@dragonfire Unfortunately, unless your doctors or oncologists have actually had radiation to the head and neck, they will never really know what you are going through. Chances are you are one of less than three head and neck patients they have ever worked with, and likely the only one. Just ask your PC. You cannot expect them to know what you have gone through.
As my wife often says, "You don't get it until you get it." She has MS. Her doctors haven't much of a clue what her daily life is like. They will never understand MS unless they themselves have that dreaded illness. When she sits down on the floor of a retail store and I stand there waiting for her legs to start working again in few minutes, other shoppers are alarmed at my apparent callousness. My wife isn't upset. The shoppers are like your doctors, having no idea what is going on. We smile at each other. We wait. I get her back on her feet eventually.
You will get better. You have passed through the hard battle. You may have lost some things physically but you have gained strength mentally. You can swallow. You are not on a feeding tube. You do not need your face rebuilt. You have won.
Edited: I should add, I understand what you are going through. This recovery can be mental torture at times. The doctors didn't tell you everything but they probably told you so much information that it didn't all get absorbed or they didn't want to scare the heck out of you. Doctors usually want to put you into a positive frame of mind, knowing just how difficult this process is. Just getting through a complete radiation series is often a difficult thing for many patients, myself included. I don't know if I would ever do it again nor do I wish to face that question, knowing what I know, experiencing what I experienced. Having a hip replaced is a simple walk in the park, which I had surgery six months ago. "'Tis but a scratch." Cancer treatment? This is why we are here.