Learning To Eat Again For Dummies

rmackenzie
rmackenzie Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
I finished my 6 Chemo, 36 radiation treatments for Neck Cancer 10 months ago. They could not find the Primary in my neck so they did the whole neck area both sides. the last 12 Radiation treatments where twice a day.

I'm still stuck on the Feeder overnight from 8 pm - 6 am and now forcing myself to drink one Ensure during the day.
I know I have to get off the feeder and have set a goal that will take no longer than 60 days.

My problem is Four fold:

Taste: I still have very little taste, and when I can taste something, it tastes different, not good.

Dry mouth: Food sticks to my mouth, my tongue looks like something from a horror movie from sticking to my teeth, I asked all of my specialist at Lahey and not one could give me medicine for this, it's hard to believe in this day and age. The over the counter Dry mouth items, just don't work for me.

Difficulty swallowing: Things do get caught when i try to swallow, it's such a kick in the Butt to get it out, I have cleared all my Food Modification Labs except for Pills.

Mental: I had a specialist tell me my Throat is now healed, he thought i was reluctant to get off of the feeder, that got me going, I need to nip this and get past the fear. he did state he never had items caught somewhere down his throat and doesn't know what it's like but I have to move on.

I guess it feels easier to just lie down and be fed overnight.

I wish someone wrote a book named "Learning how to eat again for Dummies" and it would state Do this first for one day/week, then do this second etc. It would have all the easy recipes etc.

I miss Big Mac's (Just One), Super Steakbombs, Outback Shrimp on the Barbie, Veal Pica etc. The Social part of eating out with your friends and family, having a beer etc.

I miss my old life and need/want to move forward.
I'm down 76 pounds and need to get going, my energy is low and my spirit is a little broken, not good for an x-Marine Viet Nam Veteran.

Any ideas would be greatly appreciated

Comments

  • ljoy
    ljoy Member Posts: 94
    #2
    My doctor prescribe Evoxac 30 mg for my dry mouth. While it is not perfect it has helped a lot. I finished treatment for tonsil cancer in Sept. 07. The longer I go the better my siliva gets. I eat a lot of pasta, fish, moist cassaroles and always have a bottle of water when I eat to supplement the saliva. I started with poached eggs, jello, bannas with milk and sugar. Hope this helps.
  • BugHunter
    BugHunter Member Posts: 152
    #3
    Hi Mac,

    I used a product at night called oral balance, it kept my tounge from turing into carpet at night, I am sure it would do some good. As for the feeding tube it can and has become an addiction for many of us, myself included! I ended up having them pull my tube before I thought it was time and had to force myself to start eating again. This is a common problem so dont feel alone in that boat!
    (and as for being a detached Marine........please dont make me show this post to my Nephew who is do across the parade grounds at P.I. on 3/14/2008 now go eat some Jello and Semper Fi)
  • TereB
    TereB Member Posts: 286 Member
    #4
    I've never been on a feeder so I cannot help with that.

    Taste usually disappears during radiation treatment in head/neck area. It will come back, slowly. To me food tasted like cardboard but I tried to eat it because good nutrition is important. To supplement what little I ate, I drank Boost (I like it better than Ensure), I drank four bottles a day which is what I need for my weight. It goes down easier when it is cold.

    I will have dry mouth forever. Don't know if you tried all the over-the-counter products for dry mouth. Biotin has gum, sprays, etc. and a gel that you spread over your tongue and it helped me. I don't use it much now but I usually have some water or juice with me.

    A friend of mine had some therapy after treatment when she had difficulty swallowing. Don't know the name but they basically teach you to swallow again and teach you some exercises to practice at home. Ask your doctor.

    Try to eat soft and wet things, soups or such and you can also put them in the blender so make it easier to swallow.

    I don't know how long ago you finished with radiation, but it usually takes a few months to recover completely.

    Don't lose hope, perhaps not long from now you will be able to have your Big Mac. Take one day at a time. If you are not eating much, at least take Ensure or Boost, several a day, depending on your weight because good nutrition is very important for your healing.

    Check with your dentist about the dry mouth. Some have experience with cancer patients and know what helps with the dry mouth.

    Take care and Semper Fi. I'm the wife of an ex-marine.
  • BugHunter
    BugHunter Member Posts: 152
    #5
    TereB said:

    I've never been on a feeder so I cannot help with that.

    Taste usually disappears during radiation treatment in head/neck area. It will come back, slowly. To me food tasted like cardboard but I tried to eat it because good nutrition is important. To supplement what little I ate, I drank Boost (I like it better than Ensure), I drank four bottles a day which is what I need for my weight. It goes down easier when it is cold.

    I will have dry mouth forever. Don't know if you tried all the over-the-counter products for dry mouth. Biotin has gum, sprays, etc. and a gel that you spread over your tongue and it helped me. I don't use it much now but I usually have some water or juice with me.

    A friend of mine had some therapy after treatment when she had difficulty swallowing. Don't know the name but they basically teach you to swallow again and teach you some exercises to practice at home. Ask your doctor.

    Try to eat soft and wet things, soups or such and you can also put them in the blender so make it easier to swallow.

    I don't know how long ago you finished with radiation, but it usually takes a few months to recover completely.

    Don't lose hope, perhaps not long from now you will be able to have your Big Mac. Take one day at a time. If you are not eating much, at least take Ensure or Boost, several a day, depending on your weight because good nutrition is very important for your healing.

    Check with your dentist about the dry mouth. Some have experience with cancer patients and know what helps with the dry mouth.

    Take care and Semper Fi. I'm the wife of an ex-marine.

    "A friend of mine had some therapy after treatment when she had difficulty swallowing. Don't know the name but they basically teach you to swallow again and teach you some exercises to practice at home. Ask your doctor."

    It is called Lymphadema. Basically it is cooked nodes that will not accept lymph fluid from the nodes "upstream" of them, if you will. The PT for it consists of 2-3 weeks of facial and neck massage by a Therapist specializing in lymphadema. After that you can take over with home treatments if needed. There is a website dedicated to the problem but let me tell you this first, don't take it all to heart. The site will scare the hell out of you but it is not nearly as bad as they make it sound.
    www.lymphademapeople.com
    That should get you there.

    BILL
  • rmackenzie
    rmackenzie Member Posts: 4
    #6
    BugHunter said:

    "A friend of mine had some therapy after treatment when she had difficulty swallowing. Don't know the name but they basically teach you to swallow again and teach you some exercises to practice at home. Ask your doctor."

    It is called Lymphadema. Basically it is cooked nodes that will not accept lymph fluid from the nodes "upstream" of them, if you will. The PT for it consists of 2-3 weeks of facial and neck massage by a Therapist specializing in lymphadema. After that you can take over with home treatments if needed. There is a website dedicated to the problem but let me tell you this first, don't take it all to heart. The site will scare the hell out of you but it is not nearly as bad as they make it sound.
    www.lymphademapeople.com
    That should get you there.

    BILL

    Thanks everyone, you have given me some great ideas to get going. I will try Oral Balance today
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator

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