Janet's blog

 Stoma surgery day was pretty horrible. 7am start even with the expectation that it would be an afternoon operation. It did mean minimal traffic. But it was an afternoon operation and that's a long time to exist in a state of high anxiety, hunger and thirst in one curtained cubicle or another. Especially after the first curtained cubicle area (which had a loo I could access on my own) got repurposed into the recovery area for the morning ops. I, and a few others in the same boat were moved to a smaller area of curtained cubicles which didn't have a loo, so every time I needed to go (frequently!) I had to find someone to escort me back to the loo in the first area. Every now and then, we were given some water in one of those tiny pill cups to wet our mouths. Early entertainment from short checking-in interviews with nurse, then student anaesthetist, then stoma nurse whose X marked the spot. Later entertainment from reading 'On Chapel Sands' and short visit from a surgeon...

 I won't pretend it's been an easy few weeks. Unwell, unhappy, frightened and without my usual grip on the road ahead. Partly due to a lack of signposting about what's going on. Nothing in writing about the findings of the exam under anaesthetic - just the verbal from Miss McD on the afternoon of the procedure. Nothing about how to prepare for the actual stoma operation - it all seems very different from when I had the debulking surgery when there was written notification about preparation down to showering beforehand and drinking Gatorade. This time nothing even about when to stop eating and drinking. Whether it's because I've been handed over to the general and gut surgeons I don't know, but I've felt cast adrift.  At the back of it is a difficulty in adjusting from being on a trial to this new, unwanted stage. One reason for being on the trial was the perception that a very close eye would be trained on what was happening. Instead, I can't help thinki...

 The exam under anaesthetic went pretty straightforwardly - relieved to surrender anxiety to unconsciousness for a while. I made some notes shortly after  in the expectation I would otherwise forget what had happened in the anaesthetic room and shortly after - expanded, they go like this: Darlene - anaesthetic/theatre nurse - could she be the same nurse who looked after me when I went under the knife in 2018? She was warming the trolley with a hot air device for me to lay my anxiety and starvation chilled limbs on - delicious. Rob - anaesthetist - could he be the same anaesthetist who looked after me in 2018? Is this real, or an imposed familiarity from some anaesthetic room effect? Asked me about my favourite plants, said he'd been down to Tottenham Court Road for the best opioids as they were going in and the wierdness started. Then ...... Remember making some protesting noise as I woke up in recovery with the airway still in. One of the nurses sitting by my side spoke to th...

 Back in the difficult place big time with a big gap due to inability to write in measured way. So will write, but in less measured way as I've been very poor at responding to calls and texts and WhatsApps. Sorry! Dr M, the oncologist, phoned after the MDT of 29 March with the provisional view that on the basis of the scan, palliative i.e. symptom-relieving surgery looked feasible - cut out affected bit of bowel and build in a stoma.... Although they've always been clear that this disease does not get cured, I don't think they've ever gone so far as using the word 'palliative' before.  Next up - 26 April to see surgeon, Miss McD, who did the original debulking surgery, as well as Dr M. I axed breakfast and took a loperamide in advance and cycled in which worked despite a couple of anxious moments. It was good to feel the body working a bit better, presumably stoked by young red blood cells with their haemoglobin ration.  Miss McD did an internal exam and rather ...

 It's been a long gap, and now it's high time to get my thoughts straight in order to navigate the next hospital visit effectively. On 29 March, Dr M passed on the disappointing news that the scan of 23 March had shown that the main growth had got bigger - not a huge amount but now with 2D size being given as 6.2 x 5.3cm. Still no sense of the extent in the other dimension, which I find very annoying. I might be kidding myself but I'm convinced that I'd understand what's going on better if I knew its full extent. I feel like this might have been requested, especially given my ongoing queries about it - but I have no idea if this would have been an unreasonable request from the radiologist. It's not such a big increase that the protocol would require me to leave the trial but Dr M cited the worsening symptoms as a reason to stop. There isn't a clear explanation as to exactly why the tumour is affecting me as it is, which I find quite difficult to live with. I...