Early on in my post diagnoses life, I began to refer to myself as a patient, and I still do despite being about a year out of my last infusion of Herceptin (my last cancer related treatment). I rejected the word survivor at first because it just seemed like another one of those words in the pink package, along with “hope” and “battle” and “lost her fight with cancer”. These little euphemisms make me cringe. As I became more educated in the ways of the world of cancer, I learned that “survivor” makes those with Stage IV annoyed, and rightfully so. Now I am even more determined to avoid the word in reference to myself.
I was re-reading Barbara Ehrenreich’s “Welcome to Cancerland” for fact checking today and about half way through I re-read her passage about the language of cancer, derived from AIDS movement, pointing out that “patient” and “victim” have an “aura of self-pity and passivity” (hmmm, passive is exactly how I view that word “hope” so popular in breast cancer culture, but that is another post).
OK I might have a bit of self-pity because cancer landed on me, but that did not stop me from taking my medicines, actively monitoring my treatment regime, and doing many other things to make sure the tumor went away. But the truth is, I don’t take credit for it; the drugs, the surgery, the radiation did the “fighting” for me. I was OK delegating that task to modern medicine, while I advocated for myself as a patient and battled the insurance company. I’m never going to say that having cancer did not totally suck, and I will never stop being angry that I got it, even as I move on with my life. For me, it has less to do with self-pity and more to do with being realistic, but hey that’s just me.
I would not classify myself as passive. There are indeed passive patients, and in the beginning I’m sure I was, just going to and from whatever tests and whatnot that seemed to be scheduled without my input. But I learned to take control, to be an active patient. I did simple things, like scheduling chemo infusions in the afternoon so I could at least have lunch before going to get poisoned (I could never eat after infusion). When I was done at 5 pm, great! I could just go to bed. But even while the good medical professionals at my cancer center use the “survivor” style language, they still treat all patients like “passive patients”, not “strong survivors”. Even now, a year out of treatment, I still define myself as a patient because of this. I still have to haul my ass in there every six months, and at the end of the meeting with the oncologist, I am handed a list of appointments to attend at the next six month mark. These appointments are made for me, without anyone bothering to ask me if any days or times are convenient. I am a patient and I am to show up at the appointed time, that’s that.
Well no, it isn’t. Since I am self-employed running a pet sitting business, I tend to need a bit of flexibility in my appointments. I cannot just drop a scheduled check-in with a pet, because that is a payment I would miss out on. So I tell this to the medical appointment makers as I once again change my appointment. “Hey, y’all wanna get paid? Then stop making appointments at times I need to work.” I know my medical team cares for me, but this is still a business, with a financial transaction, and, man, bring up the subject of money, especially the threat of non-payment, people get real accommodating! But I know that in six months it will be forgotten, that I will again be handed a list of new appointments, because, hey, I am still their patient, no matter what I call myself.
My occupational hazard is to describe my status in pet care terms. When I was at the treatment center every week or everyday during chemo and radiation, I compared it to being “crated”, like a puppy being trained not to chew the furniture while the humans are away. Once I graduated to my every-third-week Herceptin infusions, I considered myself on the “short leash” with a gentle lead, perhaps. Now that I only go in every six months, I see myself as on the extendable leash; able to explore more of the world outside of cancer, but they keep reeling me back in.*
So I shall continue to refer to myself as a patient until the cancer center lets me off their leash, or at least until I think of some better word. What I will do in the meantime, as a non-passive, non-self-pitying person who had cancer, is use the anger to become an advocate to push medical science to find out the causes of cancer, to develop better methods of detection and treatment, and to be the one in the dark corner in the pink world where I whisper to others with breast cancer, “If you don’t have anything cheery and pink to say, come sit next to me.”
*Note: No medical tools or infusion machines were chewed or harmed during my internment in cancer world (i.e. when they had me crated).