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#201200 01-30-2022 12:07 PM
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"OCF Canuck"
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I sm a new tubie - 3 days home from hospital and trying to learn

I ended up with an infectinfection from my PICC line - was in hodpital om IV amtibioantibiotics for 5 days now 14 days of pill form antibiotic

before surger for petmanpermanent feedfeeding tube, I was taking Benefibre daily as I was on a lsoft food diet and wad not getting en finrfibre

ok. My questquestions

1. Does anyone add Benefibre to flushing water or “free water”
2. Does any have a morning coffee in peg bag - say 2 cups coffee plus lactose free milk and let it drip? My rstionrationale is that it is all liquid and eould be mice to wake up and have a coffee
3. Does anyone use a probiotic if so which one and why?
4. How do you deal with cravings - cooking smell etc.
5. Dors anyone add say, some vodka to a bolid syringe I am not hooked on alcohol - just looking at moving to my “new normal”

pleade feel free to send as many answers as possible I thank you for youtyour assistance and time

donna b Aka. Pandora


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I sent you a PM answering more than this. But here are my answers to your most specific questions

Your specific questions.

I have coffee in my tube every morning mixed with my breakfast. You can't taste it so throwing it all in together works fine. I have green tea in the afternoons.

If you are eating real food, getting backed up and needing benefiber isn't necessary. Part of the formula is prune juice, for this purpose, but it has lots of oats and other high fiber things in it. If you want to you can put benefiber in it, but you probably won't need to if you are getting fiber in the foods you eat.

Probiotics can be an additive if you want. I buy a greek yogurt that has lots of cultures in it, but there are some that have even larger flora content probiotics. Part of that industry is a rip off. The number of different strains of bacteria in a health gut are in the hundreds. The stuff they sell is lucky to have half a dozen, and how many of those are alive when you buy them is anyone's guess. Eating some fermented foods, which Ed does is where he gets his. So there are lots of ways of doing this. But If you are buying probiotic things that are not refrigerated, and you are not sure that in transit they were refrigerated, or stored properly, you might be sending $$$ for something that has no value to you.

We all miss eating, the tastes, the smells, the textures. Sooner or later you just have to come to acceptance. There is no trick. You are not going to get away from the smell of food, and years later I still have cravings. I just try to ignore them because I will never get to eat like that again or enjoy food like that. It's part of your history. The sooner you accept that the sooner you can get on to more important things in your life.

Alcohol isn't a pleasure anymore. YOU can put whatever you want into your tube. It's a waste of calories and getting drunk or high no longer interests me. I'd like to have a beer with friends. I might put one in my tube while with them, but its not enough to give me a buzz, and I no longer see the purpose in it. Not judging if you want to, go ahead in moderation. But the pleasure of it is gone.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I do miss certain foods..and always will.
My favourite ( before treatment) was curried shrimp, fish & chips ( I'm English) and spicy pizza.
People with little, or no understanding of oral cancer will simply suggest tossing those favourite meals into a blender, and drinking them..
Is it surprising that l find that thoroughly disgusting. ???


KITTY CAT.
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I would not find that disgusting. Remember we ear with our eyes and our nose first. Particularly that nose! I find eating real food by blending it is quite satisfying. Perhaps I am just delusional-but if so, I am good with that. Why not try one of your spicy dishes in the blender - then say how you felt?

Donna (aka Pandora99)


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Thank you for your reply and opinion..
However, l believe that eye appeal is foremost when it comes to food..at least it is with me.
Happy 4th. !!!


KITTY CAT.
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I am Canadian so we had Canada Day on July 1st. Happy 4th to you. I would again suggest - try it - what’s the worst that can happen. Lots of upside here. I certainly find my nose and how the meal is described pre blending defines how I view my blended meal.

I had 68 years of eating whatever I wanted so I have no problem with getting my memory to help recreate a taste!

I will have a tube for the rest of my life so I am finding ways to make it fun for me. I do not envy others food - for which I am very grateful - so for me I need to make the best of it.

Donna (Pandora99)


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I just saw this, I have been absent for a bit. I so squirt coffee in my PEG. And I blend my food in similar ways as Brian, not as complex though. But plenty of fruit vegies and meet, as well as olive oil and actually lots of protein power, I am very active. I do ocationly squirt some beer or vodka in, just a bit, not to ever get drunk or anything, maybe just a way to calm my nerves some days.
What I miss is very weird. Of course I miss my wife's great food. But when I am driving and go by an In and Out, or Carls JR, I just taste those great BURGETS!!!!!! and miss them so much


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
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I’ve been doing the tube thing since last July, I put just about everything in the blender now, the smells are great.
I still do steak on the grill, I get some taste when I burp!
The speech therapist at my Dr’s office still thinks it’s funny that I put an Italian sub in there, I get a great “taste sensation” from the vinegars.
I can drink a little, still taste the chocolate in my oat milk, added banana and tasted it like crazy.
Right now I’m pushing fajitas into my tube.
I have a hands free syringe holder that I built and I pour 2 or 3 cups of coffee in every morning, use my chilled formula for creamer and to cool the coffee, the Lopez valve is adjusted to a comfortable “caffeine drip” setting. I do that while I “read the paper” on the iPad.

Trying so hard not to be discouraged by the “new normal”


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
1 member likes this: Brian Hill
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I I know others that put pizzas and donuts and whatever in their blender. I totally get eating a prepared meal that the family is eating, as most of the time that has sone semblance of balanced nutrition. But honestly except for convenience, I don’t get not taking the misfortune we have been dealt, and not trying to turn it into a positive for our bodies to be the best we can be. Just like exercising or anything else, it’s important to be our healthiest selves. Throwing junk food into a blender to stay alive when there are better ideas….it’s just not me.

It took me very little effort to learn about optimum nutrition, and I actually like seeking out the best combination of things these days. It’s certainly not rocket science to find healthy fats which your body needs, the best protein sources, and optimum carbs as a starter. Then adding in micronutrients that really add those extra things that impact cognition, longevity and more. I’ve got a formula now and I blend two 64 oz Vitamix bowls of stuff, pour it off into 20oz paper cups from Amazon bought by the case, and I’m good for three or four days, covering them with cellophane and a rubber band and into the fridge. Right before using I stir in psyllium husks for fiber, add some extra liquid, coffee in the morning, vegetable or fruit juice later in the day, to thin things and bolus syringe it in. I eat the same thing every meal, keep weight on, and build lean body mass at 75 when combined with a couple days at the gym and walking everyday. I haven’t had a body like this since I got out of the military.

The other benefit is my eating requires no planning or thought any more. It’s in the fridge ready to go so I’m in a routine. I don’t feel thirsty ever, and seldom hungry. So I’ve learned that I have to be on a routine to get hydration and the same amount of calories and nutrients each day by the clock. Hydration is water, plus green tea mostly, but I’m counting cc’s in the syringes. It’s not like I get to have or care to have Mexican one day and Italian the next, or see any benefit to that. For sure I would never put this mixture in my mouth. Think canned sockeye salmon with skin and bones, with blueberries, whey protein powder and mixed vegetables and fresh spinach, frozen fruits, nuts of every variety, mostly walnuts and almonds, prunes, beets, garbanzo beans, black beans, hard oiled egg, avocados, cranberries, 99%cacao chocolate pieces that taste like dirt, mushrooms, olive oil, a batch of what ever vegetables are fresh and in season, steamed and stored into containers in the fridge ready to blend, and other things that would be disgusting together. But I can’t taste it. So I’m picking things not for any reason but that they are the best for my body and mind.

I’m four years into doing this. Same shopping list at Amazon for cases of wild caught sockeye salmon in water, and sardines in EV olive oil, and the grocery store for other canned and fresh staples.

Steve Jobs of Apple wore the same thing every day. It was comfortable, professional if casual, and he had a closet full of the same thing. When he got up showered and dressed every day, he spent zero time thinking about what he was going to wear. I live in t shirts jeans and sneakers. Occasionally a grey sweat shirt in the fall and winter over that. My days are uber busy. But I’m not wasting my time deciding what to put on or eat and drink. It’s a system. Mostly people don’t see me, I work online from a home office, go out and walk in town, and I share no meals with others except to sit as company with them. I curl up in front of the fire to read in the evenings so for pleasure, but mostly medical technical for OCF. I get what Steve Jobs was thinking. I was not like this most of my life. I was a major foodie, dressed professionally at big pharma companies, and enjoyed trying new wines and food. I’m not that guy anymore. I’m more driven, more healthy at the level I can be. I spend more time inside my head, thinking about improving the last chapter of my life. Doing the best I can for OCF and others. Finding some beauty and positive in each day no matter how small. The way I eat is part of a bigger idea. It’s not for every person. But enough people have asked, so there it is.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Just to clarify,
I’ve been eating clean and organic whenever possible for about 10 years now.
I grow most of my own kitchen herbs, onions,garlic, potatoes, tomatoes, lettuce and several other things in my.hydroponic garden.
We have chickens and ducks for eggs, also, fertilizer.
I grow my own turmeric and add fresh root to most everything I consume.
However, still enjoy my guilty pleasures.
Last nights Fajita meat was grass fed skirt steak, onion, garlic cloves and lettuce from garden, organic salsa and shredded cheese.

I’ve been adding cocoa butter and coconut oil to the organic coffee for sometime.
Whenever possible I make my own almond, cashew and oat milk.
Have started sprouting again to add to meals.

I absolutely do not want to start any arguments about what to put in for nutrition.


1st time around was 2010, Sqamous Cell Carcinoma. Radiation, chemo, surgery: Radical neck dissection.
Cancer free until 2021.
This time around, started 2021, tumors on tongue.
May 2021 partial glossectomy, October ‘21 removal of a few more recurring on tongue.
February til May 2022 immunotherapy....no improvement
July 2022, total glossectomy, living the new normal.
PET February’23 another SCC on neck....next surgery April ‘23, see where it goes from here.
Still fighting.
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