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!