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When Anna was diagnosed with acute myeloid leukemia in 2018, she was a junior in college. She played on the school’s soccer team and was active in student government.
With her diagnosis, the focus of the soccer player’s competitive drive has changed. Instead of outscoring a rival on the field, she now looks to a different team, her care team, to help her stop leukemia cells from advancing.
It has been a rough journey. Her form of leukemia requires aggressive treatment. It has come with mighty side effects – exhaustion, nausea, and serious infections.
“If it’s not the cancer and chemo, it’s the depression,” Anna said.
Her family is caring and supportive. Her care team includes a psychologist and a social worker. But even with this network, the experience has been overwhelming at times.
Anna, who is majoring in psychology, needed another outlet to express her feelings. So she began writing in a journal to voice her deepest, most private thoughts.
“I can speak into existence what I’m feeling,” Anna said. “Once it’s in my notes, I said it. It’s out there. I’m not burdened with it anymore.”
Writing down your thoughts and feelings – whether on paper, computer, or other device – may help you process and deal with them. Journaling can be a way to express your thoughts and help you put them into perspective. Sometimes patients and survivors don’t want to share certain things with others. A journal can help you get those emotions out.
One type of journaling is called therapeutic journaling. It involves recording thoughts and feelings about personal experiences, said Shilagh Mirgain, PhD, a psychologist at the University of Wisconsin. Writers can reflect on their experiences.
“It is writing to work through issues and concerns so we come to a place of acceptance, peace, and clarity about how to move forward,” Dr. Mirgain said.
In many cases, it can help people make sense of things and gain a deeper understanding and mastery of how they feel.
For example, Mirgain remembers working with a patient who realized through her journaling that there was nothing fun associated with chemotherapy. She began to dread those sessions.
So she created ways to link enjoyable activities to chemo days such as lunch out with a friend, shopping, or donating to charity.
Writing can also help you put things in a new light, said Mallory Casperson, chief executive officer (CEO) of Lacuna Loft, an online resource for adolescent and young adult cancer survivors.
“Journaling can be the act of facing something you may not have faced before – something you may have wanted to share but couldn’t share with your friend group,” Casperson said.
For example, Anna writes about her reactions to things that happen to her --sometimes thoughts she doesn’t care to speak out loud. Journaling allows her to feel raw emotions and process them instead of keeping things bottled up.
“If I didn’t write it down, I’d be cheating myself from feeling it,” Anna said. “I need to write it down. I can’t let go of the feeling until I do.”
She has kept a journal since middle school, so it was natural to continue it.
But you don’t have to have experience keeping a journal to start one, Anna said. And you don’t have to keep a traditional bound paper journal. “Put it on your phone. Put it on a sticky note. Just get your feelings out,” Anna said.
Some studies show a benefit to writing versus typing, but we live in a digital world, Dr. Mirgain said. “There are apps and programs, even opening a Word document and typing in it. Writing it out allow us to process. It’s better to write in some format than not all.”
Anna keeps a bound journal, but also uses the Notes app on her iPhone if she doesn’t have her journal with her.
“I don’t want to forget it so I write it down in my notes. My notes are sacred. The inner workings of my thoughts are in here.”
Cancer survivor Joanna Barker used Google Docs to chronicle her experiences. She took her iPad and keyboard with her everywhere.
“I kept my iPad in my backpack and would pull it out when I wanted to write,” Barker said. “At chemo sessions, at night. I would write late at night. Chemo keeps you up at night. Sometimes I wrote during the early hours of the morning.”
She kept a personal journal of mostly prayers. In another journal she documented her experiences. This journal was later turned into a book titled So This Is Cancer? Words of Wisdom and Epic Tales from a 20-Something with Cancer.
Writing may seem daunting, but it doesn’t have to be.
Don’t worry about it being grammatically correct.
You can write for as little or as long a time as you want to. Write about whatever you are feeling.
“Your first thought is probably your best thought,” Casperson said. “Just go with it. Set a timer for 7-15 minutes. Let it be what it needs to be at the time.”
If you feel a sense of relief after journaling, that’s good. However, if you have a flood of emotions and you feel worse then you should stop and talk to a member of your care team.
Patients have many journaling options to choose from. Here are a few to consider.
Shadow’s Edge is a gaming option. It was inspired by the journaling book, Digging Deep: A Journal for Young People Facing Health Challenges by Rose Offner and Sheri Sobrato Brisson.
Brisson is a cancer survivor and holds a master’s degree in counseling psychology. She and her team developed Shadow’s Edge, a free mobile game that encourages teens and young adults to express their feelings about the impact of illness on their life.
“Sometimes journaling can feel like homework to young patients. Others have trouble starting to write because they don’t have the words,” Brisson said. “We give players tools to make graffiti. Just like real-life street artists, these young people have something to say. That needs to be heard.”
Shadow’s Edge is a place where patients can openly express their feelings, without fear of how that expression might affect their loved ones.
“Sometimes young patients keep their feelings inside because they don’t want to appear weak or to make their parents to cry,” Brisson said. “I wanted to create a place where they could be themselves.”
Shadow’s Edge is also a space for people who don’t consider themselves artistically talented. Players can use ready-made stencils to create their graffiti. Then they can enhance it with words.
Shadow’s Edge includes a platform for players to share their graffiti with other players. “It is a way for young people to connect in virtual space--to support one another without risk of judgment,” Sheri said. Shadow’s Edge is available for free download for teens 13+ on the Apple App Store or Google Play.
Lacuna Loft, a young adult cancer nonprofit organization, offers an online journaling program that provides weekly journal prompts.
Lacuna Loft also has an online, 8-week, creative writing workshop called Unspoken Ink: Creative Writing Workshop.
Each workshop has a weekly writing night through online video chat. Participants need a microphone headset and webcam.
The facilitator provides a writing prompt. Sometimes it is about cancer and sometimes not. The facilitator and workshop writers create a story over a set amount of time.
People can choose to read writing out loud. The group reflects on the writing. Everything is considered fiction. Other writers don’t respond to the writer as a support group may, but keep the focus on the writing.
“All work is considered fiction,” Casperson said. “It gives people the freedom to explore their own story. You can write in third person. You change the character if necessary.”
ACCO has 2 free journal resources – 1 for children and 1 for teens.
Cozy Cares Journal is for children. It includes drawing from the journal’s mascot: “Cozy the Port-a-Cat.” It includes writing prompts designed to help children express thoughts during diagnosis and treatment.
Examples of writing prompts include: "I am special because …” or "When I’m bored in the hospital my family and I …” or "When I’m feeling sad it helps to …”
The Cozy Cares Journal also includes word-find and drawing activities.
Dance in the Rain is designed for teens. Along with writing prompts, it has emojis and doodles for days when patients don’t feel like writing.
Your care team may have additional recommendations of resources.
Writing down your thoughts and feelings – whether on paper, computer or device – can help you deal with them. It is a way to express your thoughts and can help you put them into perspective.
Reviewed: October 2019