Another nothing day in limbo... Bright, windy, and cold - temperature down to just 2C. I stayed in the house all day, got some paperwork etc. done, slept a bit...
Just waiting for Tuesday and discovering what the neurosurgeon Mr.D has in store for me. And for Monday when we should get the hoist fitted to my car, which should lead to a huge increase in my ability to get around, as well as meaning Sue will have to do much less wheelchair pushing. And for the next set of blood test results...
Hmmm indeed. And Ha. Mmmm. Which is all my way of saying that this morning's meeting with Mr.D wasn't altogether satisfying or what I was hoping for. Nothing against him, he gave us over an hour and was very thorough in going through the various scans. But the short story is that he will discuss with colleagues ("we do everything as a team") and we'll have a video meeting next week. So it's more delay, which is the last thing I want.
To my surprise he's downplaying the whole subject of surgery (and he's a neurosurgeon!), emphasising that the main aim is to stop things getting worse rather than making them better. I hope he's just doing a bit of expectation management before next week. I said everyone else has been talking about some metalwork to stabilise the upper spine, but he wouldn't be drawn beyond "that's a possibility." He's more talking about a couple of screws for C1/C2 and possibly C3 as well but I'm not yet at all clear as to how that would work. Perhaps my anatomy isn't quite good enough.
When we were talking about spinal cord compression he said that in a way I have had a stroke - just in the spinal cord rather than in the brain. Interesting thought.
Well, that's enough for now. I just have to wait another week and try not to do any more damage...
Days are either quiet with very little to write about, or full of new things. Yesterday was the second kind.
It started with an early 'phone call to Springfield to cancel today's neurologist "review" appointment, as agreed earlier with his secretary. Will re-make that appointment later, if there seems to be any point. Then I had an email from Mr.V's secretary who also turns out to be secretary for Mr.D, metalwork expert neurosurgeon at Brentwood Nuffield. She gave me a couple of phone numbers for appointments there. I rang one and to surprise (and delight) got one for 11:10 today. At that point I thought I'd better call AXA (insurers) to bring them up to date. All OK there, and they confirmed that if they want to treat this as a separate new claim for administrative reasons, it won't affect my No Claims Discount. That's quite a relief.
Then another email came in bringing with it Mr.V's clinic letter and a couple of scan reports. Here they are:
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X-Ray report:
EXAMINATION DATE: 11/03/2022 Examination: XR Cervical Spine
EXAMINATION: XR Cervical Spine
CLINICAL INDICATION:
Old odontoid peg fracture.
FINDINGS:
Lateral, lateral flexion and lateral extension views were obtained.
There is minimal anterior slip of C6 on C7. No instability has been demonstrated. In particular, no instability is seen in the upper cervical spine.
---------------------------------------------------
CT report:
EXAMINATION DATE: 11/03/2022 Examination: CT Cervical Spine
Addendum created at 11/03/2022 12:35:57:
Addendum to previous report.
I note the history of myeloma. No destructive cervical spine pathology has been
demonstrated.
EXAMINATION: CT Cervical Spine
CLINICAL INDICATION:
Previous fall. Progressive neurology. Old fracture. History of myeloma
TECHNIQUE
Axial sections were obtained with reformatted images
FINDINGS:
There is an old fracture of the base of the odontoid peg. The peg is displaced significantly posteriorly and abuts the anterior arch of the atlas. The anteroinferior aspect of the displaced peg abuts the posterior aspect of the C2 vertebral body segment There is also posterior subluxation of the right C1 lateral mass on the right C2 lateral mass. Degenerative changes and osteophyte formation is demonstrated at the left C1/C2 lateral mass articulation.
Degenerative changes are seen in the cervical joints being particularly prominent on the right side at the C3-4 and C4-5 levels. Alignment of the rest of the cervical spine is normal
-----------------------------------------------------
What all that means, as far as I can tell with the assistance of my Unofficial Medical Adviser, is that it's a bit of a miracle I went as long as I did without serious consequences, and the sooner we get the scaffolding in there the better.
It's still unclear whether we're dealing with an old fracture or a new one, or both. But my UMA tells me that because of the way bone heals and re-forms, it's very hard to date these things. So perhaps the question is unanswerable and only of historic interest.
Now off for an early(ish) night. Giot to be at my brightest and best for Mr.D later this morning!
Second consultation with neurosurgeon Mr.V yesterday morning. A good start: he's happy with the soft collar and says I can forget the rigid one. Huge relief! After all those scans and x-rays he says the main thing is to avoid my head dropping forwards, and the soft one des that well enough.
We're no longer talking about a new upper cervical fracture and an old one. It's just the old one now. More about that, I hope, in the scan reports which should be with me by early next week.
The plan now seems to be to go for inserting some metalwork into my neck. Mr.V won't do that himself, being more of a brain surgeon, so he's passing me on to a colleague at Brentwood Nuffield Hospital who's more of a Meccano expert. So that's yet another consultation before we get to the action. On Monday morning I'll 'phone AXA and see what they have to say about it...
That's the way Meccano used to look when I were a lad back in the '50s...
The question I should have asked but didn't is "How far is this related to my myeloma?" or perhaps "If I didn't have myeloma would this still be happening?" But I don't suppose he'd have given a straight answer anyway.
Outside the hospital afterwards I made a test call on my Careline GPS alarm, as advised by their technical people. I've had reason to suppose over the last couple of weeks that it's not been working properly. It reported that I was still at home. We repeated the test a bit later outside a nearby Costa (for lunch) and got the same wrong result. So they're sending me what will be my second replacement alarm in just a couple of months. That's not too impressive.
Once home, I was hit by a fatigue attack as bad as I've had since I came off len & dex. Collapsed in my chair downstairs and slept. And slept. And slept...
Yesterday morning - bright and sunny but still with a bit of a nip in the air - took the scooter down the garden to the big pond for a while. All very pleasant. Then went back inside and, in the words of the late and great Roger Zelazny, "the fit hit the Shan". It started with an innocent-sounding call from the people we've booked to fit a hoist to my car and it ended, after many more deeply frustrating 'phone calls, with us bringing some helpful neighbours round to heave the scooter (minus seat and batteries) into the back of the car so that we could take some photos to prove that yes, it really does fit:
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All credit to Sue, who did all the work on the phone and more than her fair share of the heaving.
Nothing new on the myeloma front, just waiting for the next neuro-appointments on Saturday and Tuesday. Which reminds me that I haven't posted the neurosurgeon's clinic letter yet. Here it is:
----------------------------------------------------------------------
Diagnoses:
Recent C2 fracture with slowly progressive myelopathy
Previous myeloma - recently stopped lenolidamide and
dexamethasone
Old C2 fracture
DH: Cotrimoxazole, acyclovir, rivaroxaban, omeprazole,
amitriptyline
AH: NKDA
Operations: Umbilical hernia repair, R Achilles repair
I assessed this 73-year-old right-handed gentleman who
was accompanied by his wife. His myeloma has been in remission for two years.
He presented to Broomfield on 12th January with some left leg weakness. He had
brain MRI and he was discharged with stroke refuted. When he returned home, he
had a fall in the kitchen when bending for a tablet and needed help to get up
he has had a further fall in the shower, needing help to get up and a partial
fall onto the bed. His weakness predates these three falls but on closer
scrutiny, he had a fall in the summer of 2021 whilst playing bowls, when he
landed flat on his face. Since then, he has noticed a slow progressive
worsening of walking. Until January, he was able to walk outside with a stick
slowly or with a walker. He now uses a wheelchair outside but can mobilise with
a stick or two sticks at home. He has a stair lift. His right leg is the best
limb. He can dress himself but cannot fasten buttons or laces. He feeds with
his right hand and his left hand cannot really manage cutlery. He has urinary
urgency. He has no real neck pain but on certain motions, feels a minor twinge
intermittently. L'Hermitte's is negative. He reports altered temperature sensation
in the right hand.
He did not have cervical tenderness. He had restricted
rotation but reasonable flexion and extension. Shoulder power was grade 5,
right arm normal, left elbow and wrist and grip all grade 4. Left arm reflexes
were brisk. Hoffman's was negative. He had normal sensation in the upper limbs
including proprioception in the index finger. He had normal power in the legs
but walked slowly. Knee reflexes were brisk ankle reflexes absent, plantars
flexor. Proprioception was preserved in the big toes.
MRI shows an old C2 fracture with posterior
displacement of the odontoid process with some signal change in the spinal cord.
I have arranged a hard collar, CT of the cervical
spine and dynamic x-rays. I have suggested we are working towards a posterior
stabilisation, perhaps with decompression in order to stabilise his neurology
and allow some improvement.
Yours sincerely,
Checked electronically but not signed to avoid delay
----------------------------------------------------------------------
Yesterday was a beautiful day so we took the scooter down the garden to soak up the sun and inspect the job done by the pond professionals we had in the morning to do the yearly (approximately) clean-up.
Here's the small pond:
and the big one - still being topped up, hence the hose:
Me getting some sunshine:
and Belle failing to grasp that "beep beep" means "Get out of my way!"
The mystery Royal Mail package turned out to be my regular order of coffee beans and my subscription pack of Optivision pills. Neither normally involves any delivery problems.
Went out on the scooter for the first time, accompanied by the watchful Sue on foot. First lesson learned: crossing main roads with limited ability to turn my head is not easy... Otherwise, all good.
Clare the physio from Springfield 'phoned just as we were leaving for that modest expedition (just up to the Four Wantz and back). Advice is to stay with the soft collar until we see the neurosurgeon on Saturday and see what ideas he has then.
I 'phoned Springfield Physiotherapy about the problems with their rigid collar. The receptionist said she'd tell Clare the physio who would call back later. Does anybody ever "call back later"? At least I've got my complaint in the system now.
According to the red card put through our letterbox last Thursday, Royal Mail have a package for me. Now, at 00:15 the day after, the Royal Mail app still insists that they will deliver by 19:30 yesterday. I have no idea what's inside the package, maybe it's a miniature TARDIS.
The mobility scooter ordered a month ago has at last arrived. Next step is having a hoist fitted to my car to get it in and out of the back - should be done in about a week.
Did much better with the soft foam collar over the last couple of days - wore it non-stop yesterday from before breakfast until my evening shower - and straight back on again after that. But of course it's much less restrictive than a rigid one and therefore presumably doing me much less good.
Some searching shows quite a variety of possible alternatives and I have little to go on to choose a replacement. Will 'phone Physiotherapy at Springfield tomorrow to reject their one and get what advice I can.
The good news is that sleeping with the soft collar was ok. Not perfect - I woke up a few times - but tolerable. When I woke for the last time it had come off. No idea how or why (except that there isn't much area of velcro-to-velcro contact) but it happened. We'll see what happens tonight.
The rigid collar is another thing altogether. Despite our best efforts and huge frustration we just couldn't get the thing to fit even as well as the physio managed. I stood a bare half hour of it first time but then had to give up. I've been using the soft one all the time since. The rigid collar is still in one piece, but if I were more mobile than I am I would probably have smashed it to pieces with a sledgehammer and exorcised the remains with a flamethrower.
I'll do some research over the weekend and 'phone the physio department on Monday, see if we can come up with a workable solution.
We went to Oaklands Park for some fresh air and spring sunshine - and half a sausage roll for lunch. Sue, having to push me in the wheelchair, got rather more exercise than I did. That's an inequality that needs to be sorted out somehow, eventually.
The photo shows me being fitted with the medieval torture device also known as a neck brace or rigid collar. I took two and a bit hours of it before swapping to the "soft" foam one they also gave me. That's a lot more comfortable but doesn't limit movement as much so is probably less effective. I only took it off for my shower. Will try for two and a half hours with the rigid one tomorrow, build it up slowly.
The completely unexpected thing is how much this limited head movement affects balance and walking. Making the evening meal I couldn't get down to low-level cupboards etc. in the way I did yesterday. I hope this is something that will improve with practice and familiarity, but at the moment it feels that all the progress of the last couple of weeks has been lost.
Now I'm going to see if I can sleep with the soft version on...
One more thing ticked off that list- Springfield Physio 'phoned yesterday to say that the collar / neck brace ordered for me has arrived. We go in later this morning for a fitting and the dubious pleasure of paying for it - AXA don't cover "external" items.
No obvious progress yesterday, except that once or twice I caught myself using my left hand for things I would have used the other one for before, even if less convenient. Nothing dramatic, just getting things out of kitchen cupboards and the like I'm certainly a good deal more independent in the kitchen than I was a couple of weeks ago.
More slow progress yesterday - one indicator is that I did Pill Organisation in an hour and a half. Last week was two hours. I seem to have a good patch in the afternoon and into the early evening. It's slow None of those things I'm waiting for happened yesterday, except that my GP has approved one more month of hose two pills I used to get from Springfield - and that should be as many as I'll need before I come off them in April.
Not a lot to report from the conversation with Dr.Ch yesterday, except that next month (that'll be after three months off-treatment) he intends to take me off the "supportive" meds as well - blood thinner, anti-viral, etc.. That'll depend on the blood numbers staying good and the most recent set (in yesterday morning) were good: PPs still at zero, FLCs all normal, and everything else normal apart from my usual slightly low haemoglobin. So I remain in remission for a bit longer - as long as the current spinal problems aren't the result of non-secretory myeloma activity. It's a possibility but not a very probable one.
Doing the washing-up after lunch I became aware that much of the
temperature sensation in my right hand has returned - maybe 75% at the
hot end of the scale, 50% at the cold end. That would suggest some
relaxation of pressure on the appropriate nerve root, or even some nerve
regeneration.
Then, throughout the afternoon and evening there was a distinct
improvement in walking, balance, and flexibility. Making dinner I got a
heavy pan out of a bottom drawer without even thinking about it - a day
or two I would have needed to drag a chair across, or to call Sue to get
it for me. Biggest danger now is forgetting where I left my stick
because I don't feel the need to have it with me all the time...
Also neck rotation, although accompanied by the usual collection of
clicks, grinding noises, and stabs of pain, seems to go a degree or two
further each way. Tingling in both hands is reduced as well, although
I'm not back two two-handed typing yet.
Not going to get too excited yet over first positive developments for a
couple of months. We'll see what tomorrow and the next few days bring.
But at the moment feeling more positive than for a long time.
Biggest thing of the day - made it out of the back door and along the path to the end of the "workshop" outbuilding in the back garden. I think that's only the second time I've been out at the back since I returned from hospital two months ago. That was when I had to go to the "farthest point" as part of the setup for the GPS in my Careline personal alarm, and it nearly killed me. Felt like that, anyway.
Something of a contrast to the last couple of quiet days! We started at some unearthly time in the morning so as to have the first half of breakfast and get to Springfield at 08:15 in time for my CT and X-Ray appointment at 08:30. That all went smoothly and while I was being done Sue tackled the Physio department about the collars (one soft, one rigid, apparently) that the neurosurgeon requested. Apparently they've been ordered and are on their way...
Home for the second half of breakfast and couple of hours catch-up sleep. Then - in time for the usual online backgammon game, I gave myself the job installing a new webcam to replace the dying (if not actually dead) old one. This meant moving the computer desk, which is heavy with three monitors and a load of other stuff on it. I can just about move it myself because it's on wheels and there are plenty of things I can use for support. But the space behind is still very tight and also rather dark. Disconnecting the old camera was easy enough, fitting the new one wasn't because its cable is a lot shorter - and too short to use the same USB port. So I had to play the game of moving things around from one port to another until I found an arrangement that seems to work for everything.
And so to the backgammon. We got one and half games in and then our ultrafast fibre broadband went down. One unfortunate consequence is that our fancy new video doorbell also went dead because it communicates over the internet and with no power to the router...
As for the computer and the backgammon, in theory no big deal. I just have to switch over to the backup BT connection. But this had problems of its own - tracking down the password, an the fact that the power lead to the BT router had somehow come disconnected and dropped down behind the computer desk. So I had to drag it out again, and remember I said it was dark down there? Not easy to locate a thin black lead with an L-shaped mini-jack on the end amongst the mass of electric string down there. Twice I found it, twice I was betrayed by my bad left hand and dropped it again. And then Sue came to the rescue and that made things easier with enough working hands between us to hold a torch, find the lead, and get it plugged in to the router.
All sorted although not quickly enough to resume the backgammon, which we'll have to pick up again at another time.
Then the #1 nightmare of modern life - I lost my phone. This post is long enough already so the short version of the story is that I found it in the pocket of a pair of trousers I'd put into the washing machine an hour or two before. A lucky escape from a watery and soapy end...
Fibre broadband came back after an hour so, BTW. But quite a job to get the doorbell to go back online.
List of things I'm waiting for:
Collars
Dermatologist for the mini-rashes
CPAP machine
Reports and clinic letters from neurosurgeon and his scans
Two nerve conduction tests
Mobility scooter and hoist
My GP to organise moving a couple of pills cfrom Springfield to NHS
Probably more that I can't think of just now...
And to finish off a perfect day, just as I was about to go bed, the biggest nosebleed of my life.
A very quiet day yesterday, with the most exciting thing being a letter from AXA (insurers) about my "complaint". I didn't actually complain, I just 'phoned them to observe that a 55% increase in my premium is rather a lot and to ask if there was anything that might be done to bring it down a bit.
Woke up after a good long sleep, got out of bed (no small thing these days), made it to the bedroom door, and just couldn't face turning right into the bathroom and propping myself up against the basin for the tooth brushing and shaving and face-washing (single-handed these days, otherwise I risk losing balance and falling over). So I turned left into my study instead, dropped into the chair and stayed there in a sort of semi-doze until I felt up to the bathroom business and the equally difficult business of getting dressed. I can still do it myself given enough time but I'm not all that far from needing help.
After breakfast I was on my own as Sue went out for lunch with a friend. I just stayed in the riser-recliner and slept most of the way to lunch (a ploughman's roll from Greggs) and for an hour or two afterwards. I brightened up a bit after that. I seem to need the occasional day like that for some reason.
Springfield Radiology rang up about my upcoming CT scan and X-Rays. Best they could offer us was 08:30 on Friday morning, so another early start for me, I take so long to get organised in the mornings these days. Then Springfield Physio phoned to check that the neurosurgeon that he really wants a hard / rigid collar for my neck. We confirmed and she said "We don't do those" so now they're starting some complicated process to get hold of one from somewhere. This confirms a problem I'm increasingly aware of there - some of the consultants seem to live in a world of their own without knowing much about how the services underneath them actually operate.
The post included a letter from Springfield telling me that my next neurologist "review" appointment has been put back by a full week. So that's a week's delay in organising whatever treatment we all decide on, and another week of both hands getting slowly and steadily worse. Am I happy? You work it out!
The ventilation holes in the toes of my Crocs have an additional function that even the manufacturers may not be aware of. We have a gravel drive and when I walk across it from front door to car, I collect little stones in my left Croc but not in my right one. That, obviously, is because I'm dragging my left leg and foot with the toes pointing down. When I stop collecting that gravel in my left shoe, I'll know my walking is back to normal.
Apart from that, not much yesterday apart from a trip to Springfield for them to take some blood in advance of my next (phone) consultation with Dr.Ch next week.
I used to go to a lot of live music - jazz, classical, opera, and more. Two or three nights out most weeks. Of course all that had to stop when the COVID plague struck, and I said my criteria for returning would be (i) a vaccine that works for the immune-compromised, and (ii) at least two effective treatments. Even four shots of Pfizer won't guarantee not catching COVID but they are enough to give very high probability of avoiding hospitalisation an reducing it to little more than a bad cold. And to make that even better we have three anti-viral treatments available to the most vulnerable. So I should be ready to go back, but I'm not doing it. Just don't feel ready to break that wall. Don't want to have spent over two years avoiding the plague only to catch it through a simple and avoidable mistake.
Only things in the diary so far are the Writtle Jazz Festival in June (open air!) and some Wagner at Saffron Hall in September. Curiously, Wagner at Saffron Hall was the first thing I went to after my diagnosis back in September 2019.
The lengthy session with Mr.V was good in parts, less so in others. He went through all the routine tests again, and had a long look at the MRIs from Wednesday before deciding that he wants still more imaging - just X-Ray and CT this time, no big deal to cope with. The idea is to look at bone displacement and mobility with the fracture at C1/C2 - the top two vertebrae in the neck and the ones we called the atlas and the axis when I was at school. Long time ago now... As well as the imaging he's arranging for a rigid collar to help stabilise my neck and unspecified physiotherapy - there's no two ways about it, physiotherapists are NOT my favourite people.
Oh well, these things are sent to try us.
As I expected he's clearly thinking of surgery which would be at Brentwood for reasons not yet clear to me. He said there were two options - to go in from the front with a screw (not favoured) or from the back with a couple of metal rods, which sounds like a better idea to me - not so many other bits to get past and avoid damaging. Brentwood wouldn't be a problem, apart from another ten miles each way for visiting etc.. I think the Spire hospital there has a good reputation for advanced/difficult surgery, certainly better equipped than Springfield for that kind of thing. What might be a problem is getting my insurers to accept that this is all to do with myeloma so that it comes under the same claim. Otherwise I might be looking at expensive loss of No Claims Discount along with the 55% increase in this year's premium! The neurologist Dr.Da seems a better bet in that direction with his comments about myelomalacia and etc. Mr.V is clearly not well-informed about myeloma as one of his first questions was whether my myeloma is "all behind you now?" Well no, as it's a terminal and incurable disease...
For reasons not entirely clear to me he was keen to establish this C1/C2 thing as a recent injury, and was delighted when I remembered the fall I had playing boules on 23 May last year - see entry for that date for details. I don't think that had anything to do with the current problems but if it makes him happy...
He's going to send me copies of the MRI report and his letter back to the neurologist. Things may make a bit more sense when I've seen those.
We have a "review" appointment with the neurologist on the 22nd, by which time all those new images should be in. It's a long slow business and the important part hasn't even started yet. Meanwhile, every day both hands get a little bit worse. After the consultation we went for breakfast and Sue had to cut my bacon and sausage and a few other bits into bite-sized pieces for me. With ,y lack of fork control I would probably sent them flying. It's necessary and I try to accept this kind of help with good grace and plenty of thanks but no getting away from the fact that it is a little humiliating not to be able to do such simple things for yourself.
On the other hand I have worked out how to restore the spellchecker to Blogger which is a big help to me as my single-handed typing is far from accurate!
Later addition: I asked Mr.V about the various issues further down my spine, some of which had been identified by the neurologist as possibly myeloma-related,. He was completely dismissive, saying just "usual age-related". Not very impressed.
Woke up yesterday morning feeling distinctly off-colour. As bad as I've felt since the norning of hospital admission for some unidentified infection back in late 2019. It passed by mid-afternoon, and I'm inclined to blame the Diazapam. If so, a small price to pay for getting through thed MRI!
Neurosurgeon appointment later this morning - hoping the MRI#2 scans will be ready in time as promised. Carpenters like hammers and mechanics like screwdrivers and neurosurgeons like - well, neurosurgery. So I'm expecting to be told I need surgery, probably rather complex, at at least one level of my spine and possibly more. Not a prospect I'm exactly looking forwards to, but if it has to be done...
I should have more to report later in the day. Meanwhile, we've had some awful weather recently - grey, cold wet, miserable. But not every day, a few have started like this : ;
Everything did go according to plan yesterday. The MRI (with Diazapam) was only about twenty minutes (neck only) and not a problem apart from finding a comfortable position for my head and neck before going in. I suppose that with three successful scans in a row I must consider myself an accomplished veteran of the MRI. Or a lot better than I was, anyway.
Had a phone call from the neurosurgeon's secretary just before we left in the morning. Appointment at the uneartly hour of 08:25 on Saturday morning. The time itself isn't all that bad, it's the time I now take to get up and going in the norning. I'll need to set the alarms for 06:00 to be up and fully functional in time. On that subject, the Alexa in the bedroom is wonderful. All I have do is tell it to wake me up at a particular time, or to cancel all alarms, or whatever and it does it. Best alarm clock ever, except during power cuts.
For some reason the spellchecker on this isn't working. That'll give me something to do to pass the time tomorrow, And Sue has reminded me that I probaby should phone AXA (health insurers) to keep them up to speed with developments.
Did Pill Organisation yesterday morning and it took rather more than two hours, even withe pill popper. My left hand now has so little control or grip that it's really hard to get the pills properly into the jaws of the popper. But it would be harder still without it.
Miserable weather - rained all day so I lost my one chance of getting out of the house for a while.
But today I have my three-monthly B12 injection at the GP surgery in the morning. Because my car is out of action for a few days (no MOT certificate - we had to change that from the original date because of MRI#1 last week) Sue had to move my wheelchair from my car to hers - unfortunately it's beyond me to be of any help with things like that at the moment let alone do them myself, which I would have thought nothing of just a couple of months ago. And then there's the MRI at Springfield late afternoon. I have the four Diazapam all organised in their own pillbox so there should be no problems...
Nothing new, just waiting for the next MRI on Wednesday. And to hear from the neurosurgeon...
