Be Your Own Advocate

— Categories: Ependymoma Community     Posted on July 31, 2019

Ependymoma survivor, Sarah, shares three tips to help guide you through your ependymoma journey.

By Sarah R.

As an ependymoma survivor and guest blogger, Sarah shares her advice to help others within the ependymoma community cope with their illness.

As a Type A planner through and through, I don’t like surprises. Occasionally, life throws you into situations that you’re not prepared for. A frightening medical diagnosis is one of those times and it requires you to pull from a deep superhuman level of physical and mental strength you never knew you had. But it’s there. Within each of us. I promise you that. 

After being diagnosed with a myxopapillary ependymoma in my spinal canal in 2016, I tapped into that strength and forged ahead. I knew that knowledge was power and was determined to find the absolute best care team for my rare tumor type. 

My story has a number of twists and turns, but I’ve learned so much about advocating for myself or a loved one. Here are a few things I wish someone had shared with me as I began my real-time crash course in patient advocacy.

1. Ask Questions

Come to your appointments prepared. Start a binder and begin formulating questions ahead of time. Do you remember your elementary school teacher telling you that there’s no such thing as a silly question? That’s the truth. Your neuro-oncologist, neurosurgeon and radiation oncologist have a job to treat you and your job is to ask enough questions and feel satisfied with the answers so you can begin to heal your body and be mentally prepared for treatment. It’s a joint partnership and your role as an informed patient is just as crucial as your physician’s role. 

2. Enlist Your Army

This is the time to say YES to the helpers. Their support from the sidelines will allow you to free up some mental and physical energy you need to take care of yourself. That neighbor that offered to leave dinner on your front step for you and your family? Yes, please. The cousin who insisted on coming to your pre-op appointment to take notes? You accept! Your book club friends that want to create a pick-up schedule for your kids after school? You gratefully agree. People want to help. It’s in our nature. Let the helpers in. If it’s too much of a burden and an additional stressor to coordinate the helpers as you’re going through post-op recovery or active treatment, recruit a helper to do it.

3. A Second Opinion Isn’t Always Enough

Do the research. Make lots of phone calls. Educate yourself about your tumor type. If you’re not comfortable doing it yourself, ask a friend or a neighbor to help you navigate the internet. Libraries have free internet access if you don’t have a computer. Know that .gov and .org websites are most reliable. Meet with a few different specialists before deciding on your course of treatment. Only after becoming an expert in your specific condition, will you be able to make the best decision and confidently move forward.


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