The return of normal

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AnotherSurvivor
AnotherSurvivor Member Posts: 383 Member
in Head and Neck Cancer #1

Like many here who have experienced treatment (as patient or as caregiver) I have gone thru much change on taste and drymouth.  I am a bit less than a year out from last treatment, and today, suddenly and unexpectedly, I awoke to find my taste clear and full, and I am enjoying at least a day of regular quantity and quality of saliva.  I have no clue as to why it has happened now, and nothing I have done for treatment is different from what most of us have been instructed to do - salt and soda rinse, high floride gel, avoiding/minimizing things that dehydrate like coffee and alcohol.  It just took its own time to heal. 

Several times I have reached plateaus where I assumed recovery had stopped and a new normal had started, and I have been wrong every time. So, basically, don't give up hope.  

Comments

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    edited December 2017 #2
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    Awesome News

    It is always so refreshing to read of a positive event in someone's life. Mine returned fairly quickly only because I didn't have the full dose of rads.  My father in law had SCC and did so well with the radiation treatments that they gave him 10 more. Although I'm not sure how many it was exactly.  His taste came back after 2 full years. This was back in the 80's when rads were a lot worse than today's version.

    Hope you continue to recover nicely and that your new normal will be sort of close to what it was before.

  • Bossylittlesister
    Bossylittlesister Member Posts: 1
    #3
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    Depression

    hi-  I have 9 more radiation treatments, and 1 chemo.  I just had a feeding tube placed last week as I could not maintain weight, but kept losing.  I have virtually no taste left.  I had my left tonsil remover first, with some lymph nodes.  When that did not get rid of the cancer, is when I started the 6 weeks of radiation and 6 chemo treatment.  So why am I depressed?  My main sources of joyful activities have been cooking, eating, and exercising.  It seems from much that I have read that the enjoLyme this of eating may be largely gone.  So how fun will cooking be?  And I’ve had no energy to exercise.  I am so used to being the caregiver.  This is uncharted territory for me.  Usually joyful and hopeful in God’s working in my life, I have sunk to a new low.  Anyone have any hope for a return to any enjoyment of eating/eating?

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    tastes good

    AS,

    For me, it was 7 months and then just like you said “a switch was flipped” and eating returned to a very good new normal.  It takes me (on average) 2 glasses of water, or tea, or milk to get through a meal.  It was a happy moment for me and  I am glad  you made it  too.

    Matt

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #5
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    Bossylittlesister said:

    Depression

    hi-  I have 9 more radiation treatments, and 1 chemo.  I just had a feeding tube placed last week as I could not maintain weight, but kept losing.  I have virtually no taste left.  I had my left tonsil remover first, with some lymph nodes.  When that did not get rid of the cancer, is when I started the 6 weeks of radiation and 6 chemo treatment.  So why am I depressed?  My main sources of joyful activities have been cooking, eating, and exercising.  It seems from much that I have read that the enjoLyme this of eating may be largely gone.  So how fun will cooking be?  And I’ve had no energy to exercise.  I am so used to being the caregiver.  This is uncharted territory for me.  Usually joyful and hopeful in God’s working in my life, I have sunk to a new low.  Anyone have any hope for a return to any enjoyment of eating/eating?

    Bossylittlesister,

    Bossylittlesister,

    Welcome to the H&N forum, sorry that you are here, but chances are you will get back to a good eating and cooking place.  Do not borrow trouble.  Life may seem (and  is) cruel, but there is no way you can know where the taste buds will end up until it slaps you in the face and says

    “this is it”.  Some H&N members are real show-offs and life returns to normal before their first post-scan.  I wasn’t one of them. Most of us do return to a good place, you should end up there too, a place where there is cooking and  eating galore (be it adjusted for any post treatment treats which are randomly dropped on us, maybe not random, but dropped on us for sure).

    Matt

  • JBBW
    JBBW Member Posts: 30
    edited December 2017 #6
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    Bossylittlesister said:

    Depression

    hi-  I have 9 more radiation treatments, and 1 chemo.  I just had a feeding tube placed last week as I could not maintain weight, but kept losing.  I have virtually no taste left.  I had my left tonsil remover first, with some lymph nodes.  When that did not get rid of the cancer, is when I started the 6 weeks of radiation and 6 chemo treatment.  So why am I depressed?  My main sources of joyful activities have been cooking, eating, and exercising.  It seems from much that I have read that the enjoLyme this of eating may be largely gone.  So how fun will cooking be?  And I’ve had no energy to exercise.  I am so used to being the caregiver.  This is uncharted territory for me.  Usually joyful and hopeful in God’s working in my life, I have sunk to a new low.  Anyone have any hope for a return to any enjoyment of eating/eating?

    I understand

    I never realized how much I loved eating until I lost my sense of taste and eating actually hurt.  I lost my sense of smell years ago so where most people get a preview of their food, I actually got that rush when I took the first bite.  Sometimes I was a finicky eater but in the last few years I started liking a wider variety of foods.  It was all taken away last summer.  That first bite feeling has turned against me.  I bite into a chocolate or some corn, or a steak and get almost nothing out of it.  Wow, betrayed by food.  It's slowly coming back.  It will just take time.

    I the meanwhile... I enjoy videos of puppies and kittens.  My nieces and nephews have children of their own I can enjoy watching.  I love reading so much.  I hope you can find other things you like.  Don't take anything for granted. 

  • Andy13460
    Andy13460 Member Posts: 115
    #7
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    The return of normal

    Ive fought this thing all the way and on Wednesday I will be 23 weeks out of treatment. Taste and saliva is about 100% now, slight mucus in the throat first thing, Energy levels, im running 60 to 70 miles a week ran my first marathon of the year 2 weeks ago in 3:30. Only permenant things are a slight loss of hearing and my neck gets a bit sore at the back at the radiation entry points. I can remember Michael Douglas saying red ine tasted different after for me it dosent. All I can do now is hope for clear checkups so at nearly 58 yearsof age I'm not much different than before.

  • christine2080
    christine2080 Member Posts: 71
    #8
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    Andy13460 said:

    The return of normal

    Ive fought this thing all the way and on Wednesday I will be 23 weeks out of treatment. Taste and saliva is about 100% now, slight mucus in the throat first thing, Energy levels, im running 60 to 70 miles a week ran my first marathon of the year 2 weeks ago in 3:30. Only permenant things are a slight loss of hearing and my neck gets a bit sore at the back at the radiation entry points. I can remember Michael Douglas saying red ine tasted different after for me it dosent. All I can do now is hope for clear checkups so at nearly 58 yearsof age I'm not much different than before.

    I'm very happy for you!

    AnotherSurvivor and Andy, I love hearing that taste and saliva are returning! My husband is on week 2 of recovery and is improving every day although taste and appetite have not improved. His neck is healing and his energy level is much better. It's encouraging to know there is light at the end of the tunnel even if the tunnel is longer for some!

  • rsp
    rsp Member Posts: 103 Member
    #9
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    Good for you!

    So glad to hear about your sudden ability to taste things!  My husband is also approaching the "one year" out mark, but he is still struggling with his taste and swallow.

    I have followed your journey and enjoyed your humor as you reported your struggles this last year.  It gives hope (even at one year post treatment) that there are still possibilities for change and improvement.

    I hope you are savoring every bite of whatever it is that you love to eat, and I pray that your taste buds continue to surprise you!

    Enjoy everything your wife will be making for the Holidays!

    So happy for you!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #10
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    rsp said:

    Good for you!

    So glad to hear about your sudden ability to taste things!  My husband is also approaching the "one year" out mark, but he is still struggling with his taste and swallow.

    I have followed your journey and enjoyed your humor as you reported your struggles this last year.  It gives hope (even at one year post treatment) that there are still possibilities for change and improvement.

    I hope you are savoring every bite of whatever it is that you love to eat, and I pray that your taste buds continue to surprise you!

    Enjoy everything your wife will be making for the Holidays!

    So happy for you!

    Thanks.  This doesn't make

    Thanks.  This doesn't make things easy.  I wanted to lose weight for decades, and treatment brought me down from high-end overweight on the BMI index (one pound below obese), to high-end normal weight on the same index (225 -> 185).  I blew through the entire Overweight category on the way down in a very few weeks.  So, no wiggle room - I have maybe a pound on any given day between me and overweight. I burned my ships (metaphorically speaking) and gave all my old size 38 waist clothing to Goodwill - last week.   Said wife is a FoodNetwork junkie of the 'you gotta taste this' variety.  I maintain current weight if my caloric intake is between 2,200 and 2,500 calories per day (that's empirical).  Tomorrow I go off blood thinners, which means alcohol is potentially back on the menu.  DO YOU KNOW HOW MANY CALORIES ARE IN A GLASS OF WINE.  And single malt scotch is worse, I haven't even checked on brandy.  Cancer is such a sick and twisted disease.

     

  • Klingels
    Klingels Member Posts: 78
    edited December 2017 #11
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    5 months post treatment

    My husband eats very slowly, but says his taste is about 75% of what it was. His calorie intake is still too low. Every time he sees the doctor he has lost another pound.

  • OKCnative
    OKCnative Member Posts: 326 Member
    #12
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    Bossylittlesister said:

    Depression

    hi-  I have 9 more radiation treatments, and 1 chemo.  I just had a feeding tube placed last week as I could not maintain weight, but kept losing.  I have virtually no taste left.  I had my left tonsil remover first, with some lymph nodes.  When that did not get rid of the cancer, is when I started the 6 weeks of radiation and 6 chemo treatment.  So why am I depressed?  My main sources of joyful activities have been cooking, eating, and exercising.  It seems from much that I have read that the enjoLyme this of eating may be largely gone.  So how fun will cooking be?  And I’ve had no energy to exercise.  I am so used to being the caregiver.  This is uncharted territory for me.  Usually joyful and hopeful in God’s working in my life, I have sunk to a new low.  Anyone have any hope for a return to any enjoyment of eating/eating?

    Don't let your current

    Don't let your current condition depress you. With 9 more rads to go, you can almost count on your symptoms getting worse before they get better. That's not to depress you, that's just a reality check. So, tell yourself "this is normal, thousands of people have already trudged through this path and came out happy and healthy on the other-side." I was just a couple of pounds from being forced to get a feeding tube. I went from about 195 to 159. I had to flat out refuse to get a tube and make a deal with the doc that if i dropped to 155 then I would give in. Fortunately that never happened. 

    I thought I lost my taste, but realized it was just masked by the absolutely nasty taste of the phlegm (flem) I was over producing. I too love cooking, eating and exercise - while I enjoy the taste of food, I more prefer the social aspect and the time it allows me to spend with friends and family. Exercise is also a big part of my life. 

    All of those things stopped about 5 weeks into treatment and didn't return until about 6-10 weeks post treatment.

    The best part is that many people (myself included) report that changes/improvements are not gradual - that are sudden and overnight. This makes it exciting  because you never know when you'll clear that next hurdle.

    Hang in there and know that many people have already taken your path and what you are experiencing is 100% normal.

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