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I don't mean to keep secrets from my doctors but it's so easy.
I want to be a better patient. Honestly, I do.
I’ve just never been a “good” patient. I don’t like doctors or needles or long conversations about my (or anyone’s, for the matter) illness or health issues.
But as “the patient,” what I know about myself is – at the very least – as important as the knowledge the doctor brings to the table. Unfortunately, knowing that does not instantly turn me into the patient every doctor dreams of (well, minus the metastatic cancer, but still…)
I get a lot of chances to practice. Cancer patients know what I’m talking about: appointments for treatment, appointments with this doctor, appointments with that doctor, appointments for scans and blood work and follow-ups and check-ins. My calendar for the past 30 months is covered in scribbles that only I would understand. Shorthand notations for the endless appointments a patient with stage 4 cancer can’t wriggle her way out of with any ease.
I’ve been reminded recently about what a failure I am as a patient. Despite having metastatic breast cancer, I continue to think of my body as the strong, healthy, invincible place it mostly had been for 50 years. So, “Could it be cancer?” is not usually the first question I ask myself, even though it probably should be. I write off the pain in my knee as being due to swimming and age and joint issues that can accompany the drugs I receive. I tell myself the area on my scalp that just won’t heal is due to hitting my head on a doorway and the blood thinner I’m required to take these days.
And I keep these troubles to myself.
I don’t say anything to the oncologist.
That, in case you’re wondering, is being a bad patient.
To be fair, it’s not like I actively hid this information from the oncologist. It’s just that I considered these problems as things about my body that I could handle on my own. It didn’t even occur to me to say anything. And, in case you’re wondering about this too, that seems to annoy the doctor, as well as my husband, my family and my friends.
I mentioned my knee first—the oncologist had me in to a specialist within two weeks, and he had me in physical therapy just days later. It wasn’t related to cancer — I’ve been asked that many times now — but it was impacting my quality of life and even my ability to handle treatment without becoming depressed.
My scalp? It took a lot of signs from the universe to finally realize that sores on the skin that last and last could be further metastases. My lungs, my liver, my bones, my brain—these are the parts of my body I’d considered at risk. My skin? Call me whatever name you like (“fool” is my personal choice), but the fact that my skin is an organ and is as susceptible as anywhere else wasn’t something I’d considered.
My oncologist got me in to a dermatologist super quickly, who assured me that cancer was not a factor. “Did you tell him what your treatment is?” asked my oncologist at my most recent appointment. Well, no.
Bad patient. Very bad patient.
The message was clear. If you want the best care, you have to be your own best advocate or have someone with you who can take on that job. But being a patient and being your own advocate is very hard when you are worried and tired. When so much of what you see in front of you is more appointments, avoiding some of them, even at the risk of a bad outcome, can be so tempting.
I’m fortunate that my friends and husband don’t hold back about my failures as a patient. I’m sure they wonder why I can be such a great advocate for my kids — fearless and ferocious — but I don’t want to be the same for myself. Sometimes you want to be the patient, not the advocate. You want your doctors to read the files that they’ve accumulated on you for themselves. I don’t want to spend my time reciting the litany of my woes. Can’t they just read the file?!
No. They probably don’t have time to read the file for every patient. They rely on us to tell them the whole truth every single time. I know I’ll slip up again, but I’ve been properly chastised by almost everyone who talks to me about my care. I’ll put on that advocate cap if I must and try again to be the good patient. I’ve got another chance coming up really soon.