The U.S. has some of the best cancer care in the world and I live in one of the areas known for excellent treatment. However, accessibility to healthcare is not consistent. I was treated and continue to receive follow-up care at the Swedish Cancer Institute, which is part of Swedish Medical Center.
I am really lucky. My physicians, from my internist, to my breast surgeon, to my medical oncologist, are all top notch. The staff at my cancer center are excellent. Although hospitals are no place to rest, the care I received at the hospital during the four surgeries I had there, was exemplary whether during the day or in the middle of the night. My healthcare providers communicated with one another. I had access to my healthcare record online but I was not responsible for managing the sharing of those records. Last, but not least, everyone I interacted with was friendly and polite, with little exception.
Being cared for by competent and professional people within a functional healthcare system was one of the best experiences I’ve had in my life in terms of feelings cared for. I am a caretaker. I started babysitting when I was 10 years old, I am a mother and a wife. I am a healthcare provider.
I was active in my healthcare but I had a lot of trust in my physicians and followed all of their recommendations. It was always made clear to me that my physicians were making recommendations but that the ultimate decisions were mine to make. They were clear, however, about the potential pros and cons of each treatment option, which is part of a healthcare providers job as well as of their legal and ethical responsibility to patients.
Cancer treatment is exhausting. Although I.V. chemotherapy and radiation were not recommended for me, my treatment was still taxing. The main part of my treatment took over two years, which involved nine surgeries, two years of Lupron shots, ongoing Tamoxifen treatment, countless blood draws, scans, pathology reports, and anywhere from 3-5 doctors’ appointments per week. Although I took off time to recuperate from surgeries, I worked throughout that time and had family responsibilities, most notable helping rear a teen daughter who was having one Hell of a tough time with life.
Because I had excellent care, I was able to relax at times and let my caregivers take care of me. I could lie in the ocean and float like a jellyfish, trusting that the surf would take me where I needed to go. I don’t recommend the “jellyfish method” as a general way of getting through medical treatments.
Exhibit A. The surf took this jellyfish to land. A jellyfish can survive out of the water for less than an hour. They can’t swim or move themselves. It takes well longer than an hour for the tide to come back in to where the jellyfish have been stranded.
My friend, Beth Gainer, MA, had a very different cancer treatment experience. Acting like a jellyfish even for brief periods could have threatened her physical well-being and most certainly damaged her psychological health. I’ve been reading Beth’s blog, Calling the Shots, for a number of years now. She has bravely waded through rough waters inhabited with unbelievably rude physicians and unhelpful administrative staff. Fortunately, she was able to secure some physicians who, as she says, she “loves”. For this, I am very grateful but I am angry and sad about her other experiences. Cancer is hard enough!
The path to good care was not easy or smooth for Beth. At times, advocating for care in a dysfunctional system was downright ugly. But she did it! Using her experiences as a guide, Beth has written, Calling the Shots in Your Medical Care. This short book contains practical tips for assessing the quality of your healthcare providers, suggestions for speaking up, and finally, strategies for being “a bad patient”, one who speaks up and forcefully, when necessary.
Just as there is no one way to navigate through cancer or any other serious illness, there is no one way to navigate through your healthcare. But if you find that you have lots to say and don’t feel empowered to say it, this is the book for you. Beth found her voice in her cancer treatment. You can, too.