Hi. My husband was diagnosed and treated for tonsil cancer May of '03. Unfortunately, the radiation treatment left him 100% dependent on a feeding tube for all nutrition and liquids. His esophagus has scarred shut. At this point it looks like he will never eat again, he is 36 years old. The only way he could possibly eat again is if he has his esophagus and voice box removed and then has his stomach attached to the back of his throat. He isn't willing to lose his voice box for the rest of his life, so he has started to come to terms with never eating again. This is so hard. Who would ever dream of losing the ability to eat. It is so sad. We can never go out to eat. Family meals were always an important thing for him. We have two small children and it is so sad when our son says """I wish Daddy could eat again.""" We are fortunate that otherwise he is health and he is able to work again, once he recovered from the radiation. It is just a sad thing to lose your ability to eat.

We have had such a hard time finding the proper nutrition for him. We really need support but the oncologist hasn't been able to point us in the right direction. We haven't really gotten any support in regards to this. We have had very supportive friends and family but as far as the treatment and resources for him to live a healthy and productive life, we keep getting dead ends. Does anyone know anything about enteral nutrition? We can't find any nutritionists that seem to know much about it especially with for a young man who is active.

Any type of input would be greatly appreciated!

Thank you.

Michelle

Hello Michelle, I too am from Oklahoma,,,Lawton is my home town, I now live in Las Vegas...Welcome to our site..I am so sorry to hear about you and your families situation. I am also on a feeding tube, have been for 6 months and do not know when or if I will ever eat or talk again..It is a heart wrenching thing to have to deal with, but I am still alive..I may not be able to go out to eat with my family or when I cook to taste my meals,,but I as still here to cook them..I wish you the best, Doc will help you with a website I am sure of this..Talk to us anytime you can or want to, tell your husband to come on line and talk to us too..Here you can let it all out,,,we will listen, for we have all been there or are going there,,,always, Vicki Lynn

Hello Michelle

You might find the information in PEGS to be helpful. Perhaps you could pose your questions under the topic re: James Collier; he might have some advice.

Best wishes
Vinod :coffee:

Vicki Lynn and Dr. Joshi,

Thank you both for your replies. It is good to know that there is somewhere we can reach out. If I can get my husband on here I will! He doesn't reach out like I do, but he is getting to the point to where he is willing to do so, I think.

I plan to look thoroughly through the post you recommended, Dr. Joshi. We are leaving for the weekend, so I will have to do so when we get back. A trip for our anniversary, how strange it will be for him to have to wait through me eating!

Oh, Vicki Lynn, I can't imagine my husband having to cook for everyone! It is hard enough just to make his smell the food when I am cooking. It has really made it hard to want to cook. He does say he still enjoys the smell of food. I look forward to getting to know you more! How long has it been since you lived in Oklahoma? I am originally from OKC, but we live in Shawnee now.

I had better go. Thanks again for your replies!

Michelle

Michelle,I have lived in Vegas since 86. However we go home at least once a year..I have family in Shawnee..And Okc..We just got home in July. We have a family reunion every year. It is a week long,,I have a huge family..It is so so much fun. I hope the doc helped you. He is great.. Please let us know if there is anything we can do to help you or your husband..He is so so young, that is that hard part. I was 32 when I first was diagnosed. I have lived a long time with it..And I hate the disease and what it has done to me and my family and friends..Yell, scream, cry, laugh or just talk whatever it is u want to do,,we are here....Always, Vicki Lynn