Caring for a Loved One with CCA: A Son’s Perspective

At the 2022 Cholangiocarcinoma Foundation annual meeting, Ambuj Srivastava shared his experience as a current caregiver for his dad who was diagnosed with stage 2 extrahepatic cholangiocarcinoma (CCA). Ambuj lives in Toronto, Canada, with his wife, daughter, and parents. He is a mentee and patient advocate with the Cholangiocarcinoma Foundation.

Following a diagnosis of stage 2 extrahepatic CCA in September 2019, Ambuj’s father underwent surgery, chemotherapy, and immunotherapy. During that time, he “dealt with many monthly ER visits to the hospital due to blockages or infections.”

Ambuj described the initial days following his father’s diagnosis. “I was multitasking at work and home, talking to multiple specialists, coordinating meetings. There was a whole lot of information to process, stress, anxiety, confusion—it all became quite challenging,” Ambuj said. “We went through a rollercoaster of emotions. It was difficult and caused many restless nights.”

According to Ambuj, the caregiver role is a dynamic one, encompassing caregiving, care living, and care loving:

• Caregiving is “a privilege for providing or taking care of a loved one during their most precious and maybe limited moments.”
• Care living is “changing lifestyle, expectations, and boundaries for what you can and cannot do.”
• Care loving is “self-care, which is usually given the least priority, but it is the glue that will keep you and your responsibilities together with a good support system in place.”

The biggest role is to advocate for the needs of the loved one, according to Ambuj. “It’s important to ensure that your loved one feels like they are in control of their health decisions,” he said. “Empower them to speak up and voice their concerns.”

Ambuj shared some pearls of wisdom that have helped him navigate his caregiving journey:

• Define limits. Caregiving is a priority and balancing act that can become challenging. His advice: Plan for 1 day at a time.
• Create a support system. This could include family, friends, support groups, managers, coworkers, mentors, social workers, and palliative support personnel—anyone who can provide physical and emotional assistance. Palliative support is important and does not necessarily mean the end of the road; it can provide many benefits to patients and their families.
• Avoid caregiver burnout by assessing and managing with an appropriate support system.
• Adopt the right mindset because “the first line of treatment is attitude.”

Ambuj recounted how his initial thinking about caregiving changed drastically after this experience. “I thought it was something that you would do for your loved one without any titles or any expressions or words,” he said. “But I now understand the importance of verbalizing and acknowledging the role of a caregiver.”

Ambuj concluded by saying, “Caregivers are like sidekicks to the real superheroes of this journey, Robin to the Batman. Superheroes are cool but I think sidekicks are pretty badass, too.”