There was a great post some time ago on Nancy’s Point called Tiptoeing Through Survivorship which, in conjunction with some other random posts made me think about a small aspect of living in the shadow of cancer. Most of the post and discussion had to do with fear of recurrence, that gut feeling that we’re never really done with cancer, even after whatever number of years out of treatment. Recurrence is certainly one of my biggest fears, but as I read the post I realized I had a bigger problem: after being about two and half years out from my diagnosis and a little over a year after completing treatment, I still feel like I am under the yoke of it, still somehow a patient.
Trying to sort out this odd feeling in my gut, I had to think hard about why I feel so unsettled and unfinished. I realize it has to do with my interaction with my oncologist. I’m not picking on him, or the others at the cancer center, exactly. I’ve mentioned before that I still do not know what to call myself. I agree with what I’ve seen on tons of other blogs: I cannot be a breast cancer survivor until I die of something else (not really looking forward to that). Having that view reveals that I fear or expect cancer to come back, especially since it seems to happen quite a bit (damn the stats, I’m just thinking about all the people I know IRL and that I read to which this has happened, and each one is one too many).
I continue to call myself a patient, because I find I am still treated as one. It irks me that every six months I get a list of appointments, without any warning or consultation, or maybe just a simple “hey you need this, this, and this, shall we schedule for you?” Every six months I fall down that rabbit hole again, in which the cancer center takes over. That was fine at the time of diagnosis, I was too overwhelmed to do it myself, had no idea what I was doing, and was lucky enough to take time off to start dealing with cancer, since it was going to consume much of my life at that point, so when I had to be where did not matter. But now I am an informed patient, almost a professional at it. I get unsettled because there is an overall “you can beat cancer and move forward with your life” air, which is great in its positivity, but in my view, is the opposite of how I perceive what is actually taking place: that I am still viewed as a patient whose cancer, treatment and health must be managed by the center, not me. I’m trying to move forward, and trying not to be a patient anymore. And I have lots of bills to pay and being self-employed, I need to manage and be in charge of every aspect of my personal schedule, since professionally I need to be flexible for my clients—because that is how I get paid, so I can pay the doctor, hello! It’s not really a big deal, I can change the appointments, it is the way the pre-scheduled appointments just appear in the mail, like a command, that bugs me.
But scheduling conflicts are not even the worst of it. It is because of another word in cancer language that has never been used with/to me. I’m not talking about the battle language of cancer, which I dislike, or the dumb stuff people say to patients. I’m talking about the word remission.
Not once has this word been said to me. I hear it coming out the mouths of other cancer patients, or I read it loud and proud on other blog posts—the minute they get that last treatment, I see blog posts screaming “I’m in remission.”
Now, I don’t expect to ever hear the word “cured,” in fact my oncologist has said he would never say that because there is always that risk, however small, that it will return. He thinks it highly unlikely to return (but then I think about all the times I fell outside the stats). I appreciate his honesty; I don’t need him blowing sunshine up my ass. I’ve waited for him to say the word remission, but it hasn’t happened. I’ve never asked, always holding my breath during my examination, waiting for the dreaded words about seeing something that looks or feels wrong. I’m too happy to not hear those words so I just forget to ask if I am in remission.
It is not until later, when I see at random a celebratory post that I realize this lack in my life, and frankly I get jealous. Even though I’m a curmudgeon, I’d like to have a little something to celebrate. Or at least a definitive end to this round.
My six month check-in is coming up. Damn right remission is on the list of topics that need discussion. Geez, do I have to wait until I’m at that magic five year mark?