Welcome, Gayle!

There are quite a few of us who had partial or total glossectomies, c/w the free flap and neck dissection combo that unfortunately seems to be so popular. What a horrible time you must have had in the hospital, eh? It seems as though recovery time, and extent of the recovery varies a whole lot from person to person.

Not sure if you're going to end up getting radiation and/or chemo once you've had a bit more time to recover from that surgery. In my case, I started radiation maybe six weeks after my surgery. By then, the skin graft site on my thigh had mostly healed and the wrist flap was starting to become more comfortable. The skin on it was easier to scratch for many months, but it got better. Now it feels almost the same as everywhere else, other than the obvious scarring. The neck scar is almost unnoticable, and I have full range of motion for my neck and shoulders. My new tongue works alright, I suppose. Can't stick it out very far, but my school teachers taught me not to do that because it is rude, anyways.

Eating and speaking more clearly also took me quite awhile, but I think I had an easier time than plenty of others. Once they let me out of the hospital, I was almost able to eat as before surgery, until they started zapping me. Then after a few weeks, I was only able to eat liquids again. Lived on soup, milkshakes with protein powder, Boost/Ensure type products, juiced vegetables & fruits, etc. Maybe three weeks after radiation ended, I could eat mostly normally again, although to this day I still have trouble with certain things, like manouvreing a sushi roll in my mouth, or dissolving really sticky things like peanut butter.

Sounds like you had to get the PEG tube. Luckily I didn't have to deal with that bit, so I can't say I know what that's like. I hope you recover more range of motion and can get that thing removed soon.

My energy level was never really a problem, even while undergoing radiation treatments. I'm really lucky that way - some people have a horrible time with it. All I can suggest is to try very hard to keep eating/otherwise comsuming your calories. More calories than what your otherwise normal required calories might be for your physical size, especially if you're going to get some additional treatments in the coming months. Christine posts often about this recommendation, and it is a very helpful one.

I'm not sure if there is something specific you are expecting to recover more quickly from. This is a very significant surgery you have been through. If you have additional treatments coming at you, those also take a while to recover from. If you're like me, all you want is to get back to normal - get back to your routine. It was killing me to walk over the bridge to my radiation treatments and see people out there, paddling on the water. All the while knowing that my wrist wasn't healed yet and splashing some of that water on my wrist could have some serious effects on my recovery. I also just wanted to get back to work, but thankfully there was a nice short term disability program that basically made me stay home and rest up. In retrospect, I needed the time to heal, even though I felt like I could go back to work and be mostly useful.

Last edited by Vanpaddler; 01-26-2015 04:27 PM.

Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards