Hello I have not been on this site for some time. I have been trying to deal and cope with all the ups and downs that go along with ORAL CANCER. I had my jaw replaced along with a neck discetion last year. They removed almost all of my tongue. There is a little piece of it that rubs against my back tooth, don't know why they left it. It is always so sore that it hurts to talk. This is my problem that I am hoping that someone out there can help me with.It has been a year and there are so many things that I can do yet so many that I STILL CANNOT do. I would like to hear from any of you that learned how to eat without a tongue. I am having a very difficult time trying to swallow water...It comes out my nose.. I want to get off this feeding tube, however I just cannot see that in MY future. I had a trech which was removed in October. It has just this week closed. I thought once it closed that I would be able to do a lot of things that I hadn't been able to do....WRONG. I need some inspriation from my fellow friends. I need something to help me get out of this rut that I have been in.,,,If you can help me in ANY way, I would appreciate it. Thank you for your time....Always Miss Vicki

Jaw replacement and tongue removal,,,please help...read earlier post,,,miss vicki

Vicki, you are always in my thoughts and prayers. I don't know how much good I can be to you, but know I am praying for you. Love, Carol

Vicki
Like Carol I cannot help with your question but you are such an inspiration to all of us. I hate it that you are feeling so bad . Hopefully one of the forum members can give you some advice. Please don`t get despondant Vicki, you have come so far and battled so bravely, don`t let it lick you now.
I feel such a hypocrite telling you to stay brave , I don`t think I could have handled half of what you have had thrown at you, all I know is if wishes could help, you would be healed.
Thinking of you
Take Care
Marica

Dear Vicki,
I have been thinking about you - - - hadn't seen any posts and I knew that you had been feeling discouraged last time you were here. So glad you 'returned,' although I am sorry that things don't seem brighter in your world. I DID pick up on the comment that there are "so many things you CAN do," and I hope you bring those positive things to mind when the day gets the better of you. My Tom has almost stopped mentioning the long list of things he misses, and has focused on the little things he has begun to do....like little exercises, walking, improving his standing heart rate, drinking better.....It looks like his PEG will be in for quite awhile, and while he used to almost cry over it, he is now looking at it as his tool for full recovery.
I cannot imagine your discomfort and level of discontent, Vicki,but I will say that you ARE a great source of inspiration to us....when I tell Tom what you and others on this board have suffered and conquered, he is renewed in his fight. We will continue to pray for your recovery and for His peace in your life......you know you are not alone.
Love
Nicki

Oh I don't mean to sound like a cry baby. I am honestly wanting some input. I have tried everything that I can possibly think of so I thought I would reach out to all of you for some highlights. I mean there are so many things out there that I don't know about. One post could make all the difference in the world for me. I am at the point now where I will try anything just to continue my path to recover as much and as best that I can. I just refuse to accept some things...I feel that there is a way to do almost anything if you put your mind and heart into it. I have been fighting so long that I would not know how to spend a day with out it. It sure would be nice tho to try. I have so much pain in my jaaw area, that Morphine isn't doing a thing for it. It is just a constant throbbing. It never stops. When I try to stretch my mouth open,,Tears just flow...It hurts so bad, but I still do the exercises even tho it has gotten me nowhere....My talking is of course affected by this because I cannot open my mouth wide enough to pronounce the words..I wish I could come on here and tell you how wonderful everything was,,brag about just being alive,,,,but being alive isn't living...I am DAMM PROUD to be ALIVE..I am also honest enough to say that I want more than this. I know that I will never ever be who and what I once was. But I can try to get as close as I can to a better quality of life. That is what I am striving for.....The Best that I can be....Thank you for helping, listening, caring and sharing...Miss Vicki

Miss Vicki, sorry to hear of your difficulties. The only help I can offer is that I read a post earlier that talked about some therapies that had been successful for someone on the board that had had their tongue removed. I'm sorry I don't remember where it was, but I remember reading it in the last couple of weeks. You might try a search. It was a response to a request for advise on having the tongue removal surgery by another member of this board. You know you are in my prayers.

Vicki, I, for one, am proud to know you. You are an inspiration to me and others. Please know I am here for you. Praying that someone can help your situation. I KNOW you are not being a cry baby, God knows what you have been thru and continue to deal with. Would you want me to discuss your situation with my oral surgeon at University of Maryland? He is an amazing man and might be able to offer help. Love, Carol

Thank you for all your posts. I am at my wits end here. I am not giving up,,, I just need to hear some ideas, some to do's, anything that you have tried that worked for you. Please read my earlier posts and let me hear from you....Always Miss Vicki