27/02/22 Healthy diet...

Nice day yesterday, bright and sunny if not too warm, so Sue bundled me and the wheelchair into the car and drove us off to Promenade Park in Maldon. Bacon and cheese croissants with cappuccino for a very pleasant lunch.

Nice to see the first crocuses and daffodils of the year putting in an appearance. Lifts the spirits no end.

The morning's post included a letter with a follow-up appointment with the neurologist Dr.Da on March 22nd. Seems rather a long way away for "urgent" but there'll be the recall MRI scan and presumably at least one appointment with the neurosurgeon before then. I'm just impatient to get on with it.

26/02/22 Blood results

Good again - first set of bloods completely under the new no-treatment regime. Paraproteins still undetectable, one of the FLCs little out of normal range but nothing we haven't seen before. That's a relief because I was half-expecting the PPs to grab the opportunity and shoot up again.

Otherwise, a very slow day yesterday. In the morning I made it from stairlift to riser/recliner chair and had to sit down for a rest before making it through to the kitchen. Did a couple of small bits of washing up and exhausted by both of them. On the other hand did the evening meal without any help except at what we now have to call the "plating" stage. Hoping for a ittle more energy and vitality today!

24/02/22 MRI report

 It's arrived.And I have to go back for a more detailed scan of my cervical (neck) spine on Wednesday.

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

Thank you for referring this patient.

EXAMINATION DATE: 22/02/2022 Examination: MRI Spine Whole
EXAMINATION: MRI Spine Whole
CLINICAL INDICATION:
Multiple myeloma. Left leg weakness. Exclude myelopathy
TECHNIQUE
Routine imaging protocol
FINDINGS:
There is an old fracture of the odontoid peg with posterior displacement of the odontoid peg in relation to the C2
vertebral body. There is narrowing of the cervico-medullary junction. Although axial images have not obtained
through this level, the cervico-medullary junction appears to be atrophic with high T2 and STIR signal here in
keeping with myelomalacia.
There is minimal grade 1 anterolisthesis of C6 on C7. The C5-6 and C6-7 intervertebral discs are degenerate
and of reduced height. The other cervical intervertebral discs are dehydrated.
At C2-3 the left C2-3 facet joint is degenerate. No significant neural compression seen.
At C3-4 there are degenerative changes in the right C3-4 facet joint and uncovertebral joint with narrowing of the
right C4 neural exit foramen.
At C4-5 No significant neural compression seen and there are some degenerative changes in the right C4-5
facet joint.
At C5-6 there are degenerative changes in the uncovertebral joints and disc/osteophyte bars cause narrowing of
both C6 neural exit foramina.
At C6-7 there are degenerative changes in the facet joints and uncovertebral joints with some narrowing of the
right C7 neural exit foramen.

RAMSAY SPRINGFIELD HOSPITAL, Private & Confidential
Crisp, Ian, ID: 2328367, DoB: 10/11/1948,
Description: MRI Spine Whole, Study Date: 22/02/2022, Page 2 of 2
The rest of the cervical cord returns normal signal with no evidence of cord compression.
There is a scoliosis of the thoracic spine, convex to the right. Some of the mid and lower thoracic intervertebral
discs are degenerate.
There are minor posterior disc bulges in the lower thoracic spine but no significant neural compression or
foraminal narrowing is seen in the thoracic spine. The thoracic spinal cord returns normal signal with no
evidence of cord compression. Although there is a small far right dorsolateral disc bulge at T11/T12, this is not
causing compression of the right T11 nerve root.
There is a scoliosis of the lumbar spine, convex to the left. Minimal retrolisthesis of L5 on S1 is noted. The L2-3,
L4-5 and L5-S1 intervertebral discs are degenerate and of reduced height with associated endplate spondylotic
changes. The other lumbar intervertebral discs are dehydrated.
At L1-2, there is no neural compression. At L2-3 and L3-4, there are minor annular disc bulges. No neural
compression seen. At L4-5 there is a small annular disc bulge with a left lateral and far left lateral component.
This is causing left lateral recess stenosis and there is some impingement upon the left L5 nerve root in its
lateral recess. There is narrowing of the left L4 neural exit foramen but the exiting left L4 nerve root is not overtly
compressed. At L5-S1 No neural compression seen.
The lumbar thecal sac is adequate throughout. The conus is normal.
There is abnormal low T1 and high STIR signal in the mid and superior aspect of the L4 vertebral body. The
appearances may be due to degenerative change but myeloma involvement here cannot entirely be excluded.
No infiltrative bone marrow disease is seen elsewhere in the spinal column.
CONCLUSION:
There appears to be an old fracture of the odontoid peg with posterior displacement of the odontoid peg in
relation to the C2 vertebral body. This is causing narrowing of the cervico-medullary junction. Appearances
suggest that this is longstanding and there is myelomalacia and atrophy of the cervico-medullary junction with
high STIR signal. A neurosurgical opinion suggested for further evaluation.
There is abnormal signal in the L4 vertebral body which I suspect is due to degenerative change but myeloma
involvement here cannot entirely be excluded. No spinal cord compression seen elsewhere in the spinal column
and the lumbar thecal sac is adequate throughout.
I am recalling the patient for dedicated axial imaging of the cervico-medullary junction.
Reported by: Dr Sanjiv Chawda GMC: 3329005
Consultant Neuroradiologist
Reported by: Consultant Neuroradiologist 

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Interesting reading, isn't it?

The neurologist's accompanying letter says

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

Dear Ian

 

I have now received the results of your MRI scan of the whole spine which was done on 22/02/22 at Springfield Hospital.

 

This does show severe multi level degenerative changes (wear and tear) some of which are old. There is a fracture at the vertebral level of C2 (high neck) causing some damage to the spinal cord - myelomalacia and a doubtful change on the L4 vertebrae (lumbar) raising a suspicion for myeloma involvement.

 

These findings require review by a neurosurgeon and if you give your consent, I can refer you URGENTLY to my colleague, Mr XXXXX. Please find attached a copy of the MRI report. I also note that the Consultant Rdiologist, Dr  XXXXX is bringing you back for more imaging of your neck and I will contact you once again with this result.

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

I have of course agreed to see the neurosurgeon.

More later, including translation of some unfamliar medical terms

24/02/22 Waiting...

Nothing much today, just waiting for blood test and MRI results.

Did Pill Organisation yesterday andwith my left hand barely working and the right one heading in the same direction it took an age even with the new pill popper. And eating is now largely single-handed, which doesn't help!

23/02/22 Anniversary

Quite a day, yesterday. It started with my (computer) mouse disappearing. Somehow it jumped off the computer desk and found a new home in the two-inch gap between the bottom of the desk. I used to  be be flexible enough to get down there with a torch and look for missing items but no more, so had to get a neighbour in to help. It took a while but eventually we found the mouse and returned it to its mat.

I took one of my four Diazapams last thing at night, and when I got up my balance and walking were probably the worst ever, but that was short-lived. I took #2 half an hour later, #3 after breakfast, and #r4 just a few ninutes before the scan. I don't know i0f the diazapam helped - certainly there was no obvious effect of sleepiness or woozly light-headidness - but I got through the scan with no great difficulty at all. 

What I think did make a difference was that instead of being in a separate control room on the other side of a window, the technicians were in the room with me throughout. Even better, Sue was allowed to stay in as well. So there was a lot of support instead of the sense of complete isolation that I've had before.

CORRECTION: Sue tells me that all the techies were in their control room behind a glass window, so she was on her own in the MRI room (apart from me). Being inside the machine I couldn't see but I had the clear impression there were two, perhaps three, people giving encouragement and physical contact. Obviously not. Perhaps I can blame the Diazapam...)

Anyway, profound sense of relief for both of us now that the MRI thing is finally put to rest.

Otherwise, our 40th anniversay included a surprise afternoon tea that wasn't a surprise, and one of our cats getting into a fight with a neighbour's cat that ended up with her dripping bood all over the floor. She had to be taken to the vet to get stitches in a nasty wound in her inside thigh and at least seven days confined to quarters while it heals.

I prefer the Devon way but Sue goees for the Cornish method. Vive la difference!

We've also been having some fun - and not a little frustration - with our new Ring Video Doorbell - nothing like as easy to set up as they say! Here's a frame from a video it shot of a deliver man ringing the bell and failing to deliver. I was upstairs taking part in the Great Mouse Hunt so could't get to my phone in time to deal with him. Here's a frame from the video:

I like the late afternoon sky in that image!

21/02/22 MRI postponed

Ever since my aborted MRI back in 2019 when my myeloma was diagnosed, whenever a doctor has raised the subject of MRI I've told the story and said that I'll need heavy sedation, preferably to the point of unconsciousness, to be able to get through it. "Yes," they've all said (including the recent neurologist who ordered the scan), "no problem, just tell the radiologists when  you arrive and they'll sort you out." Someone from Radiology phoned up a few days ago to run through a list of questions about whether I have any metal objects on or inside my body, and etc. Sue took the opportunity - yet again - to talk about sedation and got much the same response.

So we arrived this rather early morning and were rapidly and efficiently whisked into Radiology where we asked the question."No, no way, we don't do that and even if we did it needs a prescription from your GP..."

To cut the story short, they agreed another appoinment  10:00 tomorrow, and we shot off to arrange a prescription from our GP - Sue did all that, I'm just too slow over the ground these days. And she had to go back in the afternoon to collect what the doctors in their wisdom had decided on - four 2mg diazepam tablets to be taken between last thing tonight and the time of the scan. That's barely enough to knock a mouse over and I doubt it'll have much effect on me. I have considered washing them down with a bottle of Shiraz for greater effect...

(Sidenote: since the stay in hospital my desire for a glass or three of red in the evening has faded completely away - it's well over a week since I had one)

And one mort thing - tomorrow, the day of the rescheduled scan, just happens to be our Ruby (40th) wedding anniversary and we had shunted all sorts of other things around to keep the diary clear. You can imagine how we feel about that!

20/02/22 (2) The dreaded MRI...

 ... is at 08:20 in the morning. Better to get it over with, the sooner the better, and all that. I am more than a little apprehensive after having to abort the one a couple of years ago. At least this time they're all cued up for heavy sedation, and one way or another it has to be done.

Alarms set for 05:30 and we plan to leave at 07:30. I'm so slow at getting dressed etc. these days that I'll need all of an hour and quarter to be ready for breakfast. In he meantime, wish me luck!

Not an entirely accurate image, as there's no way the radiologist would be in the same room as a scanner with a computer and a metal-framed chair. Not with those magnetic fields...

20/02/22 Power cut, Crocs

A rather difficult time with a 24-hour power cut thanks to Storm Egbert, or whatever it was called. We had winds as high as I can remember in twenty years here, but got away lightly with just one fence panel damaged.

24 hours doesn't sound all that bad but it made things very hard for us. My new armchair was stuck in the "stand up" position, and we didn't know how many trips the stairlift had left in its battery. Just one flush in the upstairs W.C. because it has an electrically-powered macerator. One of these days I'll write about its green and environmental failures, but not tonight. No heat and no hot water of course, but we do have a log burner and a big Calor gas heater as well as a Calor gas wok burner in the kitchen which lets us boil a pan of water. Plus lots of torches here and there about the house. So things might have been a lot worse.

Obviously I can't do a lot in my current state and have to have a lot of things done for me, and Sue was absolutely magnificent in getting us through it. No praise I could write would be enough.

A couple of her friends came round on the second afternoon (yesterday) bearing gifts of sandwiches, cakes, cappuccinos, and the like. More than welcome!

Hard to describe what a relief it is to have the power back on.

Sue's collection of nightlights and candles downstairs (copied from Facebook):

For some strange reason my new Crocs have not met with complete approval. I think they brighten the place (and my mood) up no end. No accounting for taste:

Bleak prospects. Or maybe not.

Another day with not much happening apart from Springfield Oncology in the morning for bloods and next month's meds. The nurses were quite surprised to see me arrive in a wheelchair...

I'd very much like to get out for a decent walk or even once round the Triangle but at the moment there's just no way. Pinning all my hopes on Monday's MRI and that it will reveal something treatable and at least partly reversible. Otherwise, the prospects do not look very good.

17/02/22 Scooter

Yesterday morning we went the Lifestyle and Mobility shop in Harlow to continue our pursuit of a mobility scooter for me. Sue and I both think it's the right time to take the step - even if there's a big improvement in my current mobility a scooter will still be a big help in keeping me independent and being able to get to starting points for decent walks. And, with this disease, I'm going to need one at stage so might as well get started now before the prices go up with inflation.../

We actually started the search a few days ago and settled on a very nice model in the belief that we could get it into the back of my car with a boot hoist to handle the heavy lifting. But it turned out that although it might just fit through the boot opening (probably) it was heavy enough at 107kg to need a bigger hoist than can be fitted to the inside of a Focus. So we had to cancel that deal and re-calibrate to smaller and lighter scooters. We tried what seemed the likeliest folding model but it was too cramped and uncomfortable - too many design compromises for the sake of the folding mechanism. In the end we went for a non-folding lightweight which is far more comfortable, drives nicely, and at less than 80kg will work with the smallest model of boot hoist. Here I am testing it out in the shop:

It'll take two or three weeks to get the scooter delivered and the boot hoist fitted - more photos then.

In the meantime, Springfield later today for more bloods and next month's meds. I think the chemo nurses will be a little surprised to see me arriving in a wheelchair!

16/02/22 Pill popper etc.

Another day like most of the others recently - i.e. stuck inside between two chairs separated by the stairlift. Not ideal for exercise. At least today will involve a trip to Harlow...

Did Pill Organisation, and the new pill popper for blister packs proved its worth. Not completely perfect but it did make dealing with 28 little blue Amitriptyline pills a lot easier and my thumb appreciated the relief.

I feel a bit safer in the shower now it has two hand grabs as well as a proper shower chair and non-slip mats. Trouble is, there's barely enough room for me as well...

15/02/22 Phone consultation and scan appointment

I now have a date for the MRI - Monday 21st. Not as soon as I would have liked, but no point arguing about it. The time is the unearthly 08:20. Considering how slowly I do everything these days, that'll mean setting the alarms for 05:30 at the latest. By my standards of some years ago, that's not even bedtime.

'Phone consultation with haematologist Dr.Ch yesterday. We talked about the neurology report and the various possible ways things might go to from there. If, for instance, the scan shows a plasmacytoma in my neck, that could mean another round of radiotherapy. But it all depends on the results of that scan. However he confirms no return to Lenalidomide - "there are several alternatives".

13/02/22 Neurologist and semi-fall

 I've had a report from the neurologist. This is the key paragraph:

"I think the probable primary cause for his present symptoms and today’s clinical findings is his multiple myeloma. This condition is known to lead to several neurological complications including peripheral neuropathy, polyradiculopathy and myelopathy."

In other words, he suspects compression of the roots of the nerves entering and leaving the spinal cord between my cervical (neck) vertebrae, and that's why he has requested a "urgent" spinal MRI. Makes some sense to me, and I've suspected nerve compression before. It also suggests that Lenalidomide side-effects may have been something of a red herring.

Last night I went to bed as normal, and woke a few hours later in need of a visit to the bathroom. I got up, negotiated the step between bedroom and landing, did what had to be done, and went back to bed. No problems. Then, when I wanted to get up at 08:30 or so, it all went wrong. Somehow I lost it while trying to stand, and I ended up with my lower half kneeling on the floor and my upper half face-down on the bed. You might think it would be easy from there, but the bed offers little firm to get a grip of. With no small difficulty I got myself to a place where I could get my right hand on the bed-head but even that wasn't quite enough to haul myself all the way onto the bed. Luckily Sue heard me and was able to give me enough help to get that far. An important lesson in the nature of falls - they don't have to bed big and dramatic to cause plenty of problems.

I've got a urine bottle and in future I'll keep it ready to hand so as to reduce risk from nocturnal excursions. This place looks more and more like a care home every day...

10/02/22 Miscellaneous

The left hand is, if anything, a fraction worse again. I'm turning against the side-effect theory because after four weeks off the suspect drugs there is no improvement. Surely they should be out of my system by now, and the body starting to put things right in at least some respects.

The blister pack pill popper gadget arrived from Up The Jungle. It looks promising but I'll wait till Wednesday before putting it to the test.

Not at all pleased with the battery performance of my Careline alarm over the last couple of days. It's supposed to last a good two days before needing a recharge, and I've been charging it every night. But the last two times it hasn't even lasted 24 hours - more like 18.  I've sent an email and will follow it up with a 'phone call in the morning.

Sue rang Radiology at Springfield - we should hear about the spinal MRI early next week.

Spent much of yesterday in Harlow, for reasons probably to be revealed later. Bacon baps for lunch - tasty if not especially healthy.

10/02/22 Blister packs

Again, not a lot new. My time is divided between upstairs at the computer and downstairs in the new chair, separated by trips in the stairlift. Still very dependent on a stick to move around in the house, and little paranoid about falling...

Yesterday was Pill Organisation Day. With my right hand distinctly worse than it was last week, getting some the of the little ones out of the blister packs was a real problem. I ended up using a round baking tray (a new and unused one) to stop them rolling out of sight or pinging across the room. Amitriptyline is the worst, all 28 of the little blue buggers. Also 28 paracetamol - and the current batch are particularly prone to breaking in half as you try to get them out. And as for the tiny little cigar-shaped statins, they're enough to give you a heart attack... The whole process took rather more than two hours and left me with very sore fingertips which I hope won't turn into new finger splits. So I turned to Amazon as usual and found a variety of gadgets for extracting pills from blister packs. One of them is winging its way towards me and should arrive later today.

09/02/22 Chiropodist and neurologist

Yesterday started with a home visit by a chiropodist, needed because I can no longer reach my own toenails. She did a thorough job on my feet and then did my fingernails. I can reach them OK, but using my favourite Swiss Army Knife scissors is impossible now because of the PN or whatever it is in my hands.

Then the neurologist at Springfield. No easy answers of course. In short he thinks it's all part of the myeloma rather than a side-effect of one of the drugs, and won't say more than that until he's seen a spinal MRI. So that's the next step. I'm now expecting a letter which may give a bit more to go on and I'm awaiting an MRI appointment before too long.

08/02/22 It's here!

The stairlift has arrived!

We don't live in quite as much baronial splendour as that photo might suggest. The house is about a hundred years old, and those 100% fake beams were added by the previous owner.

We have also added a powered two-motor recliner/riser chair, which makes things a lot easier for me:

The old armchair which was in that spot is now in the garage awaiting an offer of a good home...

Later today we have a visiting chiropodist coming to attend to my toenails, which I can no longer reach myself. I think that's one of the real signs of entering old age, although I prefer to think of it as disability...

In the afternoon we see the neurology consultant at Springfield. We have a list of questions prepared, and Sue should be able to take notes. More about that tomorrow.

06/02/22 Road test

When I started this blog I said my aim was to update every one or two days - so no apology for the lack of a post yesterday. I just couldn't think of anything fresh to write about - although I forgot last month's blood test results - all good, with PPs on zero and FLCs all in normal range. The next set, reflecting the first few weeks off both Len and Dex, may have a different story to tell.

A for my current state, getting up the stairs seems harder every day and the left arm PN seems to be extending upwards from the hand into the forearm. Not good news. The stairlift, if it actually manages to arrive tomorrow, will make the stairs vastly easier but will also remove a good deal of exercise. I will have to find an effective substitute. I don/'t want to the way of both parent who, after moving into a bungalow, gradually lost the ability to cope with stairs or more than a few steps. 

Yesterday we finally got out for a little fresh air and exercise. The air was certainly fresh - cold and blustery - and the exercise (for me) was rather minimal. The idea was to give the wheelchair a road test at Bocking and Braintree Public Gardens because t's pretty flat with good well-surfaced paths. The reality was to prove that what seems flat on foot seems very different pushing a 14 and a half stone man along. It's more than I can ask of Sue, and the chair is obviously going to have to be 99% restricted to indoor use. We're both starting to see the possibility of a mobility scooter coming over the horizon... I will be doing some research.

The toasted cheese and red onion sandwiches were excellent...

One of the wheelchair issues we identified today is that I can only be of much help with my right hand - but that pushes the chair to the left and Sue has to resist that (consequent twisting strain on her back) as well as pushing ahead. My lefty hand is of little value because I have neither strength nor much grip in it. Not a lot of feeing either, so the sheepskin glove I had on that hand gradually worked its way off without me feeling a thing until I noticed it was missing. Three times I had to send Sue back to recover it...

04/02/22 Stairlift delay

The main non-event: stairlift installation will not happen later today, despite all the promises. It's now scheduled for Monday.  I alternate between red-hot rage and ice-cold fury. Two more days of real difficulty - not to mention risk - with the stairs. I can't cut it down to fewer than six or seven times a day. Any less would put unreasonable pressure on Sue having to bring meals upstairs and etc. Not to mention all the cooking and clearing up. She does more than enough for me without that, and has her own medical issues to deal with. At least I can still cope with some o the cooking, although far from all of it.

Otherwise, a new and proper shower chair, and few other bits and pieces aimed at making the shower safer for me and no progress at all with the PN or the "stroke" symptoms. As a result, yet another day stuck in the house,

Wrong sex, but right idea:

We've had some fine sunsets recently, or so I'm told because my study is on the wrong side of the house. Sue took the photos:

03/02/22 Shower mat

Waiting for stairlift installation on Friday, making the place look even more like a care home than it does already. The new non-slip mat for the shower is fine except that it goes in all the places where I don't stand and not where I do. We'll attack it with some heavyweight scissors later to make it a bit more useful.

Otherwise, nothing new, again. This is going to be long and slow. Did Pill Organisation, which took longer than usual because of the state of my left hand.

01/02/22 Fall

 A bit more excitement yesterday evening. Too save typing it all out again single-handed, here's an edited version of my post on the Myeloma UK Support group:

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Last night, despite recently fitting a new grab bar, I failed to get off the shower stool properly and ended in a heap on the floor of the shower cabinet with my head stuck at a rather uncomfortable angle. Sue was in the downstairs bathroom which is the furthest part of the house where she might not have heard me. Fortunately I have a (waterproof) personal alarm round my neck and I used it to call for help. The operator phoned our landline just as Sue was getting out of her bath. The idea of a couple of paramedics in an ambulance was dismissed with expected waiting time of TWELVE HOURS -"they're very busy!". So we phoned a neighbour who helped us before when I had a fall on the evening of getting back from hospital a couple of weeks ago.

After a good deal of planning and preparation he and his wife got me back on my rather shaky feet again. With Sue's invaluable help, bless her, I then made it to bed so the usual post-shower jobs of facebook admissions and blogging didn't get done.

OK this morning apart from an even stiffer neck than usual. It could easily have been a broken leg or worse. I've ordered a new non-slip mat from Amazon and we're replacing the rather insecure shower stool with a chair that's been stored in an outbuilding since my Achilles tendon surgery back in 2014.

The moral of this story is in the value of personal emergency alarms. Mine definitely p[roved its worth last night.

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

A new mini-rash has appeared on my right wrist - bigger than the recent ones at 4 or 5mm across. Interesting in view of the fact that I've been off both Dex and Len for close to three weeks now.. Does this point a finger at one of the "supportive" meds that I'm still taking?