Eating Problems

Hondo

I just wonder sometimes if I am the only person in the world who when I sit down to eat has all these problems.

1. I am always first at the table and last to leave. (I hate eating alone)
2. My plate of food is always smaller then everyone else
3. My food is always hot when I get it and cold when I finish it.
4. I can’t talk and eat at the same time
5. When I go out to eat people are always looking at me. Do I look funny or is it because I miss my mouth sometimes and spill the food allover the place.
6. My friends at work don’t ask me out to lunch anymore because I eat to slow.
7. When I do finish eating the kitchen is cleaned so I never get a second plate of food.
8. The dog is always sitting next to me at the table waiting for something to fall

What do you all think; does anyone else have problems like these?
Hondo

jim and i

eatting
I agree eating alone is the pits. I can't wait for Jim to want to eat. I don't think I will leave the table until he is through eating. As for the small plate, I need to eat off a small plate myself. Talking and eating at the same time is not good manners and slowing down when you eat is recommended for good digestion and weight loss. As for friends inviting you to lunch? They are not really your friends if they let slow eatting and good manners interfer with time together. Just my thoughts.

Debbie

Hondo

jim and i said:

eatting
I agree eating alone is the pits. I can't wait for Jim to want to eat. I don't think I will leave the table until he is through eating. As for the small plate, I need to eat off a small plate myself. Talking and eating at the same time is not good manners and slowing down when you eat is recommended for good digestion and weight loss. As for friends inviting you to lunch? They are not really your friends if they let slow eatting and good manners interfer with time together. Just my thoughts.

Debbie

Hi Debbie

When I eat it normally takes a little over an hour and we only get an hour for lunch. So everyone would be late getting back to work, I guess this is one of the reasons. However when I am late getting back no ever questions it, my Boss knows my problems so I just come and go when I want.

Like you say being alone is not good even if it being alone just to eat. My wife sits at the table with me sometimes especially when I have days that eating is a real pain, she keep trying to encourage me to keep trying till I get it all down.

Thanks
Hondo

hawk711

Hondo said:

Hi Debbie

When I eat it normally takes a little over an hour and we only get an hour for lunch. So everyone would be late getting back to work, I guess this is one of the reasons. However when I am late getting back no ever questions it, my Boss knows my problems so I just come and go when I want.

Like you say being alone is not good even if it being alone just to eat. My wife sits at the table with me sometimes especially when I have days that eating is a real pain, she keep trying to encourage me to keep trying till I get it all down.

Thanks
Hondo

Slo-Mo Eating
Hondo
I eat slow and drink a 1/2 gallon of liquid during the meal, (milk is the best flush).
I look at the plates that friends eat and say to myself, "how can they eat that much"???
I track calories daily and have a hard time getting my 2000-2400 I need. Think about all of you H&N folks during every meal and say a prayer for all of us...Keep eating dude!!
all the best
Steve

amr2662

Hondo said:

Hi Debbie

When I eat it normally takes a little over an hour and we only get an hour for lunch. So everyone would be late getting back to work, I guess this is one of the reasons. However when I am late getting back no ever questions it, my Boss knows my problems so I just come and go when I want.

Like you say being alone is not good even if it being alone just to eat. My wife sits at the table with me sometimes especially when I have days that eating is a real pain, she keep trying to encourage me to keep trying till I get it all down.

Thanks
Hondo

Hondo
Your issues sound
Hondo
Your issues sound exactly like the ones I have. I am a 12 year NPC Stage 4 survior. Over the last few years my ability to eat has gotten much worse from nerve damage from the radiation. I too was embrassed to eat in public because I was too slow and often choked on food. After several years of struggling to eat enough and spending everyday after work eating for several hours (yes I too have re-heated food that gets cold) I had a feeding tube put in. The feeding tube has given me my life back. I love it. I eat about 1/2 of my calories and the rest I get from the tube feedings. Although I enjoyed the taste of food it had become a chore to eat. Now I can take a few bites of something and enjoy it and not have to worry about getting in enough calories. My energy level has returned as well.

Meredith

sweetblood22

Sounds like me...
...plus I would add a few additional.

I don't bother to try and eat with the rest of my family, I can't eat what my dad cooks and everyone leaves the table after 5-10 minutes, so what's the point. Then im left with dogs that encircle me like a pack of hungry wolves. No thanks.

My portions are smaller, but they are definitely calorie packed with foobricants like butter or olive oil.

I cannot eat hot food anyway, because it hurts my tongue, I start out with it luke warm at most, and since it takes me two hours to eat, it's cold anyway. I really had to get used to that because cold food was always gross to me. I used to eat my food piping hot.

Talking and eating is definitely a no go. I don't really go out to eat. Or eat in front of people because food will get stuck 2/3 times every time I eat, and no one wants to watch someone hack up food. I would be making trips to the rest room I suppose. I guess I need to get over that some how, but I haven't and I am not eager to try. I have only eaten in front of family and my 3 closest friends who are like family.

Not only that, but a lot of times i cough a lot when I am eating. I sometimes start with my eyes watering like crazy and then I start to sneeze uncontrollably. Not great when you have a mouth full of food!

I don't really give Nizzy any hand outs, but he definitely sits there waiting to grab stuff that may drop, and if he sees my hand go up to my mouth he gets pretty attentive, because I'm usually pulling out something I can swallow and he might get it. Gross, I know. Oh well. Mommy birds do it. Lol.

I can tell you that I wouldn't be able to get enough food in me if I was working. I would still be too thin. I am happy that getting the peg tube placed was a good option and worked so well for the one poster. I would not want mine back. 18 months with it was enough. I hope I don't need to go through that again. The senario working and then trying to get enough to eat after is a nightmare to me.

I try really hard not to complain about my eating issues, because honestly I am so happy that I can eat something after not being able to eat for nine months. I can't say I thoroughly enjoy everything I eat. My taste and smell still aren't great, and stuff still hurts my tongue, but if it doesn't burn, or taste too salty, and I can swallow it, that's good. The last two nights I had some enjoyable food. I had potatoes, veg and chicken one night and I made a version of arroz con pollo last night, and both were outstanding. That was nice. I look back at my old FB posts and my food journals and I have come soooo far in the last year.

Hondo

amr2662 said:

Hondo
Your issues sound
Hondo
Your issues sound exactly like the ones I have. I am a 12 year NPC Stage 4 survior. Over the last few years my ability to eat has gotten much worse from nerve damage from the radiation. I too was embrassed to eat in public because I was too slow and often choked on food. After several years of struggling to eat enough and spending everyday after work eating for several hours (yes I too have re-heated food that gets cold) I had a feeding tube put in. The feeding tube has given me my life back. I love it. I eat about 1/2 of my calories and the rest I get from the tube feedings. Although I enjoyed the taste of food it had become a chore to eat. Now I can take a few bites of something and enjoy it and not have to worry about getting in enough calories. My energy level has returned as well.

Meredith

Hi Meredith

I would like to say welcome to CSN but looks like you been here for sometime my friend

I am glad you are here as I have a lot of questions I would love to ask you but will do it by PM if that is ok.

Please plan on staying as there are a lot of others here who have NPC cancer. I am 8 years from my first treatment and 6 years from my second.

Thanks again for your post
Hondo

Hondo

sweetblood22 said:

Sounds like me...
...plus I would add a few additional.

I don't bother to try and eat with the rest of my family, I can't eat what my dad cooks and everyone leaves the table after 5-10 minutes, so what's the point. Then im left with dogs that encircle me like a pack of hungry wolves. No thanks.

My portions are smaller, but they are definitely calorie packed with foobricants like butter or olive oil.

I cannot eat hot food anyway, because it hurts my tongue, I start out with it luke warm at most, and since it takes me two hours to eat, it's cold anyway. I really had to get used to that because cold food was always gross to me. I used to eat my food piping hot.

Talking and eating is definitely a no go. I don't really go out to eat. Or eat in front of people because food will get stuck 2/3 times every time I eat, and no one wants to watch someone hack up food. I would be making trips to the rest room I suppose. I guess I need to get over that some how, but I haven't and I am not eager to try. I have only eaten in front of family and my 3 closest friends who are like family.

Not only that, but a lot of times i cough a lot when I am eating. I sometimes start with my eyes watering like crazy and then I start to sneeze uncontrollably. Not great when you have a mouth full of food!

I don't really give Nizzy any hand outs, but he definitely sits there waiting to grab stuff that may drop, and if he sees my hand go up to my mouth he gets pretty attentive, because I'm usually pulling out something I can swallow and he might get it. Gross, I know. Oh well. Mommy birds do it. Lol.

I can tell you that I wouldn't be able to get enough food in me if I was working. I would still be too thin. I am happy that getting the peg tube placed was a good option and worked so well for the one poster. I would not want mine back. 18 months with it was enough. I hope I don't need to go through that again. The senario working and then trying to get enough to eat after is a nightmare to me.

I try really hard not to complain about my eating issues, because honestly I am so happy that I can eat something after not being able to eat for nine months. I can't say I thoroughly enjoy everything I eat. My taste and smell still aren't great, and stuff still hurts my tongue, but if it doesn't burn, or taste too salty, and I can swallow it, that's good. The last two nights I had some enjoyable food. I had potatoes, veg and chicken one night and I made a version of arroz con pollo last night, and both were outstanding. That was nice. I look back at my old FB posts and my food journals and I have come soooo far in the last year.

Hi Sweet

I don’t have all of my taste back but sure love anything I can taste. My wife makes Oatmeal in the morning and at night for me. I remember when I hated that stuff but now I love it, also it is sooo easy to go down and is supposed to be very good for the body.

Coughing and choking well I guess that is all part of the new normal for me too it goes with part you are going to live so get use to it. My biggest problems eating or drinking is Aspiration I hope I have it spelled right. When I eat or drink sometimes it goes down into my lungs and it hurts like hell from all the coughing trying to get it back out.

I do agree that after so many months of not eating or tasting anything, I am not going to complain, I too am just so happy to be able to eat and taste even if it is a little painful at times.



Thanks
Hondo

Hondo

hawk711 said:

Slo-Mo Eating
Hondo
I eat slow and drink a 1/2 gallon of liquid during the meal, (milk is the best flush).
I look at the plates that friends eat and say to myself, "how can they eat that much"???
I track calories daily and have a hard time getting my 2000-2400 I need. Think about all of you H&N folks during every meal and say a prayer for all of us...Keep eating dude!!
all the best
Steve

Hi Steve
Back when I was just out of treatment and had no taste one of my friends came in with two 12 inch long subway sandwiches stacked. He is a little guy about 5.6 and about 130 lbs; he ate them both and was still hunger after he finish, you are so right How can they eat so much…

My big question was where did it all go!

Thanks
Hondo

rarph123

trouble eating
First of all Honda<sweetblood and all the rest of you great people on this network that gives us hope and helps with our fears. The post on "how cancer has changed me" and the other was Alpha Man WoW did that hit home for me. Several years ago we lost two sons six mo. apart and untill that knock on the door from the C man I was not very human. It seems God said to me "Let's see if this will change you" and until I read your post I did not know what was meant by that==thanks for sharring.
Reading your post on eating make me wonder about my situation-Have st.4 B.O.T& lung both the same Complete 36 Rads for a total of 72 plus 8 Chemo.Have feeding tube and live on creme of wheat and the feeding tube.Question--When I try to eat anything other than mush I choke on it--tounge is swelled an throat--Dr. said maybe in 6 to 8 mo I may be able to eat.
2nd Question Is this simular to your eating problems, that the tounge is the problem or what else interfers with the process.

Pumakitty

My Dad
This sounds like my dad only it is the cat and not a dog. But he always was the last to finish and drop food all over the place

Kathy

sweetblood22

rarph123 said:

trouble eating
First of all Honda

Rarph
I am sure Hondo will chime in with his thoughts also. The side effects that you are having now, may be different from long term side effects. I know after treatment my tongue was swollen and it hurt so badly that anything that touched it felt like glass shards. Also my tongue would not manipulate the food around my mouth the way I wanted it to. It is better now, but it is still not the way it was prior to radiation. I cannot whistle, stick out my tongue, roll my 'R's', curl my tongue, also my 'th' when I speak is weird.

The reasons it's hard still for me to eat are:

1. Trismus. It's like lock jaw, your mouth doesn't open very far.

2. Severe dry mouth. Not only from radiation, but I had my left salivary gland removed during my neck dissection.

3. I have a stricture from radiation damage. I have been dilated a total of three times, twice since radiation ended. I have to chew my food very, very well and swallow miniscule amounts or it gets stuck. I also drink milk with dinner. My stricture is still pretty bad, one tiny piece of unchewed barley gets stuck. That is not a lot of room.

amr2662

Hondo said:

Hi Meredith

I would like to say welcome to CSN but looks like you been here for sometime my friend

I am glad you are here as I have a lot of questions I would love to ask you but will do it by PM if that is ok.

Please plan on staying as there are a lot of others here who have NPC cancer. I am 8 years from my first treatment and 6 years from my second.

Thanks again for your post
Hondo

That would be great!
Hondo,
Feel free to PM. I would love to share my experiences. Being able to help others is one of the blessings of having been through so much.
Meredith

Greend

had to smile
I just came back from a BS session with some friends; they drank four beers to my 1 1/2. I remember the days when I was the fastest eater and drinker. Everything you said applies and I had to smaile.

New Normal

Denny

shine1113

same here...
Hi Hondo,

I'm a 12yr-almost-stage4 NPCA survivor and am still on the same boat as you in terms of difficulty in eating, swallowing, talking, etc. From initial diagnosis in Nov. 1998, I underwent radiation, both external (cobalt therapy) and internal (brachytherapy). The treatment affected not only my taste buds but also my parotid gland (the largest of the salivary glands)thus, saliva production is very minimal to almost nil.

I have learned to live with this long-term (lifetime, I think!) side effect of radiation treatment as I'm well aware that proper nourishment is a must to boost the immune system and keep "big c" cells dormant. So, I complement each spoonful with sips of water in aid of chewing and swallowing. I'm grateful and blessed to have family and friends who fully understand my "eating difficulties" - slow-paced, in small quantities, sometimes nearly "choking" because food get stuck in my throat, etc.

At home, I always have a glass of water within reach to "refresh" my throat every so often. When eating out, the first thing I ask for is water and I also warn whoever I'm out with (esp. those who aren't aware of the side effect of treatment) that I eat slow, take time chewing to ease swallowing.

Though faced with this "eating challenge", I'm thankful that I don't lose sight of the more positive side of my big c journey - that is, I'm up and about and able to welcome each new day with a cheerful heart. Certainly, a grace from God who is with me (and with all of us) every step of the way and will get us through the hurdles.

So, my friend, a big hug to you with constant prayers. We're in this journey together. Take care always! You'll never walk alone.

shine1113

Robt54697

Hondo said:

Hi Debbie

When I eat it normally takes a little over an hour and we only get an hour for lunch. So everyone would be late getting back to work, I guess this is one of the reasons. However when I am late getting back no ever questions it, my Boss knows my problems so I just come and go when I want.

Like you say being alone is not good even if it being alone just to eat. My wife sits at the table with me sometimes especially when I have days that eating is a real pain, she keep trying to encourage me to keep trying till I get it all down.

Thanks
Hondo

Eating
Hi Hondo,
Brand new to this and just registered. I am 30 days post radiation. Had surgery, chemo, and radiation. Tonsil and several lymph nodes removed. Just depressed but do not take any anti depressants. It has been such a struggle to eat enough. Went from 166 lbs to 148 and have always worked out and been strong and healthy so just get down sometimes. Maybe you can click on my name and see pic and story. Anyway that is all. Thanks.

Robert

Ingrid K

Robt54697 said:

Eating
Hi Hondo,
Brand new to this and just registered. I am 30 days post radiation. Had surgery, chemo, and radiation. Tonsil and several lymph nodes removed. Just depressed but do not take any anti depressants. It has been such a struggle to eat enough. Went from 166 lbs to 148 and have always worked out and been strong and healthy so just get down sometimes. Maybe you can click on my name and see pic and story. Anyway that is all. Thanks.

Robert

Welcome, Robert
Robert, welcome. Please don't beat yourself up, it has only been 30 days and your body has been in a huge battle and you've come out on top ! It's way too soon to expect to be back to your old self. It takes time - lots of time, so try and be patient... maybe a hobby to take your mind off things and pass the time. Try and eat high-calorie items like pudding and ice cream, milkshakes for now until you can add new things to your diet. Your mouth is probably still very sore from radiation which is normal. There are many wonderful people on this forum who I'm sure will chime in with good advice for you. Now is not the time to be a macho man. Remember: You've been thru the fight of your life and come out the other side so CONGRATS !

D Lewis

Why yes, Hondo, I strongly resemble these remarks...
Hondo, you might just be writing about me. I'm sitting here trying to think if you've left anything out, and I don't think you have.

Well, there is that issue about the one family member (mother in law) who remains at the table with you, thinking it's polite to do so... but asks over and over... "Are you done yet?" " "Done yet?" "Done now?" "Just about finished?"

Although I must say, my relationship to the dog is closer than it has ever been before. She follows me EVERYWHERE!

Deb

Pam M

amr2662 said:

That would be great!
Hondo,
Feel free to PM. I would love to share my experiences. Being able to help others is one of the blessings of having been through so much.
Meredith

Hi Meredith
Yep - seeing that "Joined" date of TEN YEARS ago gives us all a boost - then, when you read the message - BONUS.

MJ70

Hondo
Got most of all the wonderful new normals you do ..except i am retired, no dog but wish i did at times...I am seven years out and i have picked up great advice from you along the way since i joined...(stopper 4 is great)..I only eat breakfast and dinner for several reasons besides all the ones you listed ...I get postprandial hypotension after i eat...which simply means low blood pressure...which last for about an hour...90/45 or lower..makes me very weak kneed and have passed out.I am taking some new meds that should...help soon..(fluocortisone.) My favorite dinners are ramon noodles or minute rice mixed with italian minestrone soap and ever a little pasta sauce or tomato soap .. i eat it with a spoon because with my new left jaw bone made from my fibula i have no nerve in my lip so it helps me get it in my mouth and not my table... If we go out it is something close to that.. all in all we keep going..and thinking positive...I am getting my esphagus dilated tomorrow morning .. never thought that would make me excited but it does. Hope every on this board has a great week ahead... Mel

Robt54697

Ingrid K said:

Welcome, Robert
Robert, welcome. Please don't beat yourself up, it has only been 30 days and your body has been in a huge battle and you've come out on top ! It's way too soon to expect to be back to your old self. It takes time - lots of time, so try and be patient... maybe a hobby to take your mind off things and pass the time. Try and eat high-calorie items like pudding and ice cream, milkshakes for now until you can add new things to your diet. Your mouth is probably still very sore from radiation which is normal. There are many wonderful people on this forum who I'm sure will chime in with good advice for you. Now is not the time to be a macho man. Remember: You've been thru the fight of your life and come out the other side so CONGRATS !

thanks!!
For your supportive reply. Actually I never had any mouth sores and my eating has gotten better. Using something called Boost Plus which is 360 cal and try and drink three a day and get the rest from solid food. It is so nice to have someone who has been there reply to me. Thank you again and hope to connect with you again and that you are doing well.

Robert