As my cancer became more aggressive, and my surgeon more concerned and discouraged, I sought out oncologists with more experience with sarcoma. I was in search of some hope. It was 1996 when I first met with my new oncologists, the sarcoma team at Dana-Farber.
The team approach at Dana-Farber was very welcoming. I had gone there in a desperate state and left my first appointment with a renewed spirit. I wasn't ready to give up. I was prepared for the next challenge.
At the time I became a patient at Dana-Farber, the Institute was seeking the input of patients and family members regarding aspects of the Longwood campus of Dana-Farber/Partners CancerCare. Difficult days followed, as my disease progressed and I started my chemotherapy, but my involvement in the newly formed Patient and Family Advisory Council served as a wonderful diversion and an exciting new challenge.
"The team approach at Dana-Farber was very welcoming. I was prepared for the next challenge."
— Geri Malter
Patients need to hear from one another, and my new plan was to start a quarterly newsletter so patients could reach out to one another for inspiration and hope. The idea for a patient newsletter at Dana-Farber was welcomed by staff and patients, and Side by Side was born. As editor, I hoped it would advance the team approach, enhance doctor/ patient relationships, and empower patients.
The emotional support family and friends can provide is necessary, but it is not the same as the support of another cancer patient. Who other than another patient has a real understanding of the anxiety associated with those times spent waiting for test results? The uncertainty and the feeling of lack of control are emotions patients can share. The council and the newsletter are ways we can reach out to others — to inspire, instill hope, educate, and support.
Many cancer survivors reach a point where "giving back" to others becomes important. This gives some meaning to the terrifying experience of battling a life-threatening disease. My work with patients as an ultrasonographer over the past years was rewarding, but has been replaced by my work as a patient advocate. Recently, I became co-chair of the Patient and Family Advisory Council, and soon hope to help another patient carry on the responsibilities of being Side by Side editor.
Cancer and its treatments have taken a toll on my energy level. Fortunately, as in the past, my new challenges and goals keep me energized and help divert my attention from the reality of my disease.
