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15 Year Old Survivor of a Ganglioglyoma

secretqueenbee13
Posts: 4
Joined: Jul 2009

Hey everyone. I am a 15 year old girl. I had a ganglioglyoma when I was a week old. It started by my carotid artery in my throat, hit the 7th nerve in my mouth, behind my nasal cavity, and went left behind my left eye. I am blind in my left eye and I can't breathe through my nose, so when I talk, it always sounds like I have a cold, but I don't! :) I get SO many comments from everyone and so many stares. So I was just looking for support out there. I just need someone to connect with. Thanks so much. And by the way, I am cured. I will celebrate 15 years of being cancer free when I am 16. YES!!!

StarMunchkin's picture
StarMunchkin
Posts: 4
Joined: Jul 2009

Congratulations, 15 years cancer free is great! I've been cancer free for 23 years now, I just turned 26 in June. If you need someone to talk to you can always send a message my way. I know what its like to feel like you're constantly being stared at, and it's a little straining to have to explain to people why I am the way I am but I guess that makes one less ignorant person in the world so I'm happy to answer most things about myself.

secretqueenbee13
Posts: 4
Joined: Jul 2009

It is GREAT to know that there is support out there that I can depend on. I guess what I am saying is that I have no one that I can talk to face-to-face, but there are a couple people (online) that understand what happened to me and why I feel this way. I am captain for a Relay for Life team for next June, hopefully. I have had 8 people in my life affected by cancer.

Me
Grandpa
Grandma
2 Aunts
2 Family Friends
1 Acquaintance

I wish I could find a place, near where I live, just to vent and let everything out. I just need a place where I could go for as long as I needed it and just sit there and let it all out: Scream, Cry... do whatever I have to do. I think that would make me feel better. Thanks so much!!! :)

Lisainred
Posts: 1
Joined: Aug 2009

I'm thrilled that you made it to this milestone. It sounds like your family might have a gene for cancer. Did your doctor say anything about that?

I'm an 18-year head and neck cancer survivor. It started on my tongue and later moved to my neck lymph nodes. Had surgery and radiation. Luckily for me, this is one of the "good" cancers. Very curable.

If you need to vent, please let me know. I hope you stay busy and keep trying to make new friends. In the meantime, you could send me an e-mail if that helps.