Lakeswim - I have been thinking of you too ! Glad to know all is going good for you ! I think we are very close in terms of marking the date when radiation ended - that's the date where docs use to measure how long one is NED.
My very first treatment was rad/chemo which ended Dec 2018. I was then under observation for 12 weeks to determine being a WW candidate. And then had 6 rounds of Xelox from April - July 2019. I did not have any stand alone chemo pre radiation like you did, only post.
There were definitely side effects after undergoing the various treatment although as you mentioned, probably insignificant in the view that we manage to escape surgery (for now!).
The radiation has apparently thinned the skin around the anus - so whenever I have some form of mild diarrhea due to some trigger food my bum will result in a tear where fresh blood will be spotted each time I get to the toilet. This totally freaked me out in the beginning as you can imagine being a WW-er but glad to have it all explained to me by the doc !
I tolerated XELOX pretty well and had little side effects, it did however messed with my brain big time which I did not expect taking me to some really dark places where I have never been ! Thank goodness I had a reliable counsellor at that time, otherwise I'm not sure how I am able to get through that period. My mood recovered as soon as chemo ended. Everybody spoke of the physical side effects and I had no warning of what it could do to my brain !
After chemo - I'm feeling joint stiffness on my knees, arm and even fingers on and off which is an annoyance as I have a rather active lifestyle these days. I will have to ask my onc what that is all about. I have some mild numb/tingling sensation on my fingers and toes time to time but nothing that irks me. I also noticed that my bladder gets full up easily and wanting to go to the toilet more often but I was already warned of that due to the oxy affecting just about every nerves it can find.
PRS - Keep us posted on your next scan ! I am getting ready to cheer you on for when you declare another all clear for your 4.5 NED !!! You are our beacon of hope on this WW thread !!! Thanks for the encouragement on the regular checks - I sure hope it gets easier. By the way, seeing as we have not gone for any surgery as yet and that our tumour is under complete clinical response - how are we being restaged ?
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled