If you have to ask what jazz is, you will never know.
- Louis Armstrong
The stillness in the meeting room was electric.
First, one panelist addressed the audience members who have never experienced a malignancy. She described the unique and powerful bond that exists between cancer survivors. She described how the brush with mortality forces each survivor to renegotiate terms with Life itself. She reminded everyone that the cancer care system too often lets down both cancer patients and survivors.
Then she addressed the cancer survivors. “As a fellow survivor, even if you and I have never met before, I would bet that we would find common ground within fifteen seconds.” Other survivors in the room agreed with her immediately.
This was not a typical cancer conference. The Cancer Survivorship Forum was part of the recent Wisconsin Comprehensive Cancer Control Summit. An eye-opening presentation on the value of physical activity for cancer patients and survivors was followed by a panel of articulate survivors and their significant others (co-survivors) reflecting on which policy initiatives will have the biggest impact on future cancer patients. Everyone in the audience was engaged from start to finish.
What did the survivors want? Patients and survivors expect appropriate, user-friendly, and balanced information about their treatment. They expect compassion from every person with whom they have contact. They demand quality, timely care that does not leave them financially devastated. They deserve a network of support for themselves and their families. They expect more resources that work and fewer things that do not.
The survivors were not shy about describing their experiences or how they felt about the care that they had received. With each comment from the panel or from a survivor in the audience, there was applause. Survivors craned their necks to see who was speaking and later made contact.
At most scientific meetings, I sit in rooms full of fellow clinicians, hear about the latest research, and jot down ideas for new projects. The following year, I realize that I never quite got around to initiating many of the project ideas I had explored. Oh, well, I think. Maybe next year. I shrug my shoulders and make excuses. Cancer will still be there.
At the Survivorship Forum, though, surrounded on all sides by people who have experienced cancer treatment, it is much harder to pass off our lack of progress. In the stillness of the conference room, the survivors listen intently to the presenters who articulately speak for them. They look at the clinicians and researchers expectantly. It is clear that cancer survivors can hold our feet to the fire in ways that petri dishes of cancer cells cannot. If we fail to act, the survivors will be at the next meeting. They are the real people to whom we will answer.
The following is feedback received for this blog:
I've been reading your blog for a few years now and just caught up with your survivors' expectations post. I have to say that Froedtert more than met those expectations for us. If I can sit here four years later and still think of the experience as positive, well, you must be doing something right over there.
My husband is just completing 7 months of apparently successful obliteration of a gastric adenocarcinoma that was incidentally discovered during treatment planning for an acoustic neuroma. Our initial all-consuming terror at this diagnosis crumbled by infitesimal degrees over time, and has been replaced by a genuine sense of hope not only for a future, but for one that provides an acceptable quality of life. Despite having worked at Froedtert & Medical College of WI with lung and esophageal cancer patients for 22 years, I was and continue to be stunned by the array of caregivers that immediately entered our lives to support us both during this journey. Your statement that cancer survivors (and co-survivors) in the audience bonded within 15 seconds of realizing each other's shared stigma is profoundly correct. While I always felt that I had a gift for my role as our patients' first phone contact for a thoracic surgeon - helping our patients face what they must - my ears are now intimately more attuned to the subtleties of each individual's needs as expressed "between the lines" of their communications. I feel more confident than ever that what we are offering people here goes far beyond the physiologic aspects of cancer care. We are presenting them with a community of teachers that provide the skills to go on.
