Question about taste

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CivilMatt
CivilMatt Member Posts: 4,723 Member
edited August 2012 in Head and Neck Cancer #1
On a lighter note.

If I can’t taste, yet everything tastes bad. How do you describe what we are going through to others? I really don’t taste much, but what comes through the taste buds when eating a known item just isn’t there. I feel there must be a better answer then the standard ”I can’t taste”. I do taste, it is just all mixed up. Maybe I should say “I don’t know what I taste” or “My taste buds are all discombobulated”. I know this is silly, but I’ve tried to come up with a way to describe the taste bud scenario, and I got nothing.

In reality, I try to eat, and have been (slightly) successful with fruit, soups, corn-n-the-cob, granola bars and sweet tea made with Sweet’N Low. I am still drinking 3 smoothies a day, but I am willing to venture out.

Best,

Matt
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Comments

  • sonyk728
    sonyk728 Member Posts: 124
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    "I have no SENSE of taste"
    How's that Matt? Been there, done that last summer. You are able to taste a little, I was not at all. Absolutely awful not being able to taste things. Like eating cardboard for every meal and top of that, the mouth sores. I was careful to not say "I have no taste" because well that sounds like you have no taste in men, fashion, etc. Ha ha. I swear if you could come up with a pill people would take where they'd get no sense of taste, we would not have an obesity problem in this county. Hang in there. I lived on shakes last summer and it's been a beautiful summer here now and I can't go NEAR a shake or ice cream.

    Best to you!
  • blackswampboy
    blackswampboy Member Posts: 341
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    oh, for corn-on-the-cob
    as daffy duck once said, "Rabbit au gratin de gelatin under tooled leather. Oh, drool, drool." sorry, a cancer survivor's fantasy.
    that's a tough one, it really is.
    I've been going with "chocolate pudding cups taste like library paste." and it did, I nearly gagged. can't taste any sweet in pudding, but the sugar in bottled green tea comes through. bizarre. have to check more carefully on the substances they are using to sweeten.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I just tell people I have no tastebuds, and I have no spit....
    most people have enough imagination to realize some of what I'm saying....they don't remember very long, but I just say it again.

    I'm really missing fruit....that's my favorite food all year, grapes, watermelson, oranges, apples, peaches, nectorines.....damn the list goes on....I wish I could find one thing that was yummy....and I'd eat it everyday....but nothing is yummy, just some things are more passable than others.

    Everything however, smells wonderful!!

    p
  • Ingrid K
    Ingrid K Member Posts: 813
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    it will get better taste-wise
    Hi Matt,
    you are DOING GREAT !! The fact that you are eating corn on the cob.... that is incredible at this stage in your recovery.
    I used to just tell folks that my taste buds were fried during radiation and in the meantime most of everything tasted like _______ (fill in with whatever)

    However, don't give up.... you will most likely see some improvements in your taste up to and even past the one year mark. For me it took just about all of 11 months till I felt like eating anything...it was so dissappointing to constantly run to the sink and "spit" stuff out that tasted like crapola so I actually stopped trying to eat real food and stuck with the feeding tube... but then one day the taste wasn't as bad as it was before. I kept trying soft stuff, but had the best luck with pancakes and syrup so that was my go to food.

    P51 -- watermelon was the first fruit I could eat....and I think I enjoyed it so much because the juicy watermelon was like having saliva for a few minutes, LOL.

    So keep up the good work !!
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    I just tell people I have no tastebuds, and I have no spit....
    most people have enough imagination to realize some of what I'm saying....they don't remember very long, but I just say it again.

    I'm really missing fruit....that's my favorite food all year, grapes, watermelson, oranges, apples, peaches, nectorines.....damn the list goes on....I wish I could find one thing that was yummy....and I'd eat it everyday....but nothing is yummy, just some things are more passable than others.

    Everything however, smells wonderful!!

    p

    getting closer
    “I have no sense of taste“ is good, but I am tasting something I just don’t know how to describe it.

    Sweet’N Low turned my sweet tea into a 7 on my scale (highest ranking since January), but remember Sweet’N Low is 300x sweeter than sugar.

    Phrannie, my family doesn’t get it (Mom, Dad, brothers and sisters)

    tomorrow = 19 weeks post
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Ingrid K said:

    it will get better taste-wise
    Hi Matt,
    you are DOING GREAT !! The fact that you are eating corn on the cob.... that is incredible at this stage in your recovery.
    I used to just tell folks that my taste buds were fried during radiation and in the meantime most of everything tasted like _______ (fill in with whatever)

    However, don't give up.... you will most likely see some improvements in your taste up to and even past the one year mark. For me it took just about all of 11 months till I felt like eating anything...it was so dissappointing to constantly run to the sink and "spit" stuff out that tasted like crapola so I actually stopped trying to eat real food and stuck with the feeding tube... but then one day the taste wasn't as bad as it was before. I kept trying soft stuff, but had the best luck with pancakes and syrup so that was my go to food.

    P51 -- watermelon was the first fruit I could eat....and I think I enjoyed it so much because the juicy watermelon was like having saliva for a few minutes, LOL.

    So keep up the good work !!

    Hi Matt ...
    I'm going to say close to what Sony said....

    Here's what I said:

    "Due to radiation treatments to the throat, I taste mostly two things, cardboard with salt and cardboard without salt "...LOL

    Phrannie ...I have 90% of my taste buds back 6 months post rads...but for some reason most fruits kind of sting or burn my tongue and throat ..especially bananas or a cantaulope. Huh, go figure.

    Best,

    Tim
  • Sam999
    Sam999 Member Posts: 319 Member
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    Tim6003 said:

    Hi Matt ...
    I'm going to say close to what Sony said....

    Here's what I said:

    "Due to radiation treatments to the throat, I taste mostly two things, cardboard with salt and cardboard without salt "...LOL

    Phrannie ...I have 90% of my taste buds back 6 months post rads...but for some reason most fruits kind of sting or burn my tongue and throat ..especially bananas or a cantaulope. Huh, go figure.

    Best,

    Tim

    It is vey hard for people to
    It is vey hard for people to even imagine a no taste world! They dont know how that feels!

    Pharannie, like you i miss the fruits the most and love them all so even one tasting good will help! Right now i am eating few pieces of water melon (taste like water with some water melon flavor), good ripe plum tasted not too bad. I cook pear and apple in microwave and puree them.

    However, everything excpet dairy still stings. I still use lot of magic mouth wash and direct licodine gel as well. Even with this, something like banana is not eatable at all.

    One of new thing i tried was pumpkin soup, my sister made it and i could taste it all. She basically boiled pumpkin in water and added salt and sugar and crushed it. I added some milk when i ate it.

    Sam
  • tuffenuff
    tuffenuff Member Posts: 277
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    The worst part for me has
    The worst part for me has been getting people to shut up when I tell them I can't force myself to eat because I have no sense of taste. They always insist on rattling off a list of things I should try. After the first 3 weeks I was so disgusted with the idea of putting food in my mouth I just wanted to say SHUT THE EFF UP!!! I will eat when this is all over!!!

    I did try choc pudding again the other day because that was the last thing I could actually taste. It was like a mouth full of lard. Needless to say, I spit it out immediately. Which is really hard to do with a dry mouth lol! And for people who say its all in your head, imagine it tastes good and you can do it... HA!!!

    That's my rant :o)
  • osmotar
    osmotar Member Posts: 1,006
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    Taste
    Matt,

    I lost my taste about week 3 of rads...meats, fruits which I loved were terrible, but creamy soups were good and I could still taste radishes and broccoli. I can remeber the first time I could taste peanut butter again, I screamed out loud and the dogs jumped...it was heave. Now today 7 months out from tx , red meats still ahve a funny flavor so I don't eat any, but everything else is coming back slowly. still some minimal saliva issues..but other than thatit's ok. My sister an niece are here visiting and we went for pizza wed evening, sis asked what I wanted for toppings and before I could even say anything she laughed and said your not getting thos #%#@%@# anchovies , cause even if you can't taste them we can...

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    CRAPPY....
    Basically, water tastes like sweat, and most everything else just tastes crappy....

    That pretty much sums it up for me during my post Tx experiences...

    Now after three plus years, everything tastes...gooooood, and my waist line proves that, LOL.

    JG
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Skiffin16 said:

    CRAPPY....
    Basically, water tastes like sweat, and most everything else just tastes crappy....

    That pretty much sums it up for me during my post Tx experiences...

    Now after three plus years, everything tastes...gooooood, and my waist line proves that, LOL.

    JG

    Taste
    I'm eating or trying to eat most foods that I ate before Rads, I can taste a little
    but it goes away when I'm chewing. I can't realy eat breads or crackers
    because I have no saliva but still eating none the less. I still supliment with
    the 1000+ calorie shakes and my natural products.
    The inside of my mouth feels weird, my gums, teeth and cheeks feel like
    they are not mine......its a bit weird I know, but when I'm chewing it just
    doesn't feel right.
    Ah well give it time it will be ok.....I hope.

    God bless
    Tonsil dad,

    Dan
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
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    I can't figure it out either
    I find it amazing too how one thing just has no taste and another one tastes horrible. Today was my last radiation and I just wanted to eat something and for some reason dried beef gravy and biscuits was what I wanted, didn't know if I would be able to or not but I succeeded. One biscuit with gravy! It didn't taste like I thought it would but it didn't taste bad so I guess I will just keep trying things.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I can't figure it out either
    I find it amazing too how one thing just has no taste and another one tastes horrible. Today was my last radiation and I just wanted to eat something and for some reason dried beef gravy and biscuits was what I wanted, didn't know if I would be able to or not but I succeeded. One biscuit with gravy! It didn't taste like I thought it would but it didn't taste bad so I guess I will just keep trying things.

    I bought Coke to wash my tube with.....
    and found out that it tastes wonderful....just like coke!! I've tried Sprite, A & W Rootbeer, 7 UP, none of which tasted worth a damn....took a swig of Coke (which I never drank)...and it was so good, I drank the whole bottle :)

    p
  • ditto1
    ditto1 Member Posts: 660
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    I can't figure it out either
    I find it amazing too how one thing just has no taste and another one tastes horrible. Today was my last radiation and I just wanted to eat something and for some reason dried beef gravy and biscuits was what I wanted, didn't know if I would be able to or not but I succeeded. One biscuit with gravy! It didn't taste like I thought it would but it didn't taste bad so I guess I will just keep trying things.

    Congrats on finishing
    your RADS today. Hope you rang the bell if they had one, I finish next Friday so thats when I feel the future starts as far as food. Matt just today on the way home from RADS I usually always stop and get a Wendy Frosty early in rads it would be a large and I looked forward to it, now I usually get a small and it taste like well nothing, Cardboard seems to be the best way to describe most things so I agree with the others. I am pretty much just on survival mode, Boost etc trying to exceed 1000 calories a day at the minumum. I know I need more but some days its all I can do to get that down. So I just tell folks it all sucks, I even stopped for a HC Punch at Sonic, such pretty red color, ice a plenty just looked so good, tasted it and nothing sweat maybe, hard to understand but it is what it is. I just pray before my last breath on this earth I can enjoy food again, never was to wise with what I ate, but Lord knows I miss it so much and I know most all of us on this journey want the same thing. So as I finish Boost number 2 I will just keep on keepig on for now.
  • Sam999
    Sam999 Member Posts: 319 Member
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    ditto1 said:

    Congrats on finishing
    your RADS today. Hope you rang the bell if they had one, I finish next Friday so thats when I feel the future starts as far as food. Matt just today on the way home from RADS I usually always stop and get a Wendy Frosty early in rads it would be a large and I looked forward to it, now I usually get a small and it taste like well nothing, Cardboard seems to be the best way to describe most things so I agree with the others. I am pretty much just on survival mode, Boost etc trying to exceed 1000 calories a day at the minumum. I know I need more but some days its all I can do to get that down. So I just tell folks it all sucks, I even stopped for a HC Punch at Sonic, such pretty red color, ice a plenty just looked so good, tasted it and nothing sweat maybe, hard to understand but it is what it is. I just pray before my last breath on this earth I can enjoy food again, never was to wise with what I ate, but Lord knows I miss it so much and I know most all of us on this journey want the same thing. So as I finish Boost number 2 I will just keep on keepig on for now.

    Phrannie,
    Did you actually

    Phrannie,

    Did you actually drink the coke? It did not sting? Which one did you try diet or regular? I am dying to have a cup of soda.

    Sam
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Smell
    my taste's are gone, i feel like most of my senses like smell have helped a bunch. as long as it smells good, there are no hot spices along with some texture make it work for me. I call it "Make it Work"

    john
  • boardwalkgirl
    boardwalkgirl Member Posts: 269
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    I actually was hungry again
    I actually was hungry again last evening so I had to try. I had some packaged stroganoff flavored noodles(10 minutes to fix) and my husband had cooked some smoked sausage grillers for himself so I think why not??? I ate a whole griller, cut up in little pieces dipped in Tastefully simple mustard. I didn't get alot of taste other than the mustard but it didn't taste bad. I keep thinking I don't want to over do it but if it goes down ok, the sooner I can get rid of the feeding tube, right? I am only 15 lbs down from the beginning almost 9 weeks ago so I think that is pretty good. And actually I weighed more at that point than I ever had as I was eating everything I could think of while I could taste it. Now what to try today.....
  • Billie67
    Billie67 Member Posts: 898
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    I bought Coke to wash my tube with.....
    and found out that it tastes wonderful....just like coke!! I've tried Sprite, A & W Rootbeer, 7 UP, none of which tasted worth a damn....took a swig of Coke (which I never drank)...and it was so good, I drank the whole bottle :)

    p

    Coke
    Phrannie, coke was the only thing that tasted good to me too! And my speech therapist said that coke is what they tell patients to drink to help with the thick gunk too and also when water is too thin and we choke on it.
    Billie
  • Billie67
    Billie67 Member Posts: 898
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    Sam999 said:

    Phrannie,
    Did you actually

    Phrannie,

    Did you actually drink the coke? It did not sting? Which one did you try diet or regular? I am dying to have a cup of soda.

    Sam

    I used coke too
    For me the coke was very fizzy but didn't burn. I drank regular because that's what I would have chosen before rads anyway and let's face it, we need all the calories we can get!!! Good luck
    Billie
  • blackswampboy
    blackswampboy Member Posts: 341
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    scrambled eggs and dim sum
    getting adventurous, just tried eggies for the first time again.
    more like the memory of egg taste than real taste. but got two eggs down!
    and last night the kid brought me a sesame ball filled with sweet red bean from dim sum. some real taste! sweet works better than other tastes.