I love OCF. It is what has gotten me thru two round of oral cancer. The members are intelligent, caring and just plain amazing!!
The Oral Cancer Foundation has helped to give my husband new meaning to his life. Since his bout with Oral Cancer he spends a great deal of time helping others that are going through treatment. I know that he greatly values the friendships he has developed with other members of the OCF.
My name is Gerry.I am 51 and got Tongue Cancer in 2000. I have had multiple surgeries on my tongue w/ life altering consequences. I had a recurrence in 2007. OCFoundation has helped me tremendously. The site is a wealth of REAL facts. The news feed is A+. I check in with it weekly to stay updated on this rare cancer. The Drs could not possibly do this for me today. But most important, the support from the others who have endured this awful disease has been too valuable to detail here. One of my very best friends in life I met on this site. We have not met in person yet. But we met here about 4 years ago and the bond I share with her is one of the greatest gifts in my world. I am so thankful to the OCFoundation.
I am mainly an in the background type person and I was a friendly caregiver to my boss who had a FT caregiver so I helped out when I was needed. Without this site I wouldn't have understood what my boss or his wife were going through so it was priceless when I needed it. I continue to visit from time to time and I just find the people amazing in their desire to help others that are about to go through their fight with oral cancer. Anyone who thinks or knows they have oral cancer would benefit greatly by logging on to this site.
I found the OCF site 15 years after I was diagnosed and treated for squamous cell tongue cancer. My diagnosis had come as a complete surprise, as I had never smoked and had been told by multiple doctors that I was not at risk for oral cancer. Long after my experience with it, I was actually looking for good resources for a couple of friends who had been recently diagnosed, and was amazed at the amount of current, relevant information that OCF had to offer -- far beyond what I could find on other cancer-related sites. If anything like this had existed when I was undergoing treatment, it would have been an enormous help and support to me. As someone who went through major oral surgery and weeks of radiation without the benefit of OCF's support network, I can appreciate how much this site can provide to someone facing this disease.
I joined the OCF Survivor Forum in November of 2002, well before my treatment started, and the members of the forum there, and also information on the main site, helped me in ways that are unmeasurable. I have made many friends in all areas of the world and stay in touch with many of them to this day. Back in November of 2002 there really weren't any other oral cancer sites like OCF and there still isn't today. I have been honored to give back on the forum, what was so freely given to me. It has been a life altering experience for sure. I am certain that advice that I received there has helped me to survive the horrors of cancer treatment and it's aftermath. I have 6 years of being cancer free today and OCF was a major part of that. Conversely, it saddens me that I have lost so many friends to this horrific disease.
I found the Oral Cancer Foundation 2 years after my diagnosis. When I finally found the site it changed my life. Talking to people on the survivor/patient forum made me realize, not only are there thousands of people going through the same thing, it made me realize I could actually someone. I was lucky enough to actually meet some of the people in person and I feel blessed to have done so.
As a two time SCC oral cancer survivor diagnosed in 1997 and 2001, I can tell you I know the fear of going this road alone as there were no support groups out there for this kind of cancer. I joined the OCF in May of 2001 and have been seen the help that this charity brings to both patients and caregivers and their families. It has even managed to save a few lives but stopping a caregiver from cutting pain patches or getting someone to the ER in time. Here are a group of compassionate, well informed people who have been down this road and are willing to help you on your journey. Besides the marvelous forum, there is a large resource section on the web site wityh information on oral cancers, its treatment, side effects, dental issues, best hospitals, etc. and two search engines to help you fins what you need. There are lasting cyber friendships formed on the forum and the emotional suppsort is beyond my words. I never knew how much my cancer had affected my husband until we flew to Vegas to meet twenty some other patients and caregivers. He came home knowing he wasn't alone in his fears abd feelings and a much calmer man. Meanwhile, the founder of this charity, is out beating the bushes at conferences and government agencies to get better funding for this cancer and to get the word out that 'EARLY DETECTION SAVES LIVES'. One of the best charities going.
The second biggest help outside of my family, friends and co-workers was the Oral Cancer Foundation website and the Patient/Survivor message board contained within. The information contained on this site is squarely focused on Head and Neck Cancers. The message board is chock full of information, assistance and support, given by people who have gone through or were currently in treatments for this cancer or caregivers helping someone with cancer. Each person there has been touched by the effect of this grossly disgusting disease, from young to older adults, from all over the world.
I live in rural Vermont. When I was first diagnosed with oral squamous cell carcinoma, I began searching the web looking for information and support. Fortunately for me, I found the Oral Cancer Foundation. I posted my situation on the patients/survivor forum and was moved to receive immediate caring responses and support. All of the responses advised me to go to a big city with a comprehensive cancer center for proper treatment. I followed this advice and it probably saved my life. The local hospital told me I had clean margins. The Mass Eye and Ear Infirmary's pathologists were convinced my margins were not clear and recommended radiation therapy, which I received. Throughout the process, I communicated regularly with other patients and survivors on the OCF's bulletin board. I was and remain extremely impressed at the compassion and support that is expressed there. Make no mistake, this is a terrible disease and victims of it truly suffer. However, the suffering, anxiety and dread are alleviated and mitigated by the wonderful community that has formed at this foundation. I now help to keep a section of the OCF website up to date. That is the oral cancer in the news section and I regularly try to post articles of interest to both the lay and professional readers of this web site. I feel like it is a small way to repay the debt I owe to this foundation.