Why I designed a cancer diary?
Updated: Oct 14, 2020
I created this journal while undergoing chemotherapy for breast cancer. Like many other cancer patients, the journey through diagnosis, treatment and thrivor-ship has been overwhelming, with good days and some terrible ones. On one of those days, the receptionist at the cancer clinic gave me a hand-knitted warm hat that a patient's family member had made. That small token made my day. It gave me something that I used for the rest of the year. This thoughtful, kind, and meaningful token made me felt seen.
Being diagnosed with cancer brought with it membership to a club that no one really even wants to belong to. Yet here we are - on this journey together. I don’t knit, but I am a designer who works in healthcare. This journal is my way of giving back to this community. I designed it for us.
My story has provided the initial fodder for the structure of this journal. I was diagnosed a few weeks after my 30th birthday. I found my tumor in my right armpit. It seemed like I had defied a whole number of odds - <1% chance of cancer at 30, breast cancer in the armpit, and a tumor that my oncologist described as a "old person's tumor". Navigating through transferring my care to a specialty hospital, ensuring my insurance would provide me coverage, and deciding on my treatment plan was one heck of an overwhelming journey. Even though I worked in healthcare (including at two cancer analytics startups), and had a whole host of experts who could help me, I had to get smart about what was ahead of me. With the many consultations, research articles, visits with experts, I had no one-space to capture it all. I found myself in many appointments trying to remember what happened when, and wishing I had kept better notes.
Once treatment began, so did the symptom management. I looked for patterns in my care, and realized there were none. Some days I could eat yogurt, and other days would get terrible nausea just thinking about it. When I'd speak to my care team about the past cycle, I'd have to rack my chemo-riddled brain to answer questions like "how many times did you get diarrhea on day 8 of the last cycle?". Questions like that enraged me. How was I supposed to remember that? Why hadn't they told me to document those symptoms? My approach to resolving my rage and fear was to design this journal. I realized that there was no one place to keep my notes, track my symptoms, and coordinate the many things that this path included.
Lastly, the physical journey takes over. Often in the early months, I couldn't sort through the emotional aspects of it. A lot of people told me to write, blog, or journal. All that came out of me was poetry. It was bizarre, as I don't usually write poetry :) Scattered in different books, and loose leaves of paper, I captured the moments of terror, grief, happiness, and peace. This journal offers a place to capture your emotional journey too.
As a part of this club of extraordinary individuals, each who are traversing a unique path in their lives, I offer this journal as a means to making it your companion. It's designed only for you.