“A village of people” can help cancer caregivers balance their daily lives
Parenting young children has added to the already difficult task of caring for a patient with ocular melanoma, said Caitlyn Stewart, whose husband was diagnosed with the rare cancer in 2016.
Caitlyn and her husband, Phil Stewart, were busy looking after their young children, buying a house, and building their careers as a special education teacher and software engineer, respectively. The high school sweethearts were 28, lived in Philadelphia, and were in good health; cancer was the last thing on their minds.
Everything changed when Phil noticed a blind spot in his eye during root canal treatment. He immediately went to the emergency department at Wills Eye Hospital in Philadelphia. There they met Dr. Carol L. Shields, who informed the Stewarts that a mass had detached from his retina and diagnosed Phil ocular melanomaa rare form of eye cancer.
It should be noted that ocular melanoma affects five out of 1 million adults, according to the National Organization for Rare Disorders. Phil was diagnosed on a Monday. That Thursday, he began brachytherapy treatment, which involves inserting a radioactive plate into the eye to deliver a high dose of radiation to the tumor.
Isolation from friends
Because Phil underwent treatment relatively quickly and many people lack education about ocular melanoma, Caitlyn said, many of the couple’s friends were quick to assume the Stewarts might move on from Phil’s cancer diagnosis.
Other friends failed to understand the fear of cancer recurrence the couple felt every three months while waiting for Phil’s scans to return. “We were constantly waiting for that other shoe to drop…and everyone just wanted us to forget about (cancer),” Caitlyn said. As a result, the couple quickly began to feel like an “island”, Caitlyn shared, adding that during this time, “we felt very alone”.
Seeking support from the ocular melanoma community
Wanting to remedy this situation, the Stewarts went to a retreat for ocular melanoma patients organized by the Ocular Melanoma Foundation, a non-profit organization based in Washington, DC.
While Phil appreciated being able to meet others with similar symptoms, Caitlyn felt a disconnect. The other patients and caregivers at the retreat were older than them. It should be noted that ocular melanoma has the highest incidence rates in people between the ages of 70 and 80, according to the National Organization for Rare Diseases.
Hoping to find a connection with young cancer patients, Caitlyn accompanied Phil to Cancer Con, a convention hosted by Stupid Cancer, a New York-based advocacy group for young adults and teens with cancer.
Unfortunately, very few of the caregivers she met were spouses like her, and those she met had adult children. “I was still on a different island of caregiving,” Caitlyn said, “where I still had very young, needy kids, and cancer.”
Challenges of parenthood during caregiving
Caitlyn’s struggles as a primary parent while Phil was undergoing cancer treatment compounded the problem. Caitlyn said trying to take care of everything was overwhelming her. His children were three and one when Phil was diagnosed and needed constant attention and care. “I tried to take the burden of daily activities, but, really, parenting should be a (responsibility) of two,” Caitlyn said.
Phil’s cancer diagnosis also brought back memories of Caitlyn’s father, who died 15 years ago after being diagnosed with cutaneous melanoma. Remembering that her youngest brother was only 12 when his father died, she began to worry about how her children would cope with the potential loss of a parent at a young age.
Shortly after learning that Phil’s cancer had metastasized, Caitlyn learned she was pregnant with the couple’s third child. Preparing for the baby, Caitlyn explained, provided welcome relief from cancer talk and opened her eyes to the reality that she could focus on other things in her life other than her husband’s cancer. . She also learned to prioritize her own health and goals, such as making regular appointments with Phil and seeking help from a mental health professional.
Caitlyn urged fellow cancer caregivers to follow suit by living in the moment and focusing on things other than cancer. You don’t have to dwell on cancer every day, Cailyn advised, adding that trying to make every step perfect because it might be the last only creates disappointment.
Caitlyn further explained that the most important thing that helped her through her struggles with caregiving was leaning on the people in her life for support. Having a “village of people (she) can trust and raise (her) concerns with” has been crucial, she stressed, especially as childcare responsibilities and work obligations prevent him from seeing a mental health professional on a regular basis.
Finding relief with social media
After a doctor’s recommendation, Caitlyn joined a caregiver support group on Facebook where she connected with other caregivers with young children. Caitlyn felt less alone hearing the stories of others caring for a spouse with ocular melanoma while being a parent. Social media has given her valuable networking opportunities because, as she explained, “Doctors can’t give you contact information, but Facebook can.”
It also gave her a source of information when navigating ocular melanoma. Through the group, Caitlyn learned about experimental procedures, clinical trials and tips on how to get insurance companies to cover ocular melanoma treatment. This provided much-needed relief for Caitlyn. She had support in finding treatments for ocular melanoma and allies when communicating with insurance companies.
Caitlyn urged caregivers to keep looking for a community until they find one that works for them, just like she did. The most important thing she’s done on her journey as a caregiver, Caitlyn explained, is aligning herself with people who have been in her shoes.
“If the ocular melanoma community is as supportive and as willing to share as it is,” said Caitlyn, “I’m sure any cancer community would be the same. Anyone who walks (this journey against cancer) would like to make it easier for the next person who walks (this journey against cancer).
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