31/10/20 Gigaclear

Another wet day, enlivened by Gigaclear laying fibre along our road in readiness for our new ultrafast broadband service, coming in a couple of month's time. We've been waiting for this a long while, and as the local "Broadband Champion" I feel that a lot of tedious meetings have finally paid off.

Working in heavy rain. They're doing a good job of cleaning up after themselves, unlike one report I had yesterday from a different area where they're also working.

Last night's Senna / Fybogel / Laxido cocktail has yet to have an effect. Good thing I'm not planning on going out.

30/10/20 (2) No rain, fatigue improving

Better weather today and we did the "long walk" through Tower Gardens and Admiral's Park to the Central Park Cafe for coffees. Sat on a bench overlooking the lake and watched people feeding the ducks. And the seagulls, and a solitary moorhen that appeared from somewhere. Both felt a lot better for that, although I did have a mini-collapse when we got home. Which reminds me that generally the "fatigue" hasn't been as bad for the last few weeks. Otherwise, we found another load of stuff to sort and put in the skip (from behind the bar in the dining room), and also otherwise I've decided to bring the Laxido forwards to this evening. It's a real problem trying to find the right balance and then keeping it there for more than a few days.

30/10/20 Rain, car, #1 side-effect

More rain yesterday. Eventually got fed up enough with it that I took the car out in the hope that it might stop for a while when I was close to a park, but no luck. So I just took a drive around some less familiar country roads in the hope that some change of scenery might do me some good.

Forecast is much better for later today so we'll try to get out somewhere for a decent walk. It's been too long, although the clearout has been not too bad a substitute.

The dex dry mouth continues, and I rather forgot abut the diuretic pill before setting out, which forced a return home a little sooner than I had intended. And on a related issue, things are moving (or rather, not moving) again. Fybogel tonight, I think, along with the daily Senna. And Laxido as well the night after that if the Fybogel isn't enough. I don't like having to think about and do this daily management of the constipation but it is by some distance my #1 side-effect and I just have to get used to it as I think it's going to be with me for life, or at least as long as I'm on dex and one of the thalidomide variants.

29/10/20 Wet

Still raining and likely to stay all day, so not much chance of getting out. I'm reduced to walking around the house a few times.

I've taken myself off Furosemide (diuretic pills) for the last couple of weeks, not least since I got the impression that my GP wasn't too happy about continuing even on the reduced dose of 3 a week (that turned out to be mistaken). There didn't seem to be any need this time, so no point carrying on. But yesterday and today I have noticed a slight puffiness in the left ankle and foot, and also a little tightness in the left trouser leg at calf level. So I've taken a 40mg Furosemide today and will continue until that goes away (fluid retention is a standard Dex side-effect.)

28/10/20 (2)

We both had to be home by 12:00 for appointments (Sue online, me to go to Specsavers for repairs to my glasses) so went without our usual home-made cappuccinos after breakfast and went to Oaklands Park instead for a walk and a couple of their coffees. Specsavers impressed me - I 'phoned for an appointment this morning after accidental damage yesterday at the point where one of the side pieces joins onto the lens (rimless glasses). I expected having to send them away for a couple of weeks for repairs, but they did it on site inside ten minutes.

Spent the afternoon clearing out a few more boxes and desk drawers (there's always more...)

It was a dex morning, and for some reason the dry mouth thing has come back in full force. Haven't had that since I started the Len/Dex regime, as far as I can remember. More of an annoyance than a problem, but I could do without it.

28/10/20 Video consultations

Managed to dodge the rain for long enough to get a walk up to Pepper's Green Lane and check on Gigaclear's progress laying cable for our ultrafast broadband. I reckon they'll be coming past the house later today. Maybe, by the time we can actually get 900mbps service (a  month or two to go yet, I think), our GP surgery and Springfield will have got around to organising video consultations. Not as good as face-to-face but got to be better than 'phone only. The rest of the world has happily embraced Zoom, not to mention FaceTime and etc., so why can't the medical world do the same? As things stand, I can't even email my GP. Ridiculous!

I've just checked the practice website. We have five partner doctors, working a total of 16 days a week between them, plus a salaried GP (not sure how many days he works), and:

six practice nurses,

one practice manager,

eleven additional staff (receptionists, secretaries, pharmacists, etc.)

Making a total of three "support" staff for each (part-time) doctor. Some of those of course are part-time.

I have no idea how typical of a modern GP practice this is, or of how much support a GP needs for each patient/appointment - but it just feels a little unbalanced.

27/10/20 (2) Rain

 11:55. Rain all morning. Can't get out.

Recommended listening: THE RAINIEST DAY by a very gifted singer and songwriter, also the winner of the vocals category in the 2019 British Jazz Awards.

Finally made it out for a short but windy walk up to Pepper's Green, so that's today's exercise sorted out. The rain has stopped, more or less. The myeloma's still in remission as far as I know - next set of bloods in ten days time

27/10/20 Clearout completed

 Finished the clearout yesterday, and we filled two 4m3 skips. The only consolation for having to order (and pay for) a second one is that if we had stuck with my original plan for a 6m3 skip, we'd still have needed a second one. Now I'm just waiting for the first time one of us wants something, can't find it, and the answer is "It went on the skip..." Bound to happen, and I give it no more than a week.

Haven't had a walk for days (with one small exception)  but have regarded the clearout work as an adequate substitute. So of course tomorrow is forecast for an over 50% chance of rain through the day. Will have to hope the forecast is wrong.

Still pleased with the way I've coped with the work. I haven't had to stop for a break once, apart from the ones forced by lunch etc., and I haven't even collapsed much afterwards. I've felt tired, but not completely washed out. Under the circumstances that's not a bad record.

I did get a short walk in today because I heard that Gigaclear - our long-awaited superfast fibre-to-the-premises provider - had started work up at the Fountain Road junction. The rumour turned out to be true - conduit going in this week, fibre next. Even so it'll take a while for them to complete enough infrastructure to get us online at ultrafast speeds, but at least we now know that it's close and we won't be waiting until the end of 2021.

26/10/20 More clearing out, and reflections

The clearout continued yesterday with the attic and even more in the garage. I've now finished with the the rooms we call the box room and the office, so now I just have the remains of the workshop and my study to do. Call it two more days... the second skip should be just about big enough. Starting to return to normality i hope - after the unintentional overdose of Laxido. No walks for the last few days but  I think I've had enough exercise to compensate!

Very tired again last evening - didn't make it upstairs after dinner until nearly 10:00 and fell asleep several times before then. But as usual, had my shower at about midnight and now feel fresh as a daisy and ready to go for several hours yet... If I ever get the chance to live my life over again, I'll have to find a career that can be mainly night work.

I wrote what's below last night but left it in draft form as I'm not entirely happy with it, needs a re-write. But this blog is supposed to be an honest reflection of what I'm experiencing and feeling, so I'll let it stand.

-----------------------------------------------

After catching up on the Facebook Myeloma Support Group and while watching my recording of Jazz Piano Gold from BBC4 (it somewhat predictably starts with Ellington and Brubeck), I've been reflecting on how lightly I've got off so far, now into the second year of my myeloma.

The disease itself caused that big hip lesion which made me almost unable to walk for a few weeks, even with the aid of two sticks or crutches. But just five doses of radiotherapy fixed that, and there's nothing else that can be definitely attributed to myeloma rather than to the treatment that's kept it under control. 

First and foremost of course, is the daily management of the constipation problem. After that comes the loss of stamina, tiredness, "fatigue" (now we're on to Monk) and the various effects of dexamethasone, from sleeplessness to the mild mania which has kept me going over the last couple of days. I've had no significant reaction to or side-effects from anything else, and I'm almost embarrassed by the number of times people on the Facebook group ask about side-effects and all I can do is reply "I haven't had any" (Enter Count Basie with "All of Me".) Other people on the same meds suffer far worse, with wild mood swings (dex), rashes, nausea, you name it. (Jacques Loussier from 1966, followed by Stan Tracey.)

The overall pattern is easy to see - as people move through each stage of remission & relapse the disease becomes more resistant to treatment, needing new drugs and combinations with more demanding side-effects to cope with. (Oscar Peterson now). Eventually you hit the point where coping with the effects of the treatment becomes as bad or worse than coping with the disease. That, I suppose, is when the one-way ticket to Switzerland becomes an attractive option. (Chick Corea now, with a multitude of keyboards). There again I'm doing well, so far. Bone disease and consequent pain is a problem for many myeloma patients but despite having several small lesions in my spine and base of skull, the recent PET scan reported no evidence of compression fractures in my vertebrae (Geri Allen now. No Herbie Hancock? McCoy Tyner? Keith Jarrett? Let alone Earl Hines?? But we do get Ahmed Jamal) despite the way my back sometimes feels...

It's all about keeping each new stage as far away as possible while making the best of where you are. That's my plan, anyway. I'm just grateful for my early diagnosis which I'm sure has helped. And as the recent PET scan confirmed, no sign of of the compression fractures in the vertebrae which cause many myeloma patients such difficult pain. I don't want my spinal column reinforced with cement, which appears to be the only treatment. (Herbie Hancock now, followed by Reuben Gonzalez (who?) and Abdullah Ibrahim aka Dollar Brand, then Diana Krall. She can sing, but hardly a great pianist!).

No live music for seven months. How have I coped with that? Could easily be seven more before it starts up again for me. At least there are some positive stories coming through about the Oxford / Astra Zeneca vaccine being ready as soon as December, and other vaccines doing well in trials. Some grounds for optimism there although still big questions about how effective these vaccines will be and whether they will work for the immune-supressed. I hope they will, because I don't want to spend the rest of my life in permanent hiding from SARS-COVID-2. Better to get it at a time of my own choosing and take my chances...

The programme finished with Diana Krall. A strange choice.

24/10/20 (2) The Clearout again

The muscular aches and pains turned up a day later than expected, but gradually wore off during the day. Or most of the way off, at least. Today was mainly devoted to clearing out the attic and that bit's done now. Tomorrow I'll be back sorting the smaller stuff in the garage and workshop. I've been qute pleased by the way I've been able to keep going on this job - stamina is not what it was but I've put in more hours than I thought I might be able to.

As for the other kind of clearout, I'll just say that I don't anticipate needing any more Fybogel for a few days. I might even omit the usual senna tonight...

The Clearout

Poor  sound quality, but the best I could find.

24/10/20 Clear out - in more ways than one

Nothing new on the myeloma front, except another few days of the old friend constipation. I had a Fybogel and a Laxido night before last, and after threatening action all day it worked at the last moment before the shower. Unfortunately I repeated the combination a couple of hours ago, so I anticipate an active morning... Well, that's enough of that - just glad I've avoided another encounter with the glycerine suppositories.

The Great Clear Out continued today with the original skip taken away and a new one delivered. I got through the night without the muscle strains etc. that I expected - must be fitter than I think - and I gave myself an easier day as planned by starting the sort out of old tool boxes, tins of screws and nails etc., power tools unused for many years. No more than halfway through that as yet...

22/10/20 (4) Workshop

This afternoon I did a lot of harder work than I've done for quite a while, wheelbarrowing stuff up from the "workshop" outbuilding to the skip, and then heaving it in. I feel surprisingly good on it several hours later - perhaps a touch of dex mania helped - but anticipate plenty of Deep Heat after my shower and a fair bit of stiffness and muscle aches in the morning. At least it takes the mind away from other things.Tomorrow will be a lighter day as most of the heavy stuff is done and my plan is sorting out old toolboxes in the garage.

22/10/20 (3) Castle Park

Made a breakfast decision to go for a walk in Hatfield Forest (National Trust) but were met by a lady who told us that we couldn't go in because we had failed to pre-book by the day before. Not best pleased!

We quickly revised the plan and went to Castle Park in Bishop's Stortford instead, and found a very agreeable place with a riverside walk. It will now go onto the list of regular walks, and it's even very close to the Posh People's Supermarket (Waitrose) although neither of us will be going in there for quite a while.

We arrived a bit too late to see the castle (by several centuries) but there is still a rather fine castle mound:

Later we found a rather steep set of steps on the left, and you could just see the top of some stonework, so there must be some remains up there which I'd quite like to see. But, as the people of Braavos say to the God of Death, "Not today!" Instead we did a circular route by turning right out of the car park, and then the walk along the River Stort on the left. We didn't find the ford, if it still exists. Or a wandering cleric out for a stroll.

22/10/20 (2) Security software

Not myeloma related!

A new version of Malwarebytes just deleted Dashlane. Maybe I could make an analogy with one drug counteracting the effect of another...

Major panic but I've managed to put it right. Probably... Haven't looked at phone, tablet, notebook etc. yet.

Looks as if it was a good sunrise but now too far to the right to be seen from north-facing (roughly) windows at the back of the house, and not far enough round to be seen from the front.

If an early dex night morning is like that, what hope is there for the rest of the day?

22/10/20 Rain, batteries, Zoom

Heavy rain all morning and as I left for my routine blood test at the GP surgery. Had quite a long chat with the nurse (one I know well) about living with cancer and myeloma in particular. After the overnight fast and missing breakfast I got home and made myself beans on toast topped with a fried egg done in olive oil using my small cast-iron frying pan. Keep the heat low and it makes a beautiful egg, well worth the small trouble of re-seasoning afterwards.

Nothing much for the rest of the day, except that while sorting out the batteries and chargers in the garage I discovered that I have several more chargers than I have batteries for cordless garden tools etc. to fit them. It's a mystery. Perhaps the others will turn up as the clear-out continues.

Someone on the Facebook Myeloma Support UK group suggested a regular Zoom meeting concentrating on particular aspects of the disease. I think that's a great idea and have said that I've got a fair bit of experience with Zoom (Parish Council meetings, virtual jazz performances, and online backgammon) and would be happy to be involved in running it.

So far, the new heron defences seem to be working. I hope it lasts...

21/10/20 Parkinson's, router, bloods, alarm service

Had another 'phone call with GP Dr.Ku about my possible mild Parkinson's, and he's having both of us in for a face-to-face on Nov 4th. Or possibly a face-mask to face-mask.

We got started on The Great Clear-Out, with Sue in the workshop and me in the garage. Unlikely to get any more done today (rain again, although it's eased off in the afternoon) but I'll try to sort out the many chargers and batteries for all the cordless gardening equipment etc..

Annual alarm service due 15:00 this afternoon.

The new router, which seems to be incompatible with the "legacy" PlusNet account, is going back to Amazon for a refund and we're moving Sue onto a new broadband account with BT. This will mean we'll have to carry on paying when Gigaclear fibre finally arrives (could be anywhere from next month (highly unlikely) to 12/21) but that will be a small price to pay for freedom from PlusNet.

Routine blood test this morning (GP, not myeloma) and I asked them to add PSA as it's about six years since my prostate was checked out. I don't think I have a prostate problem, but it would be just my luck to have one cancer and then develop another...

20/10/20 Rotting wood, eggs, routers

A day pretty much free of myelomatous thoughts (apart from remembering to take the pills), which makes a pleasant change. The skip arrived early morning, and I spent some time moving old wood - the rotting remains of a swing seat, a garden bench, and some trellis etc. from where we had dumped them into the skip. That was enough exertion to tire me out, so happy to take it as yesterday's exercise. Scrambled a couple of eggs for lunch using the Gordon Ramsay method, had a doze, and we then had a new roofer come round to quote for the necessary repairs. At least this one didn't demand scaffolding, so expecting a much more reasonable figure than the last man gave us..

Then I turned to the problem of Sue's misbehaving router. I hate router transplants, they always raise unforeseen complications. This time it seems that the new one is simply incompatible with her ISP - there's just no way to set some of the settings I need to set. Worked on it late afternoon and all through the evening, and got just about nowhere. Will try some new ideas in the morning after 'phoning the GP surgery - for some reason I've got two separate dates for a GP 'phone call (tomorrow 20th and next week 26th) in my Google calendar and I'm sure they can't both be right. Also I need some hint of a time if it is tomorrow, because I want to spend at least an hour or two clearing out the workshop and neither our mobile service nor the cordless landline phones work reliably, or at all, down there.

19/10/20 Warm glow

Not a lot for the last couple of days, I've just been basking in the warm glow of those blood and scan results. Had a walk and a coffee in Oaklands Park yesterday, otherwise the usual run of one thing and anther around the house. Saw the heron late yesterday afternoon (unusual, he's generally more of a morning bird) as he flapped off into the neighbour's garden. We still have the same number of fish as before, so the new defences seem to be working - so far.

16/10/20 (3) Blood test results, and the war against the heron

Last Friday's blood test results are in - paraproteins still at zero, one of the free light chain numbers is a little outside normal but the all-important ratio is OK. All else is good or OK under the circumstances. And the COVID-19 swab (my fourth) was negative.

I spent the afternoon dismantling the improvised heron defences and building the new ones:

My plan is to replace the green garden twine with much more invisible nylon monofilament fishing line, but Sue says it's OK the way it is. The plastic heron is now in the real heron's favourite route in and out, so I hope (without a lot of faith) that it maybe more effective there.  

16/10/20 (2) PET Scan results

The report came through very quickly. This is a slightly edited version. Basically it's very good and knocks the idea of non-secretory myeloma developing firmly out of the park.

PET whole body fdg vertex to feet. 

Direct comparison is made with the previous study of 05/03/20.The metabolic PET fdg data demonstrates a high quality macroscopic metabolic response to therapy, and a maintained high quality response with lenolidamide/Dexamethasone. No clinically significant sites of bony PET activity are defined on the current data. 

The dominant plasmacytomas left inferior ilium and acetabulum and the right posterior 4th rib are PET negative, large lytic lesions at these sites being stable compared with the previous CT bone windows. New extraosseous soft tissue components of disease not defined. New sites of active myeloma not defined in terms of the right shoulder territory, the neck or the lower back in particular. 

Some small volume lytic sites elsewhere for example base of skull and proximal right femur noted as previous on bone windows. 

A small site of persistent PET activity is present deep to the umbilicus, corresponding to 2 cm nodularity affecting the anterior peritoneum at this level, stable since previous, most in keeping with some persistent nonspecific inflammatory type PET activity.

The lungs are well aerated, no pleural or pericardial effusion. Some lung atelectasis noted. No renal or GI obstruction, good volume renal cortices being observed. No splenomegaly. 

The previous PET activity tracking along the anterior aspect of the left iliac lesion, which was considered to reflect some bone remodelling on the previous study, is no longer shown. Pathological vertebral collapse is not defined. 

The whole-body PET findings are indicative of a high quality macroscopic metabolic response to therapy, with a maintained complete macroscopic remission status being demonstrated on the current PET data. No sites of active macroscopic myeloma are defined on the current PET data. Correlation with the patient's clinical and multiple myeloma markers will also be instructive. 

The inflammation under the umbilicus may well be related to the umbilical hernia repair I had done 2002 or thereabouts. The surgeon implanted some strengthening mesh to avoid a recurrence and there may be a slight reaction to that. Nothing to worry about.

16/10/20 Dex night

Four uninterrupted hours last night, then woke up with that dex-induced utter certainty that there's  no chance of any more. So will catch up on a couple of Big Bang Theories, which I have rather neglected of late, and try again for a spectacular sunrise photo or two...

15/10/20 (2) Back again

All went well with the London trip for my second PET/CT scan, got back home about 17:00. Efficiency of Uber very impressive - less than a two minute wait at both pickup points. Of course that may be a reflection of the reduced number of rides being requested at the moment. London traffic was lighter than usual, but not dramatically so. Entertained myself for some of the taxi time by estimating percentage of face-mask wearing pedestrians we passed - I reckon somewhere between 25% and 33%.

Now it's just about waiting for the report - IIRC it came through in about a week last time.

I now have two splendid bruises from the canula inserted into a vein in my right wrist for the Zometa drip a couple of days ago and the one in my left elbow for the radioactive injection earlier today.

15/10/20 London trip

Successfully dodged the rain to get a decent "short walk" yesterday to the Central Park Cafe and a very respectable cappuccino and shortbread for lunch, followed by a bit more walking around the footpaths and round the lake to make up a respectable distance.

As usual, no bad reactions to the Zometa yesterday. I've got the new package of pills for the next four weeks and re-started Lenalidiomide after the week off yesterday.

It's a dex night tonight and I have to have breakfast and (decaffeinated) coffee finished by 08:30 so as to have six clear hours of nothing but water before my 02:30 appointment time at the European Scanning Centre. Will be taking some things to eat once I get out of there! I'm as organised as I possibly could be with face masks and hand sanitiser and vinyl gloves. All alarms are set, but if I get to bed in the next half hour or so (01:42 as I write) chances are that I'll be up and about well before they go off.

14/10/20 More confusion

Following doctor's orders I got as close to a simple straight answer from Dr.Ch as I'm likely to get (basically, wait until we know what Parkinson's drugs I may be on, thern check them out for interactions on EMC [Electronic Medicines Compendium website]), so I rang the surgery to make a face-to-face appointment. Then I gather that Dr.Ku said he wanted another 'phone appointment instead...

The rain stayed until about mid-day, then came back even heavier. So no walking today. Zometa drip done at Springfield, and pills collected for the next cycle. I still can't quite work out how it takes two hours, but it does.

The clock/radio/alarm in my study has got stuck at 21:27. It's now 00:39. Fortunately I have other clocks. That's a job for later today.

13/10/20 Rain, Zometa

More rain, harder today and forecast to stay until maybe 14:00, when I'm due at Springfield for a Zometa drip. So another day with no decent walk!

12/10/20 (2) Phone calls

Dr.Ku (GP) rang late afternoon and wanted to go through all my current meds to keep his records straight. He's happy to let me have more Furosemide (diuretic) to keep on hand in case the foot/ankle swelling comes back. As for the possible Parkinson's, orders are to discuss possible complications between Parkinson's meds and my myeloma treatment, then to arrange a face-to-face appointment with him, possible double for further checks to follow. He gave the impression he thought it was entirely possible that I might have mild Parinson's.

Dr.Ch then 'phoned. All the myeloma side of things OK at the moment, and he gave me some websites to look at for possible drug interactions between treatments for Parkinson's and Myeloma.

12/10/20 'Phone phrustration

Three 'phone calls scheduled for today:

1. To the GP surgery to ask if they've got the B12 self-injection kit organised for me (they never rang back about this on Friday!). It took only half an hour to get through, which I suppose isn't all that bad for a Monday morning. One of the nurses called back later to say yes, and I did a quick trip out to collect. Injection now done.

2.  Dr.Ch. was supposed to call from his break on the Isle of Wight this morning but didn't. I was warned by Sarah the Secretary that it might be on Tuesday, and if not to call her on Wednesday. I know from email that he's already authorised the next round of meds and Zometa, so no crisis, just annoying sitting waiting for a call that doesn't come.

3. Dr.Ku (GP) is due to call today about diuretics and possible Parkinson's symptoms. The nurse I spoke to said it would be some time after 15:00 (probably), which is more or less now. So still stuck at home, still waiting.

I don't like taking these sort of calls on my mobile while out and about - for one thing, it's between hard and impossible to take notes. So I prefer to be at home with my notes all organised in advance. But not much chance of getting out for a walk today.

12/10/20 Marks Hall Estate

There hasn't been anything to write about myeloma-wise for the last couple of days - there's rather more abut the developing and rapidly worsening COVID situation, but no more of that here for the time being at least. The war against the heron continues, and I'm expecting a delivery from Up The Jungle which I hope will solve the problem. Certainly the plastic heron and the shiny reflective heron-deterrent that floats in the pond have both failed miserably.

Went to Marks Hall Arboretum yesterday and ran into further problems with them accepting that I've renewed our joint membership. It turns out that the reference numbers on our membership cards don't match the number assigned to our renewal - some sort of madmin failure. I've emailed them and hope that will sort it outn and get us new cards that actually match our membership records.

Had a good long walk there - autumn colours beginning but far from fully developed yet. I think this may be one of those years when it never really happens. Here are a couple of photos of the Lower Lake:

09/10/20 Blood test, Covid, B12

Blood taken at Springfield this afternoon - after about 40 minutes in the waiting room. I think it's (mainly) the time needed to disinfect everything between patients. Also had another COVID swab done.

Realised that with all the other medical stuff going on I had missed the date for my B12 shot, which should have been on 23/09. 'Phoned the surgery and offered a 17:10 appointment on Tuesday, which would interfere with the sacred backgammon hour... Hoping to arrange to do it myself again if the nurses can sort out a package of the necessary bits and pieces for me to pick up on Monday or Tuesday morning.

Full results of the bloods should be with me in a week, once the paraprotein and free light chain results come through. More nervous waiting time...

08/10/20 (3) The war against the heron

Another damp morning, very light rain most of the time. I spent the morning installing new anti-heron devices - we're now down to just four fish in the fishpond. The new artificial heron was straightforward, apart from getting the spike vertical going into hard ground. The plastic "spiderweb" things floating on the surface were a nightmare, not least because the connecting clips are both tough and fiddly, giving me severely sore fingers. Had to take several breaks for Vaseline treatment, and during one of them we had a very heavy shower which soaked my coat that I had left over the back of a garden chair. Anyway, all that was quite enough exertion for the day so for once I felt OK about missing out on a walk. 

Dr.Ch is away next week, so I sent him another email about those bone marrow biopsy results which he keeps on promising to email to me (including in his latest GP letter!) but somehow never does.

08/10/20 (2) Dex night #1, more rain

Slept well last night until awake about 07:00 Being a Wednesday night, first 10mg dex of two. . Admitted defeat and got up 07:45, an hour before alarm time. A very light rain continues and cracking the bedroom window open revealed a cold, windy, grey, and unpleasant day. Forecast says rain will stop in the afternoon, so I'll leave any going out until then. It's already all too easy to use the current bad weather as an excuse for not getting the daily exercise that I need - what's it going to be like through the winter with ice and snow on the ground?

08/10/20 Fishpond, Maldon Promenade, scan appointment

Yesterday started with our electrician coming to fix the problem that has afflicted the pump and fountain in the small fishpond and our biodisc. All sorted now - it was down to a perished seal on a "waterproof" connector letting enough water in to trip the circuit breaker in the workshop and then blow a fuse in the outside switch box. We also had a heron attack, which raises the probability that the several fish we have lost recently were heron victims, even though none of them showed the marks that I've seen many times in my fishing days. Anyway, our heron has been sighted several times over the last few days, he's clearly identified us as part of his feeding territory, so new anti-heron defences have been ordered.

After that we left later than intended for Promenade Park in Maldon, with excellent sausage rolls for lunch in the usual Cafe. The walk wasn't all that long (strong wind threatening to blow my hat off, and the tide well up for once) but much better than nothing. I didn't have the usual post-exercise collapse & snooze, maybe because of the 10mg of dex I took in the morning.

While in Maldon I had a call from The European Scanning Centre - appointment on Thursday Oct.15th at 2:30. to drive to our usual Just Park spot in Redbridge(booked) and then take an Uber to the Centre. That will involve minimal exposure to the plague-ridden atmosphere in Redbridge, currently at or very near the top of the country's COVID incidence list. And the same on the return - Uber followed by driving back home.

06/10/20 Waiting for bloods

 A much drier, warmer, and sunnier day yesterday. Sue went for a walk in the park but I stayed in because we were expecting a phone call from our plumber so I still only managed a fairy short local walk up to Pepper's Green Lane. But much better than nothing.

Next blood tests are on Friday 9th, which means my mind is turning in that direction again. Sooner or later the results are going to come in with the paraproteins up and big decisions will have to be made. And that week of waiting between taking the blood and getting the PP and FLC numbers gets harder every time...

04/10/20 Yet more rain, and some other things

More rain all day, if lighter in the afternoon, and a parade of problems to keep my mind off other things. Last night we found a small water leak in the airing cupboard - it appears to be coming from a valve in a pipe coming down from the loft. Messing about with it might involve a potential disaster considering all the water above that level, so our friendly local plumber has been summoned. Should be here tomorrow (Monday). Sue thinks he said something about a possible issue with that valve last time he was here before lockdown, but I don't remember - I was probably keeping a good safe distance away.

Then Sue had what she thought was another battery failure with her car at the local petrol station / M&S shop and I had to go out to attempt a rescue. I'll just say that a very helpful neighbour happened to turn up and offered help, and the problem wasn't quite what we thought it was...

Got back home to an electrical problem - pump and fountain failure in the small fishpond, not to mention the Biodisc that we have instead of mains sewerage. Fixed that, but then it went wrong again - everything now works except the pond pump. Either the pump has died, which is not likely, or a fault has developed in the four-way switch box which feeds the pump, the fountain, and the filter. I've sent emails to our electrician and will 'phone in the morning if needed.

Nothing about Myeloma at all - but that's the way of life in remission. You just get on with other stuff (if rather more slowly than in pre-cancer days), try not to think about it too much, and gradually turn into a nervous wreck waiting for the next set of blood test results...

03/10/20 (2) Still wet...

Rain easing off early afternoon, but still enough to keep me inside despite the need for a bit of exercise. Fortunately no evidence of laxative overdose this morning, all pleasingly normal.

03/10/20 Wet wet wet, and constipation management

Heavy rain all day yesterday, didn't get out of the house except to the garage and the bins. After a couple of bowel-ionactive days with Fybogel as well as the usual daily senna, I added a Laxido sachet last night - and then had a very satisfactory movement just half an hour later. These things work overnight and not that quickly, so I'm probably heavily over-dosed for the morning. That might be interesting.

Managing the constipation side-effect is something I have to think about several times a day and still don't always get right. .The worst side of it - apart from the very unpleasant point where it reaches the glycerine suppository stage - is the effect on any plans to go out because the laxatives can hit at any time, and you don't want to be out of quick access to a WC when that happens. Generally I know about halfway through a morning whether I'm OK for a good few hours or not - just one reason why I do my best to avoid appointments etc. before late morning.  Getting hard to remember the days when I never gave the whole subject a thought...

02/10/20 Skip ordered, and rain

Slept OK for dex night #2 - uninterrupted and woke up about an hour before the alarm. The skip is ordered for a fortnight from the 19th. I just hope I've got enough stamina to do my share of the work involved in clearing out the garage and the workshop. The main thing will to be to resist the temptation to get it all done in the first couple of days.

Heavy rain overnight and this morning. Might improve enough to fit a local walk in this afternoon, no point in going anywhere else.

01/10/20 (4) Parkinson?

 I dropped a hint a day or two ago, and now here it is in full, as far as things have gone.

Back before the March lockdown, Sue and I were in Springfield for either a blood test or a Zometa drip, and while she was preparing my left arm one of the nurses (always a very observant one) spotted the slight tremor I've had in my left hand for years and asked "Have you got Parkinson's?"

The idea had never entered either of our heads so we just said "No" and she replied "Are you sure?" and we left it at that. Since then the tremor has definitely got worse, and a similar shakiness has increased from barely noticeable to quite obvious in the right hand as well. It used to be that it would stop if I was doing anything involving fine motor control, but that's not true any more, or at least not completely true.

That was the seed planted. A few days ago Sue was watching me moving around doing things in the house and she said "I think you might have Parkinson's." Since then I've been googling symptoms and there are quite a few that match and others that don't  - but a Parkinson's diagnosis doesn't require all of them. The big problem of course is to work out what relates to the myeloma, what relates to the myeloma treatment, what relates to just getting older, and what might be an indicator of Parkinson's.

The big ones are:

From the NHS website:

1. Tremor – shaking, which usually begins in the hand or arm and is more likely to occur when the limb is relaxed and resting.

2. Slowness of movement (bradykinesia) – physical movements are much slower than normal, which can make everyday tasks difficult and result in a distinctive slow, shuffling walk with very small steps.  (I get the slow movement esp. doing things around the house, and the shuffling walk is there to a small extent but erratic.)

3. Muscle stiffness (rigidity) – stiffness and tension in the muscles, which can make it difficult to move around and make facial expressions, and can result in painful muscle cramps (dystonia). (No problem with facial expressions as far as I know, but a possible alternative explanation of things like the right shoulder / neck problem recently.)

4. Balance problems – these can make someone with the condition more likely to have a fall and injure themselves (two or three times recently I've suddenly lost balance and felt for a moment that I had no idea which way was down. It has only been momentary and hasn't (yet) led to a fall. Every time has been indoors and not far away from a wall for support.)

5. Nerve pain (the right thigh "trapped nerve" goes back at least 30 years so is hardly likely to be involved but possibly it's been worsened...)

6. Constipation (well, I certainly have that now and never did before I started myeloma treatment, so probably innocent but might be contributory.)

7. Excessive production of saliva (drooling) (yes, esp. when asleep.)

From the American Parkinson Disease Association website:

1. Urinary frequency (the need to urinate often) and urinary urgency (the feeling that one must urinate right away, even if the bladder is not full) (yes.)

2. Fatigue is a complex symptom of Parkinson’s disease that is not fully understood. (contributory?)

 3. A common, early symptom of Parkinson’s disease is a decrease in the natural swing of one or both arms when walking. (Yes but been like that for years.)

For all this to make sense I have to assume that I've had very mild Parkinson's for a good few years and that for some reason it's started to develop more recently. Could there be a connection with the myeloma or the treatment? As someone wrote on the Facebook Myeloma Support UK group when I raised the question there, "totally different system involvements" but that doesn't necessarily mean that treatment for one can't have an effect on the other...

Having worked through all that I decided that I wanted a face-to-face appointment with my GP to see if he felt it deserved further investigation and possibly a referral to a neurologist.  After the usual long wait on the 'phone (nearly broke into the sacred 17:00 backgammon hour) I was told that Dr.Ku would 'phone me and then decide whether an appointment is needed. As I already have a 'phone call booked for the 12th (about my diuretic pills) and there was nothing available earlier, we agreed to add the Parkinson's issue to that call. OK because I don't think there's any rush  but still far too long!

And there you have it. Possibly all in my fevered imagination, possibly not. We shall see, but not for some time after the 12th.

01/10/20 (3) Blog Archive

I've made a change to the Blog Archive, which I think was needed now this blog is well into Year Two. This way you can get to individual posts by date, which will be occasionally useful for me if not for anybody else. It also reminds me that I really ought to think up titles for more posts!

01/10/20 (2) Dex report and a poor sunrise

Dex report: a bit over four hours sleep (uninterrupted) last night. I can live with that. Up and wide awake in plenty of time for sunrise. Will attempt a photo or two.

Taken one minute after sunrise time. Too much low cloud for any sun to get through.

01/10/20 GREAT Great Notley Country Park

 Finally made it to Great Notley Country Park yesterday and had a good longish walk. Much needed after the last few days of relative inactivity.

That's possibly the least attractive view from the terrace outside the cafe, the park is actually rather more interesting than that. But we picked the table that was the furthest away from everywhere else.

Otherwise - well, the right shoulder/neck problem has been no more than minimal since I discussed it with Dr.Ch and we agreed on some imaging to investigate what all my lesions (esp. the back 4th rib one) have been getting up to. I'm reminded of the time an osteopath once said to me that "the treatment begins the moment you pick up the phone for an appointment". Probably very true, the body and the mind are so close together.

On that subject I now have something else to worry about, partly based on what one of the chemo nurses asked me on seeing the tremor in my left hand while she was setting me up for a canula. I've had that tremor for years. More about that another day.