Erik MH:

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:

Feed­ing Tube Aware­ness Found­a­tion  ^{1 1} This par­tic­u­lar site dis­ap­peared shortly after I pos­ted this. Here it is on Archive.org‘s invalu­able Way­back Machine. (Please join me in sup­port­ing them!)

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, or the phys­ic­al or occu­pa­tion­al ther­ap­ists I’ve spoken with have ever 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!

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.)

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