Page 53 - Reader's House Magazine Issue 53

people affected by cancer, including promi- nent specialists, even an end-of-life doula who speaks to what everyone over the age of 18 ought to think about and plan.
As a reader, I am most rewarded when I want to reread a sentence just to enjoy the rhythm of the rhetoric or a perfectly poignant description. That’s my goal in my writing,
to create an enjoyable read, even when the subject is as serious as cancer.
Each chapter reflects a theme I have lived. For example, I often hear “but you look fine.” While well-intentioned, it can feel like your symptoms and disease are discounted. I re- member feeling like a cancer “imposter” with my waist-long curls next to dozens of patients donning headwraps and wigs in a leukemia waiting room. I centered an interview on this common experience so it is a part of someone else’s story, in this case, Michele.
Though chemotherapy, exhaustion and missed social gatherings were a part of her regular routine for years, two of Michele’s closest friends recently made comments that had her trying desperately to keep her raised eyebrows from freezing in place. “You are lucky you have never really felt bad,” is the paraphrase she describes. “These were days that I didn’t even want to get dressed . . . or get out of bed,” she recalls thinking. Then she was hit by the common denominator. She
Ruth Fein’s powerful storytelling and tireless advocacy exemplify compassion, resilience, and the ability to inspire and empower others.
never explained, even to her besties, how bad she was feeling.
What other themes do you address through the stories in your book?
I think like a patient. I question like a journalist. I write to educate, empower and enlighten. My work as a freelance writer crossed over to patient advocacy when I first wrote about myeloproliferative neoplasms (MPNs) and my personal story in a piece for The New York Times in the middle of a raging pandemic. Hundreds of patients, family mem- bers and even practitioners thanked me. They were grateful to finally have an understandable piece they could share which explained the rare cancer they awoke to every day. This is when I realized the gap in knowledge, under- standing and resources. So, I began to report for media outlets with broad cancer audiences. Others labeled me an advocate, as I was a patient-centered informant. When I cover a story or write a patient or researcher profile, I approach it with the skill of an interviewer and the inquiring voice of a patient.
As a patient representative on the National Comprehensive Cancer Network’s clinical guidelines panel, what key changes have you advocated for to improve patient care?
It is humbling to be the only patient mem- ber of an esteemed panel of 32 physician/ scientist experts. I am happy to leave as a legacy one addition to the recommendations for physicians treating MPN patients. that can affect quality of life. It is now prominently recommended that physicians recognize this, regularly evaluate MPN patients for emotion- al/mental health, and offer support services as needed.
Through the global webinars and podcasts you have hosted, including “The Other Side of Cancer,” you engage with a wide audience. How
do you address topics and ensure that speakers’ content remains relevant and supportive for cancer patients and their families?
I am involved in multiple patient groups so I hear what is on their minds, what they want to know more about, where the gaps are in information. When I ask questions of experts, I am not hesitant to push for simpler explana- tions. I often ask them to explain things as if they were speaking to a school class of 11 and 12-year-olds.
With your extensive background
in ghostwriting, including medical textbook chapters, how do you balance maintaining the original voice of the author while ensuring the content is accessible to a broader audience?
Ghostwriting can take many forms. My formula is to interview the expert whose story or expertise I’m sharing, with additional re- search as needed. In one case, I travelled five hours every other week for six months to meet with the author. I then wrote a book of his stories, in his voice, with my improvements to improve interest, organization and quality.
Ruth Fein’s The Big C2 is a compassionate and insightful exploration of life with chronic cancer. Blending personal experiences, interviews, and expert perspectives, it sheds light on navigating this complex journey. With its hopeful and empowering tone, it’s an invaluable resource for patients, carers, and healthcare professionals seeking understanding and connection.
Considering your experience in both writing and patient advocacy, what do you believe are the most effective strategies for conveying complex medical information to the general public?
Ask questions patients want answered. Q&As are a helpful, relatable format. If the reader can’t explain what they have read to a 12-year-old, it is too complex.
What advice would you offer to aspiring authors who wish to combine their personal health experiences with professional writing to advocate for others?
Consider what you want the reader to take away. Then, what format will work best to serve that purpose. Is it a memoir meant to inform or inspire others? Is it your own story combined with others’ voices or expertise?
Is a “how to” or academic approach best or creative non-fiction? Make an outline of your themes and take-aways. Speak to people in your intended audience and ask them what might make the book most meaningful.
There is no right or wrong way to live with cancer, or to support someone you love with cancer, or for that matter any chronic illness. Each story is intended to leave the reader with an aha! moment. Inspiration is between every line, sometimes with a chuckle and a tear on the same page. Advocating for yourself can be life changing (even life saving); dealing with the uncertainty of a chronic cancer; creating a mission-driven life alongside a cancer journey; the underrecognized physical and emotion-
al effects of a cancer treated or cured years earlier. Scientific advances mean more people are living with cancer. Changing how we
talk to and about these cancer “thrivers” is an omnipresent thread.
How has your 40-year career as a health and life science writer influenced your approach to patient advocacy, particularly for rare blood cancers?
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