I Can Do It Myself: Maintaining Autonomy During Cancer

I've never liked being told what to do. As a kid, teachers and other parents probably saw me as a "good kid." But they didn't know about my silent and undercover rebellions — signing myself out of high school at any opportunity, teaching my younger sister how to correctly forge our mom's signature, refusing to listen to the swim coach who thought she knew best. I wasn't a rebel who got in trouble, but I wanted to make up my own mind about how I would respond to events in my life and pity the person who had good intentions but didn't understand that "power" to me meant being able to make my own choices.

So, I guess it's no surprise that being told what to do by doctors is just not the way I can handle the medical care I need as a person with metastatic breast cancer. I've declined medication for chemotherapy-induced peripheral neuropathy (the recommended drug has potential side effects that worry me for very specific personal reasons). I've worked hard to convince my hematology oncologist — who is an additional doctor I "won" after developing blood clots around a since-removed port – to take me off daily self-administered shots of blood thinner in favor of a relatively new tablet. I review my scans and visit notes and try to know what my options are and be prepared to speak up if and when that time comes.

Most of all, I take offense at doctors, nurses and other caregivers who fail to understand that autonomy should be removed from a patient's life as late as possible and, really, only under special circumstances that for me include mental health and cognition changes. Of course those vary with age, personal preference, disease progression and other factors.

As someone who shows up at the hospital at regular intervals and follow the rules in order to receive the most effective treatment, I have surrendered much of my autonomy. I won't just randomly decide to skip a CT scan, for example, or argue with the nurse about how poor she is at inserting an IV. I have been receiving treatment for over three and a half years, with the regular scans, EKGs, blood tests and doctor visits that entails. I am now 53 years old and I can tell you that is not a "normal" life for someone my age. Most of my friends — at least those without cancer – have complete bodily freedom.

I like to think I've learned some acceptance of my care, but I know that's not completely true. Mostly I know that because when a relative spent half an hour talking about how her mom wouldn't accept her help when setting up an oxygen tank, I wanted to, well, slap some sense into her. It's all too easy to think that someone who's older, someone with a serious diagnosis, such as cancer, and people with chronic health conditions are in constant need of help from someone healthier, younger or just not so-diagnosed.

If you are caring for someone with cancer, please remember that no matter the age of the patient, that patient is a person first. She may not be able to talk easily and may need to be pushed in a wheelchair, but she is still first-and-foremost a person. Ask what she needs and pay attention. Maybe what she needs is not what you want to offer. Listen anyway. Then do things the way she wants, if medically safe, or help her do them herself.

Consider how you might feel if suddenly your body had acted against you and you are confronted by ill health, too many doctor appointments and people who know what's best for you even when they don't know you at all. Have some sympathy and remember the person there. She'll appreciate it.