Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, multidisciplinary skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I strengthened the article to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient[View PDF]. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a profound gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Through writing, speaking, and poetry, my objective is to bring to light the unseen needs of patients living with devastating illnesses. Cancer is a black box few people understand unless they’ve had cancer themselves. I hope that this blog can be a resource for medical caregivers, friends, and families of cancer patients, and anyone who wants to better understand the human experience of cancer. Thank you for sharing.

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12 thoughts on “Why I Became a Patient Advocate

  1. You’re a beautiful writer Sylvie and your courage, grace, wisdom, experience, poise and authenticity give you a wonderful platform and voice to carry these important messages. Despite the real hardships that you’ve been through and continue to experience you continue to persevere and I find this incredibly inspiring.

  2. Lots of people will benefit from your experiences and writing. I am very glad your are willing to open up and give back.

  3. Thank you for your work in giving voice to your pain and suffering, and I’m glad that you are also starting to see the gifts and opportunities inside the suffering. My treatment was a very scary time, but I am determined to put the time I have left to good use, and thus see cancer and illness as a blessing in disguise.

  4. Sylvie, thank you for describing your experience with cancer and the inspiring addition of acting on behalf of others so that they may have a more supportive treatment. I believe that your way of using your voice is very influential and beneficial. I’m grateful for your courage and skill in communicating effectively.

  5. Fantastic! You’ve captured a snapshot of your experience in a succinct, eloquent, and compelling way. So many people will benefit from your expression.
    Thanks for sharing this.

  6. It’s a wonderful accomplishment and addition to the literature and resources for hospitals to have your article in the Journal of Patient Experience! Healthcare professionals need to be taught to think about the patient experience. The list of stressors and suggestions you outlined in the article is so valuable.

    Thanks for working towards improving patient experience for all. It takes a lot of courage to share your journey and respond to the critical mission of “patient advocacy”.

    1. Thank you, Myriam. Your words: “it takes a lot of courage to respond to the critical mission of patient advocacy” resonated strongly with me. My post may have made it sound like it’s easy, but I still have to overcome many obstacles. I am trying to keep hopeful.

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