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hello i have never been in a chat room before!! but i have a question, has any one had all of their tongue removed I would really like to know how they are getting on dont know if i am in the right place??? My partner has had all his tongue removed and his usual positive attitude to the most shocking thing ever dissolved today he just wants to know what the future will be with regards to eating, drinking, talking ect

Hi!

This is the right place, and WELCOME! I hope you find what you need here.

Off-hand, I can't think of anyone who's had a total glossectomy on the site (there MUST be someone), and I'm so sorry to read of the troubles he's had with his flap. I can't begin to imagine how difficult it's been for both of you.

It's virtually impossible to remain in good spirits all the time when you're being treated for any disease, but it seems that some folks expect cancer patients to soldier on as if nothing's changed and just be little rays of sunshine. (Anyone who can do that is over-medicated!)

As far as eating, drinking and talking are concerned, it's really hard to say.

You are not in this alone. Please let us know how you get on.

Julia

Dearest stu43,

I've read about your concern with your partner's situation. I'm really sorry about the situation you are forced to be in. I can surely understand the anxiety in facing the future being tongueless. If it makes you feel better, I had a total glossectomy myself in 2008. Life has been tough but manageable. You just adjust to your new life without tongue. I have a slurring speech but understandable especially to your closed ones and a lot of time even strangers. However, nowadays, I can manage phone conversations as well and its difficult sometimes.

Drinking, I can drink but it has to be done very slowly to prevent choking. I take most of my food through a PEG tube. I've been on the tube since March last year. You just have to keep positive and think of other ways in looking at life. I mean, there a lot more other things in life besides eating and drinking. For me now, its eat to live and not live to eat.

Please feel free to visit my blog:

http://www.hiduplama.blogspot.com

I've documented my tongueless journey in this oral cancer world.

Hope this helps.

Lots of love,
Sharifah

Stu43,

Oops, forgot something. If you need to talk about being tongueless or anything at all, do pm me anytime.