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I am not happy being a tubie, but not really sad either, after about 2 years, it is the way I live! One thing I do know, I am healthier eating with my new diet. I eat fresh veggies, nuts and fruit every day, every meal. And I do add quality protein powder. I try to add chicken or tuna once a day. I also eat leftovers. I use a Vitamix at home and I just got a powerful "bullet" blender for trips. I do have an occasional beer. I will go to a beer place with friends and just squirt in in. I use to drink beer with friends, but I would aspirate and cough, tough to talk that way. I also have coffee with friends and squirt the coffee in, Really not bad at all. So in conclusion...as they say.... I am good being a tubie. I have "almost" adjusted to the new normal..a happy-health new steve!!!


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 have your smoothie/meal recipe and I dare anyone to argue the ingredients or the results.


Now if only the world was run by muscle building Men and not us weak overweight types who have such strong memories of the foods they loved, that just smelling them in the blender is enough to satisfy.

I have found that - for me - I am definitely eating better quality ingredients than ever before but my brain still wants the sights and smells that give me satisfaction. For me, perhaps this is more of a “mind game” than a practical - “get to it process”. I love feeling that I am participating in what the family is eating. That makes me feel included.

I do add Oat Germ, Wheat Germ, Good protein powder and fibre to these “home style’ meals. I also daily as welI take my probiotics, acidophilus, NAC and organic multi vitamin.

I do track the nutritional value of meals I make (fitness pal) . I batch cook then freeze. My “indulgence” has turned out to be my no brain breakfast where I mix my formula with COFFEE and sit down to read the paper, do email or watch the news My time.

Someday Brian I will surprise you and make your whole recipe! (aside from chia seeds which have an adverse effect on me and my IBS). We are not doing Chia seeds again!!

I thank you all for a lively conversation. Obviously for me - I am mostly driven by the psychological aspects of tube feeding. I thank God for my very strong olfactory senses!!!

Last edited by Pandora99; 04-05-2023 02:18 PM.

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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As to what people put in their diets, I do not care about others preferences as long as they are doing well on it and it works for them. I was just voicing a personal opinion, and not suggesting anyone behave like me, I can be a terrible example at many things. And pandora should know I’m in another incarnation of that recipe, and it looks like it’s more convoluted than ever. I just wish I could make bigger batches than 64 oz. I don’t have room for all the ingredients I’m finding interesting! But I can do enough so I only have to blend twice a week, it’s not my favorite past time. I do take over the refrigerator on blend day. But posters who have been around awhile know I’m not out to sell or convince anyone I have magic answers. I just try to help those that ask for ideas. Feel free to tell me to butt out, if it comes across otherwise. B


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 very much respect your opinions. I know they are well thought out, researched and experimented with.

I was just throwing in a little “Men are from Mars Women are from the donut shop” bit of perspective.

And I would never tell you to butt out! I value you and all you have done far too much for that! I hope you know that.

Donna


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 totally get that and was replying to everyone in general. We go back a lot of years together. You’ve always had my respect.

I am not all knowing, I’ve just been at this daily for a quarter of a century. And I get to interface regularly with some of the best and brightest from research, treatment, public policy and more. So while not super smart, my associates are. I get to share that learning with others, it is a privilege. B


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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OK, I am planning a trip away from my cozy home. Just 3 nights, actually going fishing. I bought as "bullet" blender from amazon and have been testing it. I am going to pack , nuts, EVOO, Protein Power and intend to hit a grocery store for bananas, milk, yogurt, spinach. It will be a real experiment. My last trips was before blending and I just brought formula. I am 100% into blending so this will be my real test for future travel. May even buy some beer... you cant fish with out beer!!!


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
Joined: Sep 2006
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Sounds fun. Except that I don’t like fishing! We have a cottage on Lake of the Woods (think Minnesota Land of 10,000 Lakes) My family - especially my daughter - is a super avid fisher person - as is her husband. They built an ice shack and drag it out onto the lake as early as possible. Precambrian Shield country. Rocks, trees, fish and some interesting wildlife. Lake is 135’ deep in places. Our cottage is on an island about 5 minutes from the landing.

Anyway, First things first. Take Guinness with you. Far less carbonation (you still have to pour it out and let it settle) but your gut will thank you. Take a back up if you wish. I have been known to have a drink of Rye and Water once every blue moon. Yes I know all the warnings about alcohol and cancer - but for me - I need to live life AND FEEL PART of what everyone else is doing. That will be the only way I won’t hate this tube! So everyone can save their lectures. I am not talking about drunk. I am talking about just enjoying one or two.

Now food. When I read your post my first thought was that your trip is too short to go through a bunch of hassle. and blending every meal on a fishing trip will be a hassle especially with a less powerful blender. A blocked tube from something your blender didn’t catch will ruin your trip. If you insist on blending everything make SURE you have a high quality strainer.

I batch blend and freeze. So I have lunch (oatmeal mixture) and suppers (my concoctions if chicken, veg, etc etc) in the freezer. Life would be so much simpler for you if you just could take your homemade frozen meals. But - is there a freezer there? And you need to take an extra days food to be safe. I have formula for breakfast. Maybe you want to blend that meal and use your frozen meals for later in the days while you hang around with your friends talking about the ones that got away. Do not forget the strainer!!!


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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Hi Pandora, this is like a "shake out cruise" I just want to see how blending on the road works. Before blending I would pack formula. One time , on a trip to Europe, I put 60 cartons of formula in a suitcase. HEAVY. So a goal on this trip is to see how blending on the road works. I actually travel often, and I am pretty confident this will be fun/interesting/educational !!!! The Bullet type blender I bought at Amazon is the most powerful one sold. Not nearly a vitamix, but OK. I have been using it at home to see what works and what doesn't. So far it is OK...Dates don't work. trying apples and spinach later today. But for a few days, I can stick with milk, protein powder, flax meal, EVOO, tuna, hard boiled eggs, yogurt.

One added advantage... Not screwing with TSA at the airport. I will bring no formula. Luckily, it is a short flight!!

Steve


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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Steve,
Enjoy your fishin’ trip!

I need to get it together and go fishin’ myself. My freezer is getting low.

Good luck with the blender in the wild.

Nothing like sausage and eggs over an open fire in a cast iron skillet, that’ll be easy to blend in the bullet, so will fried fillets later that day.

Yeah, I’m throwing everything in the VitaMix these days, and recovery is going well.

Have a good trip!


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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OK, went on my "shake down" tubie fishing trip. First of all, I was going to be in a remote place. So, i believe in redundancy. I put syringes and tubes in both of my luggage, one was being checked, one carry on. And I brought a spare mic-key just in case ( I actually carry it often, I put the button, 10cc syringe and a little lube in a small case, about the size of a pack of cigarettes) I also I ground my daily pills into small packets. Then, I made small bags of base food for each meal. Each bag contained, protein powder, powdered walnuts, and oatmeal. I had packets of tuna for my night time meal. And I had a bottle of olive oil, so each base meal was about 600 cal. My plan was to go to the store, buy ensure, bananas, spinach. And use the new bullet blender to make my new meals. I was staying in motels, so the bathrooms were my new "Blending area" . the hotels had free breakfast areas so I did get milk, hardboiled eggs and that all important coffee!! The plan was to blend two meals in the morning and take one of them to the fishing area. For that I also took water to clean the stuff and I also bought gator aid as I thought it would be great fluid for being active. And I wanted to maximize my caloric intake

so here are the lesson I learned
1. It is easier to blend at home, although the hotels had space, there was more time in clean up and keeping things in order. And the bullet blender is no Vitamix!!!!
2, I should have made all the meals at home first. One meal came out so thick I had to separate it and add water, really a minor problem, but pre test is good
3. Forget ensure, it is expensive, actually low calorie, and way too much sugar. So I will just use milk in the future
4. Bring liquid soap to clean the blender

This was only a 3 day trip. But I can see how it could easily be extended. I think I mentioned, on a trip to England last year, I put 60 boxes of formula in one suitcase...heavy!!!

So, I am now a full time blender! Much better for me and a little fun

Most of all the fishing was great...the catching was so-so

Steve


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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