Be Your Own Advocate

I routinely encounter folks dealing with serious illness (mostly cancer, in my circumstances) who accept whatever the first doctor they meet tells them, even if what they’re told is that there is no hope. I watched my own mother accept that information from her doctor two years ago. I didn’t know as much about cancer at that point: I’d only been through it once, mine was treated conventionally with chemo-radiation, and it had been gone for two years and at the time was thought to only have less than a 3% chance of returning. I didn’t know about immunotherapy, which was available in trials at that point and could have given her more time. Even so, I tried to get her to go to the best facility in St. Louis for lung cancer, and she wouldn’t. She just accepted when the doctor at the smaller, regional hospital said she had 6-9 months to live.

Just last week on a cancer forum, a woman said cisplatin chemo was making her husband too nauseous to eat. I posted a list of new drugs I had when I last had chemo a year ago, and two more approved by the FDA just this year. She said he was on one of the new-ish drugs and she just hoped it would start working soon. I wanted to bust through the computer and shout, “Why won’t you ask your oncologist about the new drugs? In fact, don’t ask: INSIST.”

Be your own health advocate. When you’re given a diagnosis, look it up. Do the research and ask questions. Look up your prescriptions. Get a second opinion. Be persistent if the symptoms don’t improve or you don’t get answers. Don’t hesitate to change doctors if you need to. It can very literally be the difference between life and death.

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