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.

22/05/23 Orthopaedics at Broomfield

 An update on my left thigh / hip and the “benign cyst” identified in recent MRI scans:

I saw an orthopaedics consultant at Broomfield Hospital this morning. He took quite a detailed history, wiggled the hip joint around a bit, and sent me off for a pelvic X-ray. When I got back from that we looked at the images and did a compare & contrast with MRIs and X-rays dating back to the discovery of a big  (myeloma) lytic lesion in my left hip back in 2019. That had a course of radiotherapy which solved the immediate pain and walking problems (two sticks, very slow, very painful).

I have been led to believe from PET scans and other evidence that the lesion had largely or completely “re-modelled” itself so that my hip was for practical purposes back to normal and had been so for a few years.

It seems not. The cyst showing up now is a perfect match for the lesion of 2019 - same place, same size, same shape. There seems to have been no re-modelling. Why it is now being described as a cyst rather than a lesion is a mystery so far unsolved, but probably not important. You can see it on the image (not my pelvis, I found this one online and added the personalised stuff). 

The black area is the cyst, and it’s full of something that is not good hard structural bone. Probably some sort of proto-bony gloop. The base of the cyst lies very close to the top of the socket of the hip joint, and there is obvious potential for a rather nasty fracture there. The entire top surface of that socket should be embedded in good strong weight-bearing bone, but now that is reduced to the bit shown in white. Obviously that’s been enough to keep me going for the last four years, including all the heaving about of heavy boxes etc. that I did during the house move earlier this year, but now I know the weight-bearing area is so small, I can’t help being rather nervous about it. One fall, one ill-judged step off a high kerb, one over-ambitious lift…

So the good news is that it’s not progressing and it’s not giving me significant day-to-day trouble. The bad news is that it might very suddenly get a lot worse, and a repair job on a broken hip there would be difficult partly because there’s not a lot of good solid bone in the area to attach metalwork to, and also because one consequence of the radiotherapy in 2019 might be that it killed off a lot of “good” cells in the area as well as the “bad” ones, meaning that any kind of bone growth, including ideas like bone grafts or packing the cyst with bone chips taken from some other part of my skeleton or with an “artificial bone” matrix to encourage growth of my own bone cells might not work too well.

So it’s a “complicated” situation beyond the scope of Essex Orthopaedics, and I’m being referred to the Royal National Orthopaedic Hospital in Middlesex. You never know where your myeloma ‘journey’ will take you! The experts there will re-assess everything (new CT scan to be done at Broomfield first) and possibly a biopsy to find out exactly what is inside that lesion / cyst. Then they will suggest a way forward, which might include a custom 3-D printed implant. Shades of vet Noel Fitzpatrick and his TV shows – he always said that the real aim of his animal work is to develop the same techniques for people, and here I come….

Perhaps.

We shall see. And the mystery of that left thigh pain – mercifully now only a mere shadow of what it was - remains.

20/05/23 Cyst

 Here's the report from the second MRI:

This is obviously a bit nasty. A roughly egg-size cyst sitting just above the socket of the hip joint which means not only a high risk of a fracture but a difficult repair job afterwards because of not enough good bone to attach a replacement socket to. The good news is that I have a (cancellation) appointment with Orthopaedics at Broomfield 9am Monday morning. The secretary said "He wants to see you straight away". I think I've been walking around on a bit of a time-bomb for quite a while, without knowing a thing about it. Just glad I pushed hard for the right scan to be done and that the new haematologist agreed to push it through quickly. As I understand so far the options will be to put in some strengthening metalwork (but danger of it breaking through into the joint - not good), or packing the cyst with bone chips taken from some other bit of my skeleton, or "artificial bone" which encourages new bone to form. We shall see.

One question is whether the development of this cyst is enough to explain the (referred?) left thigh pain that started all this off. If not, still looking for an explanation of that.

A few other things to write about today, but leaving them for later.

16/05/23 Omelette

 (copied from a Facebook post)

I love the NHS, I really do. Twice this evening my attempt to produce an edible cheese and mushroom omelette was sabotaged by NHS phone calls. I just missed the first one (took too long taking two pans off the heat and turning the rings off), and the second came in just as the omelette was seconds away from perfection...

They've had another MDT meeting to consider the result of the second MRI of my left hip. I have a benign cyst in it, which I knew already after the report of the first MDT meeting about the first MRI. And they're referring it to orthopaedics, which I also knew already. "Any sign of an orthopaedics appointment?", I asked.

"Sorry sir, I don't know anything about that".

In other words, a fair amount of NHS time and effort expended for no obvious benefit at all.

The omelette, by the way, survived the delays surprisingly well.