I am getting frustrated by my lack of progress in swallowing. I see my radiation oncologist tomorrow, Jan 30th, and was scheduled for a swallow study in the afternoon, which was inexplicably cancelled.
I am being treated at M.D. Anderson, which Business Week rates as the number one cancer hospital in America. I spoke to a New Yorker the other day who was treated for similar cancer at Mem. Sloan Kettering, and when we discussed swallowing, he said that the nurse called him constantly and bugged him so he had to do his exercises and try to eat.
I have felt rather abandoned by M.D. Anderson ever since the two a day radiation sessions ended.Finding this board is what got me through the rough days after treatments ended...not support from anyone at MDACC.
Noone calls to follow up on anything, other than to schedule appointments. I occasionally email a swallow therapist, and she replies, but I am the one who initiated this. Noone even knows why the swallow study was cancelled.
The speech therapist, who I was also supposed to see tomorrow, called this afternoon, telling me she did not know why they cancelled the swallow study, but she will try an reschedule another one. I gave her a pretty hard time...I told her that I did not see how their stupid little exercises like sticking out my tongue was supposed to help me to swallow. She informed me that it is not unusual for it to take 17 or 18 months for some people to regain their ability to swallow.
I guess that my expectations were too high after being told last July that I would be back to normal by February. I have had a pretty good attitude ever since being diagnosed...but I am beginning to lose my patience.
Danny G.
