By: Annette McElhiney
The word ‘community’ means something different to everyone! When I was growing up in rural Missouri, community referred to our neighbors on nearby farms; whenever a farmer became ill or died, pitched in to plant, till, or harvest the crops. When I was a nurse, community” meant the hospital and medical community where I worked. When I was a college professor, it meant the academic community at my college and the discipline outside of it.
Yet, when I was diagnosed with cancer, I never dreamt I would find such solace in joining another community — a community of cancer survivors! Why has this community become so important to me? To quote Elizabeth Barrett Browning from her “Sonnet 43,” “How do I love thee? Let me count the ways.”
When I was first diagnosed in 2008, I felt the ground beneath me shift. Suddenly, all the people I knew before cancer seemed different and separate from me; I felt alone on a tiny island and was confused, angry, scared, sad, grief stricken and depressed. How could I possibly survive? Helen Keller faced enormous challenges in being deaf. But with courage, she developed an attitude whereby she said, “Although the world is full of suffering, it is also full of overcoming it.” As ovarian cancer survivors, we can do the same, but only through establishing a larger community of survivors.
‘Home’ is where we are accepted for who we are regardless of our weaknesses, fears, bad behavior or moodiness. After a cancer diagnosis, we may initially feel thrust out of our comfort zone and into a world where we don’t know how to react, think, feel, or behave. Who really knows how we feel, worry, grieve, or dread what lies ahead? Only another ovarian cancer survivor can know, specifically, any these feelings. But where do we go to find such survivors?
Having a community of others like us helps keep our feelings of hope for a healthy future and fears of recurrence in balance. Only other survivors understand the significance of numbers in reports on CA-125 tests, CT Scans, PET scans, Staging, Recurrence rates, and more. Other ovarian cancer survivors also know the constant anxiety preceding each report that could indicate a return of our cancer. They can, however, also listen to our concerns, share their own experiences, help us strategize on our disease and give us the support we need to move forward in managing it. In other words, a community means we are no longer alone!
Secondly, joining a community of survivors can take us out of ourselves and move us from being alone to being with others and taking action. Yoko Ono said, “Healing yourself is connected with healing others.” I have been constantly amazed by the strength that can arise within a community of supporters. Not only is important information and new research on the disease shared, the sense of belonging and no longer being solely responsible for our demise can greatly empower us.
As a result, adaptation to our situation can provoke personal growth within us. Gradually as we watch others within the community tackle and solve their problems, we begin to believe it is possible for us to do the same. The acceptance and level of comfort we feel within the community enables us to begin navigating more comfortably outside of it as we know we always have a place where we can return and replenish our strength.
Thirdly, a community can offer survivors the opportunity to make a difference! Hippocrates, the Greek physicians and Father of modern medicine said, “healing is a matter of time, but it is sometimes also a matter of opportunity.” Many long time cancer survivors have said that life meant far more to them after their diagnosis than it ever did before.
Commonly we take life for granted until we are actually faced with the possibility of losing our lives. When given a diagnosis of ovarian cancer, especially, at an advanced stage, suddenly we realize the time that lies before us may not be as long as we had hoped it would be. Suddenly, a very ordinary life takes on extraordinary value. When our doctors tell us to enjoy each day to the fullest, we realize the number of our days might be limited.
Herein, lies the opportunity of which Hippocrates speaks. All survivors have choices! They can choose to be negative, to look only backward, and to take no action. Or they can choose to be positive, to look forward, and to take action.
As I contemplate these choices, I think about what Dr.Laura Shawver, founder of The Clearity Foundation, did when she was diagnosed with ovarian cancer in 2006. Even though she had been working in the pharmaceutical industry for much of her professional life, when she was diagnosed with ovarian cancer, she found, unlike breast cancer and other cancers where molecular profiling was available, no such process was available for ovarian cancer patients. However, she wasted no time lamenting that fact; instead she moved forward. She designed and made available such a process for the ovarian cancer community. She works tirelessly today refining this testing to any woman who seeks it. As a survivor myself, I’m very grateful to her for making that choice.
Today, ten years after Dr. Shawver started The Clearity Foundation and as an eight-year survivor myself, I ask, “what small thing can I do to make life better for all ovarian cancer survivors?” As I participate in focus groups, gathering information about the needs the ovarian cancer community has, I’m struck anew with how great the need still is for information, support, resources, and hope.
Becoming a part of a community, like the one we are trying to build here at The Clearity Foundation and on The Clearity Portal, is an opportunity for each of us to enhance the lives of all survivors. As we survivors heal ourselves, we gain momentum in improving the lives of all survivors. The more we learn about the disease, the strategies for coping we share, the processes that need to be developed for survivors, and the research in the pipeline, the better we are able to work together towards managing our disease and, perhaps, even ensuring a cure.
As mother Teresa said, “None of us can do great things. We can only do a small thing with great love every day.” However, we have a greater chance of doing great things with the power of many, than we do with only the power of one.
So we sincerely hope, you will register for our portal and return to our site again and again for the latest research updates, encouragement, and assistance. We also hope you will tell others about this dynamic community we are trying to build and encourage them to join us.
We cannot change the past, but we can enhance the future. In numbers we also gain personal strength and credibility in the ovarian cancer medical community. Consequently, our needs will be heard and, hopefully met. With a survivors’ community, we can secure successful survivorships for all ovarian cancer patients.
Forgive me for repeating my favorite quote by Gilda Radner, “The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived.” Let’s live it together in the ‘home’ we are building!
To read more of Annette’s posts on The Clearity Portal, please click here to login.