Wednesday, 24 June 2020

24/06/20

Big day yesterday. We started with a walk along part of the Essex Way (it was very hot and most of that route is well-shaded) and I didn't get a puncture... Then in the afternoon I went off to Springfield - first time I've driven since the last Springfield visit four weeks ago. The car park was the emptiest I've seen it.

First was taking the blood  from my left elbow vein because the nurse had trouble with getting a canula in my right wrist. It's unusual for me, normally my veins are very co-operative. Then we set up the Zometa drip and the way they do it involves 15 mins of saline first, then  the Zometa which took about half an hour, then another 15 mins of saline to flush the line and make sure that all the Zometa has gone in. And before any of that happens they have to get the Zometa from the pharmacy and make it up to the right amount and concentration for my body mass and that stage always takes longer than seems  reasonable. Perhaps there's more to it than I know about. At any rate, no more Bonefos sodium clodronate pills to take at the unearthly hour of 08:15. I've re-set my alarm to go off at 08:45 but because I no longer have a reason to get up on time, I may well just ignore it and go back to sleep.

Then my first COVID-19 swab test, which they're now doing before every treatment. It's the one that involves putting an extra-long cotton bud right into the back of your throat, then inserting it up one nostril a surprisingly long way into the passages and chambers that lurk up there. Unpleasant, but not as bad as some of the reports I've read. Results in  couple of days, and I firmly expect to be negative. By the time that was finished the pharmacy delivered my package of pills for the next cycle of Len/Dex including the Lenalidomide/Revlimid which I shall treat with increased respect now I know that one Len capsule costs, according to one site I've looked at, 208 GBP per capsule. Or was it 280? I have three weeks on and one week off, so that works out to well over 4,000 GBP a month either way...

Got back home just in time for the regular online backgammon session (I'm ahead this week, after a bad run of rubbish dice for the last couple of weeks), and then discovered that the meal plan wasn't going to work. We were going to use a jar of Dolmio Bolognese Sauce that arrived in the one food box we got some weeks  ago before cancelling, but nobody had noticed that it needed some mince as well. So I improvised a vegetarian version out of some celery, a red pepper, and mushrooms that we had in the fridge and were starting to look a little tired. It came out OK with a lot of Italian hard cheese grated on top.

After dinner I had a 'phone call from Dr.Ch. After going through the "How are you doing?" routine (answer "Pretty well, side-effects under control") and some discussion of the obstacles AXA-PPP have been trying to put in the way forward. As for that, all the evidence from several sources is that they'll try to hide behind a smokescreen of fine print in the policy but give way if they're challenged by some decent arguments from the patient or consultant. I'm  not going to get worked up about the ethics of insurance companies, I've spent too much of my life doing that already. All I care about is finding ways to make them face up to their responsibilities, and I seem to be doing OK with that so far. It is called "Comprehensive Cancer Cover", after all!

 I raised the subject of whether a delayed transplant is still the best way to go in the light of things we know now that we didn't know back in March - the virus and my excellent response to chemo so far. He accepted all my points but we agreed no decision needs to be taken at this stage.

That's about all. Later this morning, 20mg of dex and back to Lenalidomide in the evening for Cycle 2. Right now, a quick tour of YouTube for anything interesting, then I aim to get to bed at a sensible hour (for me). That may be harder tomorrow...

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