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Online Support Forum
BrianOCF posted:
This portion of the foundations web site will take you into a message board and chat room area where you may ask questions, help others, share ideas and opinions, and learn about other peoples experiences dealing with oral cancer. While the foundation is still in the process of building a web presence that provides facts, ideas, alternative resources for medical and dental information, and support, we have always hoped that the heart and soul of the site would be more than just information. No one gets through this battle alone. This forum is a location where interaction between individuals with oral cancer, friends and family members who are supporting those with cancer, survivors, care givers, and even interested members of the public, can meet to share experiences and ideas, ask questions, and hopefully find inspiration from those who have traveled this path before them. It is designed to facilitate the exchange of dialogue between those concerned with oral cancer and provide a "human" component to dealing with the disease.
When I was going through treatment, I had so many questions. When was I going to get rid of all those sores in my mouth? What about tasting things again? What about a treatment different than mine, which I had heard about, and so many more questions. There was also the psychological aspect of it all, the depression, the burden it put on those around me both emotionally and physically, and the constant question?. when was it going to get better? When my wife needed to talk with someone about what she was going through, and make no mistake, even without the disease, those close to patients are under a significant burden, also needing their own kind of support and information, there was no forum for her to seek help. Sometimes, only the voice and perspective of someone who has been there before you can give you the answer that you need. Doctors may provide you with their insights, but for all their knowledge and empathy with those they treat, they have not personally experienced the process. I finally found a voice, someone who had a similar cancer, one year before me. That relationship, conducted primarily by emails, gave me so much hope and support. His insights showed me the light at the end of the tunnel, and from him I learned numerous little bits of useful information. Foods to try, tactics for dealing with swallowing, time frames to major landmarks in recovery??.all helping me see, that I too, could get through this horrible event in my life.
The forum now has thousands of individuals who you can converse with and develop relationships with. I urge you to participate, no matter which side of the issue you are on. Please tell others about it so that our community will grow rapidly. If you are a caregiver, please let your patients know about it. The battle against oral cancer is not fought with drugs, radiation, and surgery alone; it is fought on the emotional field as well. Helping us build our support community will help you and others as well.

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