Monday, 18 November 2024

18/11/2024 Much much betterer

 Not the myeloma, or not as far as I know. Next haematology consultation is in early January, and I've booked the blood draw for 18th December because of Christmas and New Year getting in the way. Instinct says the PPs will be up over 5 but who knows?

Other things, however, are improving. My HbA1c (diabetes) number is down to 43, and my watch has just reminded me that today is - at long long last - the final session. Or would be, if I hadn't pulled out of the ridiculous waste of time a couple of months ago. Weight is also going in the right direction, now down a trifle over a stone but aiming for a lot more. Or less, depending on how you look at it.

Yesterday week five of us from Walter House played some boules at the Falcon Bowling Club, and I was the worst I've been probably ever. Couldn't control my right wrist and fingers at all, and couldn't get a ball anywhere near where I wanted it to go. And then you start changing your mind about the shot you want to play halfway through the swing and it goes totally wrong...

Been bugging me all week. But we went again yesterday and I was back to normal - some good balls, some not so good, but very few hopeless. And my side won the doubles 13 - 12, so much happier now! Nevertheless, it's getting colder and I don't think my season will last much longer, which means less exercise and (even) more Nordic walking up and down the corridors...

Tuesday, 22 October 2024

22/10/2024 Results


Spoke to my consultant on the 'phone earlier.

The CT scan showed no new disease. Good.

The bloods showed everything (liver, kidneys, etc. etc.) all good but paraproteins up from 2 in August to 3 this time. Not really one thing or the other, so it's another two months of wait'n'see..


But..

My consultant said that the hospital had switched to a new and more sensitive paraprotein test method in July. So we have the possibility that all those zero/undetectables with the old test method might have been small positives if they had been done with the new improved one, and the recent "increases" might not be real increases at all.
I tried to ask some of the questions which spring to mind, but it was over the 'phone and she rather obviously didn't want to say any more. I'll be better prepared with some good questions next time.
Asking if anyone in the Myeloma UK world has heard of changes in the PP testing methods. A quick search hasn't turned up anything.

Just over a week ago I was getting my exercise and daily steps with the Nordic walking poles up and down the corridor here and I somehow tripped over the carpet and had quite a heavy fall. The top of the left pole hit my nose (but luckily missed my eye) - photo taken a few days later when it had started to heal but still very tender. I think I was a bit dazed by that for a few seconds and I have no memory of what happened to my right hand. It was OK for a day or two and then I got serious pain in the right wrist and could barely use that hand for anything. Suspecting a scaphoid fracture (common result of falling on an outstretched hand) I went to A&E on Friday. They took X-rays which the tech said were "inconclusive", and they gave me a Velcro-operated splint to wear. I hate Velcro...

















Anyway, it's got better and I was called back to the Fracture Clinic at the hospital and told definitely no fracture, just inflammation and bruising but "a lot of degenerative damage" around the base of the right thumb. Entirely normal for my age, I believe. Just an exceptionally (and excruciatingly) bad case of the "flare-ups" that I get in that area every couple of months or so. And proof, as I've always believed, that exercise is a dangerous habit and really bad for you.


Nevertheless, did 7,000 paces in the park this afternoon and have lost about 7kg over the last two or three months, which I'm pleased about. More still to go! Have I mentioned pre-diabetes? That's for another time.
The wrist experience also involved a long story, yet again, of NHS low-level admin incompetence (and, I have to admit, some of mine mixed in). Basically I was sent to the wrong place and the wrong room at the wrong time. So next time you hear about patients missing appointments, take a moment to wonder whether they actually got the right details of where to be and when. In my experience, quite possibly not.



























Oh well, another couple of months of not knowing. That's myeloma for you, always a new twist to deal with.

Wednesday, 16 October 2024

16/10/2024 Tense, nervous, twitchy...

 Had my latest haematology blood taken last Friday 11th, results due next 'phone appointment with my consultant on the 22nd so it's slightly scary time again. I'd almost forgotten what that's like.

I think the problem is that before the first relapse you can at some level kid yourself that it's never going to happen, that you're the first ever myeloma patient to remain in remission indefinitely...

But when it comes, as you know rationally that it inevitably will, you can't pretend any more that you're any different from everybody else. Relapse, remission, relapse, remission, relapse, remission... repeat ad lib... death.

Well, years ago we said that each remission gets shorter, each relapse is more difficult to treat, side-effects get worse. That may not be quite as true as it was now we have new treatments with new-fangled bi-specific and even tri-specific monoclonal antibodies, and effective, reliable and cost-effective gene therapies get closer and closer. Slowly. 

On the other hand, the dreaded dexamethasone is still hovering in my future...

We shall see. With luck the PPs will be back down to undetectable and the remission will continue, the evil day will be pushed a bit further back. But it's still a tense, nervous and twitchy time waiting for the 22nd.

Tuesday, 20 August 2024

20/08/2024 Here we go again...

Slightly less good news today.  Had a face-to-face with my NHS haematologist.  All bloods are good except that, after two and a half years of "undetectable", paraproteins are up.  But only to 2. Might be just a blip. Might be a measurement error. Equally, might be the start of a trend and my first relapse. Increasing the monitoring to two monthly rather than three. Can only wait and see...

Friday, 9 August 2024

10/08/24 Five

Today is my myeloma's fifth birthday. Not the day of the diagnosis, that's in September, but the day I knew beyond any question that I've got it. And I'm still on Line1, no transplant, no relapse yet, the hip lesion is fixed, in full remission for over three years and off treatment altogether for two and a half. In day to day life, apart from the continuing mobility problems, I rarely think about it at all.

Things could hardly have gone any better, and I've been very lucky. Very lucky indeed. When I was diagnosed, the consultant gave me five to eight years. Probably... Another three years will get me past that, and I see no reason why not as long as I don't get run over by a bus first.

Photos. 

Here at Walter House we like excuses for a celebration, and a casual comment led to me suggesting that we should celebrate Bastille Day with a trip to Ongar Petanque. The 4th of July didn't work out, but we did the visit a couple of weeks ago. I'm on the right:















 A walk in a nature reserve on the edge of Writtle a few days ago:










And yesterday, while our carpets were being cleaned, we went to Paper Mill Lock for lunch and a walk along the Chelmer and Blackwater Navigation. Summer at last!









































Sunday, 2 June 2024

02/06/24 Boules again

First time at Ongar (or anywhere) for several weeks. Bone cement, rain, a bicycle race, more rain, and just cold weather have kept me away. But it was a fine sunny Sunday morning and I played two fours and my team won both. I played some good balls and the usual quota of rubbish ones weren't as bad as sometimes. Even better, bending down to pick the coche up was easier than it's been for a long time. Definite improvement there.

Wednesday, 22 May 2024

22/05/24 Results

Just had the three-monthly blood test results in a 'phone call with my haematologist. No paraproteins, light chains normal, everything else normal except very slightly high calcium. So still in remission, very relieved again. Full body CT ordered for next time as a routine check.

Sunday, 28 April 2024

28/04/24 Cement!

 An early morning trip to London last Thursday morning, and straight into anaesthesia and the procedure. I gather it took a bit over two hours. Very small "incisions", just two 1mm holes very close together. All looking good now.










"Before" on the left, "After" with the injected cement on the right. That gives me a lot more confidence in the mechanical stability of the joint. A completely unexpected benefit is that I can now get up from chairs much more easily, and can bend to pick things up off the floor again. Well, I could before, just about, but with a lot more difficulty than I have now. Just hoping that will last...










UCLH food not bad, certainly edible. Breakfast very limited, just a choice of cereal or toast.









Discharged Friday mid-day and short of sleep after two bad nights. But made up for that last night with over eight hours and a score of 100 on the CPAP machine.

Monday, 15 April 2024

15/04/24 Good news, mostly

I have my appointment for CT scan and pre-assessment at UCLH (Euston) on Wed 17th, probable surgery date for the cement injection Thursday 25th. Of course there were the usual NHS complications over contradictory messages about the appointment and arrival times. Sadly you just have to accept that as par for the course these days. At least it was all digital and not reliant on what now passes for second class post. Fifth class in a third-world country, more like.


My blood sugar levels (HbA1c test) have drifted up gradually from high 30s (OK) to 41 and 42 (borderline "pre-diabetes") and now 45, which isn't actually diabetic, that starts at 48 or 49). Probably age-related increase in glucose intolerance rather than anything nastier - I hope! So I've been put on a pre-diabetes course for a couple of months now and am trying to make a few diet changes (basically, eat less!) and get the exercise up a bit. To that end I've got a pair of carbon-fibre Nordic walking poles and use them to power along the corridors here. Gets the heart and lungs going better than any amount of ordinary walking. Took them outside yesterday for the first time.













Mine are black with red trim - not luminous green!

Had a burst of the arthritis or whatever it is I get occasionally in the base of my right thumb. Well, it's there at low level all the time, but these acute bursts happen maybe two or three times a year and make my right hand both painful enough to disturb sleep and 75% useless for most things. I treat with Volterol and Co-Codamol (with the usual consequences) and whichever herbal ointment I've talked myself into trying on an "it just might work" basis. The attacks build up over a few days, bad for a day and a half, I sleep better on the second night and it's gone - or at least as gone as it ever is - in the morning. Works every time, I have no idea why...

Monday, 25 March 2024

25/03/24 Back to Boules

First session of 2024 yesterday as the temperature was not too bad yesterday morning and for once it wasn't raining. Played two doubles matches, lost the first one 13-0. I was very very rusty and had trouble staying in the lane at first. But it started coming back in the second game and we won 13-8 and I played some balls I was very happy with.
The four new pistes are now in use and we have fancy new scoreboards as well. Zoom right in to see them...




Friday, 22 March 2024

22/03/23 What's new?

Time for what is now becoming a monthly update, and the answer to the "What's New?" question is not a lot. Or anything much.

Still in remission.

Still waiting for a date for the cement process.

Mobility still not too good, keep aiming for a decent number of steps a day but they do get harder, range gets shorter and my speed over anything but perfectly flat ground gets slower. Often need to go and walk the corridors here to get the step count up - at least I can work up to a more respectable speed there, while running the old "Straight, square, balanced, even" mantra through my mind... Learned that one from a so-called osteopath in Suffolk at the end of the 1970s, never forgotten it.

Today's post - we now get two deliveries a week, more or less - contained nothing about bone cement dates. I keep hoping. But it did have a thick sheaf of paperwork about my recently-renewed mobility scooter insurance. Last year I had great difficulty and trouble and phone calls before getting any documentation out of them, either paper or online. Now I have four separate but identical copies of it... Sometimes you just can't win.

On to next month.

Saturday, 3 February 2024

03/02/24 Cement


Good news. Have had phone call with the surgeon at UCLH and he's agreed to do the job. I asked him about waiting times and he said "A bit busy at the moment with post-Christmas and strikes, but we don't usually have very long waiting lists". Whatever that means. Hoping to have it done before my next "follow-up" at RNOH Stamore on 4th July, which seems as if it might be a little pointless now.


Friday, 19 January 2024

19/01/24 Stanmore again

Yesterday, my "follow-up" appointment with Mr.Gerrand at the RNOH in Stanmore. Very limited parking on site and few roads nearby, so booked a "Just Park" spot a claimed 15 minutes walk from the hospital - but not specified which of several widely spaced entrances that meant...

Satnav found a big problem on the M11 so sent us on a very slow route through Epping to the M25 but even so we arrived on schedule - all credit to Google Maps for predicting the journey time accurately. Got to Outpatients Reception 20 mins ahead of the appointment time rather than the requested 30, but can't argue about that. Then sent off for X-rays, which meant a one hour forty-five minute wait...

Finally got in to see the big man. Images showed no significant change from last time. Talked through it all again, with me emphasising my concern over the high risk of a serious fracture of the left hip socket if I have another fall or etc.. He still wanted to push for a hip replacement, I repeated the Broomfield man's view that there's not enough good solid bone to attach one to. Something of a stalemate in the negotiations until he came up with the idea of "cementoplasty" - i.e. injecting a cement filler into the cyst to improve its strength. I'm familiar with the idea for repairing myeloma-induced vertebral compression fractures but apparently doing it on this larger scale is a new thing and there's a man at UCLH doing it. So I'm being referred on to him. The idea has its attractions - no need to replace a joint that is working well, and it's a keyhole process (done with a scanner and under anaesthesia) so quicker recovery. 

We shall see...


This is quite technical, but interesting: <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036515/>

18/11/2024 Much much betterer

 Not the myeloma, or not as far as I know. Next haematology consultation is in early January, and I've booked the blood draw for 18th De...