Feeding backpacks

A number of you have expressed enthusiasm for my “invention” of a feeding backpack. And it’s certainly true that — given the idea of carrying my feed and pump around inside a backpack and running the feeding tube out one side — I did indeed figure out a very dependable, workable way to accomplish what was needed.

However — despite universal ignorance about such devices amongst the nurses and therapists I’ve spoken with — these things already exist and are for sale:

http://www.feedingtubeawareness.org/resources/useful-products/backpacks/

And even the original idea itself hadn’t been mine: Karen had reported that she’s seen two or three children with wearing such packs at schools that she’s worked at — that’s what gave me the idea to rig one up for myself.

So the big mystery really is why not one of the nurses at the hospital or at the oncology center, the visiting nurses at home, and the physical and occupational therapists I’ve spoken with haven’t heard of such a thing.

In my own case, I work at home and so didn’t need to think about the practical issues of commuting or feeding in the workplace. And my schedule was completely flexible, so there were very few constraints on the precise timing of my feeding. And yet, I found the switch from drip-pole to backpack to be incredible freeing and liberating. It made a huge difference both to my day-to-day practical life and to my psychological outlook.

How much more of a difference would this make to someone with a less flexible schedule, someone who had to think about the logistics of commuting and working? So all of you with connections to the medical world, please try to get the word out to those folks who provide support to people who for whatever reason need to feed through a tube. This is a life changer!

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I also am delighted to report that at this point the tumor has shrunk to such an extent that I can eat basically anything I want again — I need only remember not to eat too quickly. I cannot express how wonderful it is to be able to eat more-or-less normally again!

(After my upcoming surgery, I’ll get to start all over again with clear liquids, but if all goes well that will be a quicker adjustment period. BTW, I’ll spend most of tomorrow at the hospital getting testing done and then meeting with the surgeon. It’s likely I’ll finally have a definitive date for the surgery at the end of the day.)