My name is Jim I posted earlier LIFE ON A FEEDING TUBE. My story began April 97 when I was diagnosed with Squamous cell in the left tonsil with metastasis to soft tissue. I was in treatment 8 weeks twice a day radiation and 5 chemo coctail IV 5 days a week then off 2 in the hospital the entire time. Somehow I survived and refused a neck resection at the end. It took almost a year to come around again but I managed. I was on a feed tube for 8 months then. Somehow a mircle, courage and determination made me eat again. Now on my 10th aniversary of surviving I ended up in the hospital with Step pneumonia for 3 weeks. It almost took me out 60% puss in my lungs. I am home for 2 months and the outlook of eating again is not good at all. Apparently my tissue is changing becoming fiberous and already scared so it is not working any more. This is what caused the asperation pneumonia. have had three cookie swallow tests and flunk miserably each time with severe asperation. It appears I will live out my life on a PEG tube which is freeking me out. I am seeing a shrink currently. I thought I had made it WOW 10 years cancer free to end up like this now. Any advice of having any kind of normal life with as feeding tube would be appreciated. I am real down. I was planning on retiring and traveling the world I just think that all my dreams have evaporated for the future good life. I feel like a prisoner tethered to my tube now kind of like a ball and chain. Need some encouragement from people in my situation please sharing life experiences living with the TUBE.

Dear Jim, My husband lived with the peg for almost 2 consecutive years. During that time we made many long car trips to visit our DIL, who was on active duty [Army] in Texas. It would take 2 days down and back because we were traveling with a toddler. We simply packed enough peg foods and liquids to make the trip. We could travel anywhere by car- I know air travel would present more of a challange. But had John beaten the cancer and kept the peg, we were planning to buy an RV and travel happily across this country and into Canada, Mexico etc. It can be done! I believe Attitude is more important than a peg tube. Amy in the Ozarks

Hi Jim,I thought I would write, everyone else is so supportive and I want to say something. The 10 years is great! Did the intense Radiation effect your esophogas? I have a friend that had Radiation when he was younger. He had a tumor in his chest and they really let him have it. Well what happened was the bones in his upper chest are sunken and the tops of his lungs don't work. Years later he has a bad valve in his heart and is going to Chicago to have an operation. He is getting his effects in order just in case he doesn't make it. Any how you made me think about him, with damage to areas that may be unrelated to your cancer. I have been with a tube for almost 3 months and it would drive me nuts but I could see living with it. There are alternatives to that. I have a lession in my esophagas that makes swalllowing difficult and I read about a procedure where they cut out the damaged portion of the tube and pull your stomach up to meet the good part. This is supposed to be very serious but it works. I may not be helping but I am thinking about you.

So tony, What do you me there are alternatives to that? The stomach procedure you talk about has its own issues. I have known 5 people like this only one still around. It has its challenges too eating little amounts all day long to get nutrition. My esophagas has some damage at the top opening due to shrinking from radiation so at times when I used to eat and was not totally concious I would swallow something and clog up the opening. Sometimes it was days of drinking carbonated water till I finally would burp it out. It was very scarry.

Jim,
I'm not tube fed anymore, but i share your frustration with spending the entire day just trying to get the adequate nutrition in. It wasn't possible for me.
So in the end i switched to a slow over-night infusion of about 120ml an hour and this took the preassure off me trying to feed all day. Is this an option you've looked at?

Anyway,
All the best!
Michelle

Michelle, I have not done infusion NO I do 6 cans with a bog syringe during the day every 3 or 4 hours starting at 5 to 6 AM and ending at 8 or 9PM. That seems to be OK but it sure crimps your lifestyle for doing activities.

Jim, I have a different problem than you I think. I have a problem swallowing due to a constriction. I also thought the pull up operation was sucessful. It is something I would have trouble with for sure. I read a website where a gentleman had it done. He basically kept a diary ofmthe whole operaion and recovery. But that is not conclusive and I wouldn't presume to know about it. I was just throwing the suggestionout there. I'm sure your doctors know best. Good luck find a resolution, Tony

Maybe the infusion is something you could think about - so you can free up some of your day? You can still have cans throughout the day if you feel hungry. One thing though, if you do go ahead over night, make sure you flush it as soon as its finnished. A couple of times i slept through & blocked my tube and had to unblock it again with the old water and bi-carb!

Michelle, I haven't used my feeding tube since I had my surgery in the beginning of June. My doctor just tells me that it will be removed after Radiation. I clean it every day and don't have a problem with it. Like Jim says though it is like a jail sentence. I want to tell you a funny story. I'm not a snob, pretty humble especially after this happened to me. So there I was in Walmart, buying pedialite, with foodstamps, and then my tube falls out because the tape stinks! It was the trifecta! The proudest moment of my life so far! I just blew it off. Pretty funny huh? I was upset because the biotene was denied from foodstamps. I should have had a 12 pack of soda and a bag of chips, they would accept that. I am waiting untill it gets bad before I use the tube. The cancer center said that they have liqquid supplement for me. I was surprised about that. Also the Chemo center down the road said they have anti nausea drugs but nothing specific. I don't even know if the hospital has a pharmacy. I will ask tommorrow.

Thanks for all the feedback and the suggestions. At this juncture I do ot know if I will switch to infuesion feeding during the night.

Tony I like the Walmart story thats hiarious. I do understand your costriction problem. I would try stomach procedure if I were in your position.