Jon, I hurt for you. I am a VERY angry survivor. And I sense in you the need to get right down to it, so this is what I can offer re your tongue not knowing what to do. That is exactly how I describe my inability to swallow food. I just can't get most things (and I haven't tried much) to go anywhere unless I wash it down with water. First off, I want to remind you that I'm a bit ahead of you in recovery. And things HAVE improved. Even though I hate where I still am (still have PEG tube) they continue to improve. I had c couple tests done early this year and results basically were that my throat and tongue were still irritated fom radiation. This was 7 months post radiation. I FEEL your frustration. I have issues with liquids and food going up my nose. My ENT says my tongue just isn't working right YET and it's pushing crap up my nose. But he says my anatomy looks good.
So, I hope this helped some. There's probably a lot more I could tell you that'll come to me later. But, honestly, it has gotten better. Not at my pace and that's hard to accept when you don't have control like you used to.
Shoot me more questions if need be. Good to be here with you all finally. If only I had known about this website a year + ago. I might've done some things different.
-Wendy