Janet's blog

 The PET-MRI scan from the end of last month did show active malignancy. I had suspected as much - the rising Ca125 and the feeling of having something going on in my butt were clues - so I was disappointed but not really surprised.  Dr M. was back in heels, feet fully recovered, when I saw her for the bad news. We talked a bit about options - Carboplatin still seems the obvious choice as it's worked before and it seems I could have it with paclitaxel again, same as the first regime. I'm not keen on this as my hair would fall out again (I know, trivial) but of more concern, the peripheral neuropathy might get worse.  Then, for carboplatin alone, there's a trial - one arm gets the standard carboplatin-only treatment - 6 cycles at three-weekly intervals (15 weeks). The other arm gets an 'adaptive' carboplatin regime - once the first cycle is over, the dose of carboplatin depends on your Ca125 level just before the next one is due. This may have a bonus of reducing sid...

 Haven't written here in months - last year was pretty gruelling and required a long emergence perioid. The unfinished spiel at the bottom is something I drafted mid September. After that, I think any energetic moments had to be portioned out to high priority activities. Writing now mostly to publicise my consultant's above-and-beyond efforts - see below. 🏃 Looking back briefly: the end of treatment scan (Oct 22) showed the chemo had worked. The 3-month scan (Jan 23) showed the 'main' tumour had shrunk further although the Ca125 had goneup from 8 to 28. Ca125's now 175 despite the CT scan showing nothing remarkable going on in my pelvis. But there are some newly enlarged (albeit still small) para-aortic lymph nodes, which are  associated with ovarian and some other metastases: https://radiopaedia.org/articles/para-aortic-lymph-nodes-2?lang=gb#:~:text=Para%2Daortic%20lymph%20nodes%20(often,the%20cisterna%20chyli%202%2D4. )  So, to provide more info, I'm to get a...

 Neutrophils coming out of my ears - 13 point something. Shame they don't last long. As I understand it, they could be almost all gone in 24 hours under the onslaught of today's gemcitabine. Cannula inserted easily and successfully by Senior Nursing Assistant (so many ranks) after difficulties a week ago, but a bit closer to my hand than I like. This is the second time I've been told that gemcitabine is hard on the veins.  The circular benches in the middle of the chemo suite are being dismantled to make way for more chairs for patients. My lovely chemo nurse says chairs are not so critical, but staff and pumps are. Here is the pump she has found for me - I am guarding it while she searches for a compupter console so she can get me going. I have promised to bark if anyone else threatens to claim it.  There's been a bit of a delay while I finish other things but I have started Booth which arrived unexpectedly as a  birthday present some months ago. Thank you to the se...

 Back in the chemo suite. I report no more funny turns - just the usual lightheadness in the wake of filgrastim that feels like someone's taken off the top of my head like taking the top off a boiled egg and leaving the brains floating about.  Today's treatment has been delayed a week - bloods done on last clinic day showed neutrophils were missing in action again, so I was given the welcome option of an extra 'week off'. We had an exciting plan to go to Shingle Street but one of our hosts came down with Covid, so that was off. Instead we hosted our fellow guests-to-be in the garden under a rain of falling apples and unconfirmed hedgehog rustlings. And there was enough energy for a day trip to Bath to see another friend who was passing through. Nice lunch under an umbrella by the Kennet and Avon canal; started off as a sun shade then became a rain catcher as the weather broke. This put paid to a tourist stroll around Bath but we used the traffic jams to gaze out of the ...

 Another day to prove that when you feel ok you feel ok and when you feel terrible you feel terrible. And there's always something else round the corner.  In chemo suite, bloods done and OK'd - lots of white blood cells! Cannulated, pre-meds taken and an ECG done to get ahead of the game, but still waiting to see a doc to give the go-ahead for the mini-chemo.  This is because I had a funny turn this morning - very music hall now but less so at the time. I was supposed to have my Filgrastim WBC booster injections on Days 4,5,6. However, in the wake of the tsunami of amoxicillin, Day 1 chemo, domperidone, dexamethasone and the Filgrastim, Day 5 was exhaustion and Day 6 not much better plus stoma squits. I took  my eye off the ball and forgot the Filgrastim. Yesterday Clinical Nurse Specialist said to take it Day 7 instead so I did - probably why lots of WBCs today. I'd been feeling oddly light-headed for the last few days and a bit weedy this morning but took myself to...

 Missing the Devon trip may have been a  blessing in disguise - we'd probably have been travelling back on one of those very hot days. And there have been some compensatory amusements associated with staying in London: I saw two friends on the radioactive day during the longeurs necessitated by periodic blood sampling and the big kids came over for lunch on Sunday, coupled with a  search for fabric scraps for patchwork and some summer apple tree pruning. Both garden and allotment have been crying out for water for ages it seems. I manage to get to the allotment most days at least for a short while but watering the essentials seems to be all there is time for. Meanwhile the bindweed is running amok with flowers all over the shop and smirking at me. But I've been picking onions, ripe tomatoes, figs, french beans, some blueberries (although some are rather dried up), one courgette and lots of lettuce (mostly from neighbour who has overwhelming crop of really nice variety). I...