Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
Choosing to connect with other patients doesn't come without loss, but the benefit of being empowered by others makes you a better patient and more impassioned survivor.
When I was first diagnosed, I was isolated with my disease. Aside from the occasional Google search for stories, I never felt the need to engage with anyone who had colon cancer. As one of those self-described independent tough chicks, I was fine looking after myself and didn't see the need to relate my experiences with a group of strangers.
But as I settled into my life with chronic cancer, I intersected with an opportunity to connect that was unavoidable. I resigned to the idea and thought it might be one way to face my life of endless chemotherapy and scans. Within weeks of joining the group, I wondered how I had ever survived the first two years of treatment without a cancer community. All the sudden I was a keyboard away from others who understood what it was like to balance cancer and chemo; who understood how hard it was to do this with a baby on my hip, or what it was like to be the youngest in the infusion room.
Last year, I struck up a friendship with a mom who had joined the parenting group in COLONTOWN. As the weeks and months passed, we messaged almost daily over our commonalities, and most specifically the targeted therapy we were both on at the time. As I had helped others with the chemotherapy regimens I had been on, she was helping me navigate the toxic side effects of the targeted therapy I now received. We couldn't have been more opposite - a real City Dog, Country Frog. But where we came from and where we lived didn't matter when we shared this diagnosis, and I was grateful this nasty disease had forced our unlikely paths to cross.
You can send me nasty messages for daring to say there's a silver lining to the dark cloud of cancer, but I will not apologize for looking toward the light in such a bleak place. And for me, that's the greatest benefit to being part of this group of people. Because of this horrible diagnosis, I have met some of the most amazing individuals who have enriched my life and given me greater purpose. These are people I would have never met had it not been for cancer, and I am utterly better for knowing them.
Finding your community doesn't come without its hardships, and that includes losing people we often become close to. You have to believe that the benefits you gain from immersing yourself and choosing to connect will help soothe the loss that will inevitably come. I've watched many come and go over my years of being and working in the colorectal cancer world, and some losses stay with me longer than others.
I still remember turning my phone back on after I landed at my home airport and seeing a post that my Country Frog and taken a sudden turn and entered hospice. I had been traveling for a few days, and didn't realize she never responded to my last text. This must be why. When I crawled into bed that night, I sent her one last message, not knowing if she would be the one to actually read it. I wanted her to know that in the short time we had been friends she mattered to me, and I was so glad we got to fight this disease alongside each other.
Having faced cancer without community, I can't say enough about how much having peers enriches my cancer experience. I am a better, more empowered patient because of it. And I know that all the years of living with this disease and rounds of treatment are made a little easier knowing my experience can help someone walking into the infusion room for that first dose. All the trials and errors I had to go though can be passed onto the next person that sits in that infusion chair, and their experience can hopefully be more tolerable than mine.
One of the first bits of advice I offer up to patients or caregiver is to find their people. Regardless of your disease and regardless of where you find them — in a meeting room at your hospital, on Instagram because you all use the same disease specific hashtag, or in an online community created by patient support groups. Find them because there is no reason for anyone to be alone in their disease. You will be a better patient or caregiver because of it.