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First real meal... kind of

Kyle Gilmore
Posts: 55
Joined: Sep 2011

Hi,

I just had a whole bowl of cocoa krispies with milk.First thing to go down right since my last meal about 2 months ago...

Everything burns at one certain spot at the back of my mouth, it feels like its a sore. Will it go away eventually? My last radiation treatment was Nov 10th, and i can feel it getting better slowly but i wonder what meal time looks like for us after we recover from treatment.

How bout we list our favorite foods up to this point in our new lives?

I will start with Cocoa Krispies in whole milk, :)

Hondo's picture
Hondo
Posts: 5736
Joined: Apr 2009

Nothing wrong with a good bowl of something you can taste. My first food that I could taste after treatment was KFC, after that I had a hard time passing a KCF up without turning in for some chicken wings.

Glad to hear you are doing so well
Hondo

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

My first real meal (2+ years ago) was yogurt, so Coco-Krispies and KFC were way ahead of me! Since I'm quite a bit farther down the road to recovery, I can tell you that it's a very slow, but steady process--so don't get frustrated. I had to be very deliberate about what I tried to eat, and how I ate it--and still do to a large extent. I have to be mindful of each food's texture, bite size, moisture content, spiciness--and be sure to take water with every bite. And then, chew the heck out of it before I swallow it!

I think I have returned to about 90% of the things I could eat before my treatments, and have recovered about the same level of taste sensation. It just took a long time to get there. So, take it slow and don't get down when you can't eat something you want, or can't taste something you can eat.

Mike

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Kyle,

You may be surprised. For myself, the swallowing became easier and the taste returned quite gradually. It's a good sign that you can feel it getting better already. I am 16 months out and eat pretty much as I did before, maybe not 100%, but close enough. Don't give up hope, you may get there also.

I have too many favorite foods to list and they are probably the same ones as before treatment. I do, however, have a few foods which were the only things I could struggle to get down during treatment that I simply have no desire to ever eat again. Cheers.

Jimbo

Hondo's picture
Hondo
Posts: 5736
Joined: Apr 2009

You are in the right place for all kinds of good and different food types. I am glad to hear that after 16 months you are still doing so well.

Hondo

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

G'morning

I'm still in treatment , 25 out of 39 rad treatments complete, plus 3 more carboplatin infusions. My taste is all but gone , but I still eat. My sister, niece and I went for chinese last saturday, I had some egg drop soup..and WOW I could taste that, as well as the broccolli from the beef'n'broccolli. I still try everything just to see if I can taste, things that are sweet have a sour or tinny taste. But what I really think about is sushi, I haven't had any since my chemo treatments started in the beginning of August, I am hoping that when all is said and done I will be able to taste that again. I think what helps me eat things even though there is no taste , is being able to smell the food and flavors within it.

Congrats on the cereal...

Linda

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I am only a week prior to you for the last rads and I also have a burning sensation where the tumor was located. I actually think it is worse now than it was a few days ago but that may only be my imagination. I have some, abeit small, taste sensations but very little saliva function. Like those before us have said it is a long healing process.
Good Luck
John

jim and i's picture
jim and i
Posts: 1599
Joined: May 2011

Sounds like you are going to be one of those blessed with speedy recovery compared to most. Jim is 17 weeks out and still not able to swallow anything past the consistancy of applesauce and everything taste nasty to him except water. Hang in there, you are doing great.

Debbie

fisrpotpe's picture
fisrpotpe
Posts: 1334
Joined: Aug 2010

I am amazed your having cereal already. Sounds like your doing so well.

You might try some scrambled eggs, chicken noodle soup.

my first was chicken noodle soup but only broth and then weeks later the noodles

By the way, rice krispies might give you some pop! LOL

john

longtermsurvivor's picture
longtermsurvivor
Posts: 1785
Joined: Mar 2010

With my first radiation. I'll let you know on what happens with the second radiation later this winter.

My wife reminded me that I was still not eating normally when we first met, which was 3 years after my radiation. I still couldn't eat citrus fruit. It was still just too sour. I'm going to say it was 4 or 5 years after radiation when the spectrum of sweet/sour settled down enough I could eat an orange. Even now, 13 years later, sweet is not as sweet as it was before treatment. I love oranges though, so it was nice to be able to eat them again.

OTOH, if you are still sore, and aable to eat cocoa krispies, youare pretty tough!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

If you can eat cocoa krispies you should be able to eat a bunch of things, including the yogurt someone alluded to, ice cream, cream of * soups (cheese, chicken, broccoli, etc), soft-boiled and over easy eggs, mac and cheese, other pasta products, the list goes on. Mikemetz had really a great answer, in that you want to try things, but be careful the first time or two and have a liquid nearby to help in case there is any trouble.

My favorite meal, fyi, is the latest thing I have eaten for the first time since surgery and treatment. Therefore, as of right now it is chicken wings :) (Consider that you are speaking apples and oranges here, since some folks had no surgery and some had major surgery to the tongue, neck, and elsewhere, which effects progress, of course.)

Keep on keeping on!

Take care,

Joe

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am on a bacon and dark chocolate kick, lately. Only 2.5+ years later, have I been able to eat and taste them again. I just had Maple Bacon and Caramelized Onion Oatmeal. I have a truffle, and a few shortbread cookies for my 4:00 tea. :) I eat a lot of oatmeal these days, mostly in savory preparations. I eat a lot of veggies, eggs, cheese, rice, and grains like bulgur and barley. I can manage chicken thighs, and lamb chops, as far as meats go. I eat a lot of spinach, lately. And I drink, milk, milk, milk and more milk. 1%. I'm off my almond milk and smoothie kick. I am doing very well with my eating nowadays, too well, as evidenced by my scale numbers. It still takes for ever to eat, and I can taste a little better, and manage to eat more stuff. I'm always starving these days, which stinks. I feel like I want to eat 24/7, which would be a bad idea.

I am very impressed that you can eat cocoa krispies, already! That's terrific. (I went 9 months with out any food, I don't think that is very common.)

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

When I eat alone, this does not come to my attention--but when I eat with others I become aware of how slowly I need to eat to avoid any problems. My wife and friends understand this, and have been great about it. When I am with strangers I try not to overdo things and just eat what I can, at a pace I am comfortable with--always with lots of water. If I feel like I am holding them up, I just get a to-go box and finish later.

Before any of us got diagnosed with HNC, we took for granted the most basic act of putting food in our mouths, chewing it a bit, swallowing it, and sticking the next big bite on our forks. We no longer have that luxury. For me, eating is now a very conscious and deliberate event--I think about every bite of food that goes into my mouth, from the time it goes on my fork or spoon until it clears my esophagus (I have a stricture). That's one of the prices of survival, and I can "live" with that.

Mike

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I have

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

It looks like your reply got cut off.

Mike

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I have a stricture, too. I had one dilation pre cancer and two post radiation. Tonight, it took me 1.3 hours to eat a bowl of spaghetti with spinach, onions and soft cheese. I don't often eat out or eat with people. At home I cook for myself, because my father has four people to cook for, and isn't going to make modified food for me. Plus, if I go up there, everyone leaves the table after ten minutes anyway, so I'm left alone with 6 dogs circling me like sharks and people pulling stuff off the table, asking, "Are you done yet?" every five minutes while they are trying to pull all the food off the table. Plus, I cough, sneeze, hack and gag all through dinner. I have two couples, that are very good friends, and I don't mind eating with them, as they are understanding of all my stuff, they try and make food I can eat, and they sit with me until I'm done. :) Who would have ever thought you could take the act of eating for granted. I had my peg tube for 18 months. Went with out drinking by mouth for about five months, and no food by mouth for 9 months. I will never take eating for granted for sure. I'm grateful that I can eat again, for sure.

Hondo's picture
Hondo
Posts: 5736
Joined: Apr 2009

I thought I was slow on eating but I believe you have the record at 1.3 hours for spaghetti. I too stop eating with my friends at work because they would be finish before I got the first swallow down and looking at me and saying wrap it up and take it with you we got to go. At home I am always first at the table and last to leave, except for like you the dog stays looking for a hand-out. I too will never take the simple thing like eating for granted ever again.

Hondo

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I have to take tiny bites. There is just no point in trying to take big bites, it's impossible. My mouth doesn't open very wide (wider than yours, tho) and it's too hard to manipulate the food around in my mouth. Stuff will get stuck, and it's not fun trying to get it out of there. It's so tight in there, that one tiny piece of barley gets stuck if it misses getting chewed up. That ain't much room to swallow food. One of the big reasons I'm not working. I'd starve to death. I'm not getting a peg again, if I can help it. I'm too afraid to get stretched again, after what I went through. It's too risky for me. If I could not eat, I would do it again, but not now. I guess upper esophageal strictures, which is what I have, are hard to dilate, and stay open. I'm just glad that when stuff gets stuck, I can still breathe. I honestly get tired of eating long before I'm ever finished, and my mouth and tongue hurt, long before I'm done, but I press on, and make myself finish my plate.

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

When the time approaches for my next dilation, my wife and I use the "1 hour" rule of thumb to decide when it's time to head to the ER. If something gets stuck, we give it 1 hour to move down. After 1 hour, it's time to go to the ER. One time, we went to the ER and while sitting on the exam table I hicupped and the piece of food came up. They had to wait until my admission was processed before they could discharge me! Still, they billed my insurance company over $600!

Never a dull moment with HNC.

Mike

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

Sweet,

I have had three dilations, the last one six months ago in the ER of a local hospital. If there is a predictable schedule, I will be due soon for another--but so far no sign of it.

I don't know what to say about your father and the others who show impatience with your need to eat slowly, other than to say that makes me sad for you. All of this is difficult enough, without having to feel like your basic needs are an inconvenience to others. I have been given nothing but full support by my wife, family, and friends who go out of their way to make sure I can eat what is being offered, and sit with me while I slowly make my way through a meal.

Mike

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

In the ER of the hospital??? Didn't you need anesthesia and stuff? I've never heard of anyone getting it done in the ER.

I am happy that you have the full support of your family. It has been a difficult journey for me with being single and not having a caretaker when I really needed one. I don't know what to say, except it does suck.

Mikemetz's picture
Mikemetz
Posts: 341
Joined: Nov 2011

As usual, we went to the ER once the one hour rule kicked in. The ER doc called in a surgical team and they did it in one of the ER rooms, rather than have me wait to be admitted to the hospital. It was no problem.

mike

nwasen's picture
nwasen
Posts: 235
Joined: Feb 2011

My first food after treatment was cream of potato soup and then I choked on it (this was two weeks after treatment ended)> I still had my PEG tube in. I got scared, decided never to eat again! Came to my senses and called my ENT. I had a swallow test the next week and two months of electrode therapy and two stretches. PEG came out in July and I have never looked back.
I have to tell myself to slow down eating! Some foods are tricky and like Sweetblood I drink alot of milk especially when eating things that want to stick (chicken, stew meat).
I consider myself a lucky woman to have come so far after a bout with Stage 4. My ENT told me the other day that he refers to me as the miracle woman
I think getting to the best hospital is important! And docs, and therapists. I lucked out on all counts and credit them for keeping my quality of life so high. I shudder to think of what could have been.
I hope all of you can get the help you need to improve. We sure don't realize what a gift it is to be able to eat. I loved food and when I found it tasted like cardboard and wouldn't go down my throat I was so sad. I thought I could get better, but had no idea to what extent. I guess we all find out sooner or later what our new normal is, don't we?
As the holidays are upon us, my wish is that each of us gets to enjoy Christmas, even if it is different than what we thought it would be. I know I will!!
Peace and bon appetite!
Nancy

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

My first successful restaurant food after treatment was cheesy eggs at Waffle House. Yummmm. Before that, I had good luck with egg drop soup - but only from one certain place (less salty). At home, though, I couldn't do cheese with my eggs - go figure. Also had early success with the chicken and dumplings at Cracker Barrel.

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