During these days leading up to Thanksgiving, I have decided that each day I would post on my Facebook page something for which I am thankful. In one post, I wrote that I am thankful for my amazing medical team. Led by my oncologist, they are not only the people who take care of me from the minute I walk through the door, they are also my friends and guardian angels. The post generated many “likes” and comments. The comments (some from women with metastatic breast cancer) made me realize that the care I take for granted in actuality is not the norm for many women. I’m not talking about health insurance (that’s another blog for another time) but about the actual care we get from our oncology team – from the person who books our appointments and tests to the nurse who administers our treatments to the physician who guides our care.
Hillary Clinton wrote that “it takes a village” to raise a child. I believe we can use the same analogy when referring to caring for each cancer patient. Traveling through the maze of tests, treatments, appointments and opinions can be daunting, to say the least. To be told things like “call us in a week to get your test results” or “you need a CT scan, so here’s the number to call” is very frustrating for any patient, but to those who have disease that will be with us forever, and will most likely be the cause of our deaths, it can be the cause of unnerving stress and unnecessary anxiety piled on top of trying to lead somewhat normal lives of working, raising families or just getting through each day with as much sanity as possible, regardless of what that means. From the day we are diagnosed, these are the people who have the power to make our journey with metastatic breast cancer bearable. They may not be able to change our fate, but they can cerainly make the day-to-day medical stuff a whole lot easier to deal with!
In a perfect world, our medical teams would anticipate our every need and address those needs before they became issues. Of course, that is unrealistic, but I believe it is our own voices that can be powerful tools and equal partners in the care we receive. Gone are the days when we looked to our physicians as gods of healing, but in reality, our physicians can only help us if we take down the traditional wall of knowledge that existed between physician and patient and become true partners in our care with them and their staffs. If a physician is not open to this kind of doctor-patient-staff relationship, it may be time to find another medical team. If you have to wait an unacceptable amount of time to get test results, it may be time to find another team. If your calls aren’t returned and you find yourself checking your cell phone constantly for days to make sure you didn’t miss a call, it may be time to move on.
I could go on and on, but I think you get the point. The care we get is our responsibility to advocate for, regardless of the level of our expectations. Although we are all different with different expectations, our medical team should be willing to provide for us what we expect – because that is what we deserve.
Don’t Stop Believing!