Feeding Tube

but that really isn't a number carved in stone.  What he needs is fluids and calories.  Nothing else is really important.  If he can get enough orally to get by, why bother with a PEG tube?  Especially if he's halfway done with rads.  I went through rads two different times, neither time did I have a tube.  I pushed the calories as far as I possibly could.  I didn't worry about drinking water or chicken broth, those dont have calories.  Every drink I took had an ensure or boost base, with whatever I could add to boost the calories as far as I could.  That way I got calories and water both, at least as much as my sore mouth would tolerate.   I was able to keep my calories above 2000 per day, which is't enough to keep from losing weight.  I lost a lot of weigh at the end of treatment, but so what.  Better times came eventually, and the weight loss stopped.

Pat

blondie41 said:

Thanks Pat.  The problem is

Thanks Pat.  The problem is that he's not trying to push the calories.  He can't stand Ensure or Boost, therefore won't use them!  I've begged and pleaded, but if it doesn't appeal to him, nothing is passing his lips!  I'm guessing that he's getting a 1,000 calories a day, at most.

You can always put other stuff through the blender.  Here's a fairly direct substitute.  8 ouces whole milk, one tablespoon olive oil, one scoop protein powder, one tablespoon sugar or honey, grind up a vitamin, add a little thickener if desired, flavoring and serve.  I tried a whole bunch of things, just to find stuff I could handle.

Respectfully, you will notice I have said I did these things.  Not someone else.  At some point, I figured I was pretty much responsible for my own situation. 

best to you both.

Pat

Just to add to Pat's suggestions already. Has he tried eating some scrambled eggs with some Sugar free syrup on them? I would do this and the syrup helped the eggs slide down easier. Also, mix in some instant breakfast mix in some milk, throw in a banana, the kitchen sink if you have too . Anythng that will provide nutrition and calories as Pat mentioned. I ate hot oat meal allot, of course, I allowed it to cool to room temperature as my mouth was sore from the Radiation. Soft boiled eggs, you get the picture...

Does he use the Baking Soda and Salt solution to rinse and gargle prior to eating? I used this method to semi-numb my mouth before eating or drinking. It took the edge off of that or the use of Magic Mouthwash? As Pat stated, your husband is closing in on being finished with the Rad's and possibly get thru this without the PEG. I had no choice and had the PEG from the start as I had Base of Tongue cancer and had part of my tongue removed and was not allowed to eat orally for weeks.

My Best to Both of You and Everyone Here

CivilMatt said:

PEG not always the answer, but it is easy to use

blondie41,

Your husband knows what he needs to do, consume calories as Pat & Don instructed.  While I did have a PEG I always drank at least one meal a day.  I did not like food much, but who cares, that is why there are smoothies and protein drinks.  So it takes a while to gag down a drink, you have the time and need the calories.    

I took the bull by the horns and fought my battle as best I could, however I could.  Your husband needs to get the mindset that this is a winnable battle and do what he can.  He is half way through; it will be over soon, he will get better.

Don’t worry about the PEG scar being a reminder; it is far down the list of reminders.

Matt

I cannot understand the doctor's recommendation since many of us lost a lot of weight.  Based on his recommendations, here are some suggestions.  Boost is my daily breakfast since I can only eat soft foods.  I liked it better than Ensure and am now used to the taste.  Prior to tolerating it, here are a few things I did with Boost.

1.  Mixed a tablespoon of Hershey's Cocoa in about 3 tablespoon of hot water or just enough water to dissolve it.  Add one can of boost, stir and microwave it.  It tastes like hot cocoa.  Not bad and it was my best drink.

2.  Same as above, but used instant coffee.

3.  Mixed a scoop or two of ice cream with one can of boost.  Blend with the straw or a fork.  Add a couple cubes of ice if desired.

Good luck and hope he tries and enjoys it.

have said what I have to say.  One.....he NEEDS to push calories and hydration to their limits and beyond.  It's hard to imagine not liking Boost or Ensure, when at this juncture he most likely can't taste anything anyway.  I used Boost VHC (very high calorie)....that way I could suck it down and be done with 540 calories in 8 little ounces.....13 or 15 swallows, and it was over....Shakeology is packed with vitamins, and mixed with milk to add calories is fine.....but it's not very high in calories. 

Like Pat said, the 2 lbs a week is just a number.....and not one that many people manage to keep....even packing in more calories isn't necessarily keep weight loss at 2 lbs a week.....the body is burning them at an excelerated rate during treatment.

There's damn little to "remember" about a feeding tube....it's not like it's permanent, and the scar is perfectly round and the size of a pencil eraser....and like Matt said, it's way down the list when it comes to reminders of treatment.....like at the bottom of said list.  A tube does make taking in water and food way easier if he's in pain.....bypassing where it hurts is a relief.....even tho he will still have to swallow something everyday to keep the swallower working.

You take it easy on yourself.....there's only so much "help" you can do with a cranky adult.....sometimes planting a seed, and seeing if it will grow works (that's how I do everything with my hubby, so it looks like it's his idea) .

p