The interim - 21 July

How does it feel this time? 
The last fortnight has been a bit of a struggle tbh. The words are, "I've done it once, I can do it again." The feeling is more of dogged weariness with a high anxiety, tight-jawed overlay. I've felt quite foetal - if my back were more flexible I'd have been curled up in a ball some of the time. 
Major distraction efforts required for hours at a time . These have been supplied in the most part by a stream of Donna Leon detective novels featuring Commissario Guido Brunetti and set in Venice. I think I must have picked the series up from A Good Read and added it to my long list of Books To Read, Films To Watch, Places To Visit. I've never been to Venice but am getting familiar with the basic geography while stuffing Amazon's Kindle coffers - grrr 😠. I'd start off at elevenses time, head to the sofa with a tray holding  Kindle and hot chocolate and cake (if available) then this would segue slowly into cup-a-soup and a drawn-out lunch. At no time would this help me feel much better - but it prevented me from feeling worse. If lucky, I'd surface in time to get to the allotment in time for 4pm or thereabouts. 
I was reminded by a loyal reader that Jeeves and Wooster often sustained me through the night during the previous iteration of this saga. The equivalent this time has been Miss Marple (!) and some World Service.
All of which begs the question of what have I been distracting myself from? A growing conviction that I had passed the end of the beginning and had reached the beginning of the end. That there would be this six-month round of chemo, with that pisser Covid-19 - no visitors during treatment - no infusion parties round the bed side with interesting snacks - no visitors at home - having to shield - and the worst end of it all coming during the winter when it wouldn't even be possible to sit at a distance in the garden. 
And behind it all the knowledge of what I'd lost all over again. Over the last year or so I had got back some of that feeling of living forever or at least until I was more ready to go. I still found it difficult at times to do things that speak to the future - most of the seed planting at the allotment was late. I'm pretty sure this is a reluctance to tempt fate.

Comments

Post a Comment

Popular posts from this blog

The support hammock

Image
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...
Read more

BACK ON THE JUICE - 6 JULY 2023 - ATOV TRIAL CYCLE 2

 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....
Read more

Kicking off

Image
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...
Read more