Finding Hope Through My Own Personal Village
As a newly diagnosed cancer patient in 1999, living in a small town in New Mexico, I felt like I was alone with my disease. I knew lung cancer was common, but there was no obvious way to find information or connect with other patients. The internet was in its infancy. Search engines were limited, but I did find one message-board site for patients of various types of cancer through the Association of Cancer Online Resources (ACOR.org). I clung to this resource like a lifeline, which at the time was my only way to connect with other patients like me.
My Cancer Community
For me, the cancer community starts with my own personal village: my husband, family and friends who surround me each day with love and emotional support. They also have helped me with things like meals and housework. And they have stayed with me, on a rotating basis, during times I have been away from home at my cancer center for extended periods for treatment.
Along the way, I have also had the good fortune to get to know many other lung cancer patients, quite a few oncology nurses and techs, cancer researchers (including a cousin), a number of oncologists, and my amazing pulmonologist, all of whom have become like family over the years. I’ve also met people involved in organizations that provide patient-to-patient hotlines and phone buddy programs, with which I have volunteered as a “buddy” and to which I have turned to request a “buddy” of my own each time I have started a new type of treatment.
My medical community supports me with their professional expertise and cheerful outlook. And my fellow cancer patients help by offering encouragement and sharing information based on their experiences with cancer and its treatments. Early on in my journey, a friend told me to have one good day at a time and that pretty soon they would add up to good weeks, months, and years. He was right. That was twenty years ago.
For me, the cancer community starts with my own personal village. My husband, family and friends who surround me each day with love and emotional support.
Where the Community is Headed
The cancer community is vastly different today. In 2016, I had the good fortune to meet and thank Gilles Frydman, the founder of the pioneering ACOR website, at a conference. My husband and I were two of a couple hundred patients and caregivers in attendance. Some of us already knew each other from our participation in online sites like cancerGRACE.org, Inspire.com, and other successor sites to ACOR, and staying in touch is easy for all of us patients now through the next generation of community via email, texting, twitter, Facebook, etc. Many have even started organizing and taking action to support others like us searching for connection.
My Message of Hope
The acceleration of breakthroughs in cancer treatment over the last 10-15 years has been astonishing. There are many more treatment options today than there were when I was first diagnosed. Furthermore, the cancer community, including the many individuals and organizations in place to support those on their cancer journey, is stronger than ever. Now more than ever, cancer is truly a journey nobody has to travel alone.
My advice to other patients is to stay current on developments in treatment, take advantage of the variety of support provided by the cancer community, and never lose hope!
Living with Cancer