The road from caregiver to advocate

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The road from caregiver to advocate

Many people don’t know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.

These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I’ve ever had and at the same time, the most rewarding.

When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven’t.

Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it’s been a long road of advocacy.

I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.

I do have a few pieces of advice:

Take care of yourself.

While you are caring for the life of someone your love, don’t forget to take care of yourself. You won’t be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone’s life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don’t forget to take care of yourself. You’ll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.

Find the unmet need.

In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I’m not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn’t a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.

Connect with others.

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