Hi Vicki! Your posts made me cry. I have felt all the same things you are feeling, just in smaller amounts and for a shorter period of time. I have always felt I have fought my doctors on almost every point about timing of treatments & pushed & pushed & pushed. I drank water a week before the speech & swallow therapist said it was ok, I continued to eat as much "real" food as much as I could stand through rad & chemo, I hated the peg tube & the formula so much that I wouldn't use it to the doctors dismay. I stopped taking the pain meds during radiation because I couldn't take the constipation anymore. On & on & on I was rebellious. It sure seems to me that you have a right to be frustrated & push like hell to get some action. Why are things taking so long to heal? Is it low nutrition or something else? If that flap isn't right, demand they fix it so you can get the trach out & start using all those muscles again to swallow. The more that time goes by the longer it will take to get them working again. I'm sure you know all these things & are trying to get resolution. I feel your frustration! Were you originally treated at a comprehensive cancer center? Are you being treated at one in California now? Force that mouth open. Stretch, stretch, stretch!! Fight like hell! Get as much excersize as possible & stay as physically active as possible. Turn up the music real loud & dance by yourself! Get strong! Use that anger! Do you have a laptop computer so you can use speech software to make yourself heard? Don't give up! Try, try, try!! My thoughts & hope are with you!


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04