After a Cancer Diagnosis, I Became a 'Patient From Hell'

After being diagnosed with breast cancer, I became a fierce advocate for myself.

I had just turned 30. My birthday is 2 days before my partner’s birthday, and we always take the week to travel somewhere.

As soon as we returned from our diving trip, I found a lump. After weeks of dismissing it, I was diagnosed with breast cancer.

Hearing the words “you have cancer” is unlike anything I’ve ever experienced. Even though early-stage breast cancer has very good survival data, my cancer diagnosis shocked my system to the core, and threw me into a whole new world to navigate.

My life changed in ways I couldn’t fathom. Pre-cancer, I was your quintessential Indian immigrant transplant to Silicon Valley. I was a self-proclaimed nerd with a get-things-done while obsessing-over-productivity personality. My days, weeks and months were planned. But after cancer, life took a sharp turn and left me utterly unprepared. My weeks were spent getting diagnosed, weighing options, identifying a treatment plan, communicating the uncertainty, and not planning for my future. It was the ultimate loss of control.

After my diagnosis, a longtime professional mentor introduced me to the work of Stephen Schneider, a former professor of Environmental Biology and Global Change at Stanford University. He passed away from mantle cell lymphoma long before I'd ever had a chance to meet him.

Schneider wrote a book titled “The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too.”Schneider can't know this, but his book became the bible for my cancer experience. It gave me the courage to voice my opinions, raise my questions, stand by my values and make better decisions. It transformed me into a patient advocate when I didn’t know what a patient advocate was.

There are numerous ways he shaped my experience. Here are two lessons:

You always have a choice, even when you don’t think you do: Schneider reminded me that despite losing control over our lives, we did in fact have a choice. We had the choice to try an experimental treatment, we had the choice to find a clinical trial, we had the choice to ask for a different drug, we had the choice to find a new oncologist, etc. Sometimes these choices feel daunting. Very often we don’t think we have the agency or we think choice doesn’t exist. In this fight for our lives, we do have a choice. Even if it’s a choice between something bad and something terrible.

If you don’t advocate for yourself, no one else will: Our oncologists, surgeons and radiologists are living lives in accordance with their training and what the system allows. It is our job to ask questions, to probe, to inquire and to ensure that we understand the path ahead. If that means spending more time on the phone advocating for ourselves with the insurance company, or the nurse or the pathologist, then so be it.

The patient from hell is insistent that they understand what their condition is and how it is treated. They read everything they can get their hands on, come up with questions and ask for the answers. They seek second, third and fourth opinions. They persevere with insurance companies. They stay on that awful customer service line, even when they are exhausted. They come to their oncologist asking for more data, for a rationale, for explanations. They work with their nurses to understand how to get better supportive care. They try to get control over the things they can control.

They know how they want to live out their time, and they communicate what that means to them.

While I’m certain that I’ve driven my care team and family a little nutty over the last few years as I’ve transformed into “the patient from hell,” they have been patient with me and have continued to stand beside me as I navigate this new and frightening post-cancer world. For that I am eternally grateful.

I have come to embrace my “patient from hell” persona as it ensures that I live my life armed with as much information as possible and squeeze as much living out of each day as I possibly can.

This article was written and submitted by Samira Daswani; it reflects the views of Samira Daswani and not of CURE®. This is also not supposed to be intended as medical advice.

Samira is a healthcare strategy and design leader. As a serial entrepreneur, she has incubated and operated numerous health care startups. Most recently she served as the VP of Product at Visby Medical and launched a multi-million dollar infectious disease test. Samira founded Manta Cares, a global community of caregivers and survivors dedicated to making the cancer experience just a little easier.

Samira started her career at McKinsey & Company. She has degrees from MIT, Stanford University and Wellesley College. In her spare time, she can be found sketching, writing poetry, swimming and playing with her two rescue dogs.

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