30/04/20

Yet again, there's nothing to add. Mind now turning towards the next expedition to Springfield for more blood tests on Tuesday. Hoping the paraproteins will still be undetectable, but TBH that would be a bit of a miracle.

26/04/20

Sue and I were talking about this earlier, and it's been on my mind for a few days. However the COVID-19 coronavirus situation goes - particularly if we get a second (or third) wave combined with winter 'flu - it's going to be a long time before things are back to anything like normal for the immune-compromised over-70s, and particularly for those about to become even more immune-compromised for several months. Such as people waiting for the right time to have their stem cell transplants.

There's a clear and developing view in at least part of the myeloma world that transplant may no longer be the automatic best option for the disease. There are new drugs and combinations coming along all the time, and at least two promising lines of gene therapy under development. If I have to wait a year, which I think is more than likely, then I'll be a year older and I'm already at the top end of the age range for transplant. On the other hand, that's another year for new and improved treatments to come along.

The whole myeloma "journey" from diagnosis back in September last year to now has been defined by the focus on stem cell transplant at the end. It's a bit strange adjusting to the idea that it may not happen for a lot longer, or even at all. But my response to chemo has been so good (so far) that the prospects for staying on that track and avoiding transplant - which is, of course, not entirely risk-free - must be reasonably good.

Too many unknowns here to be sure of anything, but the way ahead isn't anything like as clear as we thought it was just a couple of months ago.

23/04/20

Going back to the confusion over the Springfield prescriptions, the charge we were asked to pay was a delivery charge, and the hospital is going to pay it. We haven't been asked to pay for the meds ourselves, so I'm assuming that they are being charged to my insurance.
One problem with the insurer's website is that it tells me how much they've paid out and who to, but nothing is itemised beyond that so I never know exactly what a particular invoice covered.

22/04/20 (2)

Some photos from a walk a couple of days ago. These bluebell woods are quite a long walk away, along a farm track opposite the house and then on public footpaths. The bluebells have never been as good as they were fifteen years or so ago when we first discovered them - just a sea of purple/blue flowers - but this year is about as good as we've had since then. It was wonderfully quiet and peaceful in there, with no aircraft in the sky for once. It was also quite a test for Victor the Veloped, whose all-terrain abilities were thoroughly tested by tree roots, fallen  branches, badger setts, and the like.

21/04/20

A bit of confusion yesterday over a couple of meds that I'm still taking daily although I'm off chemotherapy - one anti-herpes and one anti-pneumonia. I'm running low of them so I ordered some more from Springfield (for some reason I get them from there not from the GP surgery) and requested delivery because of our COVID-19 isolation. They arrived by taxi and the driver wanted a payment of about £23 and could only accept cash. We are, of course, advised to avoid cash in favour of contactless payment wherever possible. Sue, who answered the door, assumed that this was a delivery charge. The driver 'phoned his office, and I gather they said that somebody else would pay, probably the NHS. The driver went away unpaid, leaving us awaiting some clarification later. Then Sue had the thought that it might have been a private prescription charge, because we had a bit of an issue about that last time I ordered the same pills. Should they be paid for by my insurers between chemo courses, or do we have to pay? It seems to me that if it was a prescription charge there should have been some sort of invoice in the package, and there wasn't.
We'll sort it out later today, but it's the kind of complication that we could do without in these already stressful times.

20/04/20

Some myeloma news to write about at last, and it's good. Paraproteins from last week's bloods are still undetectable which will mean no immediate return to chemotherapy. The nurses at Springfield are going to email me the full results later.

18/04/20

Went to bed at a reasonable hour (about 02:15) Friday night, woke up late this (Saturday) morning so should have had enough sleep but couldn't keep my eyes open after breakfast and nodded off in my chair downstairs. This is  not all that unusual, but this was worse. Woke up enough to get the cat drinking filter from "their" room upstairs and bring it down for its weekly clean - then fell asleep again. Had a light lunch of cheese, biscuits, and tomatoes - and you know the next bit. But then I had a burst of energy and took the new off-road walker out to investigate the Essex Way in the opposite direction from the one we usually do. The first level part of the path is very deeply rutted and pitted but Victor Veloped coped admirably. Then there's quite a steep downhill stretch until you reach the road going to the far end of Good Easter, where I turned round for the return trip. Unfortunately there's no realistic way of making a circular route out of it. It was a hard and slow push back up the hill and I needed a couple of stops to get my breath back but at least I proved the route as a practical one, in a spell of dry weather at least. Wouldn't want to try it through thick mud after rain.

Otherwise, no change. Still in limbo awaiting the paraprotein and light chain numbers from Tuesday's blood tests.