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?
anotheronewiththecancer 
Very heartfelt blog post. I read it and received a new insight of a personal journey through the cancer maze. I sincerely appreciate reading and feeling your energy of the experience. Thanks for sharing so much of you. God bless you.
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Thanks for reading it. I know there are no “rules” and that not all oncologists are going to use all the terms we’ve come to know even before we entered Cancer Land. I’ve always known the word “remission” as a good thing in cancer (before I got cancer), so it is troubling (when I think about it) to find it not used in my situation. I guess I’m still trying to fit my cancer experience into boxes that I knew of before I got cancer, and learned that there are no boxes.
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I am annoyed by the term “no evidence of disease.” It means that, well, the disease is in remission. So why not just say I’m in “remission?” But, no, that would upset the pink apple cart of hope, wouldn’t it?
I find myself in the situation of having to have a “talk” with my oncologist to remind her that I live in a place called “reality” and that I don’t need anything sugar coated or pinkwashed in order to deal with the unequivocal fact that I have stage iv breast cancer. It is what it is. If I can talk plainly about it, why can’t she?
It used to be that you didn’t talk about cancer in polite society. Now we can talk about it all right, just so long as we use the right buzzwords to mask reality. But we all know the emperor has no clothes, so why do we perpetuate this?
Okay, I think I need a cup of tea. It’s not even 6:00 AM and I’m already on my soap box.
Grrrrrr . . .
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Ha ha, and I got the NED term from reading blogs, and I just sort of quietly adopted it, thinking, “well, this seems to be what everyone is saying…” But lately I find myself just saying “I got no tumor today,” when asked by those I rarely see and cannot begin to explain to them the limbo-like state I feel that cancer has put me in. When I say that phrase, at least to the best of my knowledge, I am speaking truthfully.
The unsettling part for me and the word remission is that my friend’s husband keeps “going into remission”, then every 9 months, Lymphoma comes back to him. She’s a former nutritionist and he’s a super fit runner, and they are the classic reduce risk by diet, exercise, no sugar/smoke/alcohol; incorporating some of what I call “magic fruit” theories into the standard medical treatments, yet cancer keeps returning to him. This causes me to regard the word remission as a temporary state of just waiting for cancer’s inevitable return. No matter what words are “acceptable”, and whether one enters the medical industry machine or fully embraces the alternative methods, the bottom line is that cancer is not always beatable, no matter how much society dances around that when speaking of cancer. The faster the facade is dropped, the better.
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To me “remission” and “no evidence of disease” are interchangeable terms. We cannot see any sign/evidence of the disease at this moment, from these tests we have just done. It’s either gone … or hiding … so we wait, and check again.
What really really bugs me is the “cancer free!!!” proclamations I see when someone has just finished a course of treatment and had tests that came up with no evidence of disease. Even in those wonderful instances when the person actually never will have a recurrence/relapse, they still are living with cancer’s effects on their body and mind for a good while yet, and as you so beautifully show in your post, even as one thinks one is moving on and life is ‘normal’ for a bit – here come the next round of Cancer Patient Appointments. Cancer free. HA.
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You probably know how I feel about all the cancer labels… admittedly, I still use some of them because sometimes there are no words that really fit when you think about it. What struck me most reading this was that I found myself nodding in agreement about us now being professional patients. Once the cancer label’s been slapped on, you don’t really ever escape from its weight. I discovered this even the other day at my dental visit… even there, I was a cancer patient now. And thank you so much for the mention! You’re so kind!
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Yes it IS hard to avoid some of the labels and the language. I’ve resorted to even some “war/battle” words myself. Eventually, something better will come along, I hope. And yes, my first post-cancer treatment to the optometrist was an eye-opener, pardon the pun. There was certainly a sense of “uh-oh, cancer patient, we gotta do a whole bunch of other stuff with her.” I just rolled my eyes and said no to most (I had a long drive ahead and no one warned me that the tests would impair driving…that kind of thing needs to be told to me while I’m making the appointment, not after I’ve driven myself there, for crying out loud). All I wanted was a renewal for my contact lenses prescription!
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This is a great post and I’m always thankful when someone sends links to the blogs to twitter. It’s how my chemobrain keeps up ….. IF I don’t get distracted.
I hate labels but I prefer to choose the ones that I want rather than have them thrust upon me by others. My status is a mouthful:
I am a breast cancer patient, 6 years post treatment.
Technically, I ACTIVELY take a pill every day so I’m still **technically** in treatment. I will never say remission. I do use NED only because it seems to best fit where I am in this mess. NED. I know there are cancer cells in my body. We all have cancer cells in our bodies. Until the cancer cells activate (hopefully never), I don’t really take offense with the term NED. The implication for me imparts truth and reality. There may be disease but it can’t be seen.
When it comes to the Stage IV patients like Scorchy, I can’t assimilate NED into the vernacular. The only reason I will even presume to speak from the Stage IV point of view is because of my mom. I won’t ever call her NED. She is fine. Today. On permanent meds she is tolerating quite well. Today. I’m acutely aware of how rapidly that might change……
Good discussion!!
AM
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I guess it is weird to say I was lucky to be HER2+, being that it is more aggressive, but on the bright side, at least I can say “I’m done”, I’m not taking any pills or anything for cancer.
I do have a murky idea of remission, it seems like the one in remission is always waiting for the inevitable return of cancer, but then I think, I’m sort of always going to be on edge waiting for cancer’s return anyway.
Very good point about we all have cancer cells in our body anyway, just hoping they do not activate. I believe another comment here mentions the phrase “cancer free”. In reality, no humans are cancer free, just tumor free. I said in another response that I find myself saying “no tumor today.” Think I’m just going to use that one now…until something better comes along!
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All these metaphors and labels are just a way of covering up the full impact cancer. .. I never knew what the word NED was I thought it meant New Evidence of Disease. Who woulda thunk it was the opposite.. ?
And the word remission. Come to think of it I never heard my Oncologist use those words for me. I am not stage IV but I am Stage /III Grade/III my dealing with cancer is now entering the 5th year knowing full well how precarious this time could be. how quickly things can change on a dime.
I especially detest metaphors that relate to war ..This morning I received a note from a friend and he stated to me how well and how *brave* I am *fighting* this *battle* with Cancer.. *sigh* Oh I forgot one that’s on top of the list when I am told I am cured by friends. I retort “No I’m not” they look at me funny change the subject rapidly… Alli…..
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I could go on all day about every single word I object to in cancer language, especially the war ones. I did go on about how everyone refuses to admit people die from cancer in a post called The D Word, see here: https://anotheronewiththecancer.wordpress.com/2013/04/12/the-d-word/. Hope you like.
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Excellent post on words used in Cancerland. I’m almost 12 years out of initial cancer treatment and 6 years out of a bilateral mastectomy, and I’m still confused as to what to call myself. I went from “survivor” to “thriver.” Now the word I use for my self is “breast cancer self-advocate” because that seems most accurate. I really do hate labels. I learned about the NED term through the online community; my doctors have never used that word.
Wonderful post. Thank you!
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Thank YOU, for reading and commenting. I have gone on about this topic before, certainly about the avoidance of saying anything admitting that cancer patients die (see response to comment above). These days I say I’m a cancer patient with no tumor today. I wonder what I will call myself in 15 years, should I manage to avoid more cancer? But I will never not be at least a former cancer patient.
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Hi Jean (I cannot seem to reply directly to your comment, hope you get this). Cancer free…that is a whole other topic, isn’t it.
I’ll address the literal sense of cancer free first. If you read some of the other comments here, Anne Marie points out that we all have cancer cells, the idea is to have them NOT activate. So even those who’ve never had a tumor are never really cancer free.
Now, about the other sense of cancer free, I did not think about until your comment–gulp! I suppose, no I will never be free of cancer because it was an event in my life, much like high school or just about any other thing that can happen to a person. Cancer patient or survivor or whatever I call myself, it is just one of thousands of things that make up “me”, just simply not the sole thing. So, no I will never be free of cancer. I’m sure that frustrates some folks who think cancer patients should “just get over it” once out of treatment, and ooooo, the smart-mouth retorts I could make to that!
Thanks for reading and commenting, and giving me more to chew on in my brain. Hope to hear more from you.
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Interesting post. I have heard the words “you are cured from ‘THIS’ cancer,” which means it can happen again. Kind of like when I get a cold or the flu. I can always get those again, although I can technically be cured at the time one happens. Of course cancer and the flu/cold behave differently. I used that to explain about the language that was used with me.
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Wow! That is an interesting way to put it!
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