“You have to be your own advocate.”
We’ve all heard it before, but when it comes down to it, being your own advocate means so much more than bringing a notebook to appointments, being knowledgeable about your disease and asking questions. When it comes to cancer, we’re not advocating for a bike lane on main street. We’re advocating for our families, happiness, feeling good and our lives.
I have always had a bold personality with no reservations about being a pain in the behind, so advocating for myself was a natural instinct. While I know there is still a lot to learn, I give partial credit to my advocating abilities for living today with no evidence of disease.
We all have different tactics to insure we’re receiving the best possible care for ourselves or our loved ones. Here are some of the important advocating lessons I’ve learned along the way:
I got many opinions. I know this goes without saying, but the more I talk to other survivors, the less I hear this actually done. If I had stuck with the first and second opinions, I would not be feeling as good as I do today. I figured since I and my insurance company would be paying them a lot of money, it was my right, as a paying customer, to interview doctors as if they were applying for a job. The position was saving me. Not only were their answers to my questions important, but I also considered their experience, personality, accessibility and whether they would be a good fit on Team Stacie. Also, I learned the hard way that liking a doctor, does not mean they’re right for my team. I wanted the best doctor for my disease, not a best friend.
I found a leader. I wanted the very best, which to me meant a doctor who lived and breathed the disease I was facing. Someone who leads clinical trials, knows the cutting edge treatments and can answer my questions without needing to look them up. Eventually, I found a specialist in a neighboring state with over 30 years of experience and patients who credited him as the reason they’re alive today. My doctor only works on neuroendocrine cancer and has not only championed treatments through FDA approvals, but is also up-to-date on the latest promising treatments in other countries. As the captain of Team Stacie, he develops the game plan and works with a local oncologist in my hometown.
I email my doctor. In today’s world, we shouldn’t rely on appointments and phone calls. I find when I call a doctor during the day, they are with patients or unavailable. Therefore, I send a email with a question or request for them to call me along with a list of what I’d like to discuss. If it’s quick and easy, I let them know they can respond via email and a phone call isn’t necessary. My specialist is older and not so email friendly, but his nurse is happy to play the middle man. Beware of a doctor who won’t provide you good access to them.
I’m on my team like white on rice. All healthcare professionals are busy people and I can see how patients slip through the cracks when doctors are working, on average, 60+ hours a week. However, my life depends on not slipping through the cracks, so I am respectfully stuck to my doctors hip like glue. I won’t hesitate to call, leave a voicemail and follow-up with an email, day after day. The result, my doctors know this and are always quick to return my call, if only to get me their off their back. When we do connect, I acknowledge their lack of time and express my sincere gratitude.
I learned my disease inside and out. Thanks to living in the information era, I connected with many patients affected by the same disease who shared their decades of wisdom. However, I do not believe my ability to Google overrides the knowledge in my team of highly trained medical professionals. While going through treatment, I leaned on my team and Google to teach me how to read lab results and reports. Before I am called into an exam room, I’d pull these up on my iPad to discuss with my doctor or nurse. I’ve even been known to impress a couple interns, nurses and assistants with my level of knowledge, which I take as a compliment.
I leaned on my closest allies. There were times when I was so sick, I just wanted to get out of the exam room and into the treatment room. During those days, I leaned on my husband to ask the questions and advocate on my behalf. I also have a friend who has been through her own health challenges and offered to become my legal advocate should the situation arise. Another possible line of defense I considered was a third party, trained health advocate. Before cancer, I wasn’t aware such an occupation existed.
Above all, I trust my gut. I have learned so much since my diagnosis, but one of the most important lessons is to trust my gut. More than ever before, I am in tune to what my instincts and body are saying. In the past, when I rebelled against these internal compasses, I was always sorry. I constantly check-in with how I’m feeling and talk to my body as if it were a separate entity. Deep down, I know what is best for me and it’s my job to communicate with my team.
Advocating for yourself can be exhausting, but your life depends on not letting your guard down for a moment. Be heavily, unstoppably and unapologetically engaged in your health and you could be rewarded with the best gift of all: life.