19/12/23 Over

Two more unarguable negative tests, yesterday and this morning. So I'm declaring myself Covid (and mask) free. And tomorrow I can resume my statin and amitriptyline, had to have eight days off them because of interactions with the Paxlovid.

17/12/23 Not such good news

 Today's test showed a very faint second line. It's not over yet...

16/12/23 Negative

 Paxlovid works!

14/12/23 Still Covid

On the evidence so far Paxlovid is something of a miracle drug. No side effects worth mentioning, and symptoms almost completely gone. Just an occasional chesty cough lingering on, and blood pressure still up by about 10 points both top and bottom (which still leaves me in ok territory). But I did another test this morning and still positive. Will try again on Saturday (2 days).

12/12/23 COVID

COVID. My wife and I have both avoided it for four years, but it has struck at last - and at just about the most inconvenient time possible, but that's another story.

I now get my free tests from the pharmacy (because I'm immune-compromised with a blood cancer). I took a test, it was positive, I tried to report it...

You can no longer report free-from-the-pharmacy test results online. I have no idea why not, but there it is. My most recent NHS letters and the gov.uk website say report via 119 (or 111, depending on which letter you read), or to GP. I tried 111, and got routed through a long and tedious voicemail system which eventually took me back to the beginning - you can't report these results online (or, it seemed, anywhere else in the system).

Tried 119. Same result.

Tried GP surgery. Usual voicemail menu followed by "We are experiencing an exceptionally high volume of calls..."

Despair.

BUT - phone answered by a receptionist almost straight away. I reported the result, she asked a few questions, went off to speak with colleagues. Within five minutes rang back, referring me to Infectious Diseases Unit at Basildon, where they will make decisions about anti-virals (my guess is that my symptoms so far are too mild for that, but have to go through the routine).

Now awaiting a call from Basildon.

Usual government/NHS mix of impressive efficiency and complete hopelessness.

UPDATE: Basildon called, I'm ok for antivirals and 5 days of Paxlovid will arrive by courier this evening. 10/10 to the NHS for that!

10/12/23 Various updates

 Nothing big has happened for a while, but...

Had some sort of infection for the last few days - cough, blocked-up nose, generally feeling lousy, energy levels minimal. Despite that scored 100 for both of the last two nights.

Still haven't seen the MRI report from the last scan - haematology are supposed to be sending it to me. I think I'll have to give them a nudge next week. But did talk about it with my haematologist, and short summary is no new lesions but a number of quite bad disc issues in lumbar spine - not something that has been commented on before. Scan has been sent to Stanmore but no action plan from anywhere yet. May have to wait until next Stanmore appointment January 18th for that.

Back / mobility has been bad for the last two days, which I'm blaming on stretching up to put some Christmas decoration up high. Was all lumbar region yesterday, bouncing up and down everywhere earlier today. I've put myself back on the Co-Codamol for a while, which does seem to be helping. And definitely feeling a bit more human now, even managed to shift a pile of paperwork that's been accumulating for months. And now to the kitchen...

20/11/23 100

CPAP scores are very variable these days - not quite sure why, except that I don't often hit seven hours a night - but last night's was a good one:

2 "events" an hour is good, as I started with 15 and the target is 4. That means it's working.

Still awaiting results of the MRI done on the 7th. The blood tests came back normal, including PSA, but that is such an unreliable test that it means little without more evidence, which the MRI should provide. And there are of course other diagnostic procedures for prostate problems which I hope to avoid....

The main thing now is persistent low back pain / stiffness / soreness across the low back. No more problems getting out of bed - that was rather scary. Have to drive to retail park etc. a bit later (11:40) but may try another Oramorph / CoCodamol cocktail after that. 
Urination still not completely normal - combination of low flow and occasional urgency.

05/11/23 Better again...

Another update: mobility much improved - 10 mins to get out of bed yesterday (with help from frame); this morning, straight out almost as normal, no need for frame. Just as well, because I'd left it on the other side of the room. Also, first-thing urination back to normal, or nearly.

Oramorph and 8 Co-Codamol a day working wonders, but Co-Codamol having its usual effect on lower intestines. Praise be to Laxido!!

04/11/23 Better..?

20 minutes from waking up to standing up this morning - partly the result of practice, partly because of the frame. Would probably have been at least 30 minutes without that. Staying with maximum 8 C-Codamol a day and Oramorph at need. One 5ml dose this morning.

Good news is successful first-time urination this morning.

Sue's in for her cataract, driven in by a very helpful fellow resident here. No news as yet.

03/11/23 Quite a day...

I'm not going to try to write this all out again, so here's a compilation of today's posts on the Facebook Myeloma group. It took 45 minutes this morning from waking up to standing up, and only did that with help from the House Manager here who brought a walking frame up from storage downstairs. That made things much easier.

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Going to A&E in hope of x-ray as worse this morning. Ambulance wait may be 4 hours...

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Update: Have had a twelfth-degree interrogation over the phone by a "clinician". It would have helped if she knew anything about myeloma.

Eventually agreed transport to hospital but no promises about what happens then.

Six hours....

One of the questions asked was whether I was feeling agitated. You can imagine...

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Time for yet another update already. But first, sincere thanks to all those who have responded to and commented on all this. I really appreciate it.

Two ambulance men arrived, took my BP and etc.. Not surprisingly a good deal higher than usual!

Long conversation, upshot is they see no point in taking me in to lie on a trolley for hours (A&E already overwhelmed today) and they "very rarely" do x-rays for back problems anyway these days, so better to hang on for the MRI on Tuesday.

They did organise a bottle of Oramorph, which Sue is about to go and collect for me, bless her.

And to top it all, the House Manager here (who was very helpful getting me on my feet this morning) set off the fire alarm while doing some ironing. That meant the lifts automatically stopping working. Just as our weekly Tesco food delivery arrived....

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I've got the Oramorph and have just treated myself to a rather large 5ml.

The lifts are working again but the hot water and heating are both off. The fire alarm turns them off but re-ignition doesn't work as it should. Engineers are expected...

And now for an aspect of all this I haven't mentioned yet. Usually the first thing I do when I wake up is get out of bed, go to the bathroom (just a couple of non-metric yards away) and urinate. All normal. But for the last two mornings when I've eventually got to my feet - half an hour yesterday, three-quarters today) I've produced absolutely nothing. Not a drop. No sensation of wanting to go but can't, just empty-bladder nothing.

Half an hour later, all back to normal.

There are several possible explanations, one or two of them not very pleasant and with potential long-term implications. I think we can rule out prostate as no other symptoms apart from occasional urgency, and pelvic CT last May reported "Visualized parts of urinary bladder , prostate and rectum appear normal". There may be pressure on the relevant nerve roots right down at the base of spine, meaning that something has changed in that area where we know I have several small lytic lesions.

Talked about this with today's ambulance men and basically they said not our problem, keep a diary and take it to your GP. So I called the surgery and got a phone call back from a doctor inside an hour. She wants "urgent" diagnostic blood tests. I have to pick up the form Monday morning and then try to get "urgent" through the heads of the people at the blood test place "Chelmsford Health Hub". Wish me luck!

Myeloma, the gift that keeps on giving...

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Definitely an "interesting" day...

02/11/23 (2) NHS update

Can't remember when I last did more than one post in one day!

After giving up two or three earlier attempts, got through to the GP surgery at 3:30. Told the receptionist the same story. "Can you come in this afternoon? 4:30?" Sue was otherwise occupied, so followed in her car as soon as she was free. I've got one of those removable handle things that fit into the car's lock mechanism on the door pillar, and not for the first time it saved the day. Don't think I would have got into the car, or out of it, without that "pink thing" as we call it, the original red plastic around the handle having faded long ago.

GP prescribed painkillers and precautionary laxatives, and while I was there Broomfield phoned to say they had organised a "fast track" MRI for Tuesday morning (7th) and a Multi-Disciplinary Team meeting (presumably including Orthopaedics) to chew over the results and decide on a plan. So now we wait, and cross fingers that getting out of bed in the morning won't be as difficult as it was today.

All credit to the NHS for speed. As so often, the clinical side works far better than the admin side.

02/11/23 The NHS does it again

A couple of weeks or so ago I had an NHS letter saying that my next consultant appointment was cancelled and that a new appointment would arrive. Still waiting...

This morning I was on the phone to the Haematology secretaries (see below) and I mentioned this. 

"Oh yes, you've got an appointment on the 28th, 11:50".

First I've heard of it. The problem is that I need to have blood taken at least a fortnight ahead, in time for all the results to come through. I went straight to the online booking for the blood test "Chelmsford Health Hub" five minutes up the road. First available appointment on the 13th, just in time... But only because I made that call, and I wasn't even trying to talk to Haematology.

Yet another NHS admin cock-up. Not the first by a long way, won't be the last.

Some possibly myeloma-related developments, starting yesterday evening. Here's the text of a message to the Royal National Orthopaedic Hospital secretaries:

"Hello again,

When I saw Mr.Gerrand on 9th Oct his parting message was to get in touch if I had more pain and difficulty walking. Both conditions met since last night.

I tried to contact you by 'phone and left a message which I hope will reach you. Going a bit further:

1. The morning after that appointment I managed to fall out of bed and land on my left hip. Seemed to be no damage beyond some impressive bruising.

2. Yesterday 1 Nov, all normal morning and afternoon, went for a walk pm, nothing out of the ordinary. But some low back pain (across top of pelvis and lumbar) developed during evening. A bit difficult in shower but manageable. Later tried to get out of "office" chair to go to bed, couldn't do it. Took a good 15 mins to stand up and make it across room (with stick). Another 15 to get out of bed and stand up this morning, and same again to stand up from chair after breakfast. Getting off WC not easy or straightforward either! Walking v.slow shuffle but does get a bit easier once I get started. Occasional sharp jabs of pain, very reminiscent of walking problems with that big lesion and "extramedullary growth" when my myeloma was diagnosed 2019.

3. Hard to tell what's going on. Mix of muscular pain and deep "bone pain". Not directly in left hip but suppose could be referred pain and there are a number of smaller lesions in pelvis and lower spine that might be causing problems. I hope that CT scan which should have arrived from Broomfield Chelmsford by now might shed some light on those other lesions and etc. Broomfield promise they've sent it!

4. Arranging osteopath appointment in the hope of getting some relief even if temporary. Just heard - tomorrow afternoon. Will also contact Broomfield Orthopaedics and GP."

Shortly after sending that email Broomfield Haematology called and it turned out that I didn't leave a phone message with RNOH Orthopaedics this morning after all. My eye must have skipped a line in my contacts (tempted to say mind distracted by the pain in my back...) and the message went to Broomfield Haematology instead. And that's where the story starts. Not a great way to start a morning!

20/10/23 Anniversary, and CT report

Six years to the day since I fell down those steps at Liverpool Street Station and broke my shoulder. And, until we didn't realise it for years afterwards, my neck as well. Hence the titanium metalwork that was very successful inserted in Jan 22.

Finally got hold of the report of the CT scan done last May and which should have been sent to the RNOH long before my recent appointment. It should be there now...

The main thing, I think, is the references to other lesions in the area - first I've heard of those since the early days. And there is no mention of any bone re-growth, re-mineralisation, or the like. All the rest is only to be expected with advancing years. And good to know my prostate looks ok!

14/10/23 Hip x-rays

The images arrived from the RNOH in this morning's email. The two (one taken lying flat, the other halfway onto my right side, constitute what is called a "Judet view". M.Gerrand appeared interested in the flat one only. Clicking on the images will give a larger view.

Have to say the right hip joint doesn't look all that great to me either... That's the one on the left side of the image.

This is the other position:

This is the relevant bit of the first one, zoomed in:

and again, annotated:

10/10/23 Not a good idea

 08:21, not a time when I often do blog updates...

What's the worst thing I could possibly have done before breakfast? Fell out of bed and landed on my left hip. It's a long way down, thanks to the 11" "orthopaedic" mattress. 230 mornings since we moved in, and the first time I've done that. 

Seems to be no serious damage done, but I can't keep on falling on this hip. Something will fail eventually.

09/10/23 RNOH no-decision decision

Here's the news from my long-awaited appointment at the Royal National Orthopaedic Hospital's Assessment Unit in central London. In short, the decision is not to make a decision.

Yet.

Not helped by the fact that the CT scan I had done locally in Chelmsford and in double-quick time back in June, specifically to provide more evidence for today's consultation, hasn't arrived at the RNOH yet. You could have glued the report to the shells of a convoy of snails, and it would have made it from Chelmsford to London by now... Just another example of the terminal incompetence of the NHS over the simplest of administrative jobs.

Am I incandescently furious about the waste of my time and money going to this appointment when the basic information needed for it hasn't been delivered in time? I'm trying to hide it, but you can guess... Not to mention the waste of consultant time.

However, it was not a complete waste. I had a couple more X-rays done. Consultant thought there was a possible suggestion of some new bone growth since the last X-rays done in May, but I couldn't see it. But what he did spot, and no-one else has commented on for the May X-rays or any earlier imaging, is a perfectly clear small fracture of the acetabulum (socket) of the hip joint - see the image (it's not my pelvis, it's an image I found online!) The green dots show the socket, the area outlined in blue is the lesion, which is a fluid-filled cavity where there should be solid bone, and the red X marks the fracture.

Consultant's position is that as I am getting no pain from the hip at this stage although mobility is reduced, and as I've lived with this issue for four years now (while believing that the lesion had largely repaired itself for most of that time) there is no cause for immediate intervention. I replied that even so, the joint is clearly unstable / precarious / whatever and liable to catastrophic failure with another fall or any other incident, and I don't at all enjoy living with the constant awareness that one mis-step or miscalculation of a bit of lifting could be all it needs. On top of the constant awareness that the myeloma might relapse at any time and complicate the issue further. I would want to intervene as soon as possible and get this sorted out rather than wait for it to turn into an emergency without, perhaps, the time to plan and perform the best possible option.

On the subject of "best possible option", consultant thinks that an orthodox hip replacement would be the way to go, although I can't see how there's enough good solid bone there to take one - and that was the view of the orthopaedic surgeon in Chelmsford, and the reason why he referred me on to the RNOH...

Be all that as it may the decision, such as it is, is to wait and see how it goes for another eight weeks, at which time we review, re-image, and re-think. A particular point is whether any pain develops, so I shall keep a particularly close record of that. And wait another couple of months...

Meanwhile, I understand that a crack team of NHS tortoises is at this moment being dispatched towards Chelmsford to collect the CT scan from June and whoosh it (in tortoise terms) towards 45 Bolsover Street...

I have also requested copies of today's X-rays. Needless to say there's a mountain of bureaucracy to deal with, they can't just email the images straight to me, but I hope to have them within a few days. Or weeks. I'll post them when they arrive.

06/10/23 Stanmore update

Early the following morning I got a reply to that email and it really was the right secretary after all. Yes, it's definitely at Bolsover Street, and I should have had an email with all the details. I've had a very thorough search of all my email records - no trace of it. I asked her to re-send and that one arrived straightaway. And the same thing arrived by post. Belt and braces, but should never have been needed!

04/10/23 Stanmore, NHS...

 Next chapter in my long-running saga...

My appointment at the Royal National Orthopaedic Hospital in Stanmore (Middlesex) is now less than a week away, on Monday. The original appointment letter, which I have somehow mislaid, said that another letter with more details would arrive "closer to the time". It hasn't arrived, and considering the combined inefficiencies of the NHS and the Royal Mail, quite possibly never will.

So I 'phoned the RNOH and after a couple of false trails got through to somebody at Joint Reconstruction who could answer questions about my appointment. "Yes, he confirmed, 2:10 on the 9th, see you then."

"Hang on," I said, "can you tell me the name of the doctor I'm seeing and give me a room number so I know where to go?"

Long silence...

Eventually, "It's Mr.Gerrand."

"OK, can you give me a room number please?"

Another even longer silence......

"It's not here, it's in Bolsover Street." That's the RNOH's other site in central London, near Regent's Park and Harley Street.

"Thanks for telling me, otherwise I'd have turned up at the wrong hospital."

The Bolsover Street place, I've since discovered, is the RNOH's Assessment Centre. At least that makes some sort of sense.

I went online, looked up Mr.Gerrand, and found both a 'phone number and a name and email address for his secretary. Obviously I wanted confirmation that the appointment actually is for Bolsover Street not Stanmore, so I rang the secretary's number. The recorded message gave a different name and said she was secretary for two completely different doctors, not including my man. So I left a message anyway asking for a call back to confirm the appointment. It might happen. And there again it might not.

Now going to try an email to a secretary who quite probably no longer exists. Or no longer works for Mr.Gerrand anyway. Also got to cancel the "Just Park" parking space I had booked just a couple of minutes walk away from Stanmore station.

Never a dull moment...

A bit more about the Royal National Orthopaedic Hospital saga:

Looking up Dr. Gerrand online, I found this link to the Daily Mail back in 2014. I had no idea things like this were being done nine years ago. It also fits with what my local orthopaedic surgeon said when referring me to Stanmore, that some such implant was probably the best way to go.

Dr.Gerrand in the DM 2014

15/09/23 Negative

I had the X-ray after that fall exactly eight weeks ago. At the time I was told three to four weeks for the results. My GP said six to eight weeks. So today I 'phoned the surgery - yes, the result is in.

No sign of recent fracture or healing. Which doesn't really surprise me, as apart from occasional twinges, the pain subsided quite quickly. I didn't ask how long they'd had the results - (a) I'm not sure I really want to know, and (b) if it's more than a couple of days I doubt I'd get a straight answer...

GP wants to talk about it, so 'phone appointment on Monday. If that result is all there is to it, I'm not sure I see the point. Will find out on Monday.

01/09/23 Cars, not myeloma

Yet again, there's just nothing new to say about my myeloma or my hip or anything else of medical note, except a bit of an Upper Respiratory Tract infection that hit just after the Writtle Jazz Festival. As usual with these things, the cough is still hanging on...

We had a (very) minor collision while my car was parked – fully inside the marked space – in a motorway service station car park. While we having a coffee inside a Citroen Berlingo drove into the space behind and didn’t stop in time. When we came back the Berlingo was right up against the back of my car, and the driver was in the back. She reversed away, the plastic panel below the boot lid popped back out, but the middle of the bumper below was left sticking out by just a millimetre or so. I tried to push it back but being reluctant to push too hard and risk more damage, failed.

Took the car to the Chelmsford dealer (a large national chain) for another job and asked them to quote for the bumper. They said the centre bracket was bent and needed replacing with a new one, and that meant removing and re-fitting the entire bumper. £30 for a new bracket, £163 for labour, and £18 for a box of rivets. Total including VAT £253.

Looking for a second quote, went to a well-known accident repair place in Chelmsford, which we’ve been happy with for a couple of small jobs in the past. Man got on the ground, had a look up, took some photos on an iPad, and said there’s no centre bracket there, what you need is a new bumper. We’ll email you a quote.

Quote didn’t arrive, receptionist on phone said we have to wait for the estimator to have a look.
Quote arrived. No mention of bumper replacement. Materials £30 – exactly the price of a new bumper bracket, and surely way too low for a complete new bumper. Total £262, and obviously the Estimator, who had at least half a dozen photos to look at, disagreed with the first man…

Did what I probably should have done in the first place and went to the small garage in the village where we used to live. He took a look, agreed that there is no centre bracket, and used his long experience to deliver a couple of well-judged thumps. The bumper is now perfectly back in place, at cost of precisely £0 – although I did give him another small job to make it worth his time.

So who can you trust? Very obviously it’s the main dealer that comes out of it worst. Draw your own conclusions…

12/08/23 Back again...

 I got into the habit of blogging at night after my shower but now I always seem to have other things to do. If it isn't the Facebook group demanding time it's something else, even if that something is watching Hamilton on Disney+ for the umpteenth time. I've become a little obsessed with it. Anyway, finished it last night so...

Good news is that ether my hip wasn't as damaged as feared, or it's healing well. Mobility is well on the way back to normal and pain is now minimal. But still waiting for the x-ray results!

Had a couple of days in Dorset - stayed at a McCarthy Stone place in Ferndown, and as owners that costs us just £25 a night. Same anywhere in the country. Upheaval of going away is lessened because we no longer have the (much missed) cats to worry about, but I'm still ar from keen on it. And now I have a CPAP machine to carry around as well. Weather could best be described as variable.

Much time occupied lately with my new main PC (this one), which suddenly died completely. No lights, no beeps, nothing. Too long a story to tell in every detail, but eventually and by accident found a couple of connectors inside had come loose. Put them back, and everything restored to normal! But not good for the build quality, inspection, and quality control of the people who've built all our computers to my specifications for some fifteen years now...

Some photos in fairly random order:

Kingston Lacy House

Old haunts - Sandbanks. I remember it from before the property values went crazy

Old school

Excellent risotto (background)

With my sister in their garden

Sue and me with friends at Kingston Lacey

On the Observation Wheel at Bournemouth Pier

Overlooking Poole Harbour

The (local) Writtle Jazz Festival

19/07/23 NHS success and 100%

Two posts in two days!

Following on from yesterday, just posted this on the Facebook myeloma group:

You may remember that I have a large myeloma-induced lesion / cyst in my left hip, above the socket. That means I'm at high risk of a rather nasty fracture, and I have an October appointment at the Royal National Orthopaedic Hospital to explore surgical options for repair. All very well until I tripped over a paving slab yesterday and fell heavily on the side of my left hip. "Oh s**t", I thought on the way down, "I've destroyed my pelvis altogether..."

Fortunately not that bad.

A couple of kind people helped me up and spotted the hearing aid dislodged from my left ear. I sat on a handy low wall for a while and  - slowly and carefully - made it back home. Then the adrenalin faded away and it started to hurt, partly in the left groin - just like the pain when I fractured my hip years ago that led to finding the lesion and my MM diagnosis, if a bit less acute. Lots of other pains here and there, and walking around the flat very slow and difficult. I took some ibuprofen and decided to leave it overnight. Soft tissue damage (definitely!) or something worse (possibly)?

No improvement to speak of this morning and thought that a precautionary X-ray or CT might be a good idea so 'phoned Orthopaedics at my hospital (Broomfield, Chelmsord) as the consultant there had told me to get back to him in event of any problems. Naturally he's off on holiday and his secretary's on annual leave until next week. 

The receptionist I spoke to wanted to ask colleagues and said she would call back. And inside five minutes she did, with three options for me. Call the RNOH and ask to bring the appointment forward, try again with the secretary on Monday, or call my GP and get him to arrange an X-ray. 

So I organised a cup of coffee and a few biscuits to sustain me through a long "Your call is important to us, you are number 38 in the queue..." and rang the GP surgery.

Answered inside five minutes, and offered an emergency appointment (with my own GP!) in forty minutes.

Met my new GP for the first time - absolutely lovely man who immediately issued a "Super-Urgent" X-ray request which should produce an appointment in a few days. He gave us a second copy of it to take to A&E if nothing by Friday. He suspects a pubic ramus fracture (and so do I, although not a major one).

I asked the doctor if he was familiar with myeloma. He said yes, had diagnosed it maybe ten times and we had a quick conversation about paraproteins and free light chains. He also said he thought I had been completely right to decline transplant!

So - although I haven't had that X-ray yet - an absolute 10/10 for the NHS on this - both hospital and GP. The NHS may well be broken but it isn't dead yet.

The new CPAP mask I bought recently is a big improvement. It's quite some time since I had one of these!

18/07/23 Fall

 I put this in the Walter House residents WhatsApp group his afternoon...

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Uneven pavement warning! After Xxxxx's recent adventure...

Went for a walk this afternoon, intending to do once round the Cathedral and back. Got past all the raised paving slabs on the left side of the road ok (feel I know them all by name by now), then tripped over a slightly raised one near the Recruiting Office. Went straight over forwards, despite the stick in my right hand, with a bit of an anti-clockwise twist and landed hard on the side of my left hip.

The bad one which doesn't have a lot of bone left in it....

Moment of sheer panic...

Two very kind people - middle-aged woman and young Asian man - rushed to my aid and helped me back to my feet. The lady found my left hearing aid, which had been dislodged from my ear. Without her, I would almost certainly not have noticed it had gone and would now be starting a claim on the insurance. No harm done, the hip is intact but a few muscles are complaining and I have a small graze on my little finger. The automatic fall detection on my personal alarm (Careline365, not the McCarthy Stone one) worked and connected me to the call centre while I was still on the ground, which I think is pretty good. I'm being cautious and cancelling my Tuesday boules night in Brentwood for this week.

The moral of this story is to watch out very carefully for those raised paving slabs. There are too many of them and a moment of inattention...

Nevertheless, walking is healthy exercise and good for you. Sometimes.

"Be careful out there."

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Followed by:

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Thanks all for the comments and concern. Some muscle pain on the left side but nothing worse, I think. Moving around rather gingerly and have just taken a couple of ibuprofens.

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Now wondering whether I should contact Orthopaedics at Broomfield - or even my so far unseen new GP - to see if a precautionary X-ray or CT might be advisable... Will see how it feels in the morning.

12/07/23 Still in remission...

 It's been a long time again, but very little of note has been happening. Life in the new place is settling into a steady pattern, we've been out for a few meals and I'm playing regular boules again at Ongar, Epping, and Brentwood where last night I paired up with a Frenchman and we beat another English-French pair 2-1, which makes up for Monday when my side lost by the opposite margin. Haven't been back to Birchanger yet as the drive is now a bit longer than it used to be, but do intend to make it a few times before the season ends.

Had a 'phone consultation with my new consultant today - nothing new in the bloods except a message that I should hydrate a bit more. I'll try, but I'm not good at it. Good news is that the CT of my hip showed no sign of new disease. It's just a matter of waiting for October...

21/06/23 Southend

Went to Southend for a bit of a walk along the front and some lunch. There's only one lunch to have in in Southend so we went to a place we've used several times before for fish & chips. Disaster! Chips so underdone as to be close to raw in the centre. We had to send them back.
Then took the train to the end of the pier. At 1.3 miles long it's too far to walk these days. I thought this photo was worth posting:

And when we got back to the car, we had a parking ticket. For parking outside a marked bay. Well, the markings were so faded as to be near invisible. We have photos and are challenging the ticket...

17/06/23 Anchor

Nothing new of any significance, just some warmer weather and lunch today at the Anchor on the banks of the Crouch. Excellent lunch it was too. I had a fancy mushroom fusili, and the Eton Mess in the photo was Sue's not mine. I had the out-of-focus blueberry cheesecake in the background. All photos by Sue, and taken from a Facebook post.

11/06/23 Marks Hall

 Just some photos from a beautiful day at a favourite place.

080623 Numbers

I now have a collection of five hospital numbers from five different hospitals, and that doesn't include Princess Alexandra or Guy's. I probably have numbers for them as well somewhere in my records, if I didn't shred them when we moved. So a possible total of seven from adult life, eight if we go back far enough to include Poole - that one definitely lost in the mists of time, if I ever had one. Another sign of getting older, I suppose.

08/06/23 Appointment

My appointment at the Royal National Orthopaedic Hospital came through - October 9th. Rather longer than I'd hoped for but that's the way the NHS is these days. Perhaps I'll get lucky with another cancellation. One slightly worrying thing is that the orthopaedic surgeon I'm seeing has his specialities listed as sarcoma and metastatic disease. I don't have the slightest reason to suppose I have either of those and if a hint of one of them had appeared in that recent CT scan, my unofficial medical adviser has quite rightly pointed out, I would be on a 2-week urgent cancer referral. But the stupid worm of doubt in my mind won't accept that...

Boules at Towe yesterday went quite well - played two, won two on  a very difficult stony "terrain" where a lot of the throws went off at 45 degrees (or worse) on first bounce. Fortunately my partner was a very good shooter, and that's invaluable on such tricky ground.

I was not put into a good mood on arrival, because the car park had been re-decorated, courtesy of some morons and the local foxes:

Also had a copy of the clinic letter from the Springfield orthopaedic surgeon. He says I should continue using a stick and avoid putting any extra load on my left leg. I had worked that out!

31/05/23 CT and bus

Had a phone call yesterday offering me a cancellation appointment (another!) for a CT scan at Broomfield mid-day today.

We thought moving to within a short walk to the bus station and regular buses to the hospital would make life easier….

Had an appointment at Broomfield Hospital. Checked the options out on Google Maps and on the First Bus app. Experience of the previous two times told me the bus supposed to arrive outside The Ship never does (or not on time, anyway) so went straight to the bus station for the C1 shuttle, due to leave 11:48 and arrive at the Hospital 12:07. The digital board said 11 mins, so I took a walk around the station and by the time I got back it was down to 4 mins. It stayed on 4 mins for 5 mins, then went down to 3 mins and eventually 2 mins, after which it went back to 4. No hint of anything other than light traffic. Eventually it changed to “Due” for a while and then disappeared altogether in favour of a couple of other buses in 17 mins and 60 mins time. Then back to 4 mins and then – without any further change, the bus appeared at 12:13, 6 minutes after it was supposed to arrive at the hospital…
The information on the app was equally disconnected from reality as far as I could see.
For the first of the two previous hospital trips, the bus never appeared at The Ship so I walked to the bus station and found another bus which eventually deposited me at the hospital after a long and intricate journey around the housing estates. That made me 15 minutes late for an MRI scan. Second time, no bus at The Ship again, nothing at the bus station, so no option but to spend £16 on a taxi. At least I was on time for another MRI. Today I was just in time for a CT, but only because I left home over an hour before a journey that shouldn’t have taken more than twenty-five minutes.

This is with all the supposed benefits of modern technology. GPS tracking, electronic boards at the bus stop, apps on your phone. Put them together and what should be a seamlessly integrated and perfectly efficient system falls into chaos. The old system with bus conductors, punched paper tickets, and printed timetables worked better. Further, this is no way to get people to abandon their cars for public transport. If I’d had my car keys in my pocket I’d have walked back home and got the car. As it was, the extra few minutes needed to go up to the flat and get the keys then go down again made me hang on that bit longer at the bus stop, and if that bus hadn’t finally appeared it would have been a taxi again. Could be temped to think that the whole thing is a conspiracy to get rid of the expensive bus services and drive everybody into the arms (or car doors) of the taxi operators…

 I wasn't in the machine more than a few minutes but by the time I got home - a much simpler journey - I had an email from "Alliance Medical" asking for feedback and for me to 'tell them about my experience' and 'would I recommend them to a friend'.... One of the many curses of modern life!

29/05/23 Wall

No more myeloma developments. My left leg is still attached and now I've got over the initial shock of that X-ray I'm 95% back to normal getting around, just being a bit more careful and definitely not heavy lifting. Nothing yet from the National Orthopaedic Hospital or from Broomfield about a CAT scan. Hoping to hear something this week.

Some photos. First one is the usual Maldon view but this time with then tide as low as I've ever seen it. Sausage roll for lunch, naturally.

Another walk, this time in Chelmer Valley Nature Reserve:

Would be good for e-biking, if we still had the bikes...

This is the garden at our new place, starting to look good now:

And the "living wall" at the other side, next to the traffic. Installing this was a condition of planning permission. It's supposed to improve the air quality.