of the routine chat rather than actually meaning anything.

Then the pharmacy struck - they didn't have any of my 15mg Lenalidomide/Revlimid in, and I need it tomorrow (Friday) evening to start the next cycle. I was told to expect a call later today or tomorrow to sort it out. Nothing so far. That'll probably mean having to go out there again to pick up from the pharmacy - we'll both be out for much of the day so a delivery may not be practical.

And then we checked the bag of meds the pharmacy had provided. Not for the first time, no dexamethasone. It took another twenty minutes or so to sort that out.

I think the whole place is beginning to show the strain of all this time with COVID restrictions combined with the extra pressure of handling a large number of NHS patients on top of the usual load. There's a slight but detectable edge of frazzle and everybody being on edge, underperforming but not knowing how to get back to the calm and efficient ways of old. Nothing I can do but sit there and be as patient a patient as I can. But the sooner we come out of COVID and back to normal the better.

I've been exploring U3A (the University of the Third Age), which I've been meaning to get involved with for years but never got around to. And  I've discovered that my local branch (The Rodings) has a Boules group. I sent them an email and it resulted in an invitation to join them and play later this morning. They use the same Ongar piste that I know, which is a little unfortunate as some variety would have been welcome, and play on alternate Friday mornings. So the plan is for an early breakfast followed by U3A boules, then of to Springfield to collect my Lenalidomide, get some lunch somewhere and back to Ongar for the Ongar club session early afternoon, then back home for the Tesco delivery. There are a couple of other U3A groups not too far away that claim to be full (as the Rodings one did), and I'll investigate further... What I really want now is another piste with different surface characteristics to improve my game.

Irrelevant to myeloma, but my left hearing aid is playing silly bu**ers again in the charger. I think I've got it charging OK again. Just another little technology frustration that I could do without.

UPDATE: I think I've got the hearing aid charging properly again. And I also see a substantial bruise developing on the back of my right hand after those abortive attempts to insert a canula. It's my boule delivery hand...

10/06/21 Burnham-on-Crouch

 Beautiful summer day so we went to Burnham-on-Crouch for lunch and a walk along the seafront.

I had scampi (well, monkfish tail) & chips, Sue had a jacket potato with beans and cheese. We shared to some extent... Yesterday was a light evening meal to compensate, so I did an omelette aux fines herbes with thyme, chives, oregano, and marjoram fresh from the garden plus some more thyme and basil from pots on the kitchen window. And home-made butter, of course. I think the eggs came from our neighbour's chickens as well. Also did a little tomato salad with freshly ground pepper and extra-virgin olive oil.

Myeloma? Hardly thought about it yesterday, apart from deciding to add a Fybogel to the nightly Senna. Later today, off to Springfield for Zometa, bloods, and next month's pills. 

Earlier this evening I did a little job for one of the MyelomaUK Panels (advice on a new edition of their Myeloma bone disease and bisphosphonates Infoguide ) and I must now go and check on the Facebook group...

08/06/21 Zoom and Oaklands Park

Had a picnic lunch and a walk at Oaklands Park:

This morning's Zoom meeting "What Your Health Data Can Do" from UCLH was built around COVID more than anything else, and made a strong case for availability of full medical records for research purposes. My main concern isn't so much about my health data being "Out there" - much of it probably is anyway in this post-privacy age - as about the ability of the NHS to build the IT systems they need to handle it all and particularly to integrate all the different systems and file formats etc. used by GP surgeries and hospitals all over the country. The NHS doesn't exactly have the best record when it comes to scaling up systems that work in one lab to cover the whole country.

Weather continuing very hot. Everything growing fast - only a couple of days since I cut the grass and it's back again.

Nothing new on the myeloma front, apart from an active day of admin work on the Facebook group. Somebody posted about debt problems caused by her myeloma diagnosis - she thought she was going to die soon so overspent on credit cards figuring she'd be gone before she had to pay it back... But she didn't die and had to face the problems and did it in entirely the right way, getting a very helpful response including writing off much of the debt. Not everyone was happy about that, but IMO it was a brave action to be completely open about it and I'll bet we have more than a few members facing similar debt problems who will have been very glad to read that and will be encouraged do the right thing rather than hiding it away. So that's our little controversy for the week.

07/06/21 Phone consultation

Dr.Ch 'phoned within about half an hour of the scheduled time, which is not bad going. He was very bright and cheerful, obviously enjoying the sunshine. He started telling me about some new German research suggesting that people in my kind of position can have the Lenalidomide reduced to 10mg (minimising side-effects, not that I have much of a problem there) but still keeping the paraproteins down. No change in my regime yet - he wants to study the report more closely etc.

Going back to my surprisingly abortive MRI scan back at the beginning, I talked about my recent discovery of sitting and open MRI scanners - available in several places in London and elsewhere. He agrees that would be worth exploring if I need an MRI at some stage (and if AXA will pay for it...) Probably a better option that deep sedation (some people have been given double diazepam) which might and might not work.

I mentioned the occasional loose diarrhoea-ish mornings that I've had over the last few weeks (and, in fact, this morning). Noted, but no action at this stage. The problem is still overwhelmingly the other way.

He was pleased to hear about the Boules - agrees about the social and "mental health" benefits - and about my increasing involvement with MyelomaUK panels and etc.. Otherwise no change - next cycle goes ahead including Zometa on Thursday.

Next month's consultation will be face-to-face. Doesn't have to be, but I just feel there are things that happen face-to-face that don't over the 'phone, and it's been over a year. Time to do it again.

Finger split update: No splits left, all fully healed and 100% OK - until the temperatures start going down again. I'm sure the warmer weather is far more responsible for the improvement than anything else.

07/06/21 Boules video

I don't think I've posted a video on this blog before, so here's a little one from Ongar Boules yesterday morning:

The man on the left at the beginning, in a black and white Buster Keaton t-shirt and with a white baseball cap and shorts, is my doubles partner Brian. The man all in black on the left near the end of the clip is Georgi, who was so helpful a fortnight ago with his first-aid kit when I very nearly broke my nose - all nicely healed up now, BTW. No matches yesterday, as the Secretary wasn't able to be there. We resume the competitions next week.

Nothing else tonight - I'll report on the 'phone consultation with Dr.Ch tomorrow.

06/06/21 Ongar Garden Centre and lawn mowing

We went for a decent walk round the back of Ongar yesterday, after going to the Ongar Garden Centre for lunch (a shared toasted cheese and tomato sandwich). After that, because of the threat of rain this afternoon, it was lawn mowing time. As a result, I beat my activity target by a factor of five - not quite a record, but close. Hard and sweaty work in the heat, glad I can still do it.

Pill Organisation after dinner because it's Ongar Boules in the morning. No competitions this time (the Secretary is unable to be there), just friendly practice games.

05/06/21 Rain, VoIP

 A very different kind of day yesterday - solid heavy rain all the way from mid-morning to early evening. I didn't get out for a walk but comfortably met my activity target anyway.

Coming to the end of the current cycle now - have just started week 4 with no Lenalidomide, have a 'phone appointment with Dr.Ch on Tuesday and a Springfield appointment on Thursday for bloods, Zometa, and the next lot of meds.

According to the Facebook group some people are now having face-to-face consultations with their haematologists again. Next month, perhaps? That'll be after "Freedom Day" on the 21st, if that actually happens.

Should be a better day later today. I have the cat drinking fountain to do and some butter to make in the morning, which will keep the dishwasher busy in the afternoon. Sue has an online rehearsal mid-day, so we'll probably head out for lunch and a walk after that.

Have also been busy with VoIP (internet) telephony. I've got it working but still have to figure out how to integrate the TrueCall unit. Should it go between the router and the VoIP box (Vonage) or between the box and the phone? And what cables do I need? And at what stage do I start the process of porting the old landline number across to VoIP so I can kill the old landline and broadband altogether?

03/06/21 Heat, fields, thorns

A very hot day today, which gave me an opportunity to take Victor the off-road walker into the fields for the first time this year as things have now dried out enough. Most of the tracks are badly rutted after the wet spring and the walking wasn't too easy. At this time last year I was picking up punctures in walker tyres, but this time I got one in the sole of my shoe from this rather vicious thorn, a good 3cm long:

Nevertheless, it was good to get out into the fields again:

Despite all that, bad attack of fatigue yesterday evening. Played online backgammon after the walk and tea, cooked dinner, back-flushed the filter for the small fishpond, then just collapsed. Haven't done a useful thing except on the computer all night, and much of that time was asleep. But of course once it got past midnight, I started waking up and feeling a bit livelier again. It's the curse of the night owls...

03/06/21 Prescription review

Had the expected 'phone call from Dr.Ku yesterday morning and went through my prescription meds. No change apart from taking MST (morphine sulphate tablets) off the list - I haven't needed pain relief that strong since the early days.

Went to Ongar in the afternoon for some informal boules. As usual, played some very good throws and a lot of very bad ones... Nevertheless, won a few ends for whichever team I was playing in at the time (that can get confusing in friendly games). Got home, took the rather delayed lunchtime pills, made tea (cats, fish, and people) then fell asleep in the all too familiar way. But I was up at 0500, so maybe justified.

02/06/21 (2) Dex again

I have a 'phone consultation (prescription review - usually a  fairly complete waste of time) with my GP Dr.Ku booked for this morning - no specific time. I need to be up and about by 0800 in case he rings early - it has happened before. Perhaps it was the awareness of that, plus the 20mg of dex I've taken over the last two mornings, explains why I woke up wide awake and ready to go just before 0500. I don't think my ring will be happy about the amount of sleep I got last night. Anyway, I was up in time for a couple of sunrise photos:

02/06/21 Thorndon Country Park and phones

Again I find myself short of things to write about - until the next set of bloods, perhaps. We tick along, one set of pills to the next, and not much changes apart from the bowels which remain on the unstable side. Sticking with nothing more than one nightly senna plus a morning Spogest (gut bacterial spores) which has definitely helped before. It'll take that a week or three to have much effect, I expect.

Boules this afternoon, if the decent weather continues as predicted. A lovely summery day yesterday, and we went to Thorndon Country Park on the edge of Brentwood, stopping only to drop off  a couple of Amazon returns - one at our nearest Post Office in Fyfield, the other at a place that does UPS returns with just a barcode (which Amazon sent me) rather than the QR code that everywhere else wants - and  which they didn't send me. I'd spent the morning switching over from our old cordless phones (one base station and three extensions) to new ones (with one extra extension for the bedroom) with more up-to-date specs which should allow them to work with VoIP internet telephony and the new model True Call. I hope...