HIGH ANXIETY IN THE DEEP DARK WOODS - 3 MAY 2022

 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 than underlining feasibility delivered the shell-shocking news that despite the number of growths being small, the  main one has been balefully sitting where my ovaries and uterus used to be and insinuating itself into places it should not. Amongst other things, it's partially blocking the bowel - surprise surprise. It might still be possible to operate, although she seemed doubtful, but would mean more widespread internal destruction. Lesser option would just reroute the bowel to a stoma to give some relief from loo visits. They'd expect to follow up with chemo, either to try to reduce remnants or shrink the tumour left in place. But she didn't know enough from the internal exam and proposed another CT scan (this afternoon) and a more detailed internal exam with cameras under anaesthetic - (tomorrow). Whatever surgery follows is provisionally booked for 12 May. All getting perilously close to the 'When I'm 64' birthday - not enough.

So I'd spent April running to the loo, snatching an hour or two of outside time at the allotment (where there is a loo) and getting used to the idea of living with a stoma. I managed that, especially as the first surgery gave me nearly 4 years without one. I had peeked and pecked mentally at the possibility that the unknowns from the scan - that lack of information about the third dimension  of the main growth - obscured further problems, but had done no further processing in that direction. Hence the shell shock. I should have been more prepared as there has been increasing discomfort in the nether regions, but it's amazing how much unconscious explaining away I can do.

Hardly managed a coherent sentence at the appointment with Dr M, then had to wait another hour for bloods to be done. The loperamide might have allowed me to cycle home too but no breakfast, nothing much to drink (just in case) and 4-5 hours in the hospital on a diet of indigestible news left me very weary and thankful I was able to call my geologist/rock  husband to take me home in the car.

There was a night in the chamber of horrors after this hospital visit - woke up feeling truly dreadful. Panicking, nauseous, struggling to face food, utterly exhausted and sad. This has gradually improved with less time on the sofa in my dressing gown each day; Christopher felt a bit iffy the next day and looking back I wonder if we had a bit of a bug on top of all the psychologicals. Will never know but anxious  interrupted nights will probably do it. Took a loperamide on Friday night and that helped with the loo trips and gave some sleep catch up. Saturday the truly wonderful big kids came round. It all coincided with feeling a bit better plus the ongoing loperamide effect, so we did a couple of hours on the allotment in the sun which was thoroughly life-affirming. 

From Sunday, we've been Covid-isolating prior to tomorrow's procedure; did a pre-procedure PCR Covid test Sunday morning and that's come back negative, so at least we don't have that.

BEWARE!!! TMI section: On the practical side, I've been very hung up about getting to the hospital without crapping myself - and can't now break Ccovid isolation by dropping into a cafe. Loperamide pays you back - slows the guts down but leaves an uncomfortable backlog. Conversations with clinical nurse specialist and enhanced supportive care people haven't really got to the nitty gritty of this. But a good friend put me in touch with her sister-in-law who had similar problems due to colon cancer and I had a really helpful talk with her last night - thank you so much. To summarise - get over the embarassment, wear the incontinence pants and mop up afterwards if necessary. All I have to do is get to the hospital and the people there have seen it all before. And ask for some sleeping tablets even if only for emergency use.

Note on process: I've really struggled to overcome verbal paralysis to write this blog for over a  month but doing it created an odd calm period.