This is Miss Vicki, The cancer on the floor of my mouth had moved into my jaw. I had my jaw replaced with the bone from the lower left leg. I had a skin graff also to make the flap.WHich still is not healed. I still have my upper teeth. My tongue is the size of a dime. I had radical neck dissection on feb 04. No radiation for I had radiation twice already. My cancer was first diagnosed in 1989 as tongue cancer. It came back again in 1999, this time it was worse than before, I had to have 6 weeks of radiation plus surgery to remove half of my tongue. Now this in Feb. What I need help with is this, since the surgery I have had no theraphy with my mouth. I can hardly open it at all. I go to 3 different doctors every two weeks. I cannot talk, I also have a trache and a feeding tube..I have begged, on paper, for help. I feel like I am just here wasting away. I didn't have all this done to just sit here now and do nothing now!! However I do not know what to do. I am so pissed as I am reading all the posts on how well everyone is doing after there sugeries which is aswume, and then there is me. My Doc says that since I have been radiated twice it is taking longer for things to heal and for me to be patient. However my mouth feels like a rock and my breath, omg, does it reek because I cannot even get anything in there to clean it with. Which is about to drive me nuts..I started using some tongue compressers to open it up. Each day I have added another one to it so far I am up to 7 of them taped together to force my mouth open, I told my doc this and he said that that was okay for me to do..So what gives here. It has been 6 months since I had the surgery, shouldn't I be doing something other than nothing by now???The trache cannot come out because the neck is still to swollen for my to breathe on my own. The flap is hanging down back into the throat. They want to wait to see if this will go down on its own. Well hell isn't 6 months a long enough wait??? I live in Las vegas and it is dry as a bone out here. So I am constantly using the bullets to wet the trache. I spend all my time with it. I can hardly go do anything because of it. I still cannot lay flat to sleep, that is when I do sleep. Which is another problem. I am ready to scream here. All my doctors say is Vicki don't push this, you have had a major surgery and it is going to take time to heal. I realize this, but I just feel that I should be doing something to keep the mouth opened, that #1. Number 2 is that I should be doing some exercises to help me to learn how to swallow again. I would think anyway. They were doing some things in the hospital with me. But nothing since then. Please someone give me some pointers to help me along here,.I don't know what else to do...Vicki Lynn
