L’chaim, by Brendan Ogg
Feather rug, soft bed of matted grass,
Why did I question this place of endless beauty—
to my friend, in weakness?
Where was my heart before this time?
Now I feel it in my breast.
Put your hand there, fingers spreading from the palm,
And feel the warm, insistent pulse.
Published by Finishing Line Press
by Jackie Ogg, Caregiver
For our son, Brendan, being able to talk, joke, and even cry with friends about his cancer was a mainstay of the support he needed. During the 14 months that Brendan battled cancer, his friends were at his side, which necessitated their many trips home from colleges near and far and junior year abroad locations across the map. We were all blessed to have witnessed these young people come together to be there for Brendan, and to be there for one another.
What we came to learn is that for most AYA cancer survivors, friendships fade rather quickly. Working with Hospice Caring, Inc. and the Smith Center for Healing and the Arts, two Washington DC area organizations supporting those with cancer, we’ve been able to develop some strategies for strengthening the bonds of friendship – from diagnosis, through survivorship and onto end of life.
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Through conversation with AYA survivors in DC and at Stupid Cancer, two types of friendship networks were discussed:
- Friends you have when you are diagnosed
- Friends you want to get to know after diagnosis – other cancer survivors
For Brendan, and other younger AYA survivors (15-25 years old) we talked to, the priority was to get done with treatment and get “back to normal” as soon as possible. Seeking out new friends – other survivors – was often just plain awkward, especially early on in the cancer journey. One young survivor noted, “Cancer isn’t an automatic connection. Chemistry matters.” The desire to connect to other AYA survivors was important to this age group, it just came later.
For the older AYA survivor (25-39 years old), the focus was on finding others who were 2, 5, 10 years into survivorship with their type of cancer. As one survivor put it, “I want to find my mirror.” For this group, getting back to normal meant finding a “new” normal sooner rather than later. The importance of the friends at diagnosis was not minimized – in fact they were a source of both joy and pain – especially for those who were parenting, married or working. They needed current friends to help manage logistics of disease, transportation to treatment, carpool duty for kids, pet sitting, grocery shopping and cooking.
Many young people 15-39 live in one place for a few years, then onto another as work, school or love opportunities arise. Social media makes it easy to stay connected to friends from all over. Looping out of town friends into the support network for the AYA survivor is critical and social media can be a big help, with these simple precautions:
- Remember that this is the AYA survivor’s story. Public posts from friends should protect the privacy of the survivor and any details they have shared.
- Seeing friends and family getting along with their lives and being successful can be difficult for the AYA survivor. Be thoughtful when posting about the big party that was missed due to a hospital stay.
- Social media can be a great tool for the survivor to keep in touch with people but if they do not post for a few days, folks get worried that the survivor is not doing well. Text or reach out to the AYA survivor with a simple “Hi – how are you today?” without showing your panic.
- Leaving motivational messages alluding to survivors’ journeys are great. Who doesn’t like to be told they are strong, beautiful, and an inspiration to others?
Cancer changes the tide of life for the AYA survivor, it’s just that no one knows exactly where the tide is taking them. For friends who want to be there and be helpful, the message from survivors is loud and clear: Be ready to go along with the changing person, the changing tide. Some helpful reminders include:
- treatment is not the end of the journey
- the effects of treatment as well as the specter of recurrence linger
- cancer impacts everything – career, finances, social connections, love
At the end of the day, it’s more important to reach out than to fear saying or doing something wrong. If you feel you’ve offended in any way, apologize. Keep the lines of communication open. Your friend needs you.
Understanding what the AYA needs from their friendships is the first step. Step two is creating programs and resources friends can access to strengthen this critical piece of the support network for the AYA. Working with Hospice Caring, Inc. and the Smith Center for Healing and the Arts, I look forward to doing just that. To learn more about this project, please contact me at firstname.lastname@example.org.
Jackie has an MSW and has worked for the past 30 years in the field of social services bridging direct service, philanthropy, and community engagement. She is currently with Catholic Charities of the Archdiocese of Washington where she serves as Director of Family Parish and Community Outreach. In 2010 Jackie and her husband Clay lost their 20-year-old son, Brendan, to brain cancer. Brendan was an emerging writer and took part in a poetry workshop at Smith Center for Healing and the Arts. The work he created is included in Brendan’s book of poetry, Summer Becomes Absurd, and became the inspiration for a number of community art works including Encircled, exhibited at the Joan Hisaoka Art Gallery.