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Oncologist Scope Today

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

So my radiation oncologist scoped me today, 6-8 weeks post rads, 5 chemo down and one to go. Doc said everything looks good, my tissue has healed well. The only complaint I have is that my tongue is still burned to crap and so is my throat, internal of course. Eating food is my biggest challenge because it hurts so bad. I explained this too him and he said it will take time for my "tissue" to heal. Sometimes when I drink water my tongue stings as well as my throat, some times it doest. If I eat anything other than chicken soup it feels like I'm eating fire. Apple sauce, yogurt, pastas, etc... all burn me. I have to drink water after almost every bite to rinse to stop the burning. I feel like I'm being held back by this because I could probably be in the second belly button club by now. Maybe I'm rushing...just frustrated. Thanks for listening :)

<3

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hey John, I feel your frustration, literally. I'm still using the gastric tube closing on five momths post rads and chemo. I can eat a lot, but no saliva, and most things lose taste after a couple of bites. 6-8 weeks out, for sure your throat and mouth are still healing. Give it another two to four weeks before you start climbing the mast, I bet you see some better results by then. Hang in. If you've gone this long without a tube, good for you. I have the tube, and still haven't gained back my weight, so if you're not still losing weight, you're on schedule. I think it can easity take to the third to fourth month out to start getting back on your feed. Frustration is only a temporary normal, but it's normal.

best, Hal

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Yeah I still have the good ol' tube still. Thanks for your comments Hal. Just sucks that I'm held back by the burning. I'm down to 3 cans of liquid food fomr 5-6, so I'm making some progress.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Been there and done that, for sure. I remember the first time I tried ketchup and it burned the s*it out of my mouth -- and before the big C I was dicing fresh habanero peppers on my salads.
I think the ketchup experience was about two months after I'd finished rads. But by that summer I was once again picking habaneros from my garden and dicing them on my salad.
You just need to heal, that's all.
BTW, I love your mug shot. You should be back to swashbuckling before you know it.

--Jim in Delaware

Hondo's picture
Hondo
Posts: 5656
Joined: Apr 2009

I know where you are coming from it is hell but it will get better. Ask your doc about using mouth wash there are medicated wash that can help relieve the burning and let you eat with out pain.

All the best to you my friend

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

John, all of us have gone through what you are going through now. Once I could start tasting foods again I expected my eating habits to return to normal - WRONG. I am 11 months post treatment and still have many foods that cause my tongue to burn, not as bad as it used to but still enough to make me avoid certain foods.

I love ketchup but can not use as much as I used to, mustard still burns as does anything with vinegar or too much salt. You have to learn to use these things in moderation or find substitutes. I found that Cain's makes a hot dog relish that I can eat but still can not use regular mustard and relish. You still have a lot more experimenting to do before you will find what works for you, but don't give up or get frustrated, it will happen.

I stuck with the safe foods, scrambled eggs, mashed potatoes with plenty of gravy, cream of wheat cereal, pudding and ice cream. Anything that would go down fairly easy and keep my weight up, I also drank Ensure daily. Meals weren't always a pleasant experience but I did what I had to do and I was able to get my peg tube removed within a month of completing treatment. You still have more chemo to go through so it might be wise to keep your tube in a while longer. I know that's not what you want to hear but due to some of the side effects of chemo it might be in your best interest.

Hang in there John, you will soon be enjoying more of your favorite foods.

My best to you,
Glenna

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