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.

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.