I know this is trivial, but...

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I really miss eating like I used to. With the holidays here, I miss eating chocolate, cookies, the wonderful warm feeling of a hot cup of coffee. Anything sweet instantly dries out my tongue.

Sure, I'm alive. But am I really living?

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  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    edited December 2016 #2
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    I hear you

    Steve, sorry that you are doing this over the Holidays, I did the same many years ago. Just rmember what each thing tasted like and think about when you are finished that you will indulge once again. No easy task at the moment, but you will get thru this. At Thanksgiving and Christmas, I ate cranberry sauce, potatoes with turkey gravy. 

    My Best to You and Everyone Here

  • Grandmax4
    Grandmax4 Member Posts: 723
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    You will

    Christmas 2011, I sat at our family Christmas, the smells of the potluck drifting into the room, all around family eating, laughing, having a good time...below me, on the floor sat my large glass of watered down lemonade, it was a little over 1 month since my surgery to remove my cancerous epiglottis. Now, flash to Christmas 2012, I had my first bite of real food, a pork roast my daughter had fixed, it was glorious~~~ you will eat again, it just takes time. Merry Christmas, you are alive, and I promise the New Year will be better.

     

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Missing out on Christmas dinner...

    was not fun.  I was craving any food....ALL food (anything but Boost)....I used to watch the Food Channel and drool imaginary drool, and say to myself..."when this is over I'm going to have some of that...."....no matter what was on, I was going to have some of everything.  My taste buds didn't come back for 3 years....ah....but they DID come back!  So yeah....it's worth waiting for.  Christmas is once a year....by this time next year you'll be diving in.

    p

    PS....as long as you're on this side of the dirt, you are REALLY living!!

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    edited December 2016 #5
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    Taste

    Amazing how for granted we take eating to be.  Like you, when I lost my taste buds, nothing was good anymore.  I also realized just how many food commercials there are on the TV.  When I couldn't even swallow water and was starving, all I saw was pizza and other tasty food commercials.  It took many months, almost a year to get back to tasting food the way it should taste.  Even now, with new taste buds, I cannot eat certain foods anymore.  It's like my mouth is raw with sensation.  Used to love eating jalepeno peppers with food but now it hurts so bad I just can't tolerate it.

    Be patient like Phrannie said.  Mine came back fairly fast compared to others here.  My late father in law had SCC of the mouth and it took a minimun of 2 years to get his back.  He always complained that his beer tasted like salt water.  But it didn't stop him from drinking it!

    Once you're back to normal you'll appreciate the food all that much more.

    Merry Christmas!

    Tom

  • swopoe
    swopoe Member Posts: 492
    edited December 2016 #6
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    That is how it was last year

    That is how it was last year for my husband. He had surgery right before his birthday, and then treatment right over Thanksgiving and Christmas. In fact, he went to solely tube feeding on Christmas Eve. It was so rough for him. But things got better. This year, he is eating anything he wants. And next holiday season will be better for you too. 2017 will be your year!

  • cardoza33
    cardoza33 Member Posts: 81
    edited December 2016 #7
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    Last Christmas I don't even

    Last Christmas I don't even remember except puking from Chemo.  I would not eat anything. 1 year later, I am truly enjoying each and every moment.  You wil lbe back my friend.  You will be back and it will be all that much more enjoyable.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited December 2016 #8
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    eating is over rated in H&N circles

    Steven,

    Been there, tasted (not) that.

    My main taste no taste road took 7 months, but there were successes.  I could not get mad or be upset since most foods were so repulsive why would I want to eat them.  Try, try, try I did, all the time.  I would throw salt or sugar in my mouth to see if I detected anything.

    I even gave the miracle fruit a try and was pleasantly surprised.  I would have an orange all peeled and ready to eat, take a few miracle fruit tablets, let them dissolve as directed and pop in the orange slices for a brief moment of flavor.

    When your list of things to try is exhausted, then you can be bummed. Until then, good luck!

    Matt

  • yensid683
    yensid683 Member Posts: 349
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    It's not trivial

    I had stage IV-a base of tongue with involvement of the left cervical lymph nodes, induction chemo, 33 rads and months of recovery.  My sense of taste came back slowly, at times I dispaired of ever eating 'real' food again but I kept at it, trying the foods I had previously enjoyed and found that in the earlier (first 6 months) some things were impossible to tolerate.  Ice cream, crusty bread, dense meats like steak, chops, roast beef, anything with a sour component, anything with a strong taste.

    My wife observed that it was if I had brand new, baby taste buds so I started with blander and easier to chew and swallow foods and it worked (after a fashion).  It was a very long and slow process as I taught myself to eat, trying old favorites, new items and methods of actually swallowing.

    Saliva loss is my biggest issue though I've learned how to sip just the right amount of liquid (water, milk, hot cocoa etc.) while having something.  I've been able to eat things that amaze me at times, popcorn at the movies (almost a full bottle of water to finish the medium bucket) and there are some that disappoint.  Before I was diagnosed my favorite candies were sour, Lemon Heads, Sweetarts, Smarties etc., and sadly they all are just too intense to even attempt, but on the whole, I did get back to being able to eat just about anything.

    I do so miss being able to simply pop something into my mouth without having a water bottle handy, but I am still here, some 4-1/2 years since the end of treatments.

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited December 2016 #10
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    Yensid has a very big point....

    druring treatment, and after....my motto was "the blander the better"....the reason?  I could taste bland.  That's why cooked veggies are so good compared to fruits (or pretty much anything else) for a while after treatment.  They're squishy, too...making them easier to swallow....For Christmas dinner, eat sweet potatoes (even if you've never liked them before) with just butter on them....mashed spuds with gravy....green bean casserole....there will be things you can't taste or even like...for sure skip the fruit salad.

    It's only one Xmas sacreficed for many more Xmas's in the future!!!

    p

    As Matt says....food is over-rated....eating is over-rated.  You're eating to live now, not living to eat....it's a decent trade off in the long run.

  • slk2015
    slk2015 Member Posts: 54
    edited December 2016 #11
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    Missing holiday foods

    Thanksgiving last year I had no top teeth.  This year, I had dentures top and bottom and got to eat a tuna fish sandwich, as is our tradition.  It sounds weird, but it was actually very exciting to me.  I could even put pickles in it--first time in over a year I ate pickles in anything. 

    I’m at 21 months past treatment and food will still taste fine one day and horrible the next.  I just save the food for another day and try something else, then go back to first food.  Since I still have not mastered dentures, I’m looking forward to the time I can eat pizza again.  I miss some of the food tastes, but if you just keep plodding away, the tastes do seem to come back at least part of the time. 

    Being diabetic, I often had to skip holiday treats, but there was a bright side—I had no choice but to eat four times a day whether the food tasted good or not.  That’s how I learned that things can change day to day and not to give up.  

    Thanksgiving last year I no top teeth.  This year, I had dentures top and bottom and got to eat a tuna fish sandwich, as is our tradition.  It sounds weird, but it was actually very exciting to me. 

    I’m at 21 months and food will still taste fine one day and horrible the next.  I just save the food for another day and try something else, then go back to first food.  Since I still have not mastered dentures, I’m looking forward to the time I can eat pizza again.  I miss some of the foods, but if you just keep plodding away, the tastes do seem to come back at least part of the time. 

    Being diabetic, I often had to skip holiday treats, but there was a bright side—I had no choice but to eat whether the food tasted good or not.  That’s how I learned that things can change day to day and not to give up. 

  • Bart T
    Bart T Member Posts: 62 Member
    edited December 2016 #12
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    NOT TRIVIAL, BUT LESS IMPORTANT

    It’s only trivial when it’s the other guy. I’m about 4 ½ years post treatment for tongue cancer. Hemigossectomy followed by radiation and bit of chemo. Hopefully your food difficulties are temporary and if they are, just look forward to better days. My food issues have stayed with me and if that happens, you’ll learn to accept it as your new normal. My mouth and tongue remain extremely sensitive. Even moderately spicy foods burn. Tart or acidic foods remain on my no fly list. A shot of any kind of liquor might as well be a fireball. Anything crisp or nutty has the texture of broken glass. I can only enjoy about 20% of what I used to enjoy, and even after all this time I still very much miss the other 80%. And sometimes, I even take a few minutes out of a busy day and feel sorry for myself.

    I used to and still enjoy cooking, but now more for others than myself. Some years back, before I even heard of tongue cancer, I remember asking one of my daughters if she was coming for Sunday dinner. She “said I don’t know, what are you cooking”? I told her very sternly if she needed to know what I was cooking, she was missing the whole point.

    That applies today more than ever. This year, just as I have done for recent Christmas dinners, I’ll pick around the various foods and focus on the 20% that I can still enjoy. But whether it’s 50% or 1% or 0%, the most important thing is not what’s on the table, but who’s around the table. For me that “who”, among others, includes three grandchildren that weren’t born when my journey started. The true blessing of the season is the people it brings together, not what we put in our stomachs. 

    Stay focused on the bigger picture, and to you and all my fellow warriors, my best wishes for recovery and beyond.  

  • stevenpepe
    stevenpepe Member Posts: 234
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    Thanks for the encouragement.

    Thanks for the encouragement. I'm 20 sessions of 35 in today. Side effects are creeping in. The right side of my face is very red now. Soon, it will be burned and turn black. What a sight that will be. Not sure if I can return to work looking like that, even if the fatigue is less this time. I can hide my neck, not my face. Mouth is getting drier making eating even more challenging. I really have to watch my weight now. Not enjoying this at all.

  • RottiesMom
    RottiesMom Member Posts: 167
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    Continued prayers

    Prayers continue you will soon be done and feeling better!

    Joanne

  • rainbowunicorn
    rainbowunicorn Member Posts: 1
    edited December 2016 #15
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    husband going through the same thing

    My husband just had his 20th radiation treatment out of 35. He is also getting chemo every 3 weeks. This week he had his second round of chemo and it has been really rough. He can't taste much of anything anymore. And now with this round of chemo he has a hard time keeping anything down. Sounds like you will be finished nearly the same time as my husband. I hate to wish time away but in this case I cannot help it!