I been eating like this for well over a year and if they ever let me get chompers, I want some good old fashion beef, pork and chicken . Strange how you eat what you have to and ignore the foods you really like.

Great News Angie! Glad to hear the surgery went so well. The swallowing hopefully will get easier with time and rehabilitation. THere are therapists that will be able to identify what the issues are and help him work through them.

Wishing you two all the best!

KATE

Sandy -
A few things that worked for my husband during RT and as things are starting to taste right again:

cream of wheat
oatmeal
cream of mushroom soup - sometimes with some minute rice cooked and stirred in
bread pudding with syrup
all of the above made with whole milk for the calories
also, macaroni soup went over well before the taste buds went

I really have a concern among many other numerous things that go on with this dreaded disease. My husband has had a peg since April 08 and here we are a year later March 09 and he still hasn't taken anything by mouth. We did start therapy for swallowing last year, but then the recurrence ,and our life just came to an abrupt stop---again. The cyberknife treatment did wonders on the tumor in the mouth -- it's gone and the one on his chin is shrinking slowly. I try to give him ice chips just to get his mouth moving, but I think he is just plain afraid and he says that he is not ready and that its even hard for him to swallow a drop of water. How pushy should I be ? God only knows how he suffers and I hate to appear like I don't understand. Any suggestions or help would be greatly appreciated. Thanks. Claudia

Claudia

Can he go back to the therapist again? I have been in a similar position where I was starting to get back on track and then had the operation for ORN and was back to square one, again.

If he is supervised by a therapist, he might have more confidence. I was fortunate after each surgery that my swallowing went smoothly and they encouraged me to swallow while I was still in hospital even after my jaw was reconstructed, I might add half the water ended up down the front of me to begin with.

It might sound crazy but I'm glad no one besides nurses and therapists have seen me dribble water or mushed up food out of my mouth when I first started to swallow again, its humiliating - he might feel the same.

Even if he can try a little water through a straw that would be a breakthrough and probably give him the confidence to have a little more and so on. I think under supervision from the therapist would be the way to go.

It really is the PITS... but it sounds like you are doing an incredible job.

Karen

Claudia - I left you an important PM, would you please read it and give me a call? thanks - Brian

I wish at times I had let that anneurysm be. I just was getting back tyo try some different foods and bam, lose from 184 to 160 and regain the pain and it cuts into my food supply. Sure hoping I regain something soon.

Thanks for the great list Christine. It'll come in handy when I start radiation. I haven't been able to eat scrambled eggs yet. Half of my tongue is paralyzed and all I did was end up with eggs packed between my lips and teeth. That was fun. But I did get down some meatloaf with gravy. I think the gravy was the key. Meat! Yea

Hi everyone, Not to sure how this works so please bear with me. My question is has anyone had difficulty with tube feedings where you had a real adversion to eating this way. My husband had cancer of the jawbone in 1993 Feeding tube ever since around 7 yrs ago he experienced difficulty with diarha and blotting. Unable to swallow at all. was getting aspiration phnuemonia no he is only 91lbs. Is there any help out there its like an eating disorder but not that he thinks he's fat just does not want to eat that way now its become a real problem any longtime survivors were in chicago, Il any input appreciated

Hi Brian,
I hope that maybe you might have some informations that could help me. Do you know of any sources that could help with an adversion to eating with the feeding tube. My husband has had difficulty with this for about 10 yrs. He is cancer free for 15. At first this was a small problem losing a little weight here and there now it is quite serious. No one seems to see what is happening they just keep telling him he needs to eat more. I'm not sure if this is phycological it may have been when it started but now it is physical and not sure where to turn. He has been hospitalized for nutrition problems but they never get to the bottom of it. Now he's 90lbs and I'm scared to death. He was only 43 when diagnosed so it has been a long struggle.Any help would be appreciated. Thanks Patty