Though I was lucky to receive good care, after eight precious months working with a specialist trying to figure out why I went from healthy to damned ill, it was more than good medical care that saved my life. Being diagnosed with a terminal illness is terrifying and isolating. I felt alone in a wash of pink ribbons, without anyone who understood my disease process and how to deal with it. Who gets kidney cancer?!
By some internet miracle, and at the depth of my horror at the prognosis I faced, I found ACOR–Association of Cancer Online Resources–now called www.SmartPatients.com. http://www.smartpatients.com/kidney-cancer These were other patients who provided both TLC and education that I so desperately needed. Moderated by intelligent and experienced patients and caregivers who knew what had happened to me. What I did not get was someone telling me that I had gotten sick for failure to buy their supplement or for leading a dissolute life!
I wrote a simple distress call online, that I just had a nephrectomy and was being advised to consider HD IL2 for my countless lung mets. I needed help. Within forty minutes, another patient offered his quick story with the disease, that he was working, in a clinical trial and doing better. He gave me his number and said it was a good time to call. I did call, and found a real person on the other end, who immediately let me know that I was not alone, that other options were emerging from the research, that my doctor was considered to be excellent and so on. Not only this call, a clear signal that I was not alone, but he gave me his cell number, his work number and his pager. “Call me anytime you need to talk.” With that, my head cleared every so slightly, and I began my journey to this world, one which has lasted nearly ten years. And it has led to you.
Through www.SmartPatients.com I have come to offer my own knowledge to others, and hope you will find this a valuable resource as well. You will be welcome, and given tools to make you more capable of dealing with kidney cancer. Other cancers have similar groups, of course, as we all need to be SmartPatients.