Ok...I guess the way to say this is that what you are experiencing is completely normal, even the pissed off part. We have all been there and are telling you with much confidence that it will get worse before it gets better, but it does get better. You may very well get to a point where you cannot swallow for a bit so that could be tough without a PEG. On the other hand, Kevin had a PEG and hated it so forced himself to swallow through the pain. He would drink some Lortab, use his magic mouthwash and chug a couple of Ensures. And he drank water all day long in little sips. He drank at least 48 oz of water a day. I think it started to get better about 4 weeks out because I remember he ate Thanksgiving dinner, pie included. It was with drugs and didn't taste quite right, but he ate it. There were other times later that he had to go back to the Ensures for a bit.
I hope this helps a bit. It is just our experience, but I know of 2 other men whose wives I have become friends with that found sort of the same situation. That doesn't mean it fits everyone though.
Have you gotten checked for the yeast infection? It might be a pretty easy fix to part of your tongue issues, but you won't know if you don't get it swabbed.
Hang in there. Again, hope this helps a little.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14