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The Good Patient and Me

I don't mean to keep secrets from my doctors but it's so easy.
PUBLISHED July 27, 2017
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
I want to be a better patient. Honestly, I do. †

Iíve just never been a ďgoodĒ patient. I donít like doctors or needles or long conversations about my (or anyoneís, for the matter) illness or health issues. ††

But as ďthe patient,Ē what I know about myself is Ė at the very least Ė 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 stillÖ) ††

I get a lot of chances to practice. Cancer patients know what Iím 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 canít wriggle her way out of with any ease. ††

Iíve 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, ďCould it be cancer?Ē 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 wonít heal is due to hitting my head on a doorway and the blood thinner Iím required to take these days. ††

And I keep these troubles to myself. ††

I donít say anything to the oncologist. ††

That, in case youíre wondering, is being a bad patient. ††

To be fair, itís not like I actively hid this information from the oncologist. Itís just that I considered these problems as things about my body that I could handle on my own. It didnít even occur to me to say anything. And, in case youíre wondering about this too, that seems to annoy the doctor, as well as my husband, my family and my friends. ††

I mentioned my knee firstóthe oncologist had me in to a specialist within two weeks, and he had me in physical therapy just days later. It wasnít related to cancer ó Iíve been asked that many times now ó 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 brainóthese are the parts of my body Iíd considered at risk. My skin? Call me whatever name you like (ďfoolĒ is my personal choice), but the fact that my skin is an organ and is as susceptible as anywhere else wasnít something Iíd considered. ††

My oncologist got me in to a dermatologist super quickly, who assured me that cancer was not a factor. ďDid you tell him what your treatment is?Ē 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. ††

Iím fortunate that my friends and husband donít hold back about my failures as a patient. Iím sure they wonder why I can be such a great advocate for my kids ó fearless and ferocious ó but I donít 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 theyíve accumulated on you for themselves. I donít want to spend my time reciting the litany of my woes. Canít they just read the file?! ††

No. They probably donít have time to read the file for every patient. They rely on us to tell them the whole truth every single time. I know Iíll slip up again, but Iíve been properly chastised by almost everyone who talks to me about my care. Iíll put on that advocate cap if I must and try again to be the good patient. Iíve got another chance coming up really soon.
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