17.4.18 I feel as if I'm lying about in a comfy hammock made of people linked together caring for me and holding me up. It was a bit hairy getting into the hammock, and it's a long way above terra firma but now I'm there I feel pretty relaxed. How horrible it must be to be in this situation at an older age, with fewer friends left and family maybe elsewhere. There are the professionals including a little team of Clinical Nurse specialists (CNSs) who are pretty much at the end of a phone. There's the Macmillan Advice and Info centre, also at the end of a phone, but with a physical presence in the UCLH Macmillan Cancer Centre. There's a 'Living Room' there - at least a couple of meanings wrapped up in that name I think - where you can hang out, and make tea or coffee without having to wash your mug up afterwards - just put it in the dishwasher! Very useful when you're there for things with long waits, although I now have the Grant Museum of Zo...
So, I'm Patient 2 on the Atov trial, and have been randomised onto the adaptive treatment arm. This means that I start off with three cycles of carboplatin at three-weekly intervals. First one was on 15 June - 500mg by infusion as usual, followed by the expected days of sick tiredness, gradual improvement, then back to my new normal which is sadly not as good as the old normal. I was told not to expect a sufficient reduction in Ca 125 after this to allow a reduction in dose so soon. This managed my expectations nicely, but in fact Ca125 had dropped by 55% - memo to self to get the actual numbers - so I'm in today having an 80% dose of carboplatin (400mg) - memo to self to ask for the dose calculation formula. Same dose of anti-sickness pre-meds and think I'll be sent home on usual doses of anti-sickness post-meds but I'm very (self) interested to see if the side effects are less bad on this only slightly lower dose of carboplatin, or if they perhaps pass more swiftly....
Dearest readers. I don't have enough thanks for all of you who have taken an interest in what's been going on with me. Your presence, distractions, words, cards, flowers, messages have given me a fantastic sense of support. I'm sorry that in return I haven't always been able to get back to everyone and I can't remember what I've said to whom and end up boring endlessly about the same things. So a leap into the 20th century seemed like a good idea for keeping anyone who wants to know informed - and maybe give me an outlet for venting spleen (while I've still got one). My apologies if the latter means there is too much information. And before I continue - thank you to whoever sent the mystery flowers...I haven't been able to track you down, but it said 'With love x' on the tag How did I get here? On 20th January, I cycled energetically to GP with 'a change of bowel habit'. GP found lump in my belly - referred me for colonoscopy. I r...
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