My husband has had throat cancer 28 years ago and had his epiglottis removed at that time. He suffered from pneumonias every year almost but now the pneumonias are much more frequent. This last one was caused by a virulent bacteria named pseudomonas which is resistant to many antibiotics. He had a PEG tube placed and gets his nutrition directly to his stomach. We were hoping it would be temporary but since he failed the swallow test 3 times we were told it should be a permanent thing and he should be NPO for the rest of his life. We are wondering how we will deal with this new situation and how our quality of life will be affected. Can anyone give us any pointers? We were always very social people enjoying being with friends, dining and partying.

Welcome to OCF! You'll find lots of good information and advice here.

Start with this thread by OCF member Charm2017, who also is now on a PEG for the duration. I expect he would be open to answering any questions you may have -- just click on his name by any of his posts to send him a private message, get his e-mail address from his profile, etc.

He also started this thread -- you can tell that he has a great sense of humor!

In addition, there is information about PEG feeding on the main OCF site.

The main site has its own search engine; you can access that search function from the message boards by clicking on the gold Search link at the bottom of each message-board page. The search engine for the message boards is in the upper right corner of each forum page.

Pam

Having a feeding tube does not mean the end of [quote]We were always very social people enjoying being with friends, dining and partying. [/quote]. First, you not only can but should continue as you always have. As a patient I don't want to feel that my cancer has now circumscribed my caregiver's life -[even though of course it does]. Second, your husband can consider working up to syringe feedings - not the ones shown on the Internet where patients hold up a syringe and let the goop drip down- but where you insert the syringe into the nutrient or Wine (my preference at parties, Beer fizzes although it's doable with patience) and push it down the feeding tube. [Flash: no contact with oral tissues and every doctor I've told says since it goes directly into the stomach it's just fine]
Even before I could manage jevity down the tube, wine worked.
Just last month my wife and I went to my combo 40th 8th grade/ 45th High School reunion pool party and we had a wonderful time, just like the other times even though I brought my cans of jevity and syringe. BTW, I've failed my Modified Barium Swallow test Four times even after 9 months of swallowing therapy including three months of VitaStim electrical stimulation . Yet, I'm doing fine and you and your husband can also. It will not be easy but we are not alone. Others before us did this also.
Charm

Pam welcome to OCF. Having the PEG tube isnt fun or easy but its something that can be done. We all hate the tube but realize its a necessity. Ive had mine for a total of 2 1/2 years. Living life is just a bit more complicated and takes more planning. I am lucky that I can eat some things by mouth like pudding, soup and yogurt. My tube useage has decreased where I think I will be tube free by the end of the year. Im sorry that your husband must be totally peg dependant. Wishing you both all the best with the tube. Read Charm's posts, he is in a similar situation and is very active.

I only had the PEG for a few months but I can only imagine how difficult it must be. It is frustrating because so many soial activities involve food and gathering to eat is the most natural thing in the world. I started to just go with to dinners and just hang out. I tried to just enjoy peoples company and would just made sure I had enough jevity prior so that I wouldn't really have an appetite. I can't speak to how that would feel long term because I knew that eventually I would be off of the PEG. I can imagine it would extremely hard. I tried to focus on my other senses when I didn't have the pleasure of food. I got massages and read lots of books and watched lots of movies and still met friends but just didn't make it about food- I would meet them after the meal or at the end of the meal beacause I was just learning how to eat again and it was too stressful.

I wish I had more sage wisdom to give you. I'm so glad hat your husband has survived this disease and has made it and that you get to continue to have one anothers company. I think you should just take aside some of your closest friends in your circle of friends and let them know that you both want to see them socially but explain how difficult it i with the eating issue. It is hard for people to wrap thier head around the aftermath of this disease but I bet your close friends will be very compassionate and will still want you to participate in all of the social aspects of your lives before this happened. Your true friends will stick by you and include you will help you and will be compassionate.


KATE

At the risk of sounding insensitive - there is a bright side. It is possible that all those pneumonias were in part caused by food or drink that was aspirated or breathed in rather than swallowed. Maybe the pneumonias will ease off now?

The only thing I can share in terms of socialising is one story and a couple of suggestions. Alex continues to go for "a drink with the boys" or a coffee with me and orders his first drink along with everyone else but just doesn't drink it. Everyone knows that Alex's "beer" is just a place holder and no one even notices when he doesn't drink the coffee as it comes in a take away cardboard cup with a lid. But the drink in front of him keeps him connected to his friends and the activity.

In terms of eating, we have tended to avoid public sit down dinners to date, but would be comfortable with a cocktail party where people serve themselves with finger food. This situation would be fine as Alex would not feel conspicuous not eating. Maybe you could put your husband in charge of something that will give him something to do whilst others are eating? Maybe preparing a dessert whilst others are eating dinner, or make the coffee, or even cook the BBQ (assuming he can learn to be ok with being around food but not eating it). Or carrying the conversation at the table? Imagine, he will never again be required to respond to someone and be caught with his mouth full.