Brief update and whine session:
My FEEST test is scheduled for Friday at my ENT's office. The speech pathologist from the hospital is coming there to observe it and help offer solutions to whatever is found I guess, but she's a different one than the one I saw last the hospital and I'm hoping maybe she has some other exercises. I'm glad it's being done at the ENT's office--I'd just as soon not have to go to the hospital for a few weeks--I've been there way too much this year!
What I'm really scared of is they will tell me at the end that my epiglottis is too worn away and I simply can't swallow solids. Ever.
Yesterday I did some liquidy mashed potatoes with turkey gravy (took an hour to eat a small bowl of this) and some cream of broccoli soup with a little cheese melted in (took another hour). Total calories: maybe 300. And that is about 2 hours of really *concentrating* while I swallow tiny sips. I can't sip and read email or talk or do much of anything other than watch mindless TV or I start choking too often. I want to get off the tube but how will I ever find the time to get the nutrition I'd need every day orally, in liquid form, at this rate of consumption? I'd have to spend half my day sipping and occassionally coughing it back out when it goes down the wrong way!
Anyway, because I could do the liquidy instant potatos and gravy--which are fairly thick--and I seemed to have less episodes of things feeling like they were going down the wrong way, I had a moment of optimism today and decided to try some eggs scrambled very soft. I had a moment of triumph because it felt like the first bite went right down. And it did. Right down to that little platform my epiglottis makes when it doesn't move down correctly, apparently, and then just sat there. So after another bite or two I ended up coughing up several bites at once, then trying to reswallow, coughing when they went down the wrong way OR they got caught again and finally giving up and giving the eggs to the dog.
I am not ready to beleive this is the best I can recover back to. I just feel SO frustrated. No one even warned me this was a possibility--a permanent swalowing problem that is--I expected it would be bad during and right after rad but that I'd recover. As it seems most people do. I want to believe that the swallowing practice is making me better but it only seems to be making swallowing liquids better. Maybe.
I need encouragement. I'm in my tenth month of fighting one kind of canfer or another and I want to gte on with this last fight (though it's really against a side effect of treatment) and it seems to not be working very well.
Nelie
