Hello all,
Having Miss Peggy with is not without its perks. For one, it enables me to take in the types of food (like beetroot, fresh ginger, gochi, apricot seeds etc) that I would not have otherwise. Furthermore, I don’t have to take forever cleaning my mouth after each meal. The only thing that I have to monitor is the possibility of having caries on my teeth because of lack of saliva.
I’ve been asked by many people how it’s like ‘eating’ through peggy and whether I have the cravings for solid foods. Well, you get the fullness sensation just like eating normally minus the taste. Do I miss enjoying my favourite food? You bet, I do! And whenever I have the craving for my favourite food, I quickly pour my meal into my stomach until I feel full. Then the craving diminishes in a snap. That’s how I deal with my cravings. The whole process takes only 5 minutes. Cool, eh?
I just read Dr Hasanah’s latest entry about juice fasting because she said that her lymph nodes are talking. I sure hope that her effort will yield satisfactory results. Maybe I should do that too. Shouldn’t be hard for me since my Peggy is here to stay..haha
Bye, for now.
"Never stop fighting"
9 comments:
Hello Sharifah,
Why do you think your Peggy is here to stay? Is there a reason? Can you swallow or just can't chew? Mine came out a few weeks ago after 2 years. I push and worked very hard for that goal.
Also I found that I was (and still am) cleaning my mouth more than ever. Brushing, oral PerioGard rinses, Baking Soda and Salt Rinses, and using my fluoride trays nightly. For me it's a lot of work even when I wasn't putting food in my mouth.
I hope you will eat again, I couldn't have made it without that goal.
Peace
B
Hi B,
Thank you so much for sharing your experience. You've given me hope to eat again which I think is next to impossible. I can swallow and chew very slowly just that I feel like I'm chewing rubber. And at times I would even choke.
Ok. I'll work harder from now on.
Thanks again.
I would not want to give you false hope, but if you can swallow and chew, I believe and pray you will eat again someday.
I had to learn to modify my foods and rethink what foods I put together.
I began with protein shakes. Then soups, mostly broth. Then Mashed potatoes. Then later mix in small amounts of other foods like cheese, real bacon bits, small diced veggies.
I had to retrain my new tongue. One doctor suggested tying a lifesaver to a string, placing in your mouth and make it go where you want it to go. Like a tongue exorcize.
Graduate towards pasta with cream sauces and try chunkier soups.
You may never eat thing you have in the past but my modified diet keeps me very happy.
Remember this took me 2 years. Baby steps. Small portions. Sometimes just table spoons to begin with might be a meal, and plenty of water and juices to wash it down.
If you give up it will never happen so don't expect too much too soon or you might get discouraged.
I stopped taking my pain meds but found if I took something an hour before my meal it helped because I wouldn't eat as much when I was in pain.
Believe you WILL eat again!
Peace,
Brian
Hi Brian,
Can you taste the food? For me, I can't taste anything.
I'm so glad to read about your success in getting rid of your peggy. It sure gives hope to me, as well. I am quite fortunate in the sense that I don't experience any pain. So, I have never needed any pain med.
I'm hoping to get a little taste back. When that happens I hope eating will be somewhat enjoyable.
I understand very well what you said in one of your blog entries that when you get tongue cancer you've actually lost more than your tongue. A big part of your life is also gone. Yes, cant agree with you more.
Do keep in touch.
It took a very long time before my taste returned and when it did. Some things are different. I can best describe it by listening to stereo with only one speaker. You hear the music, but the full impact is not the same.
In the beginning I used a lot of spices. I found I used less pepper than I used to, but more salt. The best was a garlic pepper/salt mix. The taste of chocolate was always good, but many things were bad in the beginning but overtime my taste became more normal. Not the same as it was, but I can tell what I am eating.
My doctors suggested bland foods, but I opted for a more seasoned variety. I pushed my limits. I also experimented with foods I used to dislike and I found my new tongue actually likes some things I never have.
Experiment with things that make you salivate. Sour things helped me. Sugarless lemon drops, lime flavored drinks, fresh pineapple, baked sour cinnamon apples, and Perrier mineral water. I like the bubble effect in my mouth. Also noticed the less I used some of the awful tasting oral rinses, the more things tasted better. A mixture of baking soda and salt for a rinse was helpful.
It just takes time and will never be exactly what it once was but it should get better.
Learning to eat was like being a baby and having to learn all over again. Try EVERYTHING! Baby steps.
Brian,
I tried to take in a tiny piece of bread covered with lots of butter. I managed to chew but when I tried to swallow I couldn't because the clump of bread just somehow refused to go in. The throat muscle just pushed it out instead on in. Maybe I was just too ambitious.
I'll try something else today and see how it goes. That broth sounds good.
Bread is my enemy. It requires LOTS of water to wash down.It's too much work. I don't eat sandwiches I only eat what's in them. I still avoid it. Try Tuna with lots of mayo. A small amount on a fork and place it back by your molars, then wash down with a water or milk.
If you insist on bread, make a pesto with olive oil. Dip and soak a very soft bread into it, then with a fork place it in back to your molars and try that. Stay away from the crust for now.
I would start with Mashed Potatoes first and then slowly add different things to that mix. Try applesauce and yogurt. Remember you will learn to eat differently. Think about how and what you would feed a new baby.
How long has it been since you had your surgery?
I had my first surgery(total glossectomy) in April 08 and the second one in Aug 8 because of a recurrence and had half of mandible removed. This was followed by radiation and chemo. The funny thing is that I could eat just fine after my first surgery. But now I am relying on Peggy.
I have not had an issue with my jaw yet, since my cancer has only invaded my tongue and floor of mouth, but I would think that would take a long time to heal. Did they rebuild the mandible? I met with a man last year that had an leg bone used to rebuild his jaw bone.
Remember it took almost 2 years before I could eat and still need to modify my foods. Take your time. In my early days I supplemented much of my nutrition with soups and protein shakes.
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