Hi Kazy, II hope I am not talking out of school, but I know of a brave young person whose name and username I will not divulge who had a total Glossectomy. This person was 33 when tongue cancer was detected. This person has successfully fought hard to regain a normal life as possible. This person is working, is a parent, and has trained hard to eat as well as possible with no operable tongue. This person has a kick-ass attitude who has overcome so much at such a young age. This person has helped and supported many, many people in this forum including myself for which I will always be grateful. I had similar surgery nearly 12 years ago but I was 68 when diagnosed. I am truly sorry you are so young to have gone through this. I was on a peg tube from 04 thru 07. I was able to swallow liquids from 07 thru 13. Got aspiration pneumonia in Feb 14. Should have gotten a barium swallow test (MBS) when I started losing weight a year earlier. I strongly advise anyone who hs compromised swallowing to obtain a MBS when any symptoms such as weight loss and shortness of breath occur. The other folks in this post have given good helpful advice. I pray and hope for you to have a great life and don't give up. Things do get better!
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Jim Haucke
Tongue ca dx 9/03. Two surgeries 11/03 and near total Glossectomy 2/04. 36 radiation treatments 3/04 thru 5/04. Peg from 2/04 to 10/07. taste buds intact with liquid oral feeding with flavored nutritional drink, nutren 2.0. Wt loss 2013 with pneumonia 2/14. Peg inserted. Hope to get swallow therapy, get a MBS, and if passed, carefully resume oral feeding.