For me, I lost interest in food when it no longer satisfied the emotional comfort I sought. For my entire life, I never looked at food as a necessary source of the proper bio-fuels needed to keep my body running properly, but rather as a panecea, a culinary cure-all to wipe away the woes of the day and put me in a blissful state of mind. I used food the same way I used booze. (FYI, I am a recovering alcoholic-addict with 12 years clean and sober.) Two or three weeks into treatment, once I started experiencing the severe throat pain, the mucositis and difficulty swallowing or tasting anything, I felt I'd lost my best and only friend, or as if my wife had just up and walked out on me. The same way I felt 12 years ago when I put the bottle down for the last time.

So here I'd had this wonderful PEG tube installed and several cases of Nestle Nutren 1.5 Fiber with Prebio standing by. Whooppee. I started in on it, but my enthusiasim wore off very quickly, because it did not fit my above-mentioned concept of what food was supposed to do. Where was the comfort, the bliss? How could anyone expect this canned crap to make me feel the way real food is supposed to make me feel? My severely twisted logic was that the Nestle did not comfort, soothe or console me,
therefore it was not food. And my flawed thinking did not allow me to look beyond the emotional veil, to see the hard fact of no nutrition equaling no recovery.

I have my wife to thank for slapping me around enough for me to pull my head out of a dark orfice and start getting 4-6 cans a day down the hatch. That, plus in the last two or three weeks soft foods are getting much easier to ingest as the throat swelling and pain subsides.

Thanks for letting me ramble on... it always helps me to put things down in writing.

Hell, we like the rambling and see ourselves in your words. I am disgusted with trying to eat and taste . Everything is like putting peppered cardboard in my mouth . But I shall keep trying to get enough in my stomache. 34 lbs gone in a little over 2 weeks.

Good thing you have your wife to 'slap you around'! My ex-husband, a former nurse, was my caregiver(my fiancee graciously stepped aside)and he was instrumental in tracking calories and fluids and making sure I got at least the minimum amount each day I only lost 4 lbs and I credit his excellent caregiving for that.

Jim that is way too much weight loss.what are you going to do about it?

Jim,
I agree with Cookey, 34lb in 2-3 weeks is way too much. Your body has to be strong enough to fight this thing. At this point tasting and enjoying food is a luxury you no longer have! Davids VHC may work, or you can also consider Benecal (via PEG) to get extra calories. If you go the oral route then you might find viscous lidocaine helpful.

.... you have to stay on top of this.
BTW do you have IMRT or Brachytherapy?

M

Cookey & Markus, I am taking the VHC but not as much as I should. I also try to cook some foods that I can mash, moisten and swallow. After rads today I will try for at least 5 cans of VHC and whatever else I can handle. Thanks for the caring and have a good day.

Jim,

Don't make me slap you around...I told you a minimum of 4, AS IN FOUR, cans of VHC EACH AND EVERY DAY. Do not think you can skip a can or 2 today and make it up tomorrow because those tomorrows NEVER come. Also drink at least 48 ozs of water every day. Believe me, you will be one sorry puppy if you don't do what I say. Now get a room temperature can and drink it as fast as you can. Please.

Tom,

I remember the same sentiment for the PEG tube as well. What a disgusting device in spite of it being a lifeline. Eating is no longer something I necessarily look forward to anymore since my taste buds are obviously permanently skewed to some degree. It seems like all foods now fall into 2 categories, tolerable and horrible. I do think there are some mental games still at play however. For instance, the thought of Lasagna tonight sounds great and can't wait only to sit down to a tasteless dish for the most part. For some reason though my brain tries to convince me it was good in spite of the reality. Maybe that is just a new way to approach eating from now on.

Bill D.

Tom, We have all rambled on occasion. I had a PEG and used it but also took David's advice and forced at least one meal down a day orally, and lots of water. And I had the added experience of getting an infection around my PEG entrance and ended up in the emergency room. Never did like it and got it out soon after treatments ended. It has been almost 5 months and most taste is back, some good, some different.
Jim, you need to keep your calorie count high, it does make a difference.