First thanks for the site, my name is Kenny. I was diagnosed with squamous cell carcinoma at the base of tongue, stage 4 (just because of size), 22 mo ago. I underwent radiation two times a day for 6 wks. They couldn't do surgery first cause it was in both arterys of my tongue. Wanted to shrink it first. I responded very well to the radiation, killed it to date. I lost taste buds & saliva, some of each has returned. Coping with that is a challenge. A water bottle hangs from my hip, but the taste buds are something else. Sugar is bad, "tastes like aluminum", and it can also knock out what's left of taste for awhile. Hot spices are totaly out. I would like to converse with people of like problems & experiences.

Hi Kenny, thought I would just follow up with you to see how you are dealing with things. I have found that the key word to life after oral cancer is adaptation. My water bottle is as permanent a part of left hand as my watch or my wedding ring. I recently discovered a fanny pack water system from a company called Camelbak that has made it possible for me to do things that I really love again, ride across country on my motorcycle, and fly. (There's nothing like having your sports bottle fall out of your lap when you are inverted at the top of a loop in a small plane). I've actually grown to like most of the things that I eat now (anything wet) and my cravings for big chunks of red meat have gone away. I do miss being able to eat a sandwich though. On the bright side, my cardiologist couldn't be happier that my new fruits, vegitables, fish, and pasta diet (with lots of red sauce) has made me healthier overall. So perhaps there is a silver lining in all this. I hope you continue to do well.

My radiation was in 1983 ... quite a while ago. I remember just after treatments eating a piece of pizza ... I might as well of ate the box. My taste eventually returned, but some items faster than others. Hang in there, I enjoyed rather bland foods for the first couple years (breads, oat meal, cream of wheat, crackers etc.)... they at least tasted "right" ... which means not much taste at all ... and yes stay away from those spices ... it eventually gets better ... one of my present food staples is a Taco Bell bean burrito with "lots" of Hot Sauce.

Rick

Hi my name is Teri. My husband will have his surgery this coming Thursday, March 7th. They will be removing part of his tongue and do a neck disection. So far the doctor says he will not need the radiation treatments.

I have no idea what to expect, but I do know our lives will probably never be the same.

Can you please tell me what it's going to be like after th surgery. The doctor says he will probably stay in the hospital 4-5 days after the surgery.

What can I be prepared for? I don't want to baby my husband, he is not that type and will hate it if I do. What is the best treatment or help I can give him? I want to make this as easy as possible for him.

How long after surgery will he feel like eating?
What types of food? Is there some book that explains the diet for people going through this type of thing?
I read all your comments about water, although the doctor says water will be the last thing he will have because the tongue gets the most use when trying to swallow.

Any help you can give me will be appreciate.

Teri, my second reply to you. Make sure your husband has a pen and pad of paper after the surgery. He may have trouble communicating, and that is a really frustrating experience. Be strong and stay by his side.

As far as food goes, mashed potatoes with gravy really floated my boat when I could eat again. Other suggestions, oatmeal, cream of wheat, yougurt, pudding, jello, grits, ice cream and the all famous milk shakes. Please understand that I also had the floor of my mouth rebuilt in addition to all of the other stuff. I didn't have any food for over a week and was really happy when they gave me water. I had a trachea and a feeding tube in my nose also. Hopefully, your husband will not. Anything that could slide down with out tongue action worked.

Anne.