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.

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...

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!

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.

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.

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.

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...