How to Be Your Own Advocate: 5 Tips from a 14 Year Metastatic Breast Cancer Thriver
Being diagnosed with cancer can be a shocking, terrifying, uncertain, stressful time, especially when it’s at a young age & completely unexpected. I received my first cancer diagnosis at 26 and I was feeling every emotion as you can imagine. I felt blindsided. Doctors assured me it was probably nothing. At my age, lumps usually turn out to be harmlessness. And then I heard the words I’ll never forget “You have Breast Cancer”. At that moment everything became a blur. I quickly agreed to a mastectomy, chemo and radiation followed by reconstruction. I thought I’d paid my dues and my life with cancer was over.
Fast forward 15 years, after a recurrence in 2008 at 30, left me with stage 4 metastatic breast cancer and many health issues as a result. Through it all, I know I’m still here thriving, for a reason. My cancer journey has taught me many valuable lessons. One of the most important things I’ve learned along the way is to advocate for yourself.
Here are my 5 tips for being your own best advocate as you navigate all the challenges of a cancer diagnosis.
- TRUST YOUR INSTINCTS - If you feel something is not right with your body, don’t dismiss it. It’s hard to trust your gut feelings when a medical professional is telling you nothing is wrong or downplaying your symptoms. This is a time to become the squeaky wheel. You may feel as though you’re bothering them by calling your doctor’s office or like your question is unimportant, but this is your body, your health, your life and you deserve answers.
- REMEMBER, YOU GET TO PICK YOUR TEAM! - Picking the right team is critical when it comes to your cancer battle. You are the team captain and have the right to make changes at any point in time. Your oncologist is a huge part of the team. Pay attention to how you feel in your appointments and observe your oncologist’s strengths as well as anything lacking in your care. It helps to bring a list of questions and concerns for your Dr. Make sure you check everything off. If you forget something, don’t be afraid to call your Dr.'s office to ask a question or clarify something. If you don’t get answers, you’re free to get a second opinion or an oncologist who is a better fit for you. One thing I have found myself saying often is “Different Doctor, different answer.” This can add to the confusion so you need someone consistent and on the ball. When you’re fighting for your life, you should have full confidence in your team and feel like your oncologist is thorough and on your side.
- BRING A SUPPORT PERSON TO YOUR APPOINTMENTS - Bring a support person who will have your back and see things from a different perspective. They may have questions or concerns you haven’t thought of. Bring someone you feel comfortable saying anything to. Sometimes a friend or fellow cancer survivor can be the perfect support person. When we bring a close family member like a parent, child or spouse to our appointments, we can end up being more concerned with upsetting them or saying the wrong thing. Try to imagine yourself in your appointment. Who can you picture being a great support person by your side? Have your support person take notes so you can focus on your appointment without worrying if you will forget or miss critical information from your oncologist.
- RECORD EACH APPOINTMENT ON YOUR PHONE - I can’t tell you how many times I wished I had my appointments recorded. I’ll be completely honest, over the years I’ve experienced misinformation, withholding of important facts and even flat out lies from medical professionals. We want to believe all doctors know what they are talking about and are perfect at their jobs. The truth is they are human and therefore make mistakes. Over time I have learned to always record my appointments if possible. Not just because I’m concerned about being told the truth and receiving all the information when it comes to my body. Sometimes chemo brain, brain fog or just plain overload because of life circumstances, can cloud our thoughts and affect our memory. Being able to listen back to be sure I didn’t miss anything or perceive something in a different way, has been a big tool for me. Sometimes I even play the recordings for my partner and family, instead of explaining everything that was said in an appointment.
- DO YOUR OWN RESEARCH - When I was first diagnosed, I quickly went along with my doctors recommendations for my course of treatment. I’m not against western medicine, however at that point in time I did not even consider any alternative options. With my second diagnosis I was aware of so many success stories, using other approaches so I began researching natural, wholistic and complementary therapies. There were so many, it could be overwhelming but I’d start with something I had heard success stories about that I felt I could incorporate into my life. I would then look for credible sources and studies, and testimonials. So much of what I read made perfect sense. I started implementing what seemed doable for me. Adding in lifestyle changes from diet to yoga & meditation. I believe 100% I would not still be here if I didn’t take the initiative to research and apply what I learned. Everyone’s body is different and what may work for some, may not work for others. Take the time to decide what you want your Cancer Battle Plan to look like. Just knowing you have a choice is very empowering. Looking back, these would be my messages to my 26 year old self.
By Faith Walker
Faith Walker is an 14 year Metastatic Breast Cancer Thriver. As a singer-songwriter living outside of Toronto, Canada. Her passion is writing music to inspire others to keep fighting and never give up during the toughest times.
As a true example, check out her latest video for “Head In The Clouds”
This is an amazing. Thank you!
You have had a long journey, with lots of twists and turns during these times you have learned how to be an advocate for not only yourself, but others as well. You are an inspiration to so many people, young and old living with cancer. You also speak about and remember those who were so close to you that have passed on and although you miss them, I feel you are honoring them as you continue your journey. Love you <3 your mom!