Let's hope today pans out a bit better than Tuesday did.
On Monday I managed to steel myself for the prospect of 'getting underway with it all' and Emma the nurse who is assigned to me said (after I'd been at PS for 5 bloody hours, jumping through the various hoops, without a word of complaint) 'wow, you are so laid back'. I did tell her that it's not always the case and within 24 hours – I was right!
Went to PS yesterday at 10am as requested, expecting to have a discussion about how to manage the Revlimid giant capsule problem, to be given the Dex tabs and Velcade injection and to be back within 1.5 hours to have an early lunch with Clare Greenwood. OK, I can do that, I thought.
Then spent 1.5 hours sitting like a twat in my chair in the chemo lounge, surrounded by others having their treatments while I sat waiting… and waiting…drinking unwanted tea…and waiting.
'No we haven't found a way round the Revlimid problem' the pharmacist said – 'although if you had a permanent tube inserted into your side, you might be able to heat water to exactly 55 degrees and put the capsule in it, then squirt that into yourself, every time you need to take one'. Oh yes, what a simple and sensible suggestion that was – WTF???!!!
Another pharmacist then appeared with precisely what I had forgotten/not yet twigged – the giant bag of 'tablets you also have to take to counteract the impact of the main 3 treatments' – I took one look at it and asked her to take it away until everything was sorter. Just SO bloody depressing – mountains of aspirin, things to stop the steroids buggering your stomach etc etc – what looked like about 50 tablets a week minimum – I'll let you know when I finally count them.
And she also said the great words 'well, the Dex dosage is 10 tablets each day' – so much for any naive hopes I had that it might just be one, or two, or maybe three tablets – just that drug alone is 10 sodding tablets, and my tablet taking has got no better.
The final straw was Emma trying to give me a really cheery little number – a bright red notebook with 'My Chemotherapy Journey/ Story' or something written on it. Oh yes, that looks like a right cracking bloody read. Can't wait to carry that round in my handbag and update it every day. Whoopie bloody doo.
Eventually lost the plot having sat there for 1.5 hours and just left.
All my bravado about 'yes, let's get on with this' has been replaced by 'well if I can't take Revlimid – the main bloody drug – then what the hell am I going to do, and I don't want to engage with any of it'. I've got enough painkillers and tablets to take for mending my (still bloody sore and now infected, great, back).
Got an immediate text from Prof's PA Linda to day she is on it, will sort timetable etc etc, but for now I am feeling very sorry for myself and just want to hide. The new big space under our raised sofa (thanks again Ross) should just about do it…
x