Hi! I have just joined this site and have never done anything like this before. I am not good at using computers and am only learning because I can no longer speak clearly due to total a glossectomy during my surgery for adenoid cystic carcinoma in Sept. of 2013. I am not even sure if I will be able to retrieve any response to my post. I will start with one item that has caused much distress. I am not able to eat or drink anything. That is my permanent condition. I will have a feeding tube for life. I haven't been able to come to terms with all the loss of socialization it has caused. I never realized how much that first cup of coffee in the morning, a slice of pizza, or that candy bar meant. It even bothers me to watch all the food/restaurant commercials on TV. How do I cope??

Welcome to OCF, Pattilynn! Im glad you have found our group. We can help you with info and support. You are not alone with this. There are others here who face the same issues every day.

Depending on a feeding tube for life isnt the best situation but it can be done. I can barely eat but at least I am able to eat a few things like yogurt, soup broth, and I make the best smoothies. For some odd reason I am always watching the food channels and learning all kinds of new cooking tricks. I do cook once in a while for my children when they visit so I try out new creations on them. Im also several years into this so Ive learned to adapt. In time you can too.

Hang in there!

I appreciate your quick response and that I was able to find it. Looks like you have been through a lot in the past years, and have been able to stay positive.

Pattilynn, I know how you feel. I can eat soft foods but not socially because of difficulties I experience. I wasn't told I wouldn't be able to eat properly after treatment so it has filtered through my consciousness gradually and now a year later I feel I have just about accepted it. There are times it hits me harder such as a recent invitation to a barbecue, an important event I will have to attend. I'll have to avoid the food! A barbecue is like my worst case scenario.

Your situation is far worse but I can well imagine how hard it must be. Now that you are online, you should be able to meet up with other people with the same issues.

I wish you well and hope we hear a lot more from you:)

Welcome. There are some here who had lost their swallow and new treatments are able to restore some swallow, so keep reading and something might make it better. At least you have found a home where many understand exactly what you feel and go through each and every day. Don

Yes.. there is always hope. Please try even little sips and tastes if possible. Look at new things that are available to you - there are always new advances - there is also a site on the web for tube feeders that teaches you how to eat healthfully with a peg. It may not change that you can or can't eat, but it may give you more control if you can make your own foods and put them in your tube. I know it damages you on a social level, but you can still go out and do other things with friends. Go bowling, dancing, to a play. Something where food isn't the focus. Also everything has a cell life. One of our members had a right side facial paralysis. He assumed that was it. A few years later he started getting movement back as the cells regenerated. I have noticed improvements 4 years out. Try try try. You're throat is a muscle. It's like weight lifting, more practice, the stronger it gets. The trick is to NOT STOP trying. Hugs and welcome

Hello Pattilynn, I feel,for you. My Husband Kris has also had a Total Glossectomy as well as a Total Laryngectomy. Surgery was March 2012. I guess he is lucky in that he can swallow and does not use his PEG tube. Do you aspirate if you try to swallow?
I do get the lack of socialisation due to the inability to eat. Although Kris does swallow all his nutrition , it is an all liquid diet. He has to tip his head and just pour it in. Then there is the dribbling from being unable to sweep the mouth clean due to no tongue. So he doesn't have anything but a coffee when we go out. I have to ask for an empty cup too as he needs a cup with only a little bit of liquid in, otherwise he wears it when he tips. So, yes, we understand. But life is still good. It's better than the alternative and yes, we know it takes some time to adjust.
Hang in there.
Tammy