Engaged Patient

The Edge of the Known World, Revisited

Editor’s note: Nearly one year ago, I wrote about Adam Hayden’s experience of long-term survival of glioblastoma – brain cancer – for which he received a prognosis of 15 to 18 months in 2016. “Long term” survival is relative; at six years, Adam is now even farther out on the edge of the “known world” than he was in the post below (originally published in August 2021). On his own blog, Adam has recently reflected about how his identity and his cancer are intertwined: “I guess it’s both all about the brain tumor and has nothing to do with the brain tumor at all. There is no cleaving the tumor from the person, while it is also true that a person isn’t their diagnosis.… I’m asking myself to do the impossible: Have a brain tumor but don’t let it define me. Don’t pity me but know that I’m altered more each day.”

Adam Hayden has lived with glioblastoma for more than five years and in that sense is living at the edge of the known world. Only 7% of patients with this form of cancer live as long as Hayden has; he is an N of 1. Most physicians haven’t cared for glioblastoma patients in Hayden’s circumstance; few other people have had the survivor experience that is his.

Hayden describes that experience in “‘Here be dragons’: Long-term survivors like me can help map the boundaries of cancer,” a “First Opinion” essay for STAT. And he discusses the essay and national efforts to learn from long-term cancer survivors, as well as what it means to be an engaged patient, in an episode of STAT’s First Opinion podcast.

In the essay, Hayden describes a copper globe created in 1510 that supplies the dragons for Hayden’s title. The globe carries a Latin inscription that translates to “Here be dragons” and marks the place on the globe that was the “edge of the known world” at the time.

Learning from Hayden and other long-term survivors and use their experience to expand the “known world” of cancer must begin with data collected and made available for research. To begin to understand how and why he and others have been able to beat the odds, Hayden would like to see a network of long-term cancer survivors developed outside the limitations of corporate or academic organizations where databanks are often proprietary. He recognizes that “in the information age, data are currency, but patients rarely benefit from the data they legally own.”

In the podcast, Hayden describes what it’s like being an advocate and well-known engaged patient, acknowledging that there are times when he must meter his external activities for his health and the good of his family. Hayden and his wife now have three children, the youngest of whom will begin kindergarten this fall, and the disease and treatments pose ongoing challenges to his health.

Reflecting on the limitations of being considered a “patient” versus being a whole person, Hayden recommends that we all think about our health today and what may lie ahead, regardless of current health status. “For the general population,” he says, “it’s never too early to think about what the future may hold for you.…You don’t need a diagnosis to be engaged in your health.”

Hayden blogs at https://glioblastology.com/author/adammarchayden/ and is on Twitter @adamhayden.

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 165 post(s) at EngagingPatients.org

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