An arbitrary point to post an update on my new normal.
I was told neos can continue to improve for 2 years and last year I found that hard to believe as I felt everything had settled down. But in subtle ways, I have noticed changes. I no longer feel so uncomfortable when filling up - that may be improved abdominal muscles. It means I don't get quite so much notice of need to empty, but I'm learning to re-estimate. I'm less likely to leak unless at max capacity.
Nights have slowly improved but there's still a range of function from completely dry if fullness wakes me in time, to a fair amount of leakage if I'm deeply asleep. I can sometimes predict the night ahead according to how quickly I'm filling up in the evening. Too much water late in the day is likely to mean more output at night & I just can't hold so much when asleep.
Occasionally I still have that 'wow, this was a pretty big decision' feeling. Choosing the risks and consequences of major surgery compared with the risk (however small) of an invasive tumour (& consequent poor prospects) and side effects of BCG. Not an easy choice to make but I still feel happy that I opted for best chance of no more tumours. I'm fortunate to have had a choice.
Now I'm getting on with everything I want to do, but schedule neo emptying into my timetable each day & am still conscious of keeping my fluid intake at a certain level. Partly just my nature to be very organised!
