I have been on a PEG since Feb 04 when a I a near total glossectomy among other things. I was told not to even think about eating or swallowing until radiation was over (in May 04). Then in Jine 04, I got a cellulitis infection in the neck incisions where I had radiation and a neck dissection. My ENT kept putting therapy off until Nov 04 (said I wasn't "healed" enough). After a year of assorted therapies, I finally passed a modified barium swallow test in December 05.
Because of all the delays and my own weakness, I feel I have become dependent on the tube. Another factor is that because I have no workable tongue, my therapist suggested taking liquids and pastes through a syringe. I push the plunger into the syringe to push the "food" to the back of my throat for swallowing. I do this several times a day to keep my swallowing intact and also use a therabite to stretch my mouth daily.
Needless to say, I can't go into a restaurant and use a syringe (just think how it would look pushing a sryinge at the table) so I take my PEG nutrition first in the car or home first. I have tried to eat something without it, but without a workable tongue, I can't get the food to the back of my mouth.
Sounds like a like of ecsuses for not getting off the tube which probably will need changing soon since I had 2 infections in the area where it goes into the stomach.
I understand some folks who had total glossectomies can eat things including solids by mouth. I adnire them. Maybe they are more determined then me. I haven't found anything in many searches where the sunbect of assisting people like me to eat is discussed in terms of providing help. My therapists were helpful and I am grateful that they got me to pass a swallow test but they had practically no experience with HNC patients let alone experience with the small subset of "glossectomites".
My point in this lengthly piece is to encourage all to get therapy as soon as they can. I hope most have enough tongue left that can function to get the food to the back of the mouth.

Jim Haucke
-------------------------------------------------- SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies