Trying to Eat Again - Any Advice Requested from those who have been there

susanmdunn
susanmdunn Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
Here is a message my husband who is in recovery posted on another board. I am helping him by trying to get more replies:

Hi folks,
>
> I'm having trouble eating other than through my stomach tube. My
> radiation/chemo ended April 18th for my Stage 3 basal tongue cancer,
> and the cancer is gone, at least for the time being.
>
> I can eat some things now, but after the first three bites or so, it
> becomes a chore. The taste goes away, a feeling of revulsion grows on
> me, and it seems to take forever to chew and get things down. I can't
> seem to find desirable foods. Meanwhile, I'm getting sick of the
> bagged liquids for the stomach tube, much as I love the convenience.
>
> I'd be interested in hearing from others how they reached the point of
> feeling confident they could get rid of their stomach tube and survive
> by eating alone. Also, how long this was from when treatment ended.
>
Thanks, from JEFF

Comments

  • WillieP
    WillieP Member Posts: 6
    #2
    Dear Jeff,

    I heard you. I didn't use PEG tube during the radiation treatment so I was trying to showel down the Ensure in my throat eventhough it hurt like crazy. Anyway, I thinnk because of that was able to regain my ability to eat faster than I thought. Anyway, yes the dry mouth is devastating and it takes months to get back to normal. We need saliva to bring the taste of the food throughout out mouth and enjoy it when earting. I still have this kind of problem because the dry food is terrible, couldn't swallow because so dry, not good taste as usýal..etc.. I switch to soupy food, try to eat other with gravy etc... Anyway, when your mouth is dry, go ahead chew some sugar free gum, it help produce a lot of saliva. Try watermelon flavor. Maybe chew it some time before meal, drink some lemonade, orange juice during the meal too. It takes time. hang in there. I use to love food, eat out, enjoy good food before the cancer treatment, but after months of treatment and live on Ensure I learn that we're just like the babies who need to take one thing at a time and ejoy it from gaining the ability to eat to enjoying whatever we did before the cancer treatment again.

    Take care

    Wilie
  • Merma
    Merma Member Posts: 4
    #3
    Unfortunately, it's the radiation that's done this to your taste buds. Fortunately they will come back, but everyone is different, so the doctors may give a window, but it's up to your own body when you'll get your taste back. I just finished 6 weeks of radiation in my mouth and everything that seems denser, like pasta, just tastes like dirt. Easiest for me is Ensure, yogurt, pudding, jello. Just simple foods. Basically, you have to be patient and keep testing foods periodically to find out what tastes good. It doesn't last forever! Hope this helps.
  • reinersnelson
    reinersnelson Member Posts: 1
    #4
    From the Head and Neck Cancer Cook Book - this works for my husband - he has gone through this twice and just finished his second round of radiation.

    Whisk two eggs really well. Add one 14oz can of chicken stock (only chicken will work) and whisk well. Pour evenly into three ceramic mugs. Place them in a pot with water up to at least one inch and turn heat on high. When the water boils turn heat to low and simmer until set (15-20 minutes.)

    Let one cool until it is a comfortable temperature to eat. To reheat the others, I microwave them for 50 seconds and let them sit for a minute.

    This sounds odd, but it doesn't coat the tongue, isn't strong flavored, goes down easily and is a good contrast to the sweet cans-o-meal that my husband was ready to throw across the kitchen.

    I also "doctor" the Ensure and ProSure cans in the blender. We add canola oil for calories and then fresh peaches (only a half) or ovaltine, peanut butter, instant coffee, ice creams - we have tried a variety of things. Some work better than others. Bananas were a big yes one day and then a big no the next.

    You can only try. And a few bites is a few more than none. Congratulations on the few!!

    Looking forward,

    dnr
  • Sdawe
    Sdawe Member Posts: 14
    #5
    Susanmdunn, My husband had the same cancer and I can tell you that he struggled for 5 months and mostly used the tube. The most important thing for him was to maintain his nutrition and the only way to do that was with tube food. About 30 days before the tube was removed he started to only use liquid food ( high in calories) and that worked. Google on a product called Scandishake that was what helped him maintain his weight. Until his taste came back (6-7 months in - he says 12 months for 90%) could he really start to have the desire to eat and he still is improving today....2 years later. Hope this helps...he said to email him if you have quesitons.....sdawe@dc.rr.com.
  • ScottL90803
    ScottL90803 Member Posts: 2
    #6
    Hi Jeff & Susan,
    I was on my feeding tube for three and a half months after my treatment ended. My medical team suggested I keep it until I could eat orally for a least two weeks without loosing any weight.

    I started by drinking 3-4 smoothies a day. I then added mild chili and creamy soup. Anything with more than one consistancy (like vegetable soup will be challenging for a while.

    My suggestion is to go slow and experiment with different foods. I can attest that patience will be key. I'm now nine months into recovery and still have to eat liquidy things, but its getting better. I really miss steak, pizza and burgers.

    Good luck,
    Scott

Discussion Boards