Fun With Feeding Tubes

May 11, 2011 – Feeding Tube Management

If you’re a man reading this (or hairy woman I suppose) and you’re going to get a feeding tube I strongly suggest you shave the hair off much of your chest. Tape doesn’t stick to hair well; just well enough to hurt like hell when you peel it off. Hair doesn’t really have to be shaved just trimmed down to a stubble growth so it’s out of the way.

Since tube installation on Monday it’s been a learning process. How to use it, how to clean around it, how to keep it taped to your body etc. But I’m learning. You stick the large plastic syringe in the top of the tube, put food or water in there (up to 60cc), and then release the clamp that is half way down along the tube and let it drain into the stomach. Unfortunately you have to do this a little at a time so it might take 30 minutes to consume 4 ounces of food. So I sit, walk around, release food, stand and read, release some more food and try not to get careless. If I’m careless the syringe comes out of the top and you dribble what’s left of the contents all over the place. That’s happened twice (clean up on aisle 11). I’m getting there though.

My throat is remarkably less sore than it was but swallowing is only slightly easier due to my burned and swollen throat. It’s messing up my swallow reflex. I tried to chew some cereal with milk today and my tongue got real sore and I still had to swallow several times for one gulp. I gave up on that. I still must swallow though or the reflex atrophies. The feeding tube works but I sure as hell don’t want to be using it long term. As I write this I’m drinking Boost the normal way; it’s easier to swallow than solid food. I’ll be feeding myself both ways going forward.
Tomorrow will be the real test (Thursdays have been bad for me) of my new anti-nausea meds. I took one this morning before radiation and an hour later I was back in bed sleeping for 3 more hours! Phenegren I think it’s called and it DOES make you sleepy. I’m willing to trade barfing for Rip Van Winkleville any day.
Good news on treatment dates. I will now be finished on May 27^th instead of May 31^st. This is as long as there are no equipment failures along the way (it happens so they tell me). Blood counts are in an “acceptable to good” range so chemo continues for two more weeks. I’m 62.86 percent done with RadDoc. All good.
Emotions – I’m generally feeling alright about all of this as I’m now into my 5^th week of treatment. I feel like I saved several days of misery with my end date moving up.  The lump in my neck has shrunk to a point that I wouldn’t even pay attention to it if I wasn’t aware I was sick. The Docs all say I’m doing very, very well so that’s good to hear (just not sure if they tell everyone that). My wife Joanne continues to be the perfect caregiver and my friends keep reminding me that they are thinking about me through comments on my blog, cards, phone calls and texts. I’ll be glad when this is over with but feeling very positive at the moment and looking forward to getting my life back.