Hi Vicki,
I did not have anything done to my tongue, the only place I had any cancer was under my tooth in my jaw bone. I went to have a regular cleaning and the dentist found my tooth to be really loose. He extracted it and that is how we found the cancer. My leg where they took the bone healed beautifully. It's sunken in a bit but if not for that it would be tough to know that anything had been done, as the incision (which runs the length of my lower leg) is almost invisible now. I did have trouble with my foot and two decubitus ulcers that formed while in the hospital, the cast was put on to tight and one formed on the top of my foot and one on the heel. I didn't have any type of skin graft.
The think I hated the most was the trach, I fought hard to get that thing taken out!! But, I had my radiation after surgery so didn't have as much swelling.
Did you have your entire jaw replaced? My new jaw on the left side works quite well, my speech is the same as before. I did lose feeling in my lower left lip due to a nerve being removed and lost some feeling on my neck and chin, but I'm so used to it now that I don't remember what it was like before! I can open my mouth as wide now as I did before the surgery and radiation and while I eat slower, I eat well! There are some things I just don't bother with any longer, such as chips, but I can LIVE with that. I went to Ruby Tuesdays last night with my husband and two youngest daughters and had the ribeye with french onion soup and it was delicious. I get my steaks with cheese melted on top of them, seems to help and tastes delicious.
Some advice for you. Keep opening your mouth as wide as you can, many times a day. Keep your neck mobile, keep moving it around and stretching it as much as possible.
I feel what your heart feels when you talk about your daughter. I have 7 of them, ages 23,21, 20, 18, 13, 11, and 10 and my heart literally hurts when I see the sadness in their eyes. This has affected them so much more then it has me. But, after one year life is pretty much back to normal for us but with a closeness we would not have had without this experience.
You can get through this, it's tough but it can be done. The radiation was MUCH tougher on me then the surgery. I didn't have the tongue issues you have so hopefully someone else can help you with that.
Did you get a live implant for the entire jaw bone? There is another member on here, Gnelson, that also had her jaw replaced, I believe back in 2000. She is doing just great now. Hopefully she will also respond to your posts.
Take care and let me know if I can help in any way.
Minnie

SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.