30/04/21 Lawnmower

Nothing new on the myeloma front again, just ticking over on the routine pills, trying to keep the constipation and the oedema in balance, and getting on with daily life.

Late morning brought a new delivery of our Swiss Water Decaffeinated coffee - I get a pack every three weeks to keep the espresso machine well fed. Despite the packaging our postman goes into raptures over the small of the coffee... 

A little later I got a delivery of three new "Competition" boules and a few accessories. My old set of six cheapo ones had started to rust badly after spending too many cold damp winters in the workshop and although they're sort of OK on the lawn, just a couple of matches on the hard surface at Ongar caused the chrome plating to start to chip and break away. Three is all you need to play singles, doubles, or trebles, as long as the other players have their own. My new ones are slightly smaller and lighter than the old ones, which I think will suit me better. Will try to get down to Ongar this afternoon to give them a try and maybe play a match or two.

Also picked up a new electric-start lawn mower from Len's Lawnmowers near Writtle., Went on to Writtle and had a bit of a walk in  Brewhouse Hoppit, a strangely named piece of land next to the Writtle Co-Op:

One side is bounded by the (rather small) River Wid, and I found
this attractive spot:

I might have found that quite interesting in  my coarse fishing days.

And here's a very posh Bentley in the Writtle car park...

9/04/21 Reviewing the situation

 Again, nothing new on the myeloma front and I was in a reflective mood when I started this, so...

I'm a few days short of twenty months since my diagnosis. We might have got to that point a few weeks earlier, but I still had a very early diagnosis compared to most myeloma patients. That, I believe, is the main reason why my "journey" has been a pretty easy one, so far.

How has it changed my life? Well, over those months I've taken far more pills and had more injections (not to mention blood tests) than I've had in the rest of my life. I've had to become used to regular hospital visits and accepting that for the rest of my life I'm going to be totally dependent on medical services. That hasn't been too easy for someone who used to believe in "the fewer pills the better". 

Dex nights can be difficult but on the whole I've learned how to cope with them. I haven't - as far as I know - had much of the drastic mood swings etc. that dex can cause. If I ever go up to a much bigger dose it may become a bigger problem. Dex also probably causes the skin thinning that leads to the finger splits that have caused me so much trouble this year. Again, I'm gradually finding ways to mitigate that problem.

Then there's the constipation and the water retention (causing oedema) that both require daily watching and adjustment of the treatments. It's getting better - long time since I had to resort to the glycerine suppositories - but can still have a big impact on daily life, especially in the mornings while waiting to see if the treatments have worked or, in the case of diuretics, waiting for the effects to wear off. For that reason, I try to avoid any commitment that means leaving the house before late morning.

Tiredness, fatigue, falling asleep at the wrong times. It's a pain. Almost any level of activity beyond the sedentary needs half an hour or more asleep to recover - and even then my energy levels are often too low, especially when it comes to standing up and starting something. I'm much better when I've got going. This seems to be connected to a general slowness of movement. My reactions, as far as I can tell, are as good as they ever were (possibly not the fastest) but movement - esp. if whole body rather than just one bit - is definitely slower, and causes much frustration in others. Walking speed is way down on what it used to be.

Walking - I'm fine around the house or on familiar grounds with no walking aid for short distances. Beyond that I still need either a stick or a walker, mainly for support and confidence. I'm acutely aware that with lots of bone lesions still present I'm at high risk of broken bones if I should fall, and that would be a complication that I don't need.

It's hard to disentangle the myeloma from the infernal virus, even though I haven't had it. For instance, before this all began I used to do two, maybe three, evenings of live music most weeks. If the virus had never appeared, would I still be going at that rate? Well, I kept it up from diagnosis in September 2019 most of the way through to the first lockdown in March 2020, despite the really bad walking for the first couple of those months. But my feeling is that I would have had to cut down to maybe one a week because the combination of the disease and the treatment just leaves me too drained to cope with more. The unfortunate implication of that is that when I reach the end of my personal roadmap (at least partially successful vaccination for immune-compromised blood cancer patients, and two effective treatments) I'll never get back to the way it used to be.

As for the future - well, at worst it looks pretty bleak. My blood numbers start going up again, second  and third line chemo are less successful and give me only a few months each, then we get into the later lines where the side-effects of the drugs start getting to be as bad as the disease. In two or three years time I'll be seriously thinking about the one-way ticket to Switzerland. Better that than the final stages of any cancer.

On the other hand, I might go on for years in the current remission, and even more years in second and third line etc. with tolerable side-effects and a decent life-style. By which time I might well have reached my  normal life expectancy anyway. Myeloma is such an individual and unpredictable disease that there's just no way of telling. All I know is that I don't have a particularly aggressive form of it. And of course there are new treatments coming along all the time...

Enough of these reflections. Time I posted this before I start depressing myself again, or decide to delete it.

28/04/21 Change of plan

Not a nice day at mall - cold, bleak, windy, rain coming later. It'll be worse on the coast. Marsh Hall Country Park trip deferred until a better day, we'll probably end up at Oaklands again...

28/04/21 New chair

I haven't blogged for a couple of days, which is unusual. Nothing significant has happened in relation to either Myeloma or COVID, I haven't been out for any walks (but I have comfortably met my activity targets). I've just been busy with stuff at home - fixing punctures, sorting out online banking problems and replacing my old office chair in my study (it was largely held together by duct tape after at least fifteen years of faithful service) with a new one. That was more complicated than it might sound because of the need to completely disassemble the old one in situ before moving the bits downstairs and into the garage before the final journey to the tip. Here's the new one:

This one has an extending footrest and reclines much further back than the old one did, so even better for falling asleep in here...

Several features of medical interest here - infra-red thermometer, two blood pressure monitors, pack of lateral flow COVID tests,. box of alcohol swabs, couple of weights for exercise (and under-desk exercise bike almost hidden behind the chair). And the tangle of electrical spaghetti on the right is nothing compared to the one on the other side that you can't see!

Later today we plan to go to Marsh Farm Country Park in South Woodham Ferrers on the estuary of the River Crouch - should be some interesting (and flat) walking there. But there is some rain forecast so plans might change if it's worse than expected.

25/04/21 (2) Boules, puncture

Got up early, partly thanks to the dex, and watched some Netflix before an early breakfast. Shadow and Bone has some promise, I think.

Got to Ongar for my 10:00 appointment with the secretary of the Ongar Boules Club. I'm now a member.

We stumbled upon this during an Ongar walk a couple of weeks ago. We've had a set quietly rusting away in the workshop for years and very occasionally got them out on the back lawn - certainly enough to destroy the zip on the case, now held shut by a length of cord. I think I'm going to have to buy myself a new set but there's a lot to think about - diameter, weight, surface texture, hardness, pointer or shooter?

Partly I wanted non-strenuous exercise (it got me past my activity target, just), partly an extension to social life as things relax, and partly some structure to my life which can too easily become just taking the next mound of plls and waiting for the next blood tests. It's all very much "friendly" but there are occasional matches with a couple of other clubs in the area. I gather that in the last match with the twin town of Cerizay in France, we won! I don't know if that will continue post-Brexit - I hope so.

I don't see a return to live music for some time yet, but there is possible good news of Pfizer developing a treatment (pill) for COVID-19 by the end of the year. That would mean pushing the trials through at an unprecedented rate! Some time ago I decided that my personal roadmap back to live music would be vaccination demonstrated to be at least partially effective in immune-compromised blood cancer patients, and two effective treatments. Evidence for the first one is still weak but looking brighter, and the second would be halfway there if the reports can be believed. And that reminds me that I must do another government antigen test this evening.

Back to the boules. Several good chats with other players (almost all of a certain age) and I played two matches, winning three ends for the team, losing one, and making no useful contribution to the others. Not a bad start, I think.

While there I got a puncture in one of  Walter's front wheels during the not much more than 30m distance between car and pitch. I took a walker because not knowing how many people would be there I didn't know if getting a seat on one of the various benches would always be easy, and the walker gives me a private one of my own. Probably no need to bother in future, but too much standing about can  trigger the evil nerve pain in my right thigh (long pre-myeloma) and I did feel it trying to start up a couple of times. When that happens the only way to stave it off is to sit down.

I fixed the puncture this afternoon (I hope) - another of those tiny and viciously sharp thorns which was very difficult ro remove from the tyre. But 12" tyres aren't easy and the only way to get the inner tube back inside is with thumbs. I reckon that even with Udderly Smooth to help, I've put my thumb split and a couple of fingers back a fortnight at least. After being so careful to keep them warm with the sheepskin gloves all morning...

25/04/21 Warley Country Park, dex, and bloodstains...

We went to Warley Country Park in Brentwood, although it turned into rather more of an afternoon walk. We've never been there before (opinions differ on this, but I'm sticking to my guns) and we had a lot of trouble finding the right place and parking a short walk from the entrance:

(Photo found online, not one of mine)

Activity target well and truly met. Did the weekly clean of the cat drinking fountain, so  all weekend tasks completed. Also made an 8-hour slow cooker chicken casserole which went down well.

Did the Pill Organisation Thing after dinner because I have a 10:00 appointment in Ongar this morning, which wouldn't leave enough time either after breakfast or before lunch. More about that appointment in the next post, if it works out well.

Dex night tonight. 01:01 and I'm feeling wide awake, although there's nothing too unusual about that, dex or not. It all depends on how I feel in another hour...

Finger splits are fighting back. Despite it being a very warm day, one on my left thumb is opening up again...

Rescue cat Blue wanted some time with me on the bed. She was in a bit of a playful scratchy mood, and got me in the right hand with a claw. I didn't realise I was bleeding until I was back in my study and found blood on a couple of pieces of paper. What I didn't realise (the lights were out) is that I had also left several pound coin size bloodstains on the duvet cover. Thanks to the cat, I'm in the doghouse. I've done what I can to remove them, and won't know how successful I've been until the morning.

23/04/21 (2) Blood test results

The results are good again: Paraproteins still undetectable, Free Light Chains all in normal range, red cells, platelets and some of the white cells below normal but not enough to worry about under the circumstances. After the last couple of months of playing around with the dex and len in the hope of getting a handle on the tiredness/fatigue (not very successful!) it's really good to find we didn't open up a loophole for the beast to come back through.

Inevitably I was a bit too quick to announce victory over the finger splits. A couple have started to open up again today, including the one on the right index fingertip which makes a lot of things rather difficult. I'm applying lots of Udderly Smooth and with luck that will stop them getting any worse. Seems crazy to have to wear gloves outside in these warm temperatures, but maybe that's what I'll have to do for a while longer.

23/04/21 Sausage rolls and finger splits

It's a week since the last blood tests, so my next job is to send the chemo nurses at Springfield the usual email to get the results. 

Today's walk was twice round Oaklands Park (more or less) with coffees and we took this week's processed meat allowance home in the form of a sausage roll. In the afternoon I had to drive Sue to Ongar and back, then it was backgammon time, and there's most of another day gone.

Later this morning Gigaclear are due to arrive to install our new 300 (or possibly 400) mbps fibre connection. Decent internet speeds at last! I'm "Broadband Co-ordinator" for the village, and this has been a long time coming. Hard to remember that when we moved out here nearly nineteen years ago we were stuck on a dial-up connection before getting ADSL broadband, and that was only 2 or 4mbps for a few years.

Otherwise, finger splits doing well The one on top of the knuckle of my right thumb has a few days to go but the others are all healed now. It may not seem much but it makes a huge difference to everyday life and getting things done. It's particularly good that they've healed although I'm back on the dex.

Now I must go and write that email so the nurses see it first thing...

22/04/21 Target missed

Failed to meet my activity target yesterday, mainly because I didn't get out of the house for even a short walk. A combination of unappealing weather (cold biting winds again)  and various jobs to do online. As well as fixing a minor issue with the shower room window.

Finger splits continuing to improve, and the oedema responded well to the Furosemide I took yesterday morning.

21/04/21 The Good Easter ford, duck eggs, and posible good news

We went to a favourite spot, the Good Easter ford, for daily exercise yesterday. This shot is the reverse angle from the standard view which I've posted before. That's Sue sitting on my walker in the middle of the shot. Water level is very low at the moment.

Nothing much myelomatous today. The finger splits are continuing to heal nicely thanks to Udderly Smooth Moisturising Cream. I'm plastering it on my brittle fingernails as well, but no sign of improvement there yet.

MORNING UPDATE: Finger swelling not as marked as it was - rings feel looser and will come off again - just! Took a Furosemide after breakfast as I don't expect to be leaving the house for several hours. Swelling in the ankles and feet also still there, but not as marked as before.

Two beautiful duck eggs ready to be poached for lunch:

After that I may well set out to re-wax my Australian bush hat, which badly needs it.

AFTERNOON UPDATE: Hat re-waxed successfully. Needs a few days resting time than do it again. More to the point, here's something encouraging from the Telegraph. If, of course, it can be taken at face value...

20/04/21 Shopping!

After that very early start we had breakfast at the usual time and after that I headed out do a small food shop at the Marks & Spencer Food Hall in a retail park on our side of Chelmsford. All masked and sanitised it was a bit of a strange experience being in a shop again after a year,  but definitely a big step back towards "normal".

By the afternoon it had warmed up a lot, so I did the replacement of the 4-way Hozelock thing:

It's important to keep on doing small jobs around the house. It keeps you involved and stops you worrying about what may be to come as the disease develops... Live for the day, the future will take care of itself!

No finger split trouble from that, for which I give credit to the warmer temperature and the new moisturising hand cream. I still have one small split at the end of my right index finger but it is getting better and should be gone in a couple of days if I don't knock it back. I've also developed rather brittle fingernails over the last few weeks. There are many possible explanations, including just getting older, and I'm just treating by making sure they get their fair share of the moisturiser. Will mention it to Dr.Ch next time.

The Fybogel did have a small effect, so I'm back to just Senna tonight. It's always a very delicate balance...

Activity targets met by lots of walking between the garage (where the tools etc. are) and the oil tank, which is more or less where the hose fitting is. So no walk yesterday, but we'll try to make up for that later today. I need a good long(ish) one.

Hoping for a bit more sleep tonight. I've had the last dex of the week so should be in with a good chance.

19/04/21 (2) Dex morning

Woke up just after 0500 with that familiar dex feeling. That makes three hours for the night. Not enough sleep and my ring won't be happy about it but that's dex for you. No way back to sleep on a dex morning, so it's Big Bang Theory time again.

There's what looks like freezing fog outside and it may well be worse along the road because I haven't heard anything drive past in the last half hour.

I took the photo with the flash on 'auto' and I think the two bright spots are reflections of the flash in the double glazing. Not some farm vehicle out there at this time in the morning! Nevertheless, looks like White Walker territory from Beyond The Wall out there. It's going to have to warm up a lot before I'm going to be willing to expose my fingers to working outside to replace that four-way hose fitting. I feel a change of plan coming on. Might make some bread instead.

19/04/21 Dex night #2

Went for a morning walk in Leaden Roding woods near the cricket ground. It was rather longer than intended because we got a little lost in the woods, not having been in there since late summer of last year we had forgotten some of the routes and landmarks we learned last year. We found our way out again, but inevitably Sue and I had rather different ideas about how to get there...

Lots of primroses at ground level. The result of the extended walk was to get me well past all my activity targets - my ring reports a bit more than three times over its target for yesterday. Now it'll probably tell me I did too much...

In the afternoon I rewound the three hose reels needed to top up the big pond. One of them jammed solid so I had to take it apart to find and fix the problem. None of that was good for my hands and I do appear to have started one new finger split on the right index as well as getting some nasty abrasions on a knuckle of my left middle finger. It's all to do with steroid induced skin thinning, I think. But the new hand moisturiser is by some distance the best I've come across, and I've made liberal use of it in the hope of stopping the new split before it develops.

Slept well last night despite the dex, and hoping for the same tonight.

After just one night of dex there are signs of the constipation problem coming back. I've taken a Fybogel on top of the usual Senna in the hope of being a bit more proactive than in the past and getting ahead of the game before it develops any further. I'll do anything to avoid getting to the glycerine suppository stage again, although I'm armed and ready if it should come to that... Laxido tonight if there's any hint of a need for it.

Two more possible issues. My fingernails have become rather brittle - many possible explanations for that, and my blood pressure readings have gone a bit higher and more erratic recently. I think it's time to contact my GP to talk about going back onto low dose Felodipine to bring it back under control. It all seemed to go a bit erratic after the beta blocker propranolol a while ago,

18/04/21 The return of Dex Nights

Quite an eventful day yesterday. Sue was out in the morning so I had the pond man back to my (socially distance) self. To cut things short we found the extremely unlikely problem and a fix, although it's rather more what I might call a temporary bodge. But if it fails again, I now know what to do. He also gave us a new anti-heron pond net so had to remove and dismantle the old heron defences, which was no small job. I think it's just repeating a mistake we've made before, but we shall see...

I then decided the big pond at the end of the garden needed topping up. Although this involves three hose reels end-to-end the insides were still very cold and stiff and to make it worse, there is now a serious leak at the 4-way hose fitting outside the bathroom window. So I had a hell of a game swapping incompatible hose fittings around until I got a working and 99.9% leak-proof connection direct to the outside tap. I've got a new 4-way thing in the garage, but I've ben waiting for warmer weather before removing the old one and replacing it. What has all this to do with myeloma? It comes back to those finger splits and I thought I was really going to lose progress on them. I could have put more cream on them, but it's hard to work with hands covered in slippery gunk. But they don't seem to have suffered so far although I'll know more in the morning.

I made some "hard" butter this morning (slightly salting it because with all the business with the pond man at the same time I forgot I wasn't making the spreadable version) and gave the cat fountain its weekly clean - the easy way in the dishwasher, apart from the pump which has to be taken apart to be cleaned up. More fiddly work that isn't great for the fingers.

And then there was Prince Philip's funeral to watch. I'm no great fan of monarchy (although it may well be the least worst of the alternatives) but it's impossible not to respect what the man did or not to feel strongly for the Queen. As for the prospect of my near-contemporary Charles (just four days separate us) getting ever closer to the throne, I can't say I'm exactly enthusiastic...

Walking many times the length of the garden got me to a little over double my activity target  without going out for a walk. Much easier to do that now things are drying out and warmer, so you don't get shoes covered in mud and worm casts and can sit for a while to admire the view. During all that I noticed that our horse chestnut (always severely pruned to stop it taking over) is coming back to life after the winter:

Now it's the first dex night for a while. I didn't fall asleep during the evening (which is unusual), and at 01:22 I feel perfectly wide awake. I think it might be a late night. Fortunately I've still got quite a few episodes of The Big Bang Theory to finish off.

17/04/21 Udderly Smooth, and Dex

To Springfield yesterday morning for bloods and the next cycle's meds. The insertion of the needle was as painless as I've ever known - I honestly think that if I hadn't been looking I wouldn't have known the needle had gone in. And now I have as big and ugly a bruise in my left elbos as I've ever had. Strange...

Also had the monthly COVID swab as well. And one of the nurses suggested something new for my finger splits:

Udderly Smooth. It's certainly the least greasy and most quickly absorbed of all the things I've tried. Too early yet to know if it works any better.

Stopped for a shortish walk (with stick only) in Tower Gardens and Admiral's Park on the way home. The Parks & Gardens people have done some very colourful planting this spring:

The reason it was a shortish walk is that Sue was going out in the afternoon and the pond people were expected to come. It was supposed to be Saturday but they rang in the morning to say it would be Friday. Needless to say they didn't arrive and in the evening we had a 'phone call (stuck in traffic, etc. etc.) to say it would be Saturday after all.  Sue's out in the morning so I'll have to stay in. The best thing about that is that it will be a perfect opportunity for a Furosemide (diuretic) pill.  I should be able to get out for a decent length walk in the afternoon, once the effects have worn off.

Today's activity target of 400 (arbitrary units) just met with a score of 402. At one level I dislike and reject these targets, but on another level they give me a bit of discipline about regular exercise and there is a distinct pleasure in beating the target. Even if only by 2.

Instead of Wednesday and Thursday for dex I've decided on Saturday and Sunday mornings. That gets me started later today, and it should be easy to remember dex on weekend mornings.

16/04/21 Lateral Flow tests

Not much myelomatous to write about tonight. Going to Springfield later for what the Americans would call a blood draw and to collect the meds for the next cycle. That will include some dex to put me back on the standard len/dex treatment and TBH I'll be glad of that even though it may lead to more dex nights, the return of the constipation, and etc.. I'll cope with all of those for the sake of being on the best treatment for the current state of the disease. We didn't find much about the cause of the excessive sleepiness, so that's just another of the things I'll have to live with.

No change on the finger splits. 

On other matters, my first set of free COVID lateral flow tests arrived in yesterday's post. I've had the swabs done professionally nine times now, so I know what it should feel like in the back of the throat and up the nose. Sue decided she wanted the tests as well, so as I was close to Writtle anyway this afternoon (last-ditch attempt to solve The Lawnmower Problem and if I haven't written about that before I'm not going to do it now) so I went to the pharmacy there and picked up a kit for her, combining it with enough of a walk to get well past my Activity targets. Good to be able to go into a shop again, even if it means using a face mask and checking to be sure there isn't another customer in there first.

I'm taking up this offer of free COVID tests because, having a compromised immune system because of the myeloma, the sooner I detect COVID in my system (should it ever get there), the better.

We've been wondering why each box contains seven test kits. I now have the answer: 2 tests a week for 3 weeks = 6 plus 1 "spare". Why they didn't go for the more obvious 4 weeks, I have no idea.

15/04/21 FeedBurner, Maldon, failure

First, for anyone who accesses this blog with Google's FeedBurner (and I don't think there is anyone), Google have announced that it will be discontinued from July 2021. You'll have to find another way.

It was a pleasant warm morning so we went to Promenade Park in Maldon for the first time in quite a while. It had become such a popular "exercise" destination earlier in lockdown that the local council had to take the unusual step of banning visitors from outside the town. The weather got cloudier and colder as we got close to the coast, and  by the time we finished lunch a biting cold wind had sprung up and we were forced to cut the walk short and retreat to the car. As a result, I achieved only about three-quarters of my activity target. First time I've fallen short since I got the  health-monitoring ring.

For lunch we avoided the temptation of the excellent sausage rolls at the cafe and had a beef slice (Sue) and a chicken & mushroom slice (me). I'm no healthy eating fanatic, either normally or since the myeloma struck, but last week had three lots of processed meat (sausage rolls for lunch twice, and sausages for an evening meal because we couldn't get the pork loin steaks that we wanted from Tesco's home delivery. So this has to be a week (at least) off. No sausages, no bacon.

Thames wherries at Maldon Quay. Some of them are converted into floating restaurants, others do tourist trips, and a very few are still working boats:

Looking in the other direction from the cafe, interesting sky as the cold wind  blew up:

The end-of-finger (and thumb) splits have continued to improve, but of course that's not the end of it. I now have a modest collection of new splits on the sides of my fingers. This one is on the second knuckle of my right middle finger. It has an impact way beyond its size!

13/04/21 Oral surgeon

 For once, I'm writing a post on the day it applies to...

Went to Broomfield Hospital this morning for my appointment with the oral surgeon. Result - that patch of exposed bone is no longer there. The gum has grown back over it all by itself. I'm not too surprised at that piece of good news because it has been pain-free for quite a while. Nothing more to do except a review appointment in a year's time. Then took the car to the car-wash (badly needed, covered in red Saharan dust) and filled it up before going home and making American-style scrambled eggs for lunch. Almost as good as my usual Gordon Ramsay style, but the washing up is much easier.

Walked the triangle in the afternoon and easily met the day's target.

13/04/21 Dex is coming back

I had the monthly 'phone consultation with Dr.Ch yesterday morning. After the less than successful experiment to determine the cause of the tiredness / fatigue / whatever, I'm going back onto dex with the next cycle which starts on Friday. As len/dex is the standard treatment for my stage of the disease, I'm happy with that. Also having the next set of bloods taken on Friday, so that'll start off the nervous wait for the results again.

Finger splits still improving, and for the first time in quite a while I'm able to type normally (which is not with all fingers, but most of them).

Pond problem not solved yet. Awaiting delivery of yet another new ballast to our pond people, and then for them to fix another time to come and see if that works. And I now have another electrical problem with a lawnmower I haven't used for two years... There's no end to the troubles, but they give me something to do..

Yesterday's walk was down Pepper's Green Lane, and it got me up to my targets for the day. I took some photos.

Farm cottages near the end of the Lane:

I like the way this house sits in its grounds at end of the Lane. The Essex Way is just visible on the right.

Spring!

11/04/21 Little change

Another day spent at home, mainly because of the pond people who came to sort out the problem with the UV lamp in the filter. I won't go into the details but it's still unsorted although we have a plan in place. 

Because I was inside most of the day, the finger splits have continued to improve. The oedema, however, doesn't.  Fingers swollen enough that getting my sensor ring off to put it in the charger was really hard. That one used to be almost too loose. I need regular Furosemide daily or every other day for a while, but it just hasn't fitted into the schedule recently.

10/04/21 Braintree and Bocking, and weight

Finger splits better, and only one of them still giving much trouble. The others have improved faster than expected, and the trick will be not to set them back again.

We went to Braintree & Bocking Gardens for a shortish walk (and the inevitable coffees). Sunny, and with an air of increasing normality about it, but still a cold wind. I had to go back to the car because I forgot gloves the first  time.

Activity targets for the day met - but only just. I should aim to do better over the w/end.

First day of the current cycle with no Lenalidomide (and no dex, of course). Next week I expect to be back on both.

Had quite a bad crash after dinner - kept falling asleep, no energy to do anything except read, and stayed downstairs with Sue's choice of television rather than coming upstairs to the computers and my TV. Probably due to a number of things going on that I haven't written about because they have no connection at all to my myeloma, but they've consumed a lot of time and effort over the last week but now most of them are sorted or starting to be resolved. So pressure off (well, some of it) and maybe I was just reacting to that.

Fingers (also feet and ankles) still quite swollen, I probably should go on to regular alternate-day Furosemide and damn the consequences for walks etc.. It worked last time. Also, I've put on too much weight over the last week or three. Some of it must be fluid retention but I need to pay more attention to portion sizes and snacks between meals...

09/04/21 Finger splits and a good long walk

A rather warmer day and I did no work outside, but I've gained another finger split anyway. How can such small things be so painful? I have four on my right hand (thumb, index, middle, and little fingers) and am reduced to typing with just one finger on that side of the keyboard. Mouse handling is well below standard as well.

 

At last had the good walk I've been wanting. Up the main road to the church, then off into the fields on the left, and well over 7000 steps so targets easily met. I used my sheepskin gloves to keep the fingers warm...

Today is week 4 of the current cycle, which means no Lenalidomide for seven days. I'll be watching myself closely for any changes. Dr.Ch (haematologist) seems a little surprised that I don't feel different (or even better) during the fourth weeks. And after that, if things go according to plan, I'll be back on the dex.

08/04/21 Repeat

See previous post - very much the same, except no Furosemide. The problem of the UV lamp in the pond filter remains unsolved despite replacing the entire electrical system and fitting a  brand new lamp. It's probably something so blindingly simple that I just can't see it. Anyway, we've called in professional pond people who will be coming on Saturday if I haven't fixed it first.

Targets met, splits not started healing yet (a few days not working outside in this bitter cold will help), bowels pretty good, oedema slightly improved but there's some way still to go. Another Furosemide day coming, I think, as I don't need to go out until I head out for a walk (I hope) in the afternoon by which time the worst of the effect should have worn off.

07/03/21 Heron

Another bitterly cold day, although bright and sunny in the morning. Nothing new - day dominated by the continuing pond problems and the possible return of the heron despite the new defences. Beautiful birds with wonderful eyesight and memory for ponds and rivers in their territory, but a major pain for fish-keepers.

Took another Furosemide (diuretic) this morning, which obviously limited opportunities for going out until the effect wore off, by which time it was too close to online backgammon time. Targets met anyway. But it's several days since I had a decent walk so that's a priority for later today.

06/04/21 UV and t-shirt

Yesterday was another in the long list of days that didn't work out as intended. It's that UV lamp in the filter for the small pond again. Two trips to the nearest pond shop (near Ongar) where we also acquired two new fish and a waterlily. Far too much fiddly work in low temperatures, followed by rebuilding the heron defences. The finger splits did not appreciate!

No walk again yesterday, but all the other stuff led to me comfortably beating my activity target. And I hear from muscles4myeloma that a commemorative t-shirt will arrive in the post in a few weeks time. It's good to have things to look forward to...

On other matters, it's as if my whole system was de-stabilised by those beta blockers I took for a while in the hope of controlling the tremors. Perhaps the most obvious example is the constipation issue. I haven't taken Fybogel or Laxido for weeks, and I'm down to Senna about three times a week rather than daily. Nothing has changed in terms of diet etc. to explain this. The oedema is back - that's supposed to be a side-effect of the steroids but I've been off dex for a few months now. It doesn't make a lot of sense.

04/04/21 (2) Finger splits return, and Muscles4Myeloma results

I knew it. One new thumb split (left), one new fingertip one, and the ones on the outsides of the little fingers both opened up again. There are words for how I feel about that and the circumstances that brought it about, but they're not suitable for a wholesome family-friendly blog like this one. I'm not looking forward to another couple of weeks trying to get these ones to heal. I think I'd better arrange to be out the next time those gardeners come...

Did a bit more work on it today and established where the problem is, which is going to mean replacing the whole unit plus electrics that holds the UV lamp. Not a bad price from Amazon, fortunately.

We had a walk along the farm track almost opposite the house and then to Brickhouse Farm and back along the road.  It looks as if things are drying out quite nicely, so the walks across fields and along field edges should become accessible again, which is something to look forward to.

Lunch was a roast chicken take-away from a pub in Fyfield, and apple crumble. Unfortunately the chicken was seriously overdone but the rest was good. Portion sizes far too big - we had more of it for dinner and the dessert for a late supper, and still had a lot to throw out.

I have to retract something I wrote earlier about Muscles4Myeloma. Full results are now out, including:

I come somewhere around the middle.

04/04/21

Yesterday did not go quite as planned. Started by making a couple of tubs of "spreadable" butter and doing the weekly clean of the cat drinking fountain. While I was doing that our gardeners arrived to do the annual clean-out of the small fishpond near the house. I decided to be helpful by dis-assembling part of the filter to remove the old UV lamp and clean up the overgrown glass test-tube that the lamp sits inside, protected from the water flow that it's supposed to clean up. I told them what I'd done, showed them where the bits were, and assumed that I didn't have to spell absolutely everything out for obviously pond-competent people.

They did a good job on cleaning out the pond, they turned all the electrics back on, they packed up, they left. Half an hour later we went out  to have a look, and I found the test-tube thing still sitting where I'd left it. Water had been flowing directly over the new UV lamp and into the electrics behind it. Needless to say, lamp not working. 

I'll spare you the details. They involved a hair dryer, a couple of phone calls, and the purchase of a spare part from Amazon that we hope to be able to return un-used. And - here I finally get to the point - a lot of fiddly work in cold temperatures that I couldn't do with gloves. I fear I have at least one finger split opening up again, and the right thumb one isn't looking too good. Later today I have more to do - checking the power supply, maybe taking things apart again to double-check that the new lamp is inserted properly. And re-building the anti-heron defences that we had to take down so as to let the men in to work on the pond. All in weather that is likely to be finger-splittingly cold again.

The myelomatous moral, if there is one, is that you can't avoid "normal life". At least, not at the stage I'm at. One way or another you have to find ways to cope, even at risk of opening those infernal splits again. At least doing all that met my activity targets, even though I never made it out for a walk.

Stock photo, but nice-looking cat.

03/04/21

A cold day yesterday with a biting wind all morning. It improved a little in the afternoon so I took the opportunity of a quick walk up to Peppers Green Lane (with sheepskin gloves). Slightly surprisingly no new finger splits have appeared, although the thumb one is healing only very slowly. As I know from long experience, it's very easy to knock them right back again at this stage. Dealing with three pill boxes and all those blister packs on Sunday could easily be enough. It was last week.

Otherwise, it was the quiet day I had planned and felt I needed.

A little annoyed with the people behind Muscles4Myeloma. It ended with the end of last month, but not a thing heard from them. It's as if the organisers lost all interest.

02/04/21

Busy day yesterday. Started by getting up early (by my standards) to book an Early Bird ticket for the Writtle Jazz Festival in August. Then I made some butter and a loaf of soda bread using the buttermilk from the butter-making. After that I assembled the new footstool I had to get from Up The Jungle (one of the castors on the old one broke a day or two ago). I need the footstool to keep my legs elevated as much as possible to help the oedema. After lunch, did the triangle walk then fell so thoroughly asleep that I was the best part of ten minutes late for online backgammon. Disgraceful!

The pain I get from what, as far as my doctors have been able to determine, is a trapped nerve in my right thigh was bad this morning (BTW, it goes back some thirty-five years, way before myeloma). Standing in pretty much the same place for too long, as when cooking, often triggers it and today it was like red hot knives stabbing into my leg. Not fun at all.  I take 40mg of Amitriptyline a day to keep on top of it, but that had no impact at all this time. On top of that I've got some sort of muscular problem just above my right hip, and both knees are giving trouble which seems to relate to twinges in the tendons behind the knee. Coping with that lot may explain the all-out collapse I had after getting home from the exercise. Even walking around the house has been slow and troublesome. But all things pass, and this probably will by tomorrow. It just takes up metabolic energy that I'd rather use to keep the myeloma at bay. On the other hand, the finger splits have continued to improve. The bad one on the end of my right thumb is a little better, and that's after going out for my walk on a much cooler day without even thinking about taking a pair of gloves with me.

UPDATE: The various aches and pains are better today and I'm awarding myself a very quiet day. It's a lot colder after that three-day heatwave, just right for opening up some more finger splits. Going to have some lunch now, then maybe a short walk (with gloves) before tea and backgammon.

01/04/21 Pfizer II and Ongar

 Good walk yesterday morning on a route that Sue discovered recently round the back of Ongar High Street on the eastern side. First stop for coffee here:

 

Note the date of the building - 1642. 

On to the walk proper. Photo taken by Sue on her earlier solo exploration:

At the end of the walk near the Library we found a Boules pitch, or whatever you call it:

One member of the local club was practicing while waiting for some friends to turn up and give him a game. He had a purpose-made magnet on a string which he used to pick up his balls (boules?) without having to bend down. I might almost be tempted...

That walk gave me a few thousand steps (my phone, my watch, Google Fit, Samsung Health, and Move Spring all give different results!), so the Muscles4Myeloma "challenge" is now over and done with, for whatever that may be worth. I'll continue just the same...

And then off to our second Pfizer injections. Afterwards I felt a slight heaviness in the left (injection) arm for a few minutes, and then a very slight muzzy light-headed feeling that passed in a few minutes. Nothing at the injection site itself, but that may develop later. I'm just very glad to have it done, and it was ten weeks since the first one.

Alarms are set to wake me up to be online by 08:00 to book an Early Bird ticket for the Writtle Jazz Festival on August 8th. We'll see how things go on as we emerge (we hope) from the COVID nightmare, but I'm thinking of that as my first big step back to normality and lots of live music. Quite a lot of the time will be outside, and the two stages will be in marquees that will have plenty of ventilation. In September I have a ticket (postponed from last year) for Tannhauser at Saffron Hall. That - assuming it goes ahead - will mean more people in close proximity and rather less ventilation. We'll see. Maybe we'll have to produce vaccination certificates by then...