adjusting to change

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mokus
mokus Member Posts: 63 Member
in Head and Neck Cancer #1

Had staples removed from neck with no problem.  PEG finally removed without hassle of any type of swallow test or verification.   What I am dealing with now is that, although I do basically have taste back, my saliva output/creation is so drastically diminished that I have to wash everything down with some liquid, which in turn washes out whatever taste I was enjoying.  I have to take smaller bites because even though I can swallow everything, some things do tend to seem to get stuck.  Smaller bites is leading to smaller meals overall, which is okay because my stomach capacity has also decreased, so this former overweight glutton is finally getting to enjoy the benefits of a 100 pound lighter body.  My new eating reality will help me maintain now a more healthy weight, which is just A-ok stupendous to me..

Eh, the shaving of the face.  Since the surgery, I am unable to shave a small portion of my neck.  (their incision being perilously close to my jugular.  Between the small area of my neck on both sides where hair has stopped growing because of the radiation treatment, and the avoidance of the incision proximal, I am going slightly bonkers.  Military discipline reigning supreme, even 30 years post discharge from military, I cannot stand facial hair (on myself),  so having problem adjusting mentally to looking like a mutant yeti.

 

But, I AM ALIVE!!!

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    new normal

    Mokus,

    You have described my eating exactly as it is and I am four years post.

    I don’t have to worry about shaving my neck is virtually no hair grows below my chin line.

    You sound like you are in good spirits, I hope that is so

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    Your taste buds will continue to...

    improve as time goes by....I swear mine are still improving after 3 years from my first treatment, so don't decide at a year out that this is as good as it gets cuz that isn't true.  Saliva is a little iffier....you'll get more than you have now for sure, but chances are it won't all come back.  The small bites, and chewing 50 times seems to be part of many lives here.  You're enjoying your new weight, so that is good, too.  The slower you eat, the faster you fill up.

    As for the shaving, I can only offer what I've heard on here....no first hand experience...but I'm wondering if an electric razor might work? 

    p

  • oldvamp
    oldvamp Member Posts: 9
    #4
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    Keep the water flowing

    Like Matt said, get used to washing every bite down cause that's pretty much the way it has to be for now , and maybe forever.  sounds like you have a good attitude.  To heck with Weight Watchers!  (Although I'm sure you could think of a lot less traumatic ways to drop those extra pounds.)

    The "small bites" regime is pretty much inescapable for me.  I just can't slide big boluses of anything down my poor old recently-scorched gullet. (I'm between 5 and 6 months out and my swallowing still leaves a lot to be desired.)  I'm accepting the fact that I may never be the big gulp kind of mouth stuffer that I was in my former life. 

    You may have noticed that most starchy foods can resemble taking a big bite of paste and that beef, chicken or pork have a definite tendancy to mimic cardboard...but I'm praying that it won't be that case forever (and if it is, like you so eloquently stated, at least I'm alive.)  The best part is that your taste buds are still working and that's a big plus.  Some of mine are starting to come back but it's a gradual process.

    Condiments, sauces and gravies can be lifesavers.  Don't let it get you down, keep experimenting and you'll get by just fine!

    Michael

  • yensid683
    yensid683 Member Posts: 349
    #5
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    Leaves - not roots

    as in "looking at the leaves of the trees instead of staring up at their roots...."

    You have exactly the same thing that I had when I was post rads.  Saliva and sense of taste disappeared from about day 4 of rads and continued for some time.  Sense of taste recovered in about 5 months, saliva very gradually returned and now, some 4 years post diagnosis, it is about 75% of what it was.

    When I first started trying to eat real food, I had the same problem, dry as toast, diminished taste and if you added enough liquid to be able to swallow, the bolus of food became somewhat disgusting in texture and washed out in taste.

    Give it time, your sense of taste will get stronger and you will generate a bit more saliva, but accept that it may not come all the way back.

    You might want to try a mechanically altered diet.  I found then that ground meat (burgers, hot dogs, spam) were easier to chew and easier to swallow.  Over time I learned to always have water with me when I eat, room temperature works best.

    There are some foods that I can eat without needing extra liquid, cereal with milk. pasta, sticky rice, juicy meats (ribs are outstanding for some reason) and fresh vegetables and fruits, though some that have strongly sour flavors are very difficult to tolerate

    it will get better, you have to let yourself heal

    Luck and prayers

  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
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    Hi

    I believe Matt said it all by saying New Normal you. You will in time learn to deal with these new problems then they will not be so big problems anymore.

     

    Tim                 

  • SASH
    SASH Member Posts: 421 Member
    #7
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    A possible tip on shaving

    I hate shaving and always have.  So I normally let my beard grow a week or so until the itch just gets the better of me and I have to get rid of the hair.  What I found is using a beard trimmer to get the hairs short enough that I don't have to shave.

  • oldvampswyfe
    oldvampswyfe Member Posts: 10
    #8
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    Congrats

    on surviving, getting the PEG out.  WOW!! being able to taste (now that is awesome) You are doing wonderful!!

    A simple suggestion is to go to a barber for a shave.  I know as a woman we like to pamper ourselves with pedicures and / or a shampoo.  I don't think its wrong for a man to do the same thing.  You have been through a lot and maybe that steak isn't in the picture right now, but you deserve to be pampered a bit.  Just tell the barber the problem and if he or she is a professional, you will walk out thinking you are in heaven.  This is just a suggestionThe

    And as far as a Yeti goes...hmmmm, never seen a mutant yeti.  I would love to see one. 

    Eventually, you will get back to the new you.  Around here we call it bc and ac (before cancer and after cancer).  The big question is, "What is normal?"

    oldvamp takes 2 hours to eat..slow and steady like a tortoise.  He can't afford to loose weight, in fact we are trying to get it put back on..darn I wish I had that problem.  He knows his limitations..here again, you are doing GREAT!! like Tony the Tiger says..keep up the good work

     

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