How do I know when I can get off my feeding tube?

Al- You're not a baby! You just beat @%^& cancer!!! You're a brave warrior. You're just taking a little time to regroup and fight the next fight. I was a giant baby...I couldn't administer the feedings myself. The whole deal kinda grossed me out. My husband had to do it for me. To avoid aspiration and discomfort, we landed on feedings every 2 hours. He was so kind and willing- but the first day he was able to go ice fishing with a buddy (at a lake nearby) and I saw his joy I think that was a huge inspiration for me. I craved my (and his!) independence. I think everyone here will agree dealing with the aftermath is almost harder than fighting through the therapies...hang in there and start thinking about your favorite foods!

Hello jg99t9.
You and I are very similar. The radiation to my throat produced extreme pain when trying to swallow. It took a year before I could even talk again. One day, after about 3 months of having the thing, it simply fell out. The doctor wanted to put it back, but I declined, as I was determined to get my throat functioning again. Various pain-relieving medications (topical/oral) helped get me through. Also, I utilized a red-light therapy wand twice per day by waving it around the back of my throat area. For me, it was the best decision, because it wasn't long before the swallowing became easier and easier. The therapist that helped formulate my throat exercises and such told me "Use it or lose it." That stuck with me. One day, during an appointment, she brought me in a small plate of Italian Rigatoni. It was so delicious, it was gobbled down quickly---to her astonishment. It felt as if I hadn't eaten in months...I hadn't!!! You are in my thoughts and prayers. Soldier on!

jg, I agree with your ENT I'm approaching one year post and only recently have things gotten noticeably better. A word about the mucus build up. For me, this was one of the worst side effects of all of them. I was losing my mind with this and the constant feeling of hacking and fear of choking. Doctors prescribed many meds and nothing worked. But eventually it did indeed clear up and now is a distant memory.

A final tip regarding getting off the tube. I had been using Kate Farms formula for my entire time on the tube. When it was removed I ordered the shake version of the Kate Farms. Similar to the tube version only much better tasting. I ordered it by the case and would drink it to supplement my limited regular eating. I did this for four months post tube before I finally cut way back and could introduce a few other foods. Oh and once again I feel MUCH better now! Time heals all...well most 🙂 Hang in there

Thanks Sandy,
I hope you are doing well now.
Al

Hey John,
Does the shake version of the formula taste better than Ensure. Because I could be using Ensure but after a while and maybe due to chemo, it just tasted awful to me. I guess that is the key. Just find a nutritional supplement drink that won't make me sick and introduce more and more soft foods.
Thanks for sharing your experiences.
Al