By Annette Hinkle
Author Anthony Brandt who leads “Cancer Journeys: Writing Our Stories,” a monthly writing workshop for cancer patients at Fighting Chance.
You’ve been involved with Fighting Chance as a director since its beginnings. You’re also a writer yourself — was this writing program your idea?
It was. I felt it was a way I could contribute without having money to contribute. I believe in the program. It does a great deal of good. My brother died of cancer, and I saw this not so much as a payback, but something I could do that was helpful.
Are writing programs for cancer patients commonplace, or is yours unique?
There are writing programs for psychiatric patients, but not a lot. There have been some studies on the usefulness of narratives to people who are either ill, have been ill or, in general, for anyone who has gone through a traumatic experience.
But it grew out of my sense that writing is therapeutic. It doesn’t have to be, but it can be. It springs out of traumas of all kinds. I thought it would be useful for some of these people to tell their stories.
Does it take some coaxing to get patients to tell their stories in the workshop?
The program is there for them – for those who want it. Not everyone is comfortable writing. I’d say most people aren’t comfortable writing. For those who are interested in it we’re there. Bill Disipio, who I work with, is on the Fighting Chance staff and he is a clinical psychologist of considerable talent and great reputation.
How does the structure of the program work?
We ask them to write in whatever form they want and they submit the writing. Everyone in the program reads it. You can comment or not. I usually make encouraging comments — I’ll suggest how to fill it out or that they think it through more thoroughly. Some of them get caught up in it. There’s one woman who writes all the time now. She’s a natural writer, and hadn’t done much before. Now she’s keeping a journal. Others write it once and they’re done with it.
There are no real requirements. They are their own audience and we encourage them to share it with their families because they have lived through this with them and it’s done damage to them too. Cancer causes anxiety. There are the costs and everything else associated with it. Many of them think ‘How could I have done this to my family and gotten sick this way?’ as if it’s something they could have controlled.
Do you find that there is a specific time in the journey when people are ready to share their stories of battling cancer?
Usually it’s later in the process. People are more comfortable writing about something they’ve been through rather than something they’re going through. You can see the whole and make it into a story. The real advantage to this kind of narrative is it does put it into a story, and once it’s there you can manage it. It puts it at a distance from yourself. It’s still your story, you own it in a way, but when you’re being shuttled from doctor to doctor, hospital to hospital, you don’t own it. Once you write it out it becomes part of you and it’s something you can always refer back to and share with others. You also have the other patients to share it with. There are all sorts of cancer but just the one experience.
Do the patients ever read their work aloud in the group?
Sometimes they read aloud. And sometimes they cry. They have different reactions. We’re all sympathetic. You have carte blanche here.
What are the stories that people choose to focus on?
Well, there is no single type of story that they tell. One guy told the story of his attitude through the whole thing and how he kept his spirits up — by cracking jokes, being positive and leading as normal a life as possible while treatment was going on. His was a triumphant story.
There was a woman who, just a month after her husband died suddenly, found out she had breast cancer. She was hit with all this grief and had not been married that long to the love of her life and now she’s sick. She has a lot to deal with. She’s full of questions – partly ‘What’s it all about, Alfie?’ questions, but also questions like, ‘Do I get remarried?’ ‘Where do I find someone I can trust and love again?’ ‘How do I live my life and how do I deal with all this?’
What do you think the writing does for the patients themselves?
Mostly they say that it clarifies things. When you have to explain something, you have to first explain it to yourself, which you then transfer to the writing.
How do you go about coaching the writers?
There was one woman who had so much happen to her, she didn’t know how to begin. I said make a list of everything that has happened to you. She couldn’t do it. She was still in treatment and in trouble.
The thing about cancer, you never feel you’re completely free of it. It’s a spooky thing and you’re never sure. So often it comes back. All these people have to deal with that for the rest of their lives. In a way, they can say you’re cancer free, yet it haunts you. You don’t feel cancer free.
Right now, the patients’ stories can only be read by Fighting Chance members in an on-line blog. Do you have any plans to share the writing with the wider community?
Ultimately we will collect enough stories and put them in some sort of publication. Some of these stories are pre-existing and go back to Fighting Chance’s early days when a trained sociologist answered questions on the website and would take telephone calls from people all over the country. She would get these long stories of people telling her everything that happened. I thought when they started happening, its got to be a book. But now they’re coming slower because we don’t do that service anymore. [In making something like this public] there are all kinds of liabilities, so you have to be careful.
Has this program changed you in the process?
I can’t honestly say it has. I’m a good guy. I’ve always been sympathetic to people. It hasn’t made me more sympathetic. I’m too old to change anyway.
“Cancer Journeys: Writing Our Stories” will be offered next on Monday, October 10 from 4 to 5:30 p.m. at Fighting Chance, 34 Bay Street, Suite 201, Sag Harbor. The group meets the second Monday of every month.