November 25th 2021 a worried consultant got me a CT scan to see what was going on and the result were much more positive than my state of being suggested. I am still in a 'stable' state. Nothing nasty has grown, my CA 125 has shot up but that could be in reaction to the etopiside pills.
Thursday Dec 2nd 2021 I finally had enough fluid to drain out of my abdomen, so spent the day on a hospital bed reading a novel, unable to concentrate on anything more taxing. Some relief ! ! ! they took 5 and a half litres out of me !!!!!!
My sister came and looked after me for 4 days. Absolutely bliss.
Next consultation I discovered I was anaemic so the next action was to have a blood transfusion ! ! ! Vampire Jones anyone?
Wednesday 15th December 2021. 2 hours for one bag of blood to go through, 1 and a half hours for the second bag of blood to go through, no nasty side effects, another day of sitting on a hospital bed reading. Flashes of vampire movies pulsing though my brain.
Thursday 16th December 2021 A consultation revealed that my platelets had shot up to 158 Wowzer !!!!! We Hey ! Great News but all the other graphs ( blood enzymes and other counts that I don't understand) were going in the wrong direction. (I think my CA 125 has gone supernova, I didn't ask the specific number.)
I am unable to eat enough because of swelling belly( the fluid has started to come back again) so I am threatened with especially prepared fortified meals in drink form, EEW! This should also help my swelling feet and now legs too. We shall see.
Plan of action.I am booked in to have and ultrasound and possible drain on Tuesday 21st December 2021 Consultant is hoping the blood transfusion will help my body regain a balance and I won't have to drain. She will then give me etopiside pills to take away for xmas. First I had 2 days worth, the next time 3 days and she's hoping to give me 4 days worth of the drug to kick me into the new year in a better state.
Here endeth my litany of woes but hey we have a plan and I can escape my bedroom for a week and visit family over xmas.
Friday 5th November 2021
I got my first dose of Etopiside chemo in pill form + 50% of Carbolatin. Spent the day waiting for weird side effects to appear but luckily, nothing more than I already have for carboplatin. My sense of style is totally confused. Because of my big belly I've abandoned trousers and belts and am now sporting soft jersey yoga trousers, leg warmers and an outsize baggy jumper. A cross between a dancer, a bad boy with low slung trousers and an ancient punk with a wonky mohican. It is all topped off with an old 1950's parka. A confused style statement if ever there was one!
Thursday 11th November 2021
My platelets are smashed down to 22 so no treatment for me this week. My feet have swelled up again so I was whisked off to ultrasound just to check I did not have a blood clot in my leg oh and they checked for fluid in the abdomen but there was not enough to warrant an draining procedure. Phew ! A close shave. No blood clots thank goodness.
Thursday 18th November 2021
My platelets are still going in the wrong direction! They've gone down to 18 Halleliwia ! No treatment for me this week. I just have to wait it out and pray they come up enough to have chemo on Friday. The plan is just to have the etopiside chemo and leave the carboplatin out of the picture. Their mistake was to give me both. You don't know until you try, trial and error! It's all a bit random! The good news is that they do think the etopiside is doing some good because my liver function which had plateaued over the last few weeks started to go in the right direction again. How bizarre that all this is happening inside me and I have no idea and nothing I do or eat or drink makes a blind bit of difference. Apologies for the over use of the exclamation marks in this paragraph.
Two weeks ago my platelets were 36 so I could not have treatment. During that week my belly ballooned. The next week I was able to have 50% chemo but still my belly was expanding. Tomorrow I can have 60% of the chemo Hurray! perhaps that will bring down my belly. I'm waddling around like bad boy with the tops of my trousers slung low on my hips and of course when I walk the trousers gradually fall down. Oooh errrr
CT scan result show that everything is STABLE ! ! ! No growth, no disturbing change to anything. My liver function is getting closer to normal. I was tested for anaemia and a few other things but all came back normal. The consultant does not know why my belly is big given all my scan results and blood results. Its a connundrum! Possibly next week I shall have another chemo in pill form to go with my weekly carboplatin dose.
Meanwhile here's a banner I have been making for Extinction Rebellion, many of whom are heading off to Cop 26 in Glasgow for November to make a lot of noise.
The plan is working. Weekly infusions at a reduced dose to enable my platelets to recover enough before the next session. Another 6 or 12 weeks of Friday sessions. The first 2 days after treatment pretty nauseous but come Monday I'm so much better. My strength is returning, the fatigue is lessening a little every day. I am able to even walk some distance now. So happy that recovery is turning out just way my consultant described.
I am thanking my lucky stars.
Thanking the NHS
Thanking all the teams of wonderful people looking after me in their different departments.
Thank you Thank you Thank you
A little something to tickle your fancy this morning. Thanks Sheena for finding this gem for me.
https://www.youtube.com/watch?v=TivU77pOwoo&list=PL4Ahm8aMt_WuHBgchsCeyzOqDZzEp2DV5&index=15
Here's to moving forwards and sometimes backwards and knowing it will take a long time.
We are sad to say that Sianed died yesterday 31 January. In accordance with her wishes there with be a celebration of her life, probably in ...
