Crowdsourcing Cancer (Part 1)

If you prefer listening to reading, an audio version is available below the text.

I don’t remember what the doctor said when she told me that I have cancer.  I don’t remember the words.  I do remember feeling a cold small panic that grew warmer, then larger.  A panic that urged my mind and heart to race and then to stop, simultaneously then sequentially, all at once then not at all.  I was alone when I got the diagnosis.  Alone as in an independent, single, childless adult.  Alone as in the person I usually relied on was myself.  Alone except the chorus of well wishers who closed conversations with “anything you need, please let me know.”

Everyone I knew or had heard of that had grown seriously ill had options I didn’t see for myself. At 47 years old, I didn’t have a spouse or adult children to turn to. My mother was unwell, my father lived far out of town, and my only sibling had school-aged children to raise in the face of his own illness. I knew I couldn’t do this alone but I also knew my single lifestyle meant I had to reframe the caregiver concept. So I responded to the call “anything you, need please let know” in a way I never imagined.  I began to crowdsource cancer.

According to  Merriam-Webster’s online dictionary crowdsourcing is “the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people and especially from the online community rather than from traditional employees or suppliers.” Once I was diagnosed my “practice of obtaining needed services, ideas, or content” changed drastically. I never had a “large group of people” to weigh in on my health but with doctor’s appointments, tests, biopsies and second opinions I found my healthcare team getting larger and larger.  At times I turned to doctors, nurses, patient websites, and Facebook friends to help me get and understand the information I received. I gathered questions to ask before each appointment, recorded the responses and solicited the input of breast cancer survivors to help me problem solve and to calm my fears.

As I received chemotherapy traditional “employees and suppliers” I once took for granted could no longer do the job.  My hair for instance, whose only job was to grow, resigned abruptly. The grocery store where I usually got my supply of food was off-limits because the smell of the bakery made me nauseous and the parking lot, layout, and lines required more energy than chemo allowed.    There are thankfully many service and support systems at the ready for cancer care and I took advantage of formal and informal cancer networks both in person and online, some friendly others more unfamiliar.

Being unmarried was not an issue at this time because, as it turns out, husbands are optional during diagnosis, treatment and in waiting rooms. My unwed status never came up when kind family friends and charitable strangers offered wigs, rides, and yoga classes. But what was a single girl to do about things like cleaning, bill paying, or grocery shopping? Sure there were services available and friends and family offered to step in when and if their schedules allowed. But how could I, alone, keep all those balls in air as my stamina waned and my strength was depleted by chemo?  I couldn’t keep track of the details of my life and the details of my health without help, but I didn’t want to be a burden. I am not the type of girl to make a fuss or to be fussed over. I tend to be pragmatic; some would say I handle my business. It was as if my cancer was my business and I was the sole proprietor CEO. So I took the approach many businesses turn to and applied the crowdsource concept to living with cancer.

Be well,

Pam

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