Miss Vicki,

I forwarded your post to my wife, Susan. She works for a dental surgeon that specializes in jaw pain issues and works with a lot of post-treatment cancer patients. He was also asked to join a project at MD Anderson to address this type of pain in oral cancer patients. I will make sure she knows of your request for help.

Ed

Hi Miss Vicki,
I have been thinking of you all week.

I also realized that TASTING the food will be a problem for you, and I feel sad.

Food can be so pleasurable and form such a part of our daily life. And then without the ability to eat and taste, it becomes a chore. Feeding to just to get the nutrition becomes tedious. Not to mention that food and drink are also such social rituals.

Without being able to enjoy these things like we used to.... it is a lot to adjust to. I have a hard time dealing with it and I still have half a tongue.

I also have hard time adjusting to a different social life since I can't speak as well. I used to be very chatty and talkative. Now, speech is difficult. I can't or don't express myself as often or as in-depth. I often feel cut off from people.

Sorry I don't have any cheery or helpful advice today, but just wanted to let you know that I care and am thinking of you.

(It would be great if some others who had the entire tongue removed could share with you.)

Michelle

Well that was what I was hoping for. Believe it or not I can taste. I put things in my mouth just so I can TASTE them. I will never go out to EAT again. This also means my husband won't either. For he won't without me. I told him that Iwould go with him but he refuses to do this. I love to cook always have, and I am DAMM good at it. I still cook but it is certainly not the same. I even make my own bread and rolls. They smell wonderful and what I would give to butter me up a hot piece and just go to town with it. Not ever having a piece of birthday cake and ice cream, really upsets the HELL out of me. I tell you it is like I have been cut out of the world picture. Then there is the talking. I can talk, people do understand me, however I am like you, I used to talk ALL the time,,I was the talker, the story teller, the singer, I made announcements at my work. LOL. Now I only say what I have to say, no extra. I just smile most of the time. I tell you this has been HELL on me. I just cannot believe that THIS is the best they can do to SAVE a life with CANCER. This is my 3rd time with it and I can tell you that I would have NEVER done this had I of known that this was the way I would end up. I pray that I live long enough for them to figure out a way to undo the damage that THEY did in removing the CANCER. I know how big my CANCER cell was,,,,TRUST me they did over kill here. They admitted it. TOO LATE TO DO ANYTHING ABOUT IT NOW!!!I was just told that I will never open my mouth any wider than I am right now. Why?? Because I was radiated twice,,,my tissues have turned to stone,,,,,I won't give up trying to make it open tho...What else do I have to lose....Nothing....Anyone out there that would like to talk about this let me hear ya....Always Miss Vicki

Just my thoughts....

Important things that have no tongue required....

To laugh and to smile...
To love...
to take pictures...
to ride rollercoasters...
to hold hands in the park...
to dance...
to feel joy and happiness...
to use the Internet...
to send cards to your family and friends...
to plan a wedding or other major event...
to throw things at your husband...
to spank your children...
to go to the movies or a concert...
to play the drums, violin, cello, piano...
to be a mime...
to play baseball or soccer...

To live your life and be happy!!!

Cindy