Be Your Own Best Advocate


 

For some of us, receiving a cancer diagnosis was the first time, aside from routine doctors’ appointments, that we became intimate with the medical establishment. For others, the road to our diagnosis has been paved with weeks, months or sometimes years of not knowing, going from physician to physician, test after test, trying to figure out what is going on with our health and our bodies.

In either case Cancer World is a place in which most of us, as grateful as we are for our doctors and hospitals, spend too much time in waiting rooms, testing areas, chemo chairs, being poked and prodded by medical professionals.

We are cancer patients in their world and it sometimes feels as if a piece of our personal identity, and sometimes our humanity, is taken with that term.

Many of us were brought up to not question authority, or at least not too much. We were taught to smile, be agreeable and compliant and not cause a ruckus.

All of that translates into a cancer patient who shows up for her appointments, takes her medicine and follows doctor’s orders. This means we get the tests and treatments we need and have a better chance of kicking cancer.

It also might mean that we don’t speak up, don’t share our concerns, questions and frustrations as we should with those overseeing our medical care. We may have questions or concerns that are dismissed as unimportant or silly, or we might let ourselves be talked to by physicians and other medical staff in ways that aren’t appropriate – whether rude, condescending, impatient or patronizing. Kendall was once named “pukey girl” by a nurse because her pain medication after surgery was causing her to vomit. Annette had a doctor rudely argue with her that she hadn’t had a very painful procedure performed, twice – when she had – just because he saw it as unsuccessful. No, we’re not kidding!

In this Cancer World, which is so overwhelming and distressing, we learn, sooner or later, that we either speak up and speak back, or we take the hit and wait until we get to a private space and then punch a pillow or cry. We’ve both had instances where, rather than speaking up in the moment, we go home, consider what happened and wish we had stood up for ourselves.

Being our own best advocate becomes necessary if we are to persevere. We need to empower each other and ourselves to ask questions, demand fair and kind treatment and have our wishes and humanness respected. We must strengthen our voices and not be afraid to speak our truth and let doctors, nurses, and technicians know when they are lacking in respect and care.

Sometimes, though, we just don’t have the energy or spirit to do so. In these times it is invaluable to bring an advocate with us to appointments and tests. Someone who will listen, speak and act according to our wishes on our behalf when we need some support. A friend, neighbor or family member can be an advocate for us.

Cancer requires a lot from us. And this also includes strengthening our voice and being empowered around all aspects of our care and treatment.

As Billy Joel always says: “Don’t take any shit from anybody!”

Have you experienced this sort of treatment from a health care provider? How did you handle it?

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Comments

  1. Miss Catherine,

    I could not agree with you more. My cancer experience was tough physically, but my chemo nurses ROCKED! I did, however, have a two glitches with two doctors. Once, about a month into the expansion process for my reconstruction I had a doctor tell me that there was nothing out of the ordinary wrong with me….I just had a low tolerance for pain! He even suggested that maybe I was jockeying for more pain meds. I actually discontinue pain meds about a week after most surgeries due to side effects. Anyway, several months after this comment all the while I was having a horrible time expanding with great pain on one side, I changed doctors. He decided to start over and so when I started to come to in the recovery room following surgery my new doc was standing over me saying…” Sharon, you are not crazy and definitely NOT a wimp. He broke your rib expanding you and just kept on expanding and expanding on that broken rib.” Sometimes as a patient, for me at least, the greatest comforts from my medical providers have come from doctors who told me I was NOT actually crazy! There was a problem, and they were prepared to help me kick it! Thank you to the ones who listened!

  2. Catherine, you’re lucky to have had such great health professionals, except for your one nurse. And maybe terrible social skills, but brilliance in treating the disease is more important!

  3. Most of the doctors and nurses I’ve encountered have been very good. There was one, however, who never looked up from her clip board the ENTIRE time. I suspected she was one of those brilliant minds with absolutely no social skills. It wasn’t a fun conversation . . . actually, it wasn’t even a conversation!