Saliva Glands

sweetblood22 said:

many thanks
Thank you so much for starting this thread. I do not want to sound like a whiney baby, but since you started this in regard to my saliva issue, i will go into a bit more info. One of my issues is that everything still burns my mouth. Water burns. I have tried some Biotene products but hurts my mouth to the point of making my eyes water and I end up with my nose running and eyes tearing up from the pain.

Even things that you would normally think would be soft and easy to eat are not. I keep trying things, but I am not finding much of anything that does not hurt. Even mashed potatoes feels like fine grit sandpaper. I am sure you are all well aware of what it's like. Sometimes people ask me what the pain is like. I sort of think it's like when you scaled your tongue on boiling coffee, or lava hot cheese, but waayyy worse.

This has been the hardest thing for me. It is hard to explain to people who have not been thru this. they just "don't get it." I am crying on a weekly basis about the frustration of missing food, and eating and sitting at the table eating with my family.

I had to have two dillitations to stretch my esophogus, I realize I am lucky to even be able to swallow some bites of some food now. I could not swallow food at all over Christmas. We had some relatives up that had not seen me in a while and wanted to know why I was not going to sit at the table for Christmas dinner. Their veiw was that I "should be polite" and at least sit there and catch up. I almost came unglued. I am glad that my dad handled it for me because I thought the top of my head was going to pop off. He had to explain to them again that I had not eaten ANY food since 4-20-09. There were times when I could smell my gram toasting a bagel, and I would just cry.

I am a little embarrassed to type this, but honestly, I have not really ever cried about my cancer or getting diagnosed. I am struggling more with this food thing. It is killing me that I cannnot eat normally. I am already on Lexapro, and I don't believe that I am experiencing depression. Just intense frustration and sadness over something I so enjoyed and cannot do any longer. I was an excellent cook, and so is my dad, and we are sicilian, and food is just so tied to so much of my life and memories.

So, please, if you have any ideas or things that work for you, lemme know. I will try them. I am going to google the sea minerals, or whatever that is. Will try that. I am still using baby tooth paste and children's flouride ACT. I was afraid of flouride, but I am more afraid of losing the teeth I have left that they did not pull before my radiation. Even the baby products hurt, but I magic swizzle before to tolerate the dental care.

Even the doctors are frustrated over my lack of healing. I also have Fanconis Anemia. Which apparently is how I developed the Head and Neck Cancer. They are fond of blaming my slow healing and other issues on the Fanconis.

Oh, and what does NCP stand for? I feel so lame, I cannot figure it out. I don't think I ever said my diagnosis. Matastatic Squamous Cell Head and Neck Cancer with Unknown Primary. Stage IV.

Greend said:

What to eat
I too went through this problem and I lived on Weight Gain 2000. My two teenage sons were my care givers and would mix up my "milkshake" every day. Sometimes they thought they would be doing me a favor by slipping someting into the drink however every time it burned - epecially bananas; now I laugh about it but not then. I am now having problems again and something I learned is to warm the milk before you mix it, I promise you it makes a big difference. Also I bought one of those old fashioned milk shake machines to blend the materials.

Concerning family - we have all been there. I can't count the times I have sat at a table, eat maybe the mashed potatos (grits go down well but not that many calories), drink chicken noodle soup and smile.

Pam M said:

So Jealous
St. Simon's Island? Went there years ago for Spring Break. LOVED it! Have a wonderful time

sweetblood22 said:

Melissa Mae
Welcome to our world. I am like 8 or 9 months out of radiation and mine has not really come back yet either. Like you, I seem to taste sweeter things, like fruit, better. I just made a fresh batch of home made apple sauce. I was never a fan of sweet stuff, dispite my screen name, so it's kind of hard. I was always a savory eater. Now everything burns and tastes salty. Or like wall paper paste.

I tried and ate two scallops today. It took me a while to get them down, and they really did not taste like much. I am hearing from others here and at hospital that it can take a year or more. We just have to hang in there and pray for patience. Which has never been a strong point for me.

I could not smell for a while, but I can now. It is pretty frustrating when you can smell food and cannot eat it, and the things you can eat, you cannot taste anyway. I am glad that you can eat though. It is hard to eat a balanced diet. I think a lot people would agree that they feel like they are just choking food down.

I was always a person that lived to eat. Now I have to just eat to live. Frustrating.

sweetblood22 said:

thanks. does it hurt, the
thanks. does it hurt, the acupuncture? what area of the body did they put the needles in? off to google.

sweetblood22 said:

yay!
i ate cereal today. was never much of a cereal eater, but it hit the spot. i had to wait for it to go mostly soggy though. still a triumph! and my boost breeze came already. like two days ago i ordered it. that was fast. i am hoping i will still like it, and it won't burn still. stuff aint cheap, but it is worth it for a different taste.

Greend said:

Oatmeal
I remember those days - the first solids I was abe to eat with ease was bread pudding - I had never had it before and now, 12 years later it is still one of my favorites. First cereal I enjoyed was oatmeal.