Help My Aunt...Repost for GYBOWMAN

Skiffin16
Skiffin16 Member Posts: 8,305 Member
in Head and Neck Cancer #1


Posts: 1
Joined: Apr 2013
Apr 09, 2013 - 5:43 pm


My aunt had cancer and had half of her tongue removed.  I suggested maybe I could give her some interesting soup recipes, since that might be easier.  She said the radiation burned her tongue and ruined her tastebuds.  She says I should imagine what it would be like never to taste anything again.  In her mind she can imagine, or remember, what something tastes like, but when she eats she's really disappointed.

Is there nothing to smelling the food, which I presume she still can?  Does that help at all?

It makes me want to cry, but I'd like to be more helpful.  Does anybody here have any insight on how I can be supportive?

 

Thanks for any insight

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome ...
    Welcome...

    Check the SuperThread, first post on the H&N Forum..., tons of good info, and some food recipes... One to try is called Magic Mineral Broth...

    Magic Mineral Broth

    Also, there are a few that have had their tongues partial or more removed and or reconstructed... They'll chime in I'm sure.

    Best,
    ~John
  • Ingrid K
    Ingrid K Member Posts: 813
    #3
    Skiffin16 said:

    Welcome ...
    Welcome...

    Check the SuperThread, first post on the H&N Forum..., tons of good info, and some food recipes... One to try is called Magic Mineral Broth...

    Magic Mineral Broth

    Also, there are a few that have had their tongues partial or more removed and or reconstructed... They'll chime in I'm sure.

    Best,
    ~John

    Tongue Cancer Survivor

    duhhhh (Duplicate Post)...on purpose

    And here I am. I had 75% of my tongue removed 2 years ago and I am doing very well.

    So tell your aunt, she will be on the other side of treatment soon, but that it does take time. And tell her that her taste buds have been fried, but they will come back (maybe not 100% of what they were but they will improve). Things may all taste extremely salty, or in my case everything (even water) tasted like dirty dish soap. That will pass.

    Definitely try the Magic Mineral Broth in the SuperThread. If you want to make up a batch for her, it can easily be frozen so she can have small portions available to reheat. Don't be alarmed if it tastes nasty...try something different until you find something she can actually taste. Try pudding, jello, chocolate milk, cheesecake, canned peaches in syrup, smoothies. For me it was easier to eat things that were icy cold or frozen...others needed everything at room temperature. She needs to experiment until she finds her "go to" food.

    Some things will smell bad...really bad. I had to leave the room sometimes... but not a big deal in the big picture.

    You don't mention if she has a feeding tube, but I am guessing not. She really needs to get enough calories in every day (around 2000) and plenty of water (a minimum of 64 ounces). She must keep swallowing regardless of having a tube or not. You do not want those swallowing muscles to stop functioning ....and they will.

    If your aunt would like to talk to me directly, please send me a private message under "CSN Email".

    Welcome.

    Ingrid

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Magic Mineral Broth...

    is wonderful....and amazingly, it was something I could taste (bland to those with good taste buds, but manna from the God's to me who had no taste....).  You didn't say when she finished radiation....I can tell you that it takes a while for taste to return....none in the first 3 months, then a few months of only being able to taste the first couple of bites....and gradually by degrees it begins to stay longer, for more bites.  I'm 10 months out of rads, and am up to about the first 8-10 bites having taste!!  That is a big improvement so I'm confident it will keep on getting better. (see what I mean by gradual?  I'm improving 1 bite a month....LOL).

    I could taste shrimp early on....also my sister would make me cheese and cauliflower soup....I could taste that a little, and found it very satisfying. 

    If her tongue is burning, get some L-glutamine powder from the health food store, mix with water and just hold in the mouth and then swallow....it's an amino acid and helps heal things up.  I still run into things that burn....so that too is slow to totally disappear.

    p

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    phrannie51 said:

    Magic Mineral Broth...

    is wonderful....and amazingly, it was something I could taste (bland to those with good taste buds, but manna from the God's to me who had no taste....).  You didn't say when she finished radiation....I can tell you that it takes a while for taste to return....none in the first 3 months, then a few months of only being able to taste the first couple of bites....and gradually by degrees it begins to stay longer, for more bites.  I'm 10 months out of rads, and am up to about the first 8-10 bites having taste!!  That is a big improvement so I'm confident it will keep on getting better. (see what I mean by gradual?  I'm improving 1 bite a month....LOL).

    I could taste shrimp early on....also my sister would make me cheese and cauliflower soup....I could taste that a little, and found it very satisfying. 

    If her tongue is burning, get some L-glutamine powder from the health food store, mix with water and just hold in the mouth and then swallow....it's an amino acid and helps heal things up.  I still run into things that burn....so that too is slow to totally disappear.

    p

    Things to try

    Might try eggs, any which way, or pancakes with plenty of syrup. Milk helped me get allot of things down. When taste starts to return try a buffet to see what works and what doesn't. Keep trying!

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