New as of today. Wish I had known about this site years ago.
In brief: T2N2 (L) tonsill SC cancer 1993. Presented as a painless lump sensation in the throat upon swallowing while in Desert Storm. Upon return the post ENT specialist assured me I didn't need to worry but 18 months later had palpable neck nodes and knew something bad was ongoing.
Underwent Tonsillectomy/(L) radical neck then 6 weeks twice a day radiation treament. Getting through radiation treatment was the toughest thing I've ever done. It is my understanding this form of XRT treatment is no longer done(told tome by ENT @ MD Anderson 2 years ago).
5 years later developed shortness of breath on long runs and found to have complete (L) vocal cord paralysis. Completely quit running 5 years ago as couldn't get enough air in. Really have to pace my self with any form of exercise now to ensure enough air gets in. Speech problems began 5-6 years out and have been relentless/progressive to date with no functional tongue motion remaining. Difficult to understand me as expected but can communicate enough to be basically understood. Now at the point of completely retiring very soon and trying to just deal with current issues.
I would like to hear from any of you that may have had/are having the following issues I deal with everyday/all day but need advice on.
a) Swallowing (difficult) is always associated with aspiration past 2 years but worse now then ever; 2 pneumonia bouts in the past year (one from documented Influenza A despite the flu vaccine). When do you reach that point that you know you have no choice but to get a PEG? I'm one who drags their foot as long as possible and almost have to be hit over the head before I give in. I am my own worst enemy at times because I'm afraid to burn any bridges I can not go back across later on.
b)Air exchange: I have exercised all my life but now with breathing getting to be a major challenge with any type of aerobic exertion, I'm wondering if I should seriiously consider some type of T-tube. The thought of this is scary to me. Any of you been in similar circumstances or had to have some form of a T-tube placed? PLease share you experiences and advice.
This is a little about me who has been trying to dodge boulders along a path I began to walk 15 years ago.
Thank you