IN THE WILDERNESS - 22 APRIL 2022

 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 don't know if it's altering the shape of internal anatomy, or affecting gut function by interfering with nerve or muscle controls for instance. On the plus side, there's still only this main growth and a lymph node (increased from 6 to 9mm in diameter) i.e. no spread visible on the scan. 

At this point, there was still a possibility that the trial treatment was causing the gut problems but Dr M warned that they now had a number of people on the trial and others weren't getting similar symptoms. I was still  hopeful that over time, the number of visits to the loo would decrease, but (spoiler alert) that hasn't happened; indeed it's got still worse.

Dr M was to take the case to the MDT meeting in the afternoon after clinic but we talked about what might come next depending on what was technically feasible.

The 'standard' next chemo would be carboplatin (again) plus gemcitabine - three-weekly cycle for both plus an extra gemcitabine one week after the double infusion. Expected to be more anaemia and fatigue inducing than previous regimes - unwelcome - uncertain if these are direct effects of this regime or because by this time the poor patients' bone  marrows are getting a bit generally knackered.

Dr M wanted to discuss a non-standard element - to have further surgery. If I understand it correctly, normally they just do the one 'debulking' surgery (which I had in June '18) as subsequent surgery has not been shown to be of use. However, if it's possible she's thinking about further surgery to get rid of the rectal tumour and the lymph node for palliative purposes to relieve symptoms. It could reduce or remove the macroscopic disease but the cancer would probably still come back. It would almost certainly mean an irreversible stoma on the large bowel.

This was all quite difficult as for some reason I hadn't really prepared for the possibility that the tumour had grown. How luxurious the early consultations were, when Chris would come along with me and remind me of unasked questions or pick up on what needed to be asked when bad news cropped up. I felt I was being asked to make a decision when there weren't even definite  options on the table and was pretty much paralysed in the headlights.