Gregg, the swelling from an operation like this can take aprox. 6 months to go down. At that point you pretty much look like how its going to be. More reconstruction can always be done down the road. Its very very tricky operating on areas that have had radiation. They dont heal easily.

As far as the tiredness goes, thats due to the radiation. Im surprised the first time you went thru it that it didnt affect you more. Fatigue can last for a very long time after treatments, unfortunately you have had a double dose so it may be even harder on you. Its unusual for patients to go thru radiation twice. There are only a couple people on here who have had to do that. Once is enough of that stuff!!! Its also unusual to be given chemo alone. Chemo doesnt cure oral cancer by itself, its normally used in conjunction with radiation to target the tumor and enhance the radiation's effects.

Regarding your speech, a therapist would be a great idea. Ive just started looking into that myself, even though my speech is pretty good, it might help. I dont know much about helping a patient that has a total glossectomy. Maybe a good speech therapist would be helpful in helping you to gain more mobility to help with your eating. They do swallow tests to see if you are physically capable of eating without choking or having it go into your lungs. We all share your hatred of the peg tube!!!! Mine has been there for 10 months, previously I had it for 1 1/2 yrs.

There are a few people who have had the fibula bone used for their jawbone on here and Im hoping they will help you with the leg and feet issues. I had a jaw made of steel when I had my jaw removed last year. This kind of operation is a big one. It takes a year to recover, possibly more til you get to your new normal. Im at 10 months post surgery and am still healing. Ive had some infection problems so have a picc line and take strong antibiotics 3x per day. I also had 40 hyperbaric oxygen treatments to help with healing. There was a open wound below my ear that had my jawbone exposed, that darn spot wouldnt heal til about 2 weeks ago. I credit that to the combo of antibiotics, the hyperbaric (HBO) treatments and the wound care specialists who used special creams and bandages. I still have alot of fatigue even though I have tried to build myself up by walking, I tire very easily. I dont know if HBO is something that is available where you are. Here in the US its very expensive and not all places offer that service. It is something that would help speed your healing and help with the fatigue.

Im not a complainer either, cant be when I have gone thru this and lived to tell about it. Your story shows me that others have had it much worse than I have with this type of operation. You are a very strong person to have endured so much in such a short amount of time. Most important thing is that you are currently in good health with having the clear scan

Please tell me about the free flap from your thigh. That was done 14 months ago. Do you still have a red area where the skin was taken from? How is the skin there? I have 5 areas where large amounts of skin were taken. These areas are still red and appear very sore but they are ok.

What about your memory? Was it affected at all? Were you kept asleep for any length of time after the surgery? I was kept asleep for 3 weeks and most of my memory for aprox 1 month prior and 3 months after is missing. I only remember bits and pieces of info. My poor son came everyday to see me and I would always ask him why he never came to visit. After he would tell me a few things we talked about, I could then remember he really was there.

Hope I was of some help to you. It will get better in time. Unfortunately it takes a very long time to bounce back from this.