Did you ever wonder what kind of questions oral cancer survivors with reconstruction of their tongues ask each other….well, now you will know:
When you stick out your tongue, does it go off to the side? Can you feel on that side? Do you do tongue exercises….lalalalala, doe, doe, doe….tot,tot,tot….? Does your tongue get stiff…when? Can you drink wine? Can I see yours?
The beautiful women pictured here aren’t afraid to show the world their beautifully reconstructed one third of their tongue, removed because of squamous cell oral cancer, and reconstructed to allow normal swallowing functions.
I would have stuck my tongue out, too, but I was taking the picture! I was honored to meet these women at the David Nasto Oral Cancer Awareness Walk at Perona Farms in Andover NJ on September 22, 2012.
The lovely Mensch-ette Eva Grayzel!!!
I am sooo envious! I want one!
Beautiful women with beautiful tongues!!!
Question: Is it necessary to continue doing the tongue exercise…forever?
Does it help maintaining good speech?
About the wine: Can they still drink wine?
It’s not necessary to do tongue exercises forever, but like any muscle, the exercise increases mobility and diminishes stiffness. And, we all enjoy a little wine. One woman I met prefers a sweeter wine, now. Another is more sensitive to the wines that have more acid. But, they all enjy the ‘normalcy’ of having a glass of wine with dinner every once in a while.
I am the blonde on the far left, and I must say I am blessed that I NEVER had speech therapy! I guess I am lucky that I was a singer and I like to talk, ask anyone, I never shut up, and I think that is why I didn’t need it. I did have trouble with my esses for a while and the #6, for 1 whole week after surgery my husband said it was too quiet in the house, lol. I talk just fine now,I can drink wine, I can not drink vodka or anything strong like hard liquor, or eat spicy buffalo wings or anything too sweet, too salty, bland is best,oh trust me I find a way to still eat my favorite things, despite the difficulty of swallowing,chewing into my cheek or lips, but I drink water all day, all night. I am so happy to be able to share my story with everyone who understands and everyone who has known someone who has had this cancer and I look forward to many more years to meetings like yesterday!!! Nice talking to you Eva, your absolutely stunning!!!
Tks Eva. Hope to see you in this end of Canada someday. I know you are going in Burnaby but it is at the other end :). Suzie
I am proud to say I am the one in the middle. These are some of the strongest,bravest and most beautiful people I Know. I had 3/4 of my tongue removed and reconstructed. I did have speech and swallow therapy. I still have trouble pronouncing some words but I get by. My taste has changed dramatically there are foods I use to love and now not so much. Lol I was never a wine or beer drinker. I like my tea with honey and my morning caffeine fix (coffee). I will have a non alcoholic frozen drink if the moment is right. Eva it was a pleasure to meet you today and take these great photos. I look forward seeing you again and taking another photo with you in it.
As the other two have posted, I guess I will as well :-). I am the blonde on the right, the youngest of the 3 and I had half of my tongue removed and reconstructed. I can’t drink wine as it burns my tongue and dries my mouth out, but I can drink beer and some liquor if the liquor is mixed lightly or not too strong, I can’t handle liquor straight anymore. I can’t drink pop/soda due to carbonation hurting unless I let it get slightly flat amd as for juice, I have to water it down or it dries my mouth out and burns because of sugar/sugar substitute, so I do half water and half juice. Also can’t eat spicy food, vinegary foods, acidic foods, or some meats and breads due to choke hazards. I did have some speech therapy, but they said I was as good as I was going to get. Was 25 years old at diagnosis and they gave me exercises then and I still do same ones today 2 years and 2 months later, if I don’t…I feel the pain, so I have to keep doing them to keep pain away and mobility and flexibility.
You ladies are awesome. Thank you so much for sharing your experiences.
Suzie, I’ll be speaking in Toronto on Oct 4th for the CDHA meeting!
Thank you so much for this. I really appreciate your bravery!!!
This is awesome!!!