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.