OCF needs to hear your story - 03-28-2014 11:07 PM
Several times during April, (oral cancer awareness month), OCF will be putting out national press releases about he disease, and various issues related to it like HPV, and more. But I would like to start out by talking about early discovery in the first release due out on April 10th, but not in the conventional sense. I want Americans to know that those of us who are lucky enough to survive our ordeals, (and are grateful to do so) have lives that have many negatives that impact us as a result of the morbidity of our treatments, even after survival. Over the years I have watched people who as a survivor who lost their tongue, now no longer be able to go back to work as a teacher where talking was essential to their life long profession, have a cascade of negative events result. Loss of income a year later when the savings have been consumed, cascaded into a loss of their home, and there were even more difficult challenges after that, including the too often recurrence. Even the dental issues and expenses that go with trying to keep our teeth can break the bank or at least be the straw on the camels back that causes hardship. There are many more quality of life issues that impact oral cancer survivors as a result of the morbidity associated with their treatments. We are so not like breast cancer survivors in so many ways. That does not mean I think their journey is any less noble, but it is indeed different when you reach survivorship.
I am asking as many of you as possible to communicate in writing some of the difficulties that you find in survivorship to use in this first press release. You can remain anonymous if you prefer, or be mentioned in the article. We need people to understand why poor lifestyle choices such as smoking, need to be avoided. We need to illustrate why a very early stage discovery (which happen not often enough) can make the difference not only between survival and leaving this mortal existence, but in what peoples AND FAMILIES lives are like after this disease and the associated battle with it are done. NED, is never the end for us, there is always the next challenge.
Americans need to hear about us, so that they do not become one of us. Please help us out with your stories. They could be posted on this thread, or tomorrow I will post an email address for John Pohl a writer that we work with to help put these stories together into a press release that will make Americans think.
I am asking as many of you as possible to communicate in writing some of the difficulties that you find in survivorship to use in this first press release. You can remain anonymous if you prefer, or be mentioned in the article. We need people to understand why poor lifestyle choices such as smoking, need to be avoided. We need to illustrate why a very early stage discovery (which happen not often enough) can make the difference not only between survival and leaving this mortal existence, but in what peoples AND FAMILIES lives are like after this disease and the associated battle with it are done. NED, is never the end for us, there is always the next challenge.
Americans need to hear about us, so that they do not become one of us. Please help us out with your stories. They could be posted on this thread, or tomorrow I will post an email address for John Pohl a writer that we work with to help put these stories together into a press release that will make Americans think.