Eating Part 3 (I lost the middle part)
Comments
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Carnivoressoccerfreaks said:USAF vet
Thanks, dude, I enjoy your posts as well.
If I had a secret remedy I would pass it on, but I don't. Actually, until your post, I was beginning to think I was the only person not really eating meat. I can't say I'm glad to learn that I am not alone, of course. But I am glad to say that I am not among the non-meat-eaters now
Live well, my friend, and continue to post your most intelligent posts. Everyone learns from them.
Take care,
Joe (I would say sempre fi, but i'm an old usaf dude, you know, and it wouldn't be right)
Use the crockpot. A piece of leather can turn into pudding if it is cooked long enough.0 -
Patience.soccerfreaks said:Meat orgasm
Yeah, it's awesome sweet.
You will get there. Trust me, you will get there. As mentioned, patience is a virtue.
I wish you the best, and having followed your entries, know that you will get there.
Take care,
Joe
Thanks, Joe. You would think with all I have been through that I would have learned to be patient, but I haven't. I try, I really do. I know that it's my life lesson, this patience thing. He keeps testing me, and I keep failing. Ugh. I am slightly more patient but not much. Someday I'll get there, i guess I just have to be....well...patient. ;-) 0 -
I've tried the crockpot.JUDYV5 said:Carnivores
Use the crockpot. A piece of leather can turn into pudding if it is cooked long enough.
I've tried the crockpot. It's still like a lump of sawdust when it gets in my mouth. Hard to swallow sawdust. I have no saliva. :P Actually I can't even stick my tongue out anymore. Lol. I so understand that whole thing about your tongue moving the food around and it being essential to eating. Who knew this eating stuff could become so stinking complicated. And I didn't have any part of my tongue removed! Well just a biopsy. But I can't imagine you guys that have had partial tongue then rads. Man.0 -
horse radishPam M said:Absolutely Magnificent
Very good to hear your news. This is fantastic. It also makes me think that my steak and horseradish daydream will be reality. I mean, if you can make so much progress, I should be able to eat a sand sandwich with no mayo soon. Not complaining (much) - at this stage, I can eat enough food to have to watch what I eat so I don't gain weight.
I'm with you on frustrating times in restaurants - I can eat most things, but my family members get antsy waiting for me to just give up, and get my carry out box. The friends I have that I still eat out with are more patient (or pretend to be so).
I guess it's time for you to hit some buffets now. Live it up.
Oddly, Pam, my wife made a roumelade/horse radish cocktail sauce for me when I was eating the shrimp. Time was, even six months ago, when horse radish would have kicked my butt, and I STILL don't know what roumelade is.
It will happen, girl! And I want to hear about it when it happens!
Take care,
Joe0 -
sweetblood22 said:
Patience.
Thanks, Joe. You would think with all I have been through that I would have learned to be patient, but I haven't. I try, I really do. I know that it's my life lesson, this patience thing. He keeps testing me, and I keep failing. Ugh. I am slightly more patient but not much. Someday I'll get there, i guess I just have to be....well...patient. ;-)
To the people I talk to here, I suggest that our theme song is Tom Petty's "The waiting is the hardest part". Do not know if you are familiar with that one, but it is apropos to our situation, almost all of the time, from diagnosis, through all of our appointments and treatments...and even now.
It IS tough, I know. And I am not yet where I want to be, myself. If you've read some of the other responses, you know that some people haven't gotten even this far. And may never, sadly. But it is possible.
Hang in there, girl! Hope and Humor!
Take care,
Joe0 -
CrockpotsJUDYV5 said:Carnivores
Use the crockpot. A piece of leather can turn into pudding if it is cooked long enough.
There is great irony in that well-intended advice, judy. As sweet points out, even the best intended stuff comes out wrong for us. For us, for many of us, it is about texture as much as anything. It is NOT about softness; it is NOT about chewiness; it is NOT about crunchability, even. It is just something that makes some things easy to eat while others remain out of bounds.
Trust me, between the two of us, the wife and I have tried the crockpot, the blender, the cuisinart, whatever device you might think of (not for sex, of course...we are, sadly, puritans in that regard) and they have nothing to do with what works. Or what worked.
Your example, Judy, is exactly what I meant about my wife's passion for making me stuff I could eat and failing at it: It was not intentional, was, in fact, very well intentioned. There is simply something odd about eating when your mouth and tongue and throat have been rearranged. In my case, it is, I think, mainly the tongue.
And all of this is what frustrates everybody, including myself.
I DO appreciate your kind thoughts.
Take care,
Joe0 -
I had been dying for steak.soccerfreaks said:Crockpots
There is great irony in that well-intended advice, judy. As sweet points out, even the best intended stuff comes out wrong for us. For us, for many of us, it is about texture as much as anything. It is NOT about softness; it is NOT about chewiness; it is NOT about crunchability, even. It is just something that makes some things easy to eat while others remain out of bounds.
Trust me, between the two of us, the wife and I have tried the crockpot, the blender, the cuisinart, whatever device you might think of (not for sex, of course...we are, sadly, puritans in that regard) and they have nothing to do with what works. Or what worked.
Your example, Judy, is exactly what I meant about my wife's passion for making me stuff I could eat and failing at it: It was not intentional, was, in fact, very well intentioned. There is simply something odd about eating when your mouth and tongue and throat have been rearranged. In my case, it is, I think, mainly the tongue.
And all of this is what frustrates everybody, including myself.
I DO appreciate your kind thoughts.
Take care,
Joe
I had been dying for steak. Seriously craving it. As I have said I usually cook and eat by myself only because i seem to get more nutrition in me if I don't have to sit at the table and smell and veiw all the things I cannot swallow, have people stare in my face while I try and swallow, comment on what I am eating, that they don't like it, or care for the way it smells, have people ask me stupid questions and expect me to answer as I am trying to eat and swallow, ask me if I am ok every time something gets stuck, leave me at the table after five minutes because they are done, and now I am stuck with a two hundred pound English Mastiff in my face trying to bully me outta my food...... Where was I going with this? Oh yah. I remember! Steak. Yeah, so my parents had company and I've not seen these people since I was really little. Ten maybe? So I thought I would suck it up and sit at the table but make my normal mushy food so I'd have something to eat. Meanwhile every Saturday night at my parents is you guessed it, steak night. My father cooks gorgeous steaks over a wood fire every Saturday with French Fries and fried mushrooms. Yum. I made some boiled potatoes and onions and a few mushrooms. My dad cut a tiny piece of steak. I tried. It was a choking hazzard. I was pretty miserable cause I really wanted that steak! About a week or so later I was out running around and it was getting late and I was getting hungry and I thought, I know, I'll call Main Street Grille and order food. Ted the guy who cooks and owns it is Greek and he marinates ribeye steaks in yummy Greek seasoning and makes a ribeye you can cut with your little plastic take out fork. So there it was in all it's glory, in it's styrofoam box, my baked potato with butter and sour cream, well done broccoli no salt and extra butter (lovingly made to my specifications) and a lovely medium ribeye. I tried. I chewed and chewed and tried to swallow it. I took tiny bites. I took teeny tiny bites. Choking hazzard. I was undeterred. I WANTED STEAK DAMMIT. I took that beautiful ribeye and put it in my whizzer and buzzed up that bad boy. I was determined to eat that steak. I think I was drooling. Well, as much as you can drool with no left salivary gland and a fried remaining salivary gland. I sat back down with my dinner and tried my steak and..... I still couldn't get it down. Sawdust. Like trying to swallow sawdust. Boooo.
I will try again in a month or two. I did get a tiny little chicken cutlet down last week. Pretty dry, but I didn't choke and I ate the whole little tender. But I still want steak. I didn't even really like steak all that much. 0 -
Perfect Tunesoccerfreaks said:
To the people I talk to here, I suggest that our theme song is Tom Petty's "The waiting is the hardest part". Do not know if you are familiar with that one, but it is apropos to our situation, almost all of the time, from diagnosis, through all of our appointments and treatments...and even now.
It IS tough, I know. And I am not yet where I want to be, myself. If you've read some of the other responses, you know that some people haven't gotten even this far. And may never, sadly. But it is possible.
Hang in there, girl! Hope and Humor!
Take care,
Joe
You take it on faith; you take it to the heart.0 -
Not Fair3Mana said:Keep eating!
Joe,
I was so happy to read that you can now eat!! This is great and I hope things keep getting better for you every day. You've been through alot and yet you can still write these great posts.
When I feel depressed, and I read your posts and see you're doing great, it brings a smile to my face.
This will be the first thanksgiving & Christmas without my husband. It's going to be very hard to get through these holidays. The other day I was in a store and a christmas carol started playing and the tears rolled down my cheeks & I had to leave. It's not fair that someone so good was taken from me so soon when we were just going to be able to start enjoying his retirement which of course never came.
Well, don't want to get you depressed!! Let the party begin!!! "Carole"
Sorry to hear about your loss, Carole. Hoping you'll make it through the holidays this year the best you can. I hope you can find some spots of joy here and there. You know, grab happy when you can.0 -
With you, Sweetsweetblood22 said:I had been dying for steak.
I had been dying for steak. Seriously craving it. As I have said I usually cook and eat by myself only because i seem to get more nutrition in me if I don't have to sit at the table and smell and veiw all the things I cannot swallow, have people stare in my face while I try and swallow, comment on what I am eating, that they don't like it, or care for the way it smells, have people ask me stupid questions and expect me to answer as I am trying to eat and swallow, ask me if I am ok every time something gets stuck, leave me at the table after five minutes because they are done, and now I am stuck with a two hundred pound English Mastiff in my face trying to bully me outta my food...... Where was I going with this? Oh yah. I remember! Steak. Yeah, so my parents had company and I've not seen these people since I was really little. Ten maybe? So I thought I would suck it up and sit at the table but make my normal mushy food so I'd have something to eat. Meanwhile every Saturday night at my parents is you guessed it, steak night. My father cooks gorgeous steaks over a wood fire every Saturday with French Fries and fried mushrooms. Yum. I made some boiled potatoes and onions and a few mushrooms. My dad cut a tiny piece of steak. I tried. It was a choking hazzard. I was pretty miserable cause I really wanted that steak! About a week or so later I was out running around and it was getting late and I was getting hungry and I thought, I know, I'll call Main Street Grille and order food. Ted the guy who cooks and owns it is Greek and he marinates ribeye steaks in yummy Greek seasoning and makes a ribeye you can cut with your little plastic take out fork. So there it was in all it's glory, in it's styrofoam box, my baked potato with butter and sour cream, well done broccoli no salt and extra butter (lovingly made to my specifications) and a lovely medium ribeye. I tried. I chewed and chewed and tried to swallow it. I took tiny bites. I took teeny tiny bites. Choking hazzard. I was undeterred. I WANTED STEAK DAMMIT. I took that beautiful ribeye and put it in my whizzer and buzzed up that bad boy. I was determined to eat that steak. I think I was drooling. Well, as much as you can drool with no left salivary gland and a fried remaining salivary gland. I sat back down with my dinner and tried my steak and..... I still couldn't get it down. Sawdust. Like trying to swallow sawdust. Boooo.
I will try again in a month or two. I did get a tiny little chicken cutlet down last week. Pretty dry, but I didn't choke and I ate the whole little tender. But I still want steak. I didn't even really like steak all that much.
I find it irritating that I crave steak much more often now that I can't eat it. I do get a small bite of my son's every time we go out. I chew it. And chew it. And chew it. . . and eventually swallow, smile, and say "thank you". I'll get there, though.
I'm one of the lucky ones - crock pot chicken goes down much better for me than "regular" meat.
Also have to tell you, Sweet - I went to my first in-person support group for cancer surivivors - you were the success story I shared with two gents on feeding tubes (year and almost a year and a half). It was pretty sad - you could see in their faces how badly they'd like to be more like me (on the eating, sleeping and spitting fronts). Keep up the good work.0 -
Willpowersweetblood22 said:I had been dying for steak.
I had been dying for steak. Seriously craving it. As I have said I usually cook and eat by myself only because i seem to get more nutrition in me if I don't have to sit at the table and smell and veiw all the things I cannot swallow, have people stare in my face while I try and swallow, comment on what I am eating, that they don't like it, or care for the way it smells, have people ask me stupid questions and expect me to answer as I am trying to eat and swallow, ask me if I am ok every time something gets stuck, leave me at the table after five minutes because they are done, and now I am stuck with a two hundred pound English Mastiff in my face trying to bully me outta my food...... Where was I going with this? Oh yah. I remember! Steak. Yeah, so my parents had company and I've not seen these people since I was really little. Ten maybe? So I thought I would suck it up and sit at the table but make my normal mushy food so I'd have something to eat. Meanwhile every Saturday night at my parents is you guessed it, steak night. My father cooks gorgeous steaks over a wood fire every Saturday with French Fries and fried mushrooms. Yum. I made some boiled potatoes and onions and a few mushrooms. My dad cut a tiny piece of steak. I tried. It was a choking hazzard. I was pretty miserable cause I really wanted that steak! About a week or so later I was out running around and it was getting late and I was getting hungry and I thought, I know, I'll call Main Street Grille and order food. Ted the guy who cooks and owns it is Greek and he marinates ribeye steaks in yummy Greek seasoning and makes a ribeye you can cut with your little plastic take out fork. So there it was in all it's glory, in it's styrofoam box, my baked potato with butter and sour cream, well done broccoli no salt and extra butter (lovingly made to my specifications) and a lovely medium ribeye. I tried. I chewed and chewed and tried to swallow it. I took tiny bites. I took teeny tiny bites. Choking hazzard. I was undeterred. I WANTED STEAK DAMMIT. I took that beautiful ribeye and put it in my whizzer and buzzed up that bad boy. I was determined to eat that steak. I think I was drooling. Well, as much as you can drool with no left salivary gland and a fried remaining salivary gland. I sat back down with my dinner and tried my steak and..... I still couldn't get it down. Sawdust. Like trying to swallow sawdust. Boooo.
I will try again in a month or two. I did get a tiny little chicken cutlet down last week. Pretty dry, but I didn't choke and I ate the whole little tender. But I still want steak. I didn't even really like steak all that much.
Too funny! And so true. You have a way with words yourself, my friend!
Take care,
Joe0 -
My last steaksoccerfreaks said:Willpower
Too funny! And so true. You have a way with words yourself, my friend!
Take care,
Joe
Oh the memories. My last steak was in 1997, a prime rib with lots of juice and two gallons of water. Same trip/meal I found bread pudding and have loved it since. Funny how today I can eat shrimp and tomorrow I can't....drives my wife bonkers.0 -
Pam. Cancer support group.Pam M said:With you, Sweet
I find it irritating that I crave steak much more often now that I can't eat it. I do get a small bite of my son's every time we go out. I chew it. And chew it. And chew it. . . and eventually swallow, smile, and say "thank you". I'll get there, though.
I'm one of the lucky ones - crock pot chicken goes down much better for me than "regular" meat.
Also have to tell you, Sweet - I went to my first in-person support group for cancer surivivors - you were the success story I shared with two gents on feeding tubes (year and almost a year and a half). It was pretty sad - you could see in their faces how badly they'd like to be more like me (on the eating, sleeping and spitting fronts). Keep up the good work.
I'm glad that you found a good support group! I tried to find a HNC support group here, but there aren't any. None even close. I went to a general CSG in Montoursville about 20 miles away or so, which is actually close, since I'm out in the boonies. This was when I still could hardly eat anything. Just shakes, banana, avacado and mushy Amish macaroni salad. I was really depressed. They were nice people but I wanted the support of people who understood what it was like not to be able to eat. When I got to the meeting, there was cookies, chocolate cupcakes, pretzels and punch on the table for me to stare at.
I think I only went once. The lady who runs it sent me a few cards and called me a lot, but it just didn't click with me. I needed support from someone who had been thru where I was at. 0 -
I can relate to this steak anecdote ...sweetblood22 said:I had been dying for steak.
I had been dying for steak. Seriously craving it. As I have said I usually cook and eat by myself only because i seem to get more nutrition in me if I don't have to sit at the table and smell and veiw all the things I cannot swallow, have people stare in my face while I try and swallow, comment on what I am eating, that they don't like it, or care for the way it smells, have people ask me stupid questions and expect me to answer as I am trying to eat and swallow, ask me if I am ok every time something gets stuck, leave me at the table after five minutes because they are done, and now I am stuck with a two hundred pound English Mastiff in my face trying to bully me outta my food...... Where was I going with this? Oh yah. I remember! Steak. Yeah, so my parents had company and I've not seen these people since I was really little. Ten maybe? So I thought I would suck it up and sit at the table but make my normal mushy food so I'd have something to eat. Meanwhile every Saturday night at my parents is you guessed it, steak night. My father cooks gorgeous steaks over a wood fire every Saturday with French Fries and fried mushrooms. Yum. I made some boiled potatoes and onions and a few mushrooms. My dad cut a tiny piece of steak. I tried. It was a choking hazzard. I was pretty miserable cause I really wanted that steak! About a week or so later I was out running around and it was getting late and I was getting hungry and I thought, I know, I'll call Main Street Grille and order food. Ted the guy who cooks and owns it is Greek and he marinates ribeye steaks in yummy Greek seasoning and makes a ribeye you can cut with your little plastic take out fork. So there it was in all it's glory, in it's styrofoam box, my baked potato with butter and sour cream, well done broccoli no salt and extra butter (lovingly made to my specifications) and a lovely medium ribeye. I tried. I chewed and chewed and tried to swallow it. I took tiny bites. I took teeny tiny bites. Choking hazzard. I was undeterred. I WANTED STEAK DAMMIT. I took that beautiful ribeye and put it in my whizzer and buzzed up that bad boy. I was determined to eat that steak. I think I was drooling. Well, as much as you can drool with no left salivary gland and a fried remaining salivary gland. I sat back down with my dinner and tried my steak and..... I still couldn't get it down. Sawdust. Like trying to swallow sawdust. Boooo.
I will try again in a month or two. I did get a tiny little chicken cutlet down last week. Pretty dry, but I didn't choke and I ate the whole little tender. But I still want steak. I didn't even really like steak all that much.
But I found my own solution, living in a barn as I do... raised by wolves... no manners atall... up in cowboy country...
Back when I could swallow nothing, I'd take a bite of steak from someone's plate, cram it in my mouth, chew it till the flavor subsided, then spit the entire thing out. Wouldn't even try to swallow. I was good for a few rounds, or until someone tried to stab my hand with their steak knife.
I've always had more trouble with chicken, seems like it dries out faster.
Deb0 -
D Lewis said:
I can relate to this steak anecdote ...
But I found my own solution, living in a barn as I do... raised by wolves... no manners atall... up in cowboy country...
Back when I could swallow nothing, I'd take a bite of steak from someone's plate, cram it in my mouth, chew it till the flavor subsided, then spit the entire thing out. Wouldn't even try to swallow. I was good for a few rounds, or until someone tried to stab my hand with their steak knife.
I've always had more trouble with chicken, seems like it dries out faster.
Deb
I've done that. And I agree, chicken (and other fowl) is a whole other animal
Take care,
Joe0 -
Lol!!! I confess!soccerfreaks said:
I've done that. And I agree, chicken (and other fowl) is a whole other animal
Take care,
Joe
I have done the chew up a piece of meat and spit it out thing too! I gave it too Nizzy tho. He does not often get tidbits of food cause he's too chubby but he was happy! Too funny how we do stuff like that.0 -
So relatable
Now for me, the funny thing is, steak - properly cooked slightly less than medium rare cooked with onions, red peppers, mushrooms, olive oil, some sushi rice with butter, some extra butter for the steak, and a glass of water, was one of my relatively early go to meals. That is to say, six months out. I'd had tube feeding and a few months trying to sip broth and being joyful to add a few ramen noodles back in before that. But still there were so many things I could not eat either due to taste or texture or choking. Nothing with acid, which included things like apples - it took me 2 full years to find any fruit I could eat happily. No spice. No desserts except I marginally happy happy drinking coffee milkshakes. I had lived on Boost Plus Vanilla for a few months so at least stabilized my weight after finding I could do that.
And yea, the restaurants and social gatherings were hard.
Now for a few months, I've been able to eat enough more things, at 2.5 years out, that I can reliably eat something ( maybe not pleasant but at least I join in ) most of the time. Coffee milkshakes and lattes taste more or less like they did. FOr one year, all I could really eat reliabily was a particular breakfast meal - an egg scramble ( again with the onions, red peppers, mushrooms, extra butter - switched to just a little extra olive oil a few months ago ), plus pancakes, and I had to have a weak coffee latte and a glass of water alongside, and that meal worked reliably for a year ( at a restaurant pre-covid; they closed soon after I'd said goodbye to them but I learned how to cook the same meal myself ).
Now my big concern is just - OK, it looks like I'm going to be one of the 5 year survivors, but I notice that stats on recurrence are higher than that 5 year survival rate ( HPV Positive - seems in my favor ). As well, I still can't eat so much, but at least know more or less what I can eat and can usually find one thing on most restaurant menus that won't make me miserable.
Thanks all for the old shared stories, it's nice to know the paths others have followed.
Charlie
0
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