Intro to Advocacy: The Power of Big Voices in Small Towns

Forward from the Cutler family

Welcome to our six-part series, "Introduction to Advocacy," where we share our mother Heather's journey with you. As we recount Heather's battle with pancreatic cancer, we bring a mix of personal moments and practical advice for those just starting out or already in treatment. Our family's journey has taught us a lot about the importance of advocating for quality care, especially in smaller towns.

This series is our way of passing on what we've learned to help others navigate the ups and downs of this challenging path. Join us as we celebrate Heather's legacy and support everyone facing this journey.

If you or a loved one has just been diagnosed with pancreatic cancer, you’re likely feeling overwhelmed and helpless. But you are not powerless—far from it. We’ve been in your shoes.

For nearly two years, our mother, Heather displayed extraordinary strength and resilience as she battled this illness, returning to the very hospital where she had devoted thirty-five years of her life as a registered nurse at Eastern Health to receive chemotherapy every two weeks.

Beyond her career, she was a nurturing mother, a devoted wife, an affectionate daughter, and a cherished friend, making it her mission to support others. In line with her spirit, we felt it was essential to share her story to assist those in similar circumstances. It’s what she would have wanted.

Her journey underscores the importance of advocacy in improving patient care, educating families, and fostering research efforts to enhance understanding of treatment options. Mom was never one to rock the boat and always believed in treating others with respect. She would often endure discomfort rather than risk upsetting someone, hesitating to assert herself unless absolutely necessary. But as her journey progressed, she found her voice. During one of her later hospital stays, when Eastern Health placed her and another cancer patient in the same room as a COVID patient—who later infected two others—Mom knew exactly what to do. She understood who to speak to and made it clear that she wouldn’t tolerate such negligence.

Our family had no significant health issues prior; both Mom’s parents were thriving in their nineties, and my mother rarely suffered from ailments (my grandmother insists she can’t even recall Mom catching a cold).

She lacked the common risk factors associated with pancreatic cancer. She was a non-smoker, didn’t have diabetes, a family history of cancer, or jaundice, and enjoyed a healthy diet. The only possible risk factor was her age—63.

So, when Mom called us into the doctor’s office two summers ago and our family doctor revealed spots on her pancreas and liver, our entire world came crashing down. The sound of my mother’s fearful whimper still echoes in my mind, etched as a memory I don’t know that I can ever forget. The diagnosis was Stage IV pancreatic cancer with liver metastasis. There were no tests or early detection that could have alerted her before she had already progressed to metastatic disease.

Setting aside our longstanding sibling rivalry, my sister and I committed ourselves over the next two years to grasp the latest standards of care and treatment options for pancreatic cancer. We spent countless hours sharing updates—anything from medical studies, promising clinical data, advancements in treatment options, and drug approvals—all while evaluating their relevance to our mother’s care in Newfoundland.

Advocacy organizations like PANCAN highlighted the value of being treated at high-volume cancer centers. Yet, our mother was receiving her treatment at Bliss Murphy Cancer Centre in St. John’s, Newfoundland and Labrador, through Eastern Health. Therefore, our goal was clear: we would fight for her to receive the same caliber of care that larger centre's could provide.

Our advocacy journey commenced at Bliss Murphy, leading us to pursue two second opinions via Telehealth at the Princess Margaret Cancer Centre in Toronto and eventually taking us all the way to Johns Hopkins, one of the world’s leading pancreatic cancer institutions.

We encountered many different phases—moments of tears over missed opportunities and inevitable setbacks—but the flicker of hope never faded. We compiled our gleaned insights into this guide, aiming to support others in holding onto hope. Remember, this is your battle.

Healthcare systems are overwhelmed and understaffed, and even the best healthcare workers can make mistakes. There are hundreds of others living with cancer actively receiving treatment, so oncologists are busy. Unfortunately, this can affect the quality of care you receive.

Smaller provinces, such as Newfoundland, often lack healthcare resources and experience longer wait times, but accepting this reality can empower you to advocate for yourself. (National Center for Biotechnology Information, 2023). Multiple studies have verified that patients receiving care at high-volume cancer centre’s experience improved overall survival and lower mortality rates compared to those treated at low-volume centre’s, even when facing more advanced cancer. (Mishra et al., 2021).

If high-volume centers are out of reach, advocating for your needs becomes essential. The aim here is to leverage your voice to align your treatment with that available in larger centre’s across Canada. You don’t need to be a healthcare professional to assume an active role in your own care.

Mom often expressed her gratitude for having us by her side. We helped in any way we could. All our family members huddled around my Mom and went out of their way to support her in any way possible.

When you advocate for a parent it’s impossible for it not to be deeply personal. So, many parts of this series will be personal. We’re offering you a first-hand account of our experience.

Despite being a nurse for thirty-five years at Eastern Health, she always struggled with the overwhelming amount of information. Even while undergoing chemotherapy, her ability to retain details seemed hindered; nevertheless, she miraculously managed to be alert for her favourite TV show, Jeopardy, at 8:30.

It shakes me to my very core to announce my Mother’s passing on May 5, 2024. Losing her to this life-changing disease has been the most difficult challenge I have ever faced in my life; it's given me a profound awareness of how precious and unpredictable life can be.

It’s been almost two months since I last saw you, Mom, and my world will never look the same. Things were so good for so long that there were times we all forgot it was still there.

Lastly, for new caregivers struggling to find the best way to help, you’re already helping. We all contribute in different ways. My sister and father were hands-on, especially during Mom’s final days.

The term “Caregiver” may sound foreign at first, but when your loved one genuinely feels awful, you’ll quickly find yourself caring. 

Chemo can knock you out, make you feel unpleasant, and change family dynamics. You’ll want to keep things familiar for your loved one, but remember that being there for them is the most important thing.

We won’t lie - your life will change quickly, no matter how you approach this battle as a patient or caregiver. But know that Team Heather is with you and cheering you on every step of the way.

Continue reading part two of of Intro to Advocacy below.