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The “Write” Stuff: How Creative Expression Comforts Cancer Patients and Caregivers

acc writing a life program

In March 2018, Jessica Mammarella came to Penn Medicine for a mammogram and left with a breast cancer diagnosis. The ensuing months were filled with biopsies and scans, surgeries and reconstructions, chemotherapy and hormone therapy, and even an additional diagnosis of primary hyperparathyroidism. Through it all, she had the support of her family and friends — but like many patients, she needed additional support.

“I felt so fragmented. My doctors and nurse navigator and social workers were all wonderful, but medical professionals are trained to manage cancer. This new world and identity are thrust upon us. We have to work out how to be a patient ourselves,” she said. While counseling was helpful, she wanted to talk to someone who really understood on the deepest level what she was going through, but she couldn’t just sit down next to another patient in the waiting room and open the floodgates.

Then, six months ago, the Patient and Family Services team at the Perelman Center for Advanced Medicine linked Mammarella with exactly what she needed: The Abramson Cancer Center (ACC)’s Writing a Life program.

A Lasting Program, a Lasting Difference

acc writing a life program

Now celebrating its five-year milestone, Writing a Life has been an unprecedented success and has become the ACC’s longest running cancer support program.

Over the past two decades, researchers have found evidence that individuals who have experienced severe emotional stress or trauma can benefit both physically and emotionally from expressive writing. By exploring their deepest thoughts and toughest emotions through a creative outlet, individuals can gain a sense of autonomy over the overwhelming or uncontrollable event that has shaken them — such as a cancer diagnosis. For example, while Mammarella continues to feel as though she is navigating a churning sea, with fears of recurrence and uncertainty for the future threatening to pull her under, “carving out time to write about what’s swirling in my head” has become a vital part of her self-care routine.

“I’d heard about different writing programs that were developed to help patients express themselves in a safe environment, and I thought that sounded like something valuable we could offer,” said oncology social worker Sandy Blackburn, MSW, LSW. She shared her idea with Heather Sheaffer, DSW, LCSW, director of Patient and Family Services, and with Sheaffer’s enthusiastic buy-in, Blackburn organized the program with fellow social workers Laura Kotler-Klein, LCSW, DSW, and Matt Stevenson, LCSW.

Inspired by University of Pennsylvania President Amy Gutmann’s call for collaboration across departments and institutions, Blackburn reached out to Al Filreis, PhD, a professor of English and director of the Kelly Writers House. Not only did Filreis offer up the beautiful Victorian house as a location to conduct the workshop, but the English department’s associate undergraduate chair, Deborah Burnham, PhD, also volunteered to facilitate. “Other cancer centers might encourage informal journaling, but our unique partnership with the university sets us apart. To have our patients be guided by a lovely, creative mind like Deb’s…. It’s beautiful. It’s perfect,” Blackburn said.

Over the past five years, the program has expanded. Participants who may not be able to travel to the Kelly Writers House now can attend sessions at the Perelman Center for Advanced Medicine, and social worker Courtney Bresler-Nowak, MSW, LSW, has also joined the Patient and Family Services team as a co-facilitator. While there are often new faces — “Some people come who have been in remission for ten years, and once a patient was even wheeled over from an inpatient unit,” Stevenson said — the program’s longevity has also allowed several workshop veterans to return again and again to connect with people who have been through similar experiences. Though Mammarella recognized at her first session that many regular attendees had formed a tight-knit group, she was “floored by their openness” and found herself welcomed with open arms.

And while the team was initially concerned that the program’s most significant change — inviting caregivers to join during special evening sessions — might challenge the intimate, safe community the patients had built, their worries quickly abated. For Kotler-Klein, “It’s almost like a Quaker meeting,” brimming with unconditional support and kindness for patients and caregivers alike, regardless of background or where they are on the journey.

“We always thought, ‘Let’s give the patients their space,’ but the beauty of the mixed workshop is that caregivers can connect with caregivers; patients can bond with patients; and caregivers and patients can get a better glimpse into their loved ones’ experiences. Beautiful things come out of that environment,” Blackburn said. Mammarella agrees. The first time she sat in on a combined patient/caregiver session, she couldn’t stop thinking about bringing her husband with her to the next one.

Providing a Portal to the Authentic Self

acc writing a life program

The team is committed to creating a judgment- and pressure-free zone. Everyone is encouraged to introduce themselves at the opening of each session and to describe their mood using the Feeling Wheel. The goal is to help attendees break out of the standard, “I’m fine” responses that they might feel compelled to give to family members or friends. “It’s an efficient way to get an accurate idea of where everyone is at, and it helps to center us as a community,” Stevenson said.

Burnham — who is teaching a Literature and Medicine course this semester — is always on the lookout for poems, memoirs, articles, and anthology pieces related to illness that she can share with the group. “In the early days, the prompts tended to be quite upbeat, but I felt that we should really be more upfront about the fact that these people are dealing with the realities of cancer. Some of them get pretty gritty, but I’ve found that the tougher the prompt, the better the response,” she noted.

She aims to find pieces that will resonate with both patients and caregivers, but participants are free to write about whatever they want during the quiet writing period. Some opt to write poems about how the meaning of time has changed for them, while others write narratives about their most challenging medical experiences. One patient has been working on a Letter to the Editor for The New York Times, and another, Burnham notes, “always writes really adorable and cleverly rhymed poems.” And when one participant doubted her writing ability, she was assured that everyone is a writer regardless of experience, and was encouraged to just get her thoughts down through a simple list.

Through it all, a social worker is always present to offer emotional support if needed. After finishing their pieces, the group reconvenes, and everyone is given the chance to read their work aloud, if they wish to. While there is no obligation to share, the entire two hours are always filled. “It is an honor to listen to everyone tell their stories,” Mammarella said. “Not only is their writing beautiful, but it creates this deep intimacy. To listen to their suffering and to see my own in it…. This group gives you the space to feel like yourself and to get to that essentialness of the experience.”

Some works touch on broader themes like the fear of losing a partner, while other writers choose to reflect on more concrete details, such as the patient who recently realized after getting her shoes muddy that she won’t need a new pair — and indeed she won’t need to go shopping anymore. “That one stayed with me for a while,” Kotler-Klein said. “It gets very deep, very fast. But while it may take participants to places they didn’t expect to go, it’s a safe place for them to express those feelings and fears. The writing is a portal to the authentic self.”

“We laugh and cry in every session,” Blackburn added.

More Than a Support Group

acc writing a life program

Blackburn recalls a patient once quipping about the Writing a Life program, “Support group? Ha! I’d never go to one of those. But I like this!” She chuckles; after all, a supportive environment is key to the workshops. Still, the program’s long-term success indicates that the team is different from the average support group. New prompts for each session keep the program fresh, and new participants with unique perspectives often attend. But there’s something more to this program, which combines group activity and individual expression, community and private vulnerability, nurturing discussion and personal reflection.

“I kind of think of it like yoga,” Mammarella said. “Sure, you can do yoga by yourself at home any time you want. But if you go to a class, it’s a different experience because you’re doing it with other people. You can write by yourself, but sharing it with a group and listening to other people’s stories too — I didn’t expect it to move me so much, but the workshop gives me exactly what I need.”

Kotler-Klein recalls another attendee echoing a similar sentiment: “He was a psychiatrist of many years, and I remember he once told me, ‘Wow. The writing gets right to it.’” He was correct. While some support groups are extremely helpful and allow regular participants to build a good rapport, others may not touch on the hardest subjects and “may not focus on what’s meaningful” because attendees are nervous or don’t feel safe to share. That’s simply not the case for Writing a Life.

Patients often reflect on how much the practice of writing about and sharing their most vulnerable moments has helped them come to terms with their diagnosis and the daily challenges that come with it. Caregivers have similarly expressed that the workshop experience was humbling, informative, and meaningful. After every session, the attendees always chat amongst themselves instead of leaving immediately, and many find themselves continuing to write when they return home. One participant even noted that being a part of the Writing a Life community had saved them from suicide.

And the impact of this program continues to spread. Three anthologies have been published by the Kelly Writers House containing the work of the patients, and the next will be the first to include caregivers’ work as well. The team has also shared the development process for the program and their findings at three national conferences; Burnham even led a mini writing session for the attendees of the Association of Oncology Social Work’s Annual Conference. All of these presentations have earned positive responses, and the team hopes that others will take a page out of Penn’s book.

“People take vacation time to come. It’s become a consistent part of their lives that they can look forward to,” Stevenson said. “It’s a powerful experience — for all of us. We’re there to witness these firsthand accounts, and we get an insight into their souls. I think it’s helped me become a better therapist because I can use my time at these sessions to convey to the patients I work with that they’re not alone.”

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