Monday 22 June 2020

22/06/20 (2)

'Phone call from Liz, my Personal Case Manager at AXA-PPP, about 09:15 this morning. Fortunately, because of the need to take the Bonefos (oral bisphosphonate) pills by 08:30 I was both up and reasonably conscious. Otherwise I might well not have been...

Yes they had the case management team meeting on Friday, and yes they've agreed to fund Zometa and Lenalidomide and dex. This fits the pattern that a number of other people have reported - they try to refuse but if the patients and their consultants put up a fight and a decent argument, they fold. And of course they've avoided a formal complaint process!

Great relief all round at home!

I emailed my consultant (who will probably have been informed anyway) - nothing back from him yet - and also 'phoned the chemo nurses to tell them that we should be OK for Zometa on Tuesday. As for the promised COVID-19 test, today is too late to get result for Tuesday so they'll do it then. I was expecting a call-in on Friday but that never happened.

I've spent a bit of time over the last few days looking into the possibility of importing Lenalidomide from India, which is the only way I could get it if the other routes failed. Obviously don't want to go down that road because of quality concerns,  but I now have contact with a few people who have been doing it for years, have had the imported drugs tested in university labs, and have had no legal issues or import taxes to pay. I have "recommended" websites, email addresses, and etc.. I can see a possibility that AXA might get awkward again once I move from consolidation to maintenance, so good to have all the information ready in hand. Of course there's also the "one foot private, one foot NHS" route, which would be the first option if AXA get difficult again.

Next thing is to 'phone the GP surgery to arrange delivery of the pack of bits and pieces I need to do my own B12 shot next week, but for some inexplicable reason the pharmacists refuse to answer the 'phone between 12;00 and 14:00. Everything's medical these days...

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