Meet Faye
This story comes to us from Rachel Santarpia, Registered Nurse and co-founder of the Care Advocate Network.
As a clinician, I am often asked to help out family and friends. Most clinicians get a random text about a rash or cut, asking what they should do about it. A quick exchange, and then we’re moving on in life. However, in January 2022, I received a message from a relative asking for advice about an oncology doctor in the area. What started as a simple question became a year-and-a-half-long journey full of twists and turns, heartache and triumph, and an unexpected partnership. You see, Faye experienced what many people do: A life-changing diagnosis with no idea what to do, where to go, who to talk to, or how to proceed.
During my initial exchange with Faye, it became evident that she was shocked, afraid, confused, angry, frustrated, and frankly lost. She needed help, and as a nurse, I felt it was my duty to support her. How could I watch her struggle when I knew it was within my power to help? So, we formed a plan. I would virtually attend the appointments with her doctors, ask the doctors her questions (and mine), translate their answers into words she could understand, and be her support person throughout this experience.
At first, things were a little rough. Imagine you are at your doctor’s appointment while on the phone with a nurse. The doctors were initially resistant, and I was unsure if I could help. However, the doctors quickly learned they could talk directly to me while Faye listened. I could cut to the chase and ask the clinical questions that helped me understand her options, and then I could take the time to translate that into language that Faye could understand and, more importantly, what that meant to her and her life.
“I promised Faye that I would not feed her any fantasies; I would keep it real no matter how hard it was to say or to hear”
Let’s pause momentarily and clarify that Faye is intelligent and capable. She is not feeble in any way. But when someone tells you your choices are an Ileal conduit or a neobladder reconstruction, you may need to phone a friend to discuss. And so, we went on as a team navigating this life-changing event together.
It began with chemo and radiation discussions. Discovering that some clinicians are nonchalant about throwing out these complex concepts was profound. They are numb to the impact their statements may have on a patient. In Faye’s case, the big decision was to have a bag of urine taped to her abdomen that needed to be emptied throughout the day, or she had to put a tube inside her body (catheter in her urethra) to drain the urine as she went through her day, two crummy options. We discussed the pros and cons of each and reviewed the clinical outcomes and the functional impact each would have on her daily life. We investigated alternative options and learned of the Indiana pouch, which fit her needs better. When the doctors tried to sway her, I stepped in to advocate for her needs and wants. When the doctor did not respond promptly to her outreach, I would reach out to the doctors and nurses to ensure she was heard.
There were times when she seemed to be losing hope. She was exhausted, felt sick, and wondered why she was fighting this hard without any guarantees. We had some hard conversations about the reality of the unknown. I promised Faye that I would not feed her any fantasies; I would keep it real no matter how hard it was to say or to hear. We walked through the darkness, motivated by the knowledge that the only way to know was to try. She was amazing and resilient, always finding the strength to move forward.
Faye says everyone should have an advocate, but the relationship between patient and advocate benefits both parties. Faye’s resilience and feisty spirit have guided me as well. I now have made it my mission to be a patient advocate. That is the reason the Care Advocate Network was founded. Faye was patient number 1, and I have advocated as much as possible since that experience. Together, We Did, Together We CAN.