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.

12/05/23 Nothing new

Still waiting to hear about that MRI and the possible involvement of orthopaedics. The only other thing of note is my CPAP mask. Ever since we moved here (new bed, new pillows) I've found it hard to get a good sleeping position that doesn't push the mask out of place and cause some leaking around the edges. Recently that's got even worse, not least because the velcro on a couple of the straps has got worn so that it starts to slip or even come unstuck altogether, causing me to take the mask off altogether while still barely awake at some point in the early hours. So I rang the CPAP people at Broomfield and they're going to send me a new mask "as soon as some more come in" - next week if lucky. But now it's got worse, because one of the powerful magnets that secure the straps to the body of the mask has come off, so I now can't fasten it on at all. So no mask and no CPAP until I get a new one...

07/05/23 Trying to get back into the habit...

 ...of rather more regular blogging.

Had the MRI of my left hip yesterday afternoon, and therefore missed the Coronation flypast over Chelmsford. I hear that the low cloud meant there wasn't that much to see anyway.

Played boules at Ongar this morning and met a couple of new players who've appeared since the autumn. Played two matches, won both comfortably. It was Market Day in the usual car park so had to use the other car park across the High Street:

Some new arrivals - four electric chargers at the expense of four "normal" parking spaces. And, as with most of these things around here, none of them in use. I know it's a case of which is the horse and which is the cart - do we need more chargers to encourage more electric cars, or does demand from electric cars lead installation of more chargers? - but it seems to me that a lot of them are going in the wrong places. It's the motorways and the major trunk roads where "range anxiety" really kicks in and people don't want to be queuing to get to a charger as well as the time taken to charge up. If you want to encourage electric car numbers (and I'm far from sure that battery electrics offer a real long-term solution), those are the places where I'd put them.

04/05/23 Games afternoon, and palaeontology:

 Miniature boules in the Sky Lounge:

I was umpiring that "match".

and carpet bowls:

and finally, our mysterious collection of fossilised dinosaur eyeballs...

03/05/23 Myeloma news

 At last! At last!!

Copying this from a post I've just put on the Facebook group:

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

I had my second 'phone consultation with my NHS consultant about 4pm this afternoon. All bloods ok again apart from a fractionally high FLC ratio, probably a result of the upper respiratory tract infection I was brewing up when the blood was taken. Nothing serious and my temperature never went up. Last time she ordered an MRI on my troublesome and erratic left thigh pain, and I had that done a couple of weeks ago on a cancellation. Results were in, and nothing found in my femur. But "incidental to the main scan" they found some degenerative change in my knee (not too surprising in mid-70s) and a "benign cyst" in my left pelvis. That's where I had the big lytic lesion that led to a pathological fracture and my myeloma diagnosis. It's not in quite the same spot but she thinks it might be connected to the healing / remodelling process for that lesion. Anyway, they've had a Multi-Disciplinary Team meeting, and she wants another MRI of my left hip and to bring Orthopaedics in as it's weight-bearing and they think there's significant risk of a fracture. I can only assume that means they're thinking in terms of some surgical intervention, possibly inserting some titanium reinforcement to go along with the bits of it I already have in my neck.

Three and a half hours later, the 'phone rang. Broomfield Hospital - they have an MRI cancellation, could I come in 10am tomorrow morning? Not at all convenient, as I have other appointments, so I asked when's the next available date? Saturday 6th, 2:10pm. It'll mean missing the back-end of the Coronation, but I can live with that.

NHS delays?? Not a sign of them. So far it's been wonderful, and faster-moving than the private system was. Maybe I'm just lucky, but I'm mightily impressed.

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

02/05/23 Plant

 I thought we had acquired a new pot plant near the lift just round the corner from our apartment

but a few hours later it had disappeared. Probably gone onto the balcony of the flat behind that brown door, which is being fitted out as a new show apartment. That's a pity, a few plants would brighten the corridors up. But Health & Safety would probably ban them as a trip hazard...

Found in a cupboard in the Sky Lounge:

Not the real thing, but possibly better than nothing. First game scheduled for tomorrow afternoon...

01/05/23 (2) Yesterday's photos

 Woke up 05:30 and couldn't get back to sleep, so...

Here's the scene outside before the morning traffic gets started:

Yesterday's photos:

Outside the Brewhouse and Kitchen near the train station. Very pleasant outside terrace, and a spectacular interior of the old Quaker meeting rooms. I'll get some photos of the inside next time.

Paper Mill Lock on the first decent day of this rather dismal Spring so far.

Heybridge Basin (a favourite spot) with the tide as far out as I've ever seen it.

No sign of the forecast rain this morning, so aiming to go to Epping for some boules...

01/05/23 Back again...

It's been even longer this time. Not easy toget back into the habit of regular blogging especially with nothing new on the myeloma front and the whole upheaval of moving home. Also - and I'm not complaining because I enjoy it (on the whole) and I believe it's important - my work as lead admin for the Facebook group takes up more and more time. At it today almost continuously from 2pm when we got home from a trip to Heybridge Basin until midnight. Sometimes starts to feel like a full-time job...

Anyway, finally got a cancellation appointment for the long-awaited MRI on my left thigh. No results through yet. 'Phone call with my new consultant due on Wednesday, should at least get the results of the most recent bloods.

The 'phone issue is at last resolved - I have a new one which is working perfectly, but I haven't had the promised call from the technical people at O2. The good man in the O2 shop advised me to email a complaint, and here it is:

Mobile no. xxxxx xxxxxx

 

A summary of the story:

Went online to register a recent change of address and order upgrade from my S21 Ultra to S23 Ultra.

Unable to do change of address on website, went to online chat.

Did address change, was assured that it was registered on system. Was asked if I wanted to do upgrade there and then. Said yes, as long as sure it would be delivered to correct new address as I no longer have access to old address. Was assured that yes, ok, delivery would be to new address.

Attempt was made to deliver to wrong (old) address….

‘Phone call to 202, more online chat, yes sir we’ll re-deliver to correct address.

Wrong again. Repeat several times, with variations. Finally, couriers (DPD) delivered phone through letterbox of old address without obtaining signature from anyone as property is unoccupied. I checked that no attempt had been made to deliver to or obtain signature from neighbours.

Although I was told on phone (202) that a “special team” had been assigned to recover the phone I never heard anything from them. Eventually went through two estate agents and got agreement to meet at the property when I recovered the phone. That was on April 8^th.

In my view, the decent standard of customer service would have been, at the first failure to deliver correctly, to say “Sorry sir, our fault, we’ll deal with recovering the mis-delivered phone and we’re sending you another one to the right address straight away”. I would have been happy with that. However, all suggestions along those lines met with point-blank refusal and all responsibility for recovering the phone was put back on me.

Then nightmare #2 began….

New phone would not connect to O2 network. Took it to O2 shop in Chelmsford (April 10th, I think) - at first reluctant to have anything to do with it because I got it from O2 online not through the shop. This distinction in my view is absurd and the very essence of customer unfriendliness. However…

Luke in the O2 shop concluded that the handset had been tagged as lost or stolen and therefore blocked, barred, banned or otherwise disabled – although I had never reported it as lost or stolen (whereabouts known at all times, just not accessible to me) and had never been told about any ban being imposed – another failure of customer relations. Luke eventually got it working by swapping the SIM into slot 2 as a temporary fix and, off his own bat, after I left the shop he initiated a “higher level” complaint to a “senior technical officer” and was promised that I would get a call back within five working days to discuss the problems and appropriate compensation. Ten working days later I have had no such contact.

Temporary is the right word for that fix as the phone went “Unable to connect to network” before I got home just 15 minutes away. Back to the shop…

Repeated with variations several times over next few days. The final straw was going to a hospital appointment for an MRI scan when the phone went “No network connection” again, leaving me unable to use the apps I rely on for public transport and bus connections. Thanks to that I was over half an hour late for the appointment, after which I went back to the shop…

Then, and at long last, I was offered a return and exchange for the phone, in which I had lost all confidence. It seems that somewhere in your systems, despite all the attempts to clear the bans and bars, something was still recognising the handset as stolen/lost (even though it never was either).

The second new phone was delivered efficiently and the first one returned. The second new phone is working just as it should. But I have not had that call back.

Believe me, this is the short version of the saga.

I have been without service. I have wasted any amount of time on fruitless chats and phone calls and visits to the Chelmsford shop – not always easy for me as I am a blood cancer patient with limited mobility. I have had more phone calls to deal with estate agents and get access to the old property as well as incurring more travel costs to get there. I have experienced considerable and very unwelcome stress which could have been avoided simply by doing the right thing much earlier in the saga. Until that last stage, the quality of customer support I have received from O2 has been completely inadequate and simply appalling.

I therefore believe that substantial compensation would be appropriate.

 

I look forward to hearing from you.

 

No reply to that yet either....

A few recent photos below. More about them next time. I have one more thing to do for Myeloma Support UK before I call it a night....