Any ideas on What to Eat?

ocmark,

I tried soft foods, I tried all foods, I tried all the time, but my taste and feel aversion had me mainly on smoothies for 7 months.

I enjoyed tomatoes and cucumbers with olive oil immensely. I attempted Sunday dinners with my parents every week.  I snacked, I munched, I had a few winners and a lot of losers.

Point being, that in additions to what we suggest, you are now a food scientist on a quest to find taste nirvana.   

Happy seeking.

Matt

You have already got great advice from thoes who had radiation and chemo as I didn't. I had my larynx remover so it was liquid frist. Campbell's Cream of Chicken soup, I ate the whole can which was 300 cal, as I lost weight and was down to 126 lbs. I ate five cans a day and crackers [keebler club crackers], pudding, jello. Then went to soft, mashed potatos and lots of gravy, scrambled eggs, fried eggs, and just up from there. Watch out with crunchy food as it can feel like it gets stuck and pieces are sharp and can hurt.

Bill

I blend just about anything there is and take it through my PEG tube, no one going to call me late for lunch. I am having a wonderful time up at Toledo Bend with all my children and grandchildren this thanksgiving and what better to give thanks for then being alive.

Tim  

I wasn't able to eat much for much longer than 3 weeks, but my nutrionist gave me a list called "mechanically modified diet" and what it showed was that food would need to be processed/ground/pureed etc so that it would be easier to swallow.

Taste for me was non-existent and I've never been a big fan of 'mush' so it was a struggle.  I did find that saltier worked better so small pieces of
Spam, scrambled eggs laced with cheddar cheese, warm whole milk, Campbell's chicken noodle soup all worked, but swallowing was so difficult that I had to work up the courage to put food into my mouth.

It wasn't until some 3 months later that my throat finally improved enough to be able to swallow 'real' food.  I was very surprised to see how much better I felt as I started eating real food and consuming more and more calories.

I'm 3-1/2 years out from my last rad and things are back to mostly normal, or 'abi-normal' as others on this site have said.  I need to make sure I have water available and I need to watch out for sour flavors (way too hard to take) but other than that, life is GOOD!

ocmark said:

OK. I'm starting to panic now.

It's so hard to relate to the timeframes you are all talking about for throat recovery. 9 weeks out, 4 months out, 3-1/2 years to abi-mormal?

My doctors didn't tell me anything like this. I see one of the worst offenders tomorrow and he is going to get an ear full.

My biggest concern is trying to go back to work. I can't see trying to go to work if I can't eat somewhat mornally. I have to use the numbing mouthwash in order to eat what I'm eating now. I can't eat this way at work. Others have said it took months, I'm starting to believe you and I'm really mad about it. At 62, I'd hate to lose my job, but now the future is looking very uncertain over this eating issue. I gave my life to Jesus years ago, and it seems I have to keep re-giving it to him, expecially since the big "C" arrived.

Don't panic. It's hard for me to believe a year ago I was at your stage. Every function is almost back to normal,  no abi about it. I didn't have a PEG so I had to keep eating. For a while, it was liquids, then soft, and eventually almost anything. You are doing well for only three weeks out if you are eating soft food. There are many items you can take to work for lunch. Canned fruit like peaches and pears are good. Canned or home made pasta slides down easily. Cooked vegetables and soup are good.  Keep a few bottles of Ensure on hand to drink if your mouth bothers you that day. Always have water handy, take small bites, and chew thoroughly. It will take you longer to eat, but just experiment at home and add the "eatables" to your lunch menu. You may not want to try to keep up a conversation during lunch because it does require some concentration to eat, but I have found people to be very understanding. 

As far as the pain, my sore throat slowly improved over about four months. I had quit my job before diagnosis because of feeling so sick, but started teaching again part time about six months after treatment ended. Everyone is different and jobs vary in physical exertion, so it's up to you when you feel able to work again. 

Cancer has a way of reminding us that God is in charge and will work even diseases like this for our eternal good. You'll be in my prayers. 

Beth

Kenny- said:

i went through similar phases

ocmark,

My doctors fully disclosed the symptoms which mine did (loss of taste, etc), I accepted the treatment and still pretty frustrated around week 3-4. I'm an avid cook, and actually, prepare meals on a daily basis for the family. Taste is essential - in fact I go crazy over making sure food on the table tastes good and is healthy. Now, I can't taste at all and have lost one my favorite therupatic hobbies (cooking!) that takes my mind away from stuff. 

But you wil get over it! At week 5 and above, I sorta got over it and now I have completely no appetite for food on the table. Things that I use to salivate over no longer have an impact. I still cook for the family, albeit by memory. I prepared a thanksgiving dinner and relied on memory and people helping to taste food for me. Sometime the mind takes over for survival, and the reliance on liquid food seems to be the most convinient that one loses the cravig for the usual food indulgences. It's quite sad, but also, a true testimony for how the mind+body adapts for survival. It's really a wonder from god to have created such a unique being. 

For some motivation, I'm starting my week 3 after radiation and while my throat still hurts and recovery is really slow, I am able to down liquid food without the help of magic mouthwash. It is painful, but the pain is bearable (2 weeks ago it was not possible). this is of course liquid food only; but I'm quite confident in a week from now I'll be able to take 'very soft' foods, and a month later back to normal foods. But I start adjuvant chemo, so I expect those mouth sores will come back. But the point is while the recover is slow, progress is measurable in weeks for my case. Each person is different. But I won't lie to you, while I can take 'very soft foods', it tastes really bad, really really bad. I actually rather blend everything and gulp it down conviniently, but physchologically I'm forcing myself to deal with bad tasting food. 

Family has been a great help. They were the folks that remind me to eat, forces me to do things that I don't really want to do like wake up in the morning and have my 'liquid diet'. I couldn't have done it without them. 

hang in there! Everyone recovers at a different pace, but progress will occur! 

Thanks Kenny for posting. It helps me as a cargiver to hear it from the other side. It must be so hard for you to be the cook. Our culture is so connected with food, family and love that it's hard to let go of that aspect. It's a whole new ballgame now. I have to look at it as just mechanically preparing food for calories and protein to meet a daily goal. I calculate and measure everything. My hubby is doing soups, hot cereals, soft foods and just trying lots of different things. It's frustrating for both of us. I've thrown away lots of things and today I cleaned out my pantry to take to the food shelves. At least you are able to force yourself to do the liquids. It sounds like you don't have a tube? We are trying to wean off the tube and it's been tough. It makes me so sad to see him going through this. Eating truly is a full time job right now. It's hard for me to imagine exactly what it's like - to have no appetite or no taste.

BUT that being said, I have to say that we ARE making progress! We've weaned down from 6 cans of Nutren per day to 3 and I'm working on 2 cans per day this week. That means more calories per meal, of course, since we don't want him to lose any weight. I'm doing a lot of experimenting with foods, but at this point am using mostly dairy products to add calories and protein. With breakfast alone he manages to get about 600 calories. I cook oatmeal with whole milk, flaxseed meal and serve it with half and half, then top with maple sryup and sometimes butter. You can add protein powder, too, and it is disguised pretty well. No matter what I try, he says everything tastes bad so I just go for the calories. For lunch I make Campbell's tomato soup mixed with whole milk and cheese. Tonight I'm going to try a chicken casserole with rice, sour cream, and cream of chicken soup. This will be the first time with meat, so we'll see how it goes. Right now I'm just trying to keep it simple. He doesn't like ice cream, shakes or any of those supplemental drinks, so that makes it more challenging.

I believe his RO said the taste buds start to come back at about 3 months. Each day it gets a little easier. Kenny and ocmark - you both are very early out of recovery and you both have such great attitudes and will power. I can tell from reading your posts that you'll do well. 

Keep up the good work!

ocmark said:

OK. I'm starting to panic now.

It's so hard to relate to the timeframes you are all talking about for throat recovery. 9 weeks out, 4 months out, 3-1/2 years to abi-mormal?

My doctors didn't tell me anything like this. I see one of the worst offenders tomorrow and he is going to get an ear full.

My biggest concern is trying to go back to work. I can't see trying to go to work if I can't eat somewhat mornally. I have to use the numbing mouthwash in order to eat what I'm eating now. I can't eat this way at work. Others have said it took months, I'm starting to believe you and I'm really mad about it. At 62, I'd hate to lose my job, but now the future is looking very uncertain over this eating issue. I gave my life to Jesus years ago, and it seems I have to keep re-giving it to him, expecially since the big "C" arrived.

ocmark,

Don't feel like it's taking too long.  The time frame is about right.  I too suffered the same issues and was able to eat scrambled eggs, cooked with butter and not overdone so they're slippery.  Canned peaches, lots of chicken noodle soup with extra noodles, and (yuck) Ensure.  Forget mashed potatoes unless you make them really wet.

It will get better and by this time next year you'll be normal...sort of.  Aby-Normal, as we say.

Stay positive!

Tom

the_wife said:

It's all just hit or miss...

My hubby is 9 weeks out and we are trying to wean him off the tube. The only foods he liked at first were eggs (poached or scrambled), and chicken noodle soup. Problem is that chicken noodle soup has no calories. He's been able to eat cottage cheese and some heavier soups like pea, but that doesn't always appeal depending on the day. I think we'll try upgrading to Cream of Chicken, Bill, thanks for the suggestion.

It's hard because I'll make basic homemade dishes and try to add things to increase calories or protein, but have only had mixed success. His tongue still has sores and he has no taste and absolutely NO appetite. We've reduced the amount of feedings via the tube to try to stimulate his appetite, but that didn't work.

Last week I made a pumpkin fluff with pumpkin, whipped cream and instant pudding mix. I tired making a pecan pie smoothie, but that didn't turn out. He doesn't like ice cream or shakes. Most fruits are too 'astringent' on his tongue - even applesauce, but maybe that's changed now. I'll have to try some smoothies to see if he can tolerate any fruits now.

About the only thing that's worked is hot cereal. I add protein powder to oatmeal or Malt O Meal to beef up the calorie content. I also add cream or whole milk, maple sryup, butter and flaxseed meal. I recently tried adding olive oil to soups for more calories, but that changes the taste quite a bit. It's all just trial and error. His NP told him that eating right now is a full time job and that is so true.

We'll have to try the Chinese Buffet.

 

Yikes! I get so frustrated reading that a person who has oral cancer and been through what we have been through won't eat something that is healthy because they don't "like" it or don't have a "taste" for it! I'm so aghast I can't even reply. Do you want to survive or not? Is a taste in your mouth worth not getting well? What on earth are you thinking? 

I see this is a somewhat old thread, but the problem is a common one.  I had two glossectomies in March, then all my top teeth pulled mid-October, without immediate dentures.  The glossectomies were easier to eat after--I actually got to where I could eat "real" food.  Then came the teeth.  It's been 8 weeks and I can manage scramled eggs and smooth soups.  We had bought a blender when my tongue was done, so I looked up new ideas.  There is a website on eating with one's jaw wired shut that was useful--I learned how to make meat mushy enough to eat without chewing.  It does get very frustrating.  I keep looking at nuts and chips with a longing and some salivating.  It will be another 3 to 4 weeks before I get my dentures and get to try "real" food again.  In the meantime, I just blend things together.  Sometimes I have to throw them out because they taste awful and start over.  It's not as complicated as many of you here have gone through, but it grates over the long term.  I am diabetic and must eat 4 times a day whether I want to or not.  I don't really have a set solution--you just have to keep trying ideas.  Many of the things other people eat without teeth did not work for me.  It's all pretty individual.  

soup is the main thing I eat. I put three drumsticks of chicken in my heavy iron pot with lid put carrots, onion, herbs garlic clove, parsnip, swede(turnip) leeks a gravy stock gel chicken with chicken...beef with veg is nice to. Salt and pepper. When it's cooked I take out the chicken...I save that for the dog...lift all the veg into my bullet with some of the soup and finely blitz. I have it very warm with fresh cream. You can add a couple of raw eggs into the soup at blitzing stage. Serve add cream...lovely.