calling all picky eaters

SmithMama2
SmithMama2 Member Posts: 48
edited March 2014 in Head and Neck Cancer #1
OK, this is a question for those who have been out of treatment for some time now. My husband has always been a picky eater. Now he is almost 3 weeks out of radiation/chemo, and I can't get him to try foods again. He can swallow water, pills, and an occasional bit of cream of wheat. Because everything still tastes yucky, he says that he isn't going to try to eat until the taste comes back. He has one bite of something, then won't have any more. We have been told that he needs to eat whether it tastes yummy or not. He has a peg tube and he is getting the nutrition and water he needs daily, so this isn't a question of major weight loss. Just learning to eat again before his throat tightens and he isn't able to eat.

So for those of you who are also picky eaters and who have been through this, please give me your 20/20 hindsight recommendations. If you could do it again, what would you have done differently? How do you get past the taste to eat when you know it is good for you?

His goal is to eat Thanksgiving dinner in a month. Not sure how realistic this is.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Take it to the limit
    I am not a picky eater. In fact, when I first went in to see the speech/swallow therapist, she opined that perhaps as the oldest of six kids I had never learned to eat properly :).

    True story, that.

    But, I am a survivor of head/neck cancer, having had surgery to replace half of my tongue, along with rads and chemotherapy, and as a result apparently have a smaller throat opening due to rad and surg scarring.

    ENT Man is going to be going in soon to see if he can dilate the throat for me despite the scarring. We shall see.

    As it happens though, I went to see my physical therapist today, the one I went to see some three years ago and more to widen my mouth. When I went to her, my mouth was opening, again due to the surg and rads (and lack of use) to about 20 mm. Hardly enough to stick a finger in there.

    When we were done, I was up to 29mm, quite a difference, frankly.

    I bring this up because lack of use of the muscles in the jaws and elsewhere in the mouth can lead to trismus, another reason for hub to get on the eating habit and to stick with it, whether he is enjoying the food right now or not.

    I eat now, SmithMama, I eat hamburger and tomatoes and ice cream and yogurt and onions and soups and puddings and pies and whatever, but it all has to be pretty much diced up, prepared specially. If hub has no other motivation, tell him that you know someone who considers hamburger commercials to be pornography these days :).

    Best wishes to hub and his family.

    Take care,

    Joe
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    soccerfreaks said:

    Take it to the limit
    I am not a picky eater. In fact, when I first went in to see the speech/swallow therapist, she opined that perhaps as the oldest of six kids I had never learned to eat properly :).

    True story, that.

    But, I am a survivor of head/neck cancer, having had surgery to replace half of my tongue, along with rads and chemotherapy, and as a result apparently have a smaller throat opening due to rad and surg scarring.

    ENT Man is going to be going in soon to see if he can dilate the throat for me despite the scarring. We shall see.

    As it happens though, I went to see my physical therapist today, the one I went to see some three years ago and more to widen my mouth. When I went to her, my mouth was opening, again due to the surg and rads (and lack of use) to about 20 mm. Hardly enough to stick a finger in there.

    When we were done, I was up to 29mm, quite a difference, frankly.

    I bring this up because lack of use of the muscles in the jaws and elsewhere in the mouth can lead to trismus, another reason for hub to get on the eating habit and to stick with it, whether he is enjoying the food right now or not.

    I eat now, SmithMama, I eat hamburger and tomatoes and ice cream and yogurt and onions and soups and puddings and pies and whatever, but it all has to be pretty much diced up, prepared specially. If hub has no other motivation, tell him that you know someone who considers hamburger commercials to be pornography these days :).

    Best wishes to hub and his family.

    Take care,

    Joe

    It changes everyday
    I and your husband are at exactly the same place post treatment. The reason I eat other than to keep those muscles working is because taste changes everyday. There are days when I get a hint of sweet or I can actually tell the difference between chicken soup and beef stew. I mash all this stuff. Then the next day it may go away. Tell him to brush his tongue really clean every day. Then drop a few drops of blue food coloring on the tongue. Get a magnifying glass and see if you notice any of those little papilla bumps comming out. Those are his taste buds. It will be encouraging just too see one, then two then who knows?
  • Tootsie47
    Tootsie47 Member Posts: 8
    #4
    picky eater's wife
    Hi, Like you I have a picky eater husband. He is 7 weeks out of treatment and is really doing well--in all ways except eating. The Speech Patholigist is amazed at his swallowing ability, tongue strength, etc. etc. etc. but he won't try many things because they taste awful. He's really afraid to try things he liked before because he knows if they taste bad he will never taste them again--and yet he won't taste things he didn't like because he knows he doesn't like them. His pre-treatment choices were so narrow anyway (and mainly very unhealth). I'm at my wits end. I see years of feeding tube ahead. But like your husband he says he will get off and soon. I just don't see how since he isn't trying anything.Unfortunately my husband never liked turkey so Thanksgiving isn't a goal he cares about.
    The Speech Patholigist told him it is all a mind over matter and that he could drink a can of nutrition in about 30 seconds. He won't try. He did make it through a bottle of Nestle's Quick chocolate milk yesterday. I feel like all I've done here is rag and not given helpful suggestions but I guess I just needed to do that. You are not alone in this. I do wish you well and hope that your husband soon gets his taster back.
  • SmithMama2
    SmithMama2 Member Posts: 48
    #5
    Tootsie47 said:

    picky eater's wife
    Hi, Like you I have a picky eater husband. He is 7 weeks out of treatment and is really doing well--in all ways except eating. The Speech Patholigist is amazed at his swallowing ability, tongue strength, etc. etc. etc. but he won't try many things because they taste awful. He's really afraid to try things he liked before because he knows if they taste bad he will never taste them again--and yet he won't taste things he didn't like because he knows he doesn't like them. His pre-treatment choices were so narrow anyway (and mainly very unhealth). I'm at my wits end. I see years of feeding tube ahead. But like your husband he says he will get off and soon. I just don't see how since he isn't trying anything.Unfortunately my husband never liked turkey so Thanksgiving isn't a goal he cares about.
    The Speech Patholigist told him it is all a mind over matter and that he could drink a can of nutrition in about 30 seconds. He won't try. He did make it through a bottle of Nestle's Quick chocolate milk yesterday. I feel like all I've done here is rag and not given helpful suggestions but I guess I just needed to do that. You are not alone in this. I do wish you well and hope that your husband soon gets his taster back.

    we have the same picky husband
    Tootsie47, I think we have the same husband! I asked the nutritionist today if picky eaters had a harder time getting off the peg tube, and she said most definitely that was true. It is SO FRUSTRATING! The upshot seems to be that the more tastes and variety provided, the quicker the taste buds return. And things that taste good today (well not yet for my husband!) might not taste good tomorrow and vice versa. So continuing to offer variety is important. But the phrase "you can lead a horse to water but you can't make it drink" is what I am dealing with now! My husband now has such a vomit hair trigger, he often gags and throws up when he tries food, not because he can't swallow it, but because it tastes awful. And the more he does this, the more fearful he is that it will happen again the next time he tries something. He says he will eat and swallow when his taste buds return. By that time, he might not be able to swallow. It causes me so much worry and concern. But if I push him too hard he is cranky and doesn't want me around. Rock and a hard place...

    If you come up with anything that works for your husband, please let me know!

    Karen
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    SmithMana2

    Just a few weeks out of treatment everything still taste like cardboard, if I remember I did not get any taste back for almost 3 months. His brain will kick in gear once it has reestablish what taste is, by Thanksgiving he should be able to start tasting something and by Christmas he should have a lot of taste back. Don’t get disappointed as it will not all come back but he will get use to his new normal.

    Take care
  • jeb54321
    jeb54321 Member Posts: 22
    #7
    I'm with your husband...
    I never thought of myself as a "picky eater". The exact opposite, really. I LOVE variety and I have been craving all manner of foods since I stopped eating.

    I'm now 60 days out from chemo and 53 days from radiation (yeah, still counting DAYS).

    I don't want to eat ANYTHING! My sense of smell is perfect, in fact it seems better than before treatment. But NOTHING tastes like it should, and I'm still struggling with the mechanics of swallowing when there is almost no saliva to assist in mastication. Although my throat has been checked and got 100%, my mouth doesn't know how to cope with chewing and swallowing anymore.

    Mostly though, its the taste. Nothing is good. What I do eat is barely tolerable and nauseating.

    BUT, the bad news I've read in this forum is that as many as 2/3 of patients get back only partial or no taste. I DESPERATELY want to get off the PEG tube (I documented my trials with that elsewhere in here) so the only option is to get enough nutrition orally that I can have the PEG removed.

    Here's my theory - I'd be interested in comments: This is my "new normal", and the only real choice is to practice, practice, practice until I get used to this new form of eating.

    I understand that people who have limbs removed can get a prosthesis that picks up messages from their nerves. They can learn to control the prosthesis, but the nerves are all different, so they have to learn that "moving a finger now wiggles the thumb"... that kind of thing.

    I think I have to TRAIN my mouth to eat and taste in a new way. I can't wait till my taste comes back because I don't know that it ever will, and I'm almost CERTAIN my saliva glands won't be coming back. So from now on, eating is just going to be "different", and if I practice it enough, I'll eventually get used to the new me.

    I'm not happy about it, and its a LOT more difficult than it sounds (I'm still taking Zofran before I eat for nausea), but it sure beats this stupid tube!

    -jim
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #8
    jeb54321 said:

    I'm with your husband...
    I never thought of myself as a "picky eater". The exact opposite, really. I LOVE variety and I have been craving all manner of foods since I stopped eating.

    I'm now 60 days out from chemo and 53 days from radiation (yeah, still counting DAYS).

    I don't want to eat ANYTHING! My sense of smell is perfect, in fact it seems better than before treatment. But NOTHING tastes like it should, and I'm still struggling with the mechanics of swallowing when there is almost no saliva to assist in mastication. Although my throat has been checked and got 100%, my mouth doesn't know how to cope with chewing and swallowing anymore.

    Mostly though, its the taste. Nothing is good. What I do eat is barely tolerable and nauseating.

    BUT, the bad news I've read in this forum is that as many as 2/3 of patients get back only partial or no taste. I DESPERATELY want to get off the PEG tube (I documented my trials with that elsewhere in here) so the only option is to get enough nutrition orally that I can have the PEG removed.

    Here's my theory - I'd be interested in comments: This is my "new normal", and the only real choice is to practice, practice, practice until I get used to this new form of eating.

    I understand that people who have limbs removed can get a prosthesis that picks up messages from their nerves. They can learn to control the prosthesis, but the nerves are all different, so they have to learn that "moving a finger now wiggles the thumb"... that kind of thing.

    I think I have to TRAIN my mouth to eat and taste in a new way. I can't wait till my taste comes back because I don't know that it ever will, and I'm almost CERTAIN my saliva glands won't be coming back. So from now on, eating is just going to be "different", and if I practice it enough, I'll eventually get used to the new me.

    I'm not happy about it, and its a LOT more difficult than it sounds (I'm still taking Zofran before I eat for nausea), but it sure beats this stupid tube!

    -jim

    Keep trying!
    I am 5 weeks out from treatment. (33 rad, 3 chemo over 6 weeks) I had been using my PEG tube for about 6 weeks and was very weak and kind of shakey. I had lost about 35 pounds. 2 weeks after my last rad I thought I'd try some soup because I was able to drink liquids just fine. I warmed some cream of celery and ended up eating the whole can. Within 2 hours or so I couldn't believe how much better I was feeling. I had another can for dinner. It was like Popeye eating spinach! The difference in how I felt from "real" food to the Osmolyte. I was convinced that although the "formula" could keep me alive it wasn't what I needed. I added "soupy" oatmeal and kept up with the soup and within 5 days I felt huge better. My Oncologist said to stick with the things you know you like, not too hot or cold and if something doesn't work out, try something else. I too have a dry mouth, breads, rolls, toast really tough but I have kept trying as much as I can. I have gained back 10 pounds since then and my energy levels are good. I had my PEG removed on Friday and am so glad to have it gone. Things don't taste the same to me either, but I know I need to get my weight and strength back in case I need to do this again and real food is the key. Keep trying! If you know it's something that you really liked before your treatment, you probably still like it now, it just doesn't taste the same. To combat the "dryness" I eat a lot of stuff that has add'l moisture. Pasta's with sauce, meat with mashed potato's and gravy, eggs and still soup most everyday. (with a grilled cheese sandwich I can dip) Don't give up, I hope things improve. Good luck!

    Mike

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