27/05/20

Yesterday was another very hot day, and it was a delight to sit by the dragonfly pond at the end of the garden and watch the first of this year's damsels and dragons doing their thing. Early signs are that we're going to get a better variety and numbers than we did last year. That was very good for my state of mind, which is just as well considering what came later...

I arrived at Springfield right on time for my appointment. The doors are automatic,and I pushed the lift buttons with my Safekey (a brass gadget you can use to push buttons, work door handles, etc. without touching them) and rang the bell. One of the nurses appeared and sent me off to the waiting room, where there were two others already. The chairs were arranged so that we were just about the regulation two metres apart, but no more. I had a face-mask on, but neither of the other two did.

A pharmacist arrived with my bag of new pills and gave me the usual talk about them then took them through to the chemo nurses. After another wait, one of the nurses called me through to the treatment room. The first thing she asked me was "Are you on steroids?" I said "No, but I should be from tomorrow." They had checked the contents of the bag and found no Dexamethasone in there. Full marks for the chemo nurses, and rather less than that for the pharmacists...

Cue a couple of phone calls, until the Pharmacy admitted an error. I was asked to go over the road to the main building after my appointment to collect the necessary Dex from the Pharmacy but I objected saying I'm supposed to be "shielding" and didn't want to go into the main building unless absolutely necessary. My nurse said "OK, no problem, I'll go and get them." Which she did, so another set of full marks to the cancer side of the road.

Then we did the obs and bloods, and I made my point about switching from the well-tolerated Zometa drip onto the new oral Bonefos - pointing out that if "minimising time in hospital" was really critical, I'd already been there for the best part of an hour and a half - plenty of time for bloods and a Zometa drip - and nobody was going into panic mode about my having been there unacceptably long...

She said she agreed completely, I had a perfectly valid point etc. , and suggested staying with the Bonefos (sodium clodronate) for the first four-week cycle and reviewing after that, which is the approach I had already decided on. With any luck, by that time the pressure to go to oral bisphosphonates will have dropped quite a bit - I already know of several hospitals (including Addenbrookes in Cambridge) that have already returned to Zometa.

The Bonefos pills require eating/drinking nothing but water for two hours before taking them, and the same for another hour afterwards - because effective absorption requires an empty stomach. I'm relieved that I have to take them only in the morning, which means little more than delaying morning tea until with breakfast rather than before it. Having to organise that around lunch, tea, and dinner would have forced us into a rather more rigid timetable than we're used to.

We start in the morning. Bonefos, Dex, and Revlemid/Lenalidomide. The Dex is 20mg for one day only rather than two as I had before, so I hope its impact on sleep, constipation, ankle oedema etc. will be less  than before. Not to mention appetite and weight gain...