Hi Everyone! My name is Danielle I am 43 yrs old & have been dealing w OC for half of my life. 1st diagnosed during a TMJ surgery-I asked the surgeon to biopsy a suspicious site on my tongue that would not go away. Although I was only 21 & had never heard of OC, I knew something was wrong. I was referred to an ENT who would basically ruin my life. He cut thru the tumor-not around & hid my pathology report from me & my family. Obviously the cancer came right back & at the age of 22 I made it to a CCC & they saved my life. Radical neck dissection & partial removal. 4 years almost to the exact day it came back & at that point I was given no more then 5 yrs. Had a hemi, floor of my mouth& right tonsil removed, 35 days of radiation, peg tube put in. Was married after surgery but before radiation & was admitted to the hospital for a month & 1/2. The past 15 years have been a roller coaster of surgeries vocal cord nodules (4x) all my teeth removed-dental implants 100+ HBO dives, severe trismus & the TMJ disorder. Began having pneumonia about 7 years ago & once I had the upper teeth removed but before the implants I had a denture. Because I was unable to chew properly I began choking a lot. Recently & what has brought me to the site I have developed a nasal sound to my voice due to my palate shrinking, my tongue is not moving much anymore either so eating has become a huge issue! I am not allowed to lose weight or they will place another peg tube-That would be awful!! I am back in therapy (for the 100th time-that's what it feels like) trying to strengthen my tongue, get my mouth to open more but I am beginning to lose the fight that I once had. I've also suffered personal problems that add to all of this. Because of the nasal issue, no one can understand me when I speak, especially on the phone. I've had issues over the years w speech but never this extent. It's tough because no one in my life can understand what this is like. That's why I am reaching out on here. I would love to chat with people who understand the battle! Thanks for your time

Welcome to OCF! You have found the very best place to get info and support.

There are many members who have had extensive surgeries, myself included. There is an AP for Iphones that speaks everything you type. Im sorry but I always forget the name of it.

Hang in there! Now that you have found our group, you are not alone in this. You have found yourself an online family who really does understand. We get you.

I did not know about the app! I will definetly look in to that! Thank you!!

You're welcome

I meant to say the ap is for ipads, not iphones (but there could be aps for those too?). I had a good friend who used this. She even made phone calls with it.

Per Tammy, the Ipad ap is called Speak it.

Dani - it's hard for me even to imagine what you've gone through and what your life is like. There are so many whom I consider heroes here on the forum and now you have joined them, and are a part of our family. Please know that we're all in your corner and ready to help at any time.

Welcome to OCF. You are one of the bravest warriors to land here. You have endured and survived so much. Many here have quite dramatic tales too. I got off so easy, I can't honestly say I can relate but just a tad. Hang around; others will show up to offer support.