Some cool things about the newspaper article….since it was published I received a card from our superintendent of schools. She loved the “Knowledge is Power” that was in very large bold letters on the newspaper article (but not the on-line version). Knowledge IS power for those of us diagnosed with rare diseases. We so need to educate ourselves…many very good physicians and surgeons may know little about our disease and it’s treatment, we so need educate ourselves and become our own advocates.
I also heard from someone who grew up in my neighborhood as a child. I left home at age 17, so I knew her almost 35 years ago!!! She remembered me! I heard from the attorney who helped me found my 501(c)3 non-profit, we’ve not been in touch for a few years. I heard from a woman I communicated with almost 5 years ago…she had tried for many years to have a child, and on delivery of her first long-awaited child she was discovered to have appendix cancer. My heart so went out to her…can you imagine waiting almost a decade for a child, only to discover you had advanced cancer on the child’s delivery? Your best and worst day being the same? She is now a four and a half year survivor, her son is 4 1/2 years old. How cool is that?? And my web site hits have tripled as a result of the article, maybe that will help increase awareness. Cool also that the web site redesign was completed before the article!
I have also been contacted by a woman with appendix cancer who lives in my town, and by another woman who will be attending college with me starting next week. She is going to school to be an RN after losing a loved one to abdominal cancer, she hopes to be a better advocate as an RN.
And thanks to those of you who have signed up to our new facebook site and blog group. We truly need to connect with each other. We can support each other in ways no one else can, however well meaning they may be. Only those who have traveled our road can best understand us. I appreciate all of you who have joined “the group”. Way to go!!!