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 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 expanded it to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: “An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient”. 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 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 the exploration of new technologies, my objective is to bring to light the unseen needs of cancer patients and patients living with devastating illnesses. Cancer is a black box few people understand unless they’ve had cancer themselves. By revealing insights into the human experience of cancer, I hope to help medical and non-medical caregivers improve the cancer experience for all cancer patients.

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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. 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.

  4. 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.
    Ali

  5. 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.

  6. Dear Sylvie,

    You made your cancer experience a potential catalyst for transformation for yourself and many other cancer patients. I believe what you are offering, i.e., advocating for patients, is powerful and essential for so many people who cannot articulate what they are going through. I hope your voice will give insights to the healthcare professionals, caregiver, families, friends, and even to cancer patients themselves who may not have been aware what might have been going on inside of them.

    May you courageously continue this important work for the benefit of many people, Sylvie!

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