31/01/22 More of the same

At risk of repeating myself to the point of tedium, no change. No going out. If anything, getting upstairs seems harder than ever - possibly some muscle weakness developing in my right ("good") leg? I hope not...

30/01/22 Recovering and rebuilding?

 

.The grab handle worked -once I found the backing cards that had to be peeled off the suckers. No tabs, no "Peel here" message, and no mention in what passes for the instructions. All credit to Sue for figuring that out before I did.

Nothing else to say. I spent most of the morning asleep downstairs - (hopefully) giving my body time to recover and rebuild. If that's right, it's v--e--r--y long process.

29/01/22 Grab handle

Again, the plan failed. We decided there wasn't quite enough time to fit a Hare breakfast in, and that the pre4scritions can wait until Monday. So we just collected my new glasses and had a coffee and a millionaire's shortbread sitting outside a coffee shop instead. Put together that was quite enough walking for me - completely exhausted when we got back home,

In other exciting news, a suction-operated grab handle for the shower arrived. I haven't fitted it yet. Otherwise, still little or no change.

28/01/22 Bench

Forecast for yesterday was good so the plan was to put the wheelchair in the car and go off to find a bench close to a car park and sit in the sun for a picnic lunch. However, the sun failed to cooperate so it was another dy stuck inside... Later this morning we have to collect prescriptions, collect my new glasses from Specsavers, have a late breakfast in The Hare, and then try that park bench plan again.

Maybe even a very short walk, or more likely a shuffle. After more than a fortnight of this, I'm feeling badly short of exercise as well as fresh air and sunlight.

27/01/22 Stairlift ordered

No change on the things you know about, just counting the days to that neurology appointment and hoping it will come up with something.

Otherwise, we had a stairlift man round and have ordered a new one to be installed at the end of next week. We had one before after my Achilles tendon surgery in 2014, but got rid of it when we re-carpeted.

26/01/22 At last...

 ... something a bit more positive to write about.  I 'phoned AXA to get authorisation for a neurology appointment plus diagnostic tests etc., losing no opportunity to point out that as I'm no longer on Lenalidomide they'll be laying out some £4,000 a month less than before. After sorting that out I called Springfield and got the first available neurology appointment on Feb 8th.

Getting out of chairs has become so difficult that I ordered a new powered riser/recliner to replace my armchair downstairs.

It makes things much easier and must be OK because rescue cat Blue has gone to sleep on it for the night.

Last night was the 25th - Burns Night, so we did the right and proper thing, even though the haggis was from M&S. Delicious, anyway:

25/01/22 Little change.

Very little change today and what little there is goes backwards as much as forwards, My unofficial medical adviser says I should see a neurologist as soon as possible so I'm off to write an email to the team at Springfield about exactly that.

24/01/22 Outside

 Quite a demanding day by current standards. My car threw up a tyre pressure warning last time we were out so I had to teach Sue to use the rechargeable inflator, which she coped with very well. Then we had to adjust the timer that works the light in the side passage. Only a small job, but all jobs are difficult for me at this stage.

Then I completed the setup of my Careline GPS alarm and that involved testing from the furthest point of my property, which is the end of the back garden. That was the longest walk I've done for a shamefully long time, and I paid a price for it in low back pain afterwards. Not to mention exhaustion.  Anyway it works, and it's just survived its first soaking in the shower. All the LEDs are flashing as they're supposed to.

The downside of all this outside activity in the cold is that I think I've opened up a couple of right hand finger splits again. With my left hand badly affected by PN I really don't need problems with my"good" hand. Lots of hand cream an the cotton gloves again tonight.

23/01/22 Temperature sensing

Slight improvement in walking today. Otherwise much the same apart from this which has developed over the last few days:

My left hand is the one with the PN symptoms -  numbness, slight tingling, weakness - and the right hand is 95% ok, just hints of those. If I hold my left hand under running water from a hot tap it feels hot as you would expect, but if I hold my right hand in the same flow of hot water it feels only lukewarm. Very strange, and I haven't read about anything like it. Do I need  neurologist to look at this? Have emailed the team about it.

Here's today's Picture Quiz of the Day. What's this? I've got one and I'm fi#nding it very useful...

21/01/22 5%

 About a 5% improvement yesterday, so I'm hoping things have hit bottom and are at last starting to go in the right direction. Walking and balance improved, although drying off after the shower is still a rather scary business. But still a long way away from things like going out for walks. Went to Springfield yesterday (Sue kindly drove) for the routine bloods and meds, And that was quite enough.

Pleased with myself for achieving a repair of the switch mechanism in the shower room extractor fan. A fiddly job at he best of times and made harder by the lack of touch in my left hand.

Water retention again - ankle oedema and hard to get my Oura ring off to recharge. That's the one with all the sensors. Furosemide time again, I think.

20/01/22 No change

Another day much like yesterday, except that no wheelchairs arrived. And that's all. An early night for me, I think.    

Back to typing with right hand only...

19/01/22 One step forwards, two steps back...

Worst day of the myeloma experience so far. Gone backwards on all the progress of the last few days - walking terrible, the shower not something I'd like to repeat although I shall have to. Left shoulder mobility has gone back again. All a bit depressing, must just hope for better things after a night's sleep.

Two new acquisitions arrived today: a careline GPS alarm with automatic fall detection. This onew works anywhere with a mobile signal, not just in and around the house:

and this in lightweight aluminium:

Already proved itself useful for getting to low-level cupboards etc. and will be good outside as well when the weather improves... As for the price, it works out at about 12 weeks of Red Cross hire for a much nicer chair. A bargain in my book to have my own.

18/01/22 Hook

Nothing else today. Possibly a very slight improvement all round, but a localised pain spot in left low back. It's between pelvis and base of rib cage. Applying ibuprofen gel.

It's clear to me that this recovery is going to be a long slow process...

New button hook from Amazon definitely helps.

17/01/22 (2) Off treatment

Here's a summary of today's 'phone consultation with Dr.Ch, while it's still fresh in my mind:

Break from treatment  for three months. This will give time for body to recover from two and a bit years of being hammered with potent drugs. So I stop both Lenalidomide (never again - AXA PPP will be delighted!) and Dexamethasone. Hopefully it might do something for the fatigue and falling asleep all the time as well

Continue with Rivaroxaban, Omeprazole, Aciclovir, Co-Trimoxazole.

"Watch & Wait", continuing with monitoring bloods four-weekly.

Next step will be second line DVD - Daratumumab, Velcade, Dex.

Thinking of second line is a little scary. While you're no further than first line you can imagine it stretching on indefinitely, but when  you see the next stage coming you have to realise that you're on a progression through second and third and fourth... and that sooner or later you're going to run out of new ones.

17/01/22 Shoulder

Possibly a very slight improvement over yesterday, but but certainly nothing to get excited about. A bit more mobility in the left shoulder is the main gain. Sue tells me that my walking still looks extremely weird although it feels better to me. 

I bought a booster cushion from Amazon for my armchair downstairs. It gives another couple of inches height and that's enough to make getting out a good deal easier. Well, less difficult. Another couple of things will arrive later tomorrow, this time from the Complete Care Shop and Careline.

I have a 'phone consultation with Dr.Ch at 12:30 and no doubt will have more to say after that. At the moment I have no idea what the way forward will be after this. I doubt that a further reduction in my Len dose will be enough. 

16/01/22 The NHS and the three-boule problem

A very slight improvement in walking and getting out of chairs yesterday evening. I suppose it's largely a matter of waiting for the remains of the Len to flush out of my system. Made it up the stairs with alternate legs (plus handholds both sides) - I haven't been able to do alternate legs for quite some time. That suggests strength is returning as well as better balance.

Looking back I think I missed a couple of early signs. One was a gradual reduction in my comfortable walking distance, the other was that when I tried to hold three boules in my non-playing hand, one of them would slip out. Normally I do that with no difficulty.

All credit to the NHS for my care and treatment during my hospital stay. As usual, the sharp end of the service is first-class (and I had all those tests without having to pay a penny for them). It's the admin side where the problems are, although it ran pretty smoothly on this occasion.

15/01/22 Not a stroke

An interesting few days... Four or five days ago, with what I thought (and still suspect) are peripheral neuropathy symptoms, my walking became as bad as it's ever been. Getting out of a chair is a real struggle, and I can't even cross a room without a stick for stability. In the early stages of this I emailed Dr.Ch to ask if I should seek an appointment with my GP or wait until our next (phone) consultation on the 17th. Unfortunately I didn't get a reply and on Wednesday 12th booked a GP appointment for the afternoon (and after a Specsavers eye test in the morning). Not quite sure what magic button I pressed to get a face-to-face so quickly apart from emphasising that I'm a blood cancer patient, but it worked.

He said he didn't know anything about PN except in the context of diabetes - honest, if not exactly helpful.Instead he concentrated on the muscle weakness "in all the diodes down my left hand side" as Marvin the Paranoid Android wold have put it. He raised the possibility of a mini-stroke and sent me off to A&E with a letter to get it checked out. I had a CT scan and bloods to check for infections, and the stroke consultant and his colleagues seemed convinced by the mini-stroke idea. They kept me in for an MRI and Doppler ultrasound next day. I approached the MRI with some trepidation as I had to abort the last one for a combination of unexpected claustrophobia and inability to suppress my neck twitches. The new machine is much better - the tunnel is wider and shorter, the hammering sound is still there but softer easier to stand, and there are visuals to look at. I got a South Seas beach scene with palm trees and coconuts falling off them to watch and count.

When the report came in a few hours later they had found no trace of a stroke and decided to put all the blame on side-effects of Lenalidomide. Luckily I'm on my week off Len but I had a message from my haematologist saying don't take any more Lenalidomide! He will be reviewing my case over the next few days before the next consultation on the 17th,

I'm hoping for improvement but little sign of it yet. Still a lot of numbness in my left hand, walking very slow and unstable, and getting out of chairs is a real struggle.

14/01/22 More tomorrow

There's a lot to write about (I've been in hospital the last couple of days with a suspected stroke). Back home now and heading for a much needed early night.

Read all about it in the next post...

12/01/22 4th vaccination

Low back still really bad, with consequent effects on walking and activity target... It should start improving over the next day or two - if not I'll have to think about an osteopath appointment. And speaking of appointments, I have a routine eye test at Specsavers later. I expect that will lead to new varifocals - I'm sure my close vision has changed quite a bit since last time.

Finally got my fourth COVID vaccination last night (Pfizer again, and no reaction at all).

That's all for tonight. Going to try get to bed half an hour earlier than usual.

11/01/22 Mini-rashes, bad back

Mini-rashes are back - I've got one on the top of my left foot, 4 or 5mm across.

Really bad low back today for some reason. Can't bend... Haven't been like this for years.

Took a Laxido as well as the usual senna last night. It was meant to be a Fybogel but the sachets got confused.

Evidence continues to support the amitriptyline hypothesis about PN.

Because of the bad back I never got out of the house for exercise yesterday, so failed to hit my activity target. Can't be helped, just hoping to be a bit better in the morning. I have applied a generous spray of Universal Panacea.

10/01/22 Even more improvements and a PN idea

Did the short walk to Central Park Cafe and had an entirely shameful sausage roll for lunch. Too much processed meat for this week, but I did enjoy it... And comfortably beat the day's activity target.

I take 40mg amitriptyline daily for nerve pain in my right thigh which goes way back before myeloma. And I gave myself a few days off it because  my prescriptions got into a bit of a tangle over the holidays and I ran out. I thought I'd take a break from it to see if that had any effect on the thigh problem (it didn't). But that's a pretty se match to when the putative PN appeared, and now that I've been back on the amitriptyline is back it's been getting a bit better. And reading up shows that amitriptyline is a standard treatment for PN. The snag is that 40mg is as high as you can go before amitriptyline starts acting differently (e.g. as an anti-depressant, which I don't think I need). Anyway, I think that story confirms that I am dealing with early PN rather than nerve compression issues from the neck and shoulder (the one I broke back in 2017)..

09/01/22 More improvements

 5% improvement on most things again, the downside being that the potential left hand pN, although very mild, seems to be spreading towards the thumb side of the hand. Have emailed Dr.Ch to ask if I should go for a GP appointment snd to get his support if I have to fight my way past the receptionists. Everythijng I read about PN stresses the importance of early treatment.

Went to The Hare for breakfast:

and spent the rest of the morning and most of the afternoon sleeping it off. But I didn't fall asleep in the evening at all, which I think indicates that the body had enough time to process the day's len and dex.

I had Eggs Benedict plus a local sausage and various bits passed over from Sue's "small" English. Not something we do very often, but most enjoyable when we do.

08/01/22 Improvements

 A 5% improvement or so all round - definitely feels as if I'm over some sort of hump. Balance, walking, head movement all better.

On the other hand, some slight discomfort in the left shoulder and along the bit between neck and shoulder joint. The biceps feels as if I've got a little tear in there somewhere - but if I have, I have no idea how I did it. Just hoping for more improvement later today.

Ankle oedema is down after a Furosemide yesterday. Hard to get the balance right on this.

OTOH the fatigue has been at its worst the last few days. Sit down, fall asleep. Wake up, can't get out of chair, fall asleep  again. Understandably it's driving Sue up the wall. Must chase that CPAP machine up again next week...

07/01/22 Left arm

Ankle oedema is up again but I'm not planning on going anywhere later today (got to stay in for window cleaner, Tesco delivery, etc..) so should be a good day for a Furosemide.

A few mini-rashes are back.

The left arm is a problem. The fingers tick most of the boxes for early PN. Higher up it's completely different. I have the chronic stiffness etc. from the neck along to the point of the shoulder, and then there is a big loss of mobility at the shoulder joint - it's very much like the recovery period from when I broke it back in 2017. In fact I've started doing some of the physio exercises I had back then to mobilise the joint - but very gently. Between shoulder and wrist the arm is very weak and I find myself avoiding using it so it just hangs there like a dead fish. I'm typing this 95% right hand only because the left hand just doesn't want to get involved. I'm wondering whether just the colder weather has set something off in that old injury...

Good news about the th COVID vaccination - thanks to our Practice Manager both Sue and I have appointments on the11th.

06/01/21 Good results, bad days

Not the best couple of days. But first, the good news.  Blood test results from just before Christmas are good - paraproteins still zero ad light chains all normal. And I fInally have the full FISH (genetics) report from my bone marrow biopsy two years ago. 

Basically that means I have just the one myeloma mutation that we know about already, and I don't have any of the other common ones. That may go some way to explain why my myeloma seems rather less aggressive than many others.

The last two days have been perhaps the worst since this all began. I've been all wrong both physically and for fatigue or whatever you call falling asleep all the time. I've done little else although I  did force myself up to Peppers Green Lane to just meet my activity target. But it seemed like hard work.

I have what may be early symptoms of PN (Peripheral Neuropathy) in my left hand - at least the symptoms tick nearly  all of the boxes. On the other hand, nerve compression from my chronically stiff and sore neck and left shoulder might explain equally well - and that has been really bad recently. The left shoulder is the one I broke back in 2017, and mobility there isn't as good as it was just a week or two ago - I can't get my left arm as high over my head as the other one, and I used to be able too.

All very confusing, and I'm hoping that a decent night's sleep will bring some clarity tomorrow. In the meantime it's been very cold again and my hands hate the cold these days. Just a minute or two of exposure brings on raw chapped skin and the chance of smother finger split or two...

05/01/22 Zzzzz.........

Fell asleep in the early hours of this morning without getting any further than the date for this post. More later...

04/01/22 Hanbury Clubhouse

I forgot that yesterday (Monday)  was a Bank Holiday, so no visit to the GP surgery. That will have wait until later today.

Played boules at Epping yesterday morning. Not at my best - won one, lost one, lost the decider. But at last got a chance for some interior photos of the Hanbury Clubhouse:

Not perhaps quite as fine as I'd been told, but very pleasant anyway..

That helped me reach my high activity target. Nothing else new tonight.

More or less a year ago I set myself some criteria for returning to live music: a vaccine proven to be effective in the immune-compromised, and two different treatments for COVID-19 infection. We are pretty much there, although the underlying assumptions have changed a bit - I didn't foresee anything as infectious as Omicron. There's no really good reason  to avoid going to somewhere that has top-quality anti-COVID measures in place, as several nearby jazz clubs do, but I'm still very reluctant to take that first step back towards normality. The great singer and my friend Sara Dowling is at Fleece Jazz (Stoke-by-Nayland) on the 12th - will I have the guts to go and support her?

03/01/22 Maldon, butter

 A rather cooler and windier morning but we set off anyway for a walk and lunch in Maldon's Promenade Park. For once the tide was high when we arrived, and it always looks at its best with plenty of water in covering the acres of mudflats.

(photo by Sue, taken from her Facebook page)

Perhaps fortunately for the weekly processed meat allowance, ourv favourite cafe wqas out of sausage rolls so we shared a Steak Bake between us. The sun came through and there were more people in the park than we've ever seen there, even in the height of summer.

After getting home I made two batches of butter - one "hard" and unsalted and mainly for cooking, the other "spreadable" and lightly salted for toast, sandwiches, etc.. And did the weekly clean of the cats' drinking fountain as well as cooking the house speciality dinner of pork loin in apple sauce with mashed potato left over from Tesco's Christmas vegetable box.

Why can't I persuade anybody else to make their own butter? It's simple, satisfying, and you know what's gone into it. All you need is a food processor. Give it a try!

On the Myeloma front, welcomed a new Admin to the Facebook Myeloma Support UK group to bring our numbers up to five again after one quit (his wife, the myeloma patient, died recently - but from COVID not nine years of myeloma). Nothing else new. I dropped the nightly Senna b3ecaus3 of the good chance of boules at Epping laterb this morning. It's a tactic that has worked OK so far. After that I have a prescription or two to collect from the GP surgery - must admit to having slightly lost track of things over the holiday period. And regular online backgammon with my unofficial medical adviser will resume after a a break for the holiday period.

02/01/22 Morning after

Because I was leaving after breakfast for boules at Birchanger, Sue nobly did some dusting in my study - not one of her usual household jobs. This resulted in nearly knocking the BT router off the back of the computer desk, and losing my computer glasses... I found them later, but not before having to move the desk out of position to get behind it, which is no small task. But I've got the glasses back, which is the main thing.

The observant will note Act One of La boheme on the TV (left side).

Boules at Birchanger was the annual New Year's Day "Morning After Plate". Saturday is my usual sacred non-boules day reserved for other things but I got a special dispensation from Sue in return for not playing at Ongar this morning. We aim to go out somewhere for exercise and lunch instead

I lost 5-9 in the first round, but at least my opponent went on to win the competition, so I can say I was beaten by the best!

Nothing new on the myeloma front. Still waiting for my NHS CPAP machine and appointments with the respiratory people and a dermatologist. Also waiting to hear about my fourth COVID vaccination (due Jan 10th)  and my PCR kit hasn't arrived yet..

It's a dex night and I woke up at 05:45 with that old familiar feeling. Worst sleeplessness I've had for a long time. I shall try to use the time constructively by writing a Myeloma UK post about the 4th vaccination. There is, needless to say, a lot of confusion around. Bring back Nadhim Zahawi!

01/01/22 Happy New Year

Hard to believe that this blog is now entering its fourth calendar year...

2021 wasn't a great year by any standards - from the myeloma side of things I'm in very much the same place as I was twelve months ago except  that the fatigue is perhaps rather worse. And it ended badly with two days of extreme frustration with my BT account. Finally sorted out now except that I can't see or view bills on the desktop computer for some obscure reason. May be some sort of firewall issue. Sue can do all that from her desktop, and I can do it on my phone, so that's a tolerable failure until I find a solution to it.

Of course a year ago I had still to discover the joys of petanque...