I had two surgeries for tongue cancer (December and March)which was 13 years after my first tongue cancer. After my second surgery I was left with about 1/2 my tongue and was recovering to the point that I could eat soft foods pretty well.
Then I had 33 radiation treatments and the burn to my healthy tissues is one of the worst the doctors have ever seen. During the last two weeks of radiation I was hospitalized and put on TPN (nutrution through IV). Now 6 weeks after treatment the healing is still so slow that the doctors are unanimous is recommending/insisting on a feeding tube. This is something that I had hoped to avoid. Initially none of the doctors thought it would be likely that I'd need it due to my relative good health otherwise and my ability to eat prior to radiation. However this is just the latest in several examples of how nothing they have predicted in my case has turned out as expected.
I am scared about the tube. I am hesitant to have to have another general surgery - not knowing exactly what I will wake up to. I am also upset about admitting that I an not regaining my ability to eat on my own and no one is sure how long it will take.
Some of you have mentioned having tubes and that it isn't so bad overall so I'd appreciate any reassurance or suggestions (one person said to make sure it comes out above my waist line rather than right on it so I can get my pants on) I have also heard stories about tubes falling out. Is the tube painful? Up until now I was trying so hard to eat on my own but there is no way I can take in enough calories plus swallow medication etc. I'm only able to swallow a few spoonfuls at a meal and it takes a long time. After a while it burns my throat and pain radiates into my ear. I can remain on the IV but it means staying in the hospital and the doctors have given several reasons why nutrition through the gut is better. I have become more or less resigned to having to do this although I keep hoping for a miracle that I will suddenly be able to swallow.