ha guys help me out iam down like i have stated before i had my partial glossectomy with a flap taken from my arm in may and it just seems like this recovery is taking forever i have alot of saliva and mucous that especially when i drink ensure iam mostly off the tube and i made an appt for a prothesis or to talk to a dentist about a prothesis but it seems like i have alot of problems moving my tongue and trying to eat i can't even get chicken and stars soup down the both i can get down but the stars stay in my mouth . also my speech therapy is almost up and i feel that my speech still needs work but the therapist has pretty much told me that is as good as its going to get i hate to go on whinnig but iam feeling down can anybody relate

thanks guys

hi cowie,

you've been thru alot and your body needs time to heal.. you seem to be making progress.

with just rad and chemo, it took many months for me to learn to eat and drink again... but it happened slowly over about 2 yrs. some foods are easier to eat. without saliva, greesy foods work best for me. surprisingly, noodles can be very hard to eat if they are not cooked well and lack oil. ice cream, yogurt, pudding. mashed potatos with gravey. i ate baby foods - the sweet potato is fantastic.

give yourself time. i know it can be very fustrating. eating is a big thing in our culture and i felt that i was missing out on many social levels. with time all that improved and i've learned to eat well enough to feel comfortable in normal situations. however i still have to select foods that suit me... i feel that in time your eating will also improve.

be gratefull for the healing time. although it can be a real pain in the ass, do what your team suggests. hopefully your body will respond.

don't worry about whinning. you are asking for help, and it comes. certainly there are folks that can advise you better than me... but then i've seen your post here for a couple of hours, and thought it was time for a reply.

smile, look for a funny movie. sleep is also good as it gives our bodies healing time. if you have a pet, pat it. enjoy some sunshine and see what flowers are showing color. listen to birds.

cu,
larryb

Hi Cowie,

I'm sorry you're having such a hard time but you have to understand that you're just finishing treatments and you need to give yourself time. I know it's hard. I had a total glossectomy in July '03 so I know how hard speech therapy is and how hard eating "real" food is since I just started eating last month (still take liquid supplements too). I'm "graduating" this Monday from speech therapy after completing about 14 sessions. I didn't start therapy until I had my prosthesis and even then I surprised the hell out of my therapist at how good my speech actually was before we even started. I know first hand just how hard it is! It takes A LOT of work, practice, patience, frustrating moments, time and determination (to name a few) to talk but it can be done. My therapist said that according to the textbooks, there are many words / sounds that I can make that the textbooks say otherwise. Although I can be understood without wearing my prosthesis, my speech is 100% better when I have it in. It sounds like you don't have yours yet, so just wait until you hear the results once you get it.

I also can relate to the excessive saliva. It wasn't until I had finished radiation that that problem cleared up greatly. I use to have to sleep with a towel on my pillow to keep me from drowning! My mouth is much dryer thanks to radiation and will never be the same as it was post treatments but that's just something I know I have to live with.

And please be patient with your eating issues. I can't relate to having problems moving my tongue but I can relate to food getting "lost" in my mouth. I try to move as much of it as I can to the back area of my throat after trying to chew it to death and then flush it down with water. It may not be the best technique, but it's one that's working for me so far.

I'm sorry to ramble but just wanted you to know that you're not alone in this battle. You're still healing (as I am) and you just need to be patient. I know you probably hate hearing that all the time (as I do) but it's a fact of life now. Keep talking - even if it's to yourself! It makes for good practice.

Please keep us posted on how you make out with your prosthesis. I think you'll hear a world of difference once you get it.

Hang in there - it does get better although I find it hard, at times, trying to get use to my new "normal."

Nancy

thanks guys i needed a little pep talk its just hell to once be so active and all of a sudden it comes to a screeching halt i had so many plans for the summer seeing as how last year my summer was shot with my first surgery and rad therapy thank god i did not have to have rad therapy again this year after my second surgery i think it may well have done me in that was real hell last year but this is starting to rank rite up there . i go to columbus this thursday to talk to a dentist at the james cancer ctr (were i had all my surgeries) about a prothesis i'll keep you guys posted keep me in your prayers as i will you in mine hopefully while iam down there i can get this dam peg tube out too thanks again guys for all the good thought and prayers

your the best

p.s.. computer question how do i put my byline down at the bottom of my thread stating my history surg etc like you guys all do

forget about computer question i figured it out

take care