Reciprocity and Respect

Long ago I reposted or tweeted some official-medical journal type article about how the warrior language can be damaging for many cancer patients. This was a report about a study on the issue, NOT some random blogger opinion piece. I got some comment or push back from someone, protesting that many folks found it helpful to be warriors, and they were tired of getting criticized for it.

It was weird because 1) I did not write the article, much less conduct the study and 2) I was merely posting it, not criticizing, and I did not find the language of the article to criticize the folks who do use the warrior language. Even weirder, it seemed like the victor claiming to be the persecuted to me—the warrior language is pretty pervasive and accepted as the social norm. Sure lots of bloggers post about their discomfort with the term, but it has not resulted in some cultural shift in which the word is used less, and folks identifying as warriors are in the minority. Cancer warrior is a commonly used term in society, in the media, in the Livestrong culture that still persists today.

The exchange with the person ended with the person saying something along the lines of if I don’t like it, don’t use it, but don’t criticize those who do. This was the weirdest part of all. Why? Because I don’t use it (so I did not need to be advised to not use it), but that NEVER stops others from using it to describe me against my will.

I’d largely forgotten about the exchange (I cannot even remember when it happened, certainly within the past year, and really have no idea which social media platform it all occurred on). But perusing some Facebook posts tonight, on National Cancer Survivors Day, I saw a few posts by bloggers who are not fans of the day, particularly some metastatic bloggers. I was shocked to read some comments on one post in which commenters flat out told the blogger she was indeed a survivor—any day she gets up she is a survivor.

Wow.

After all this time since my cancer experience began, I am still shocked at how disrespectful people can be. How dare this person force an identity on another, when the blogger, a woman with metastatic cancer, does not self-identify as a survivor? The gall of one person infringing on the wishes of another never ceases to amaze me.

I wish to be clear here. It is true, I do not like terms such as warrior and survivor and do not use them to describe myself. I have very specific reasons why I dislike them. If others wish to use them, fine. Everyone’s preference should be honored.

But I expect reciprocity—stop calling me words I will not use about myself. Everyone deserves this simple act of respect.

Addendum: Please know that I am speaking about ANY time someone labels me (or others) survivor against our wishes. Even if it is done gently, not in an attacking manner, it still is dismissive and patronizing.

Perhaps the reason I am so edgy about this is that when someone calls me warrior or survivor against my express wishes, it makes me think that they think I do not know my own mind. I do. The best analogy I can give is this: I never wanted children. From my teen years until my mid-30s, people would tell me–a grown woman–that I’d probably change my mind. I never did, I’m very happy with my choice. What makes people think they know me better than I know myself? I put up with it for too long on the not having children issue. I’ll be damned if I put up with it in CancerLand.

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The Next Time Round

Sometimes I forget that there are actually people out there who do not understand that metastatic breast cancer is usually fatal. Laurie Becklund’s video, in which she mentions how someone gave her a “get well” card upon hearing of her metastatic recurrence, reminded me of an upsetting incident that happened last summer. (For anyone who does not know, Becklund died Feb. 8.)

I’ve written often about the ever present fear of cancer, that I’ll never be “over” cancer, and how that sometimes that fear is a bit more pronounced. Last summer, after a “suspicious” mammogram that led to an MRI, and various other symptoms, I was in a state of higher anxiety about recurrence than usual. When discussing the fear, someone said to me that it would not be as difficult the second time round, because after all, I knew what to expect.

I was unable to respond. In the back of my mind, I was afraid I would sound like my usual self, always determined to see the bad side of a situation. Now I could kick myself for that. I think everyone views me that way anyway, even when I choose not to express my “negative” thoughts. But more importantly, I regret not taking the opportunity to explain what causes me fear. And yes, this person, given their profession, should’ve known better than to dismiss any fear.

It is so odd that anyone would think a second round of cancer would be easier, simply because a patient has been through it before, and knows what to expect. I want to say “yes, I HAVE done it before, I know what to expect, and that is precisely why I am so anxious—because it was horrible!!!!” I remember reading an article while in treatment, written by a caregiver, who said that over time, all the memories of chemo and its awful side effects fade. True, I don’t really “remember” how awful I felt, only because I’ve never felt so bad/sick/tired before or since. But the knowledge that it was the worst over-a-year-long experience of my life has not faded at all.

At any rate, recurrence will probably not be much like the first time round. I expect there to be variables. If it is a simple, early stage recurrence of the same cancer in the same place, I’d have a mastectomy—very different than the lumpectomy I had last time. That’s just for starters. There would be no radiation. And what drugs would get used—and would they impact me differently, given my body is not as healthy as it was going into cancer that first time? Those are just the thoughts off the top of my head.

The biggest issue is that recurrence can be in a different place, because the cancer would have metastasized. That is a completely different scenario. Metastasis is real possibility, and it troubles me that 1) some folks refuse to acknowledge or are simply ignorant of that and 2) treatment and outcomes for metastatic cancer are NOT comparable to the first cancer experience. Sometimes I wonder, with all the positive survivor culture that saturates everything, if some people mistakenly took home the message that breast cancer at least, never causes death.

For me, the fear, obviously, is death. Right now, even though I’ve had cancer, I can hang on to the idea that maybe I won’t get it again, and that I will reach an old age and die of something else. Metastatic cancer would put limits on that idea. Would I have to abandon the idea of reaching age 80, 70, 60, even 50?

Yes I’m aware of the anecdotes, of the many women who have lived well beyond that five year from metastatic diagnosis mark. And I am aware that many would prefer not to be viewed as a dead woman walking—would prefer to concentrate on living. I’m not discussing that, merely stating that I know such a diagnosis would severely limit the likelihood of reaching old age. Because I think there are so many who do NOT know this.

I do not know how I would handle a metastatic recurrence. One of the socially UNacceptable lessons I learned from cancer is that it is useless for me to say I’d know what I’d do or how I’d feel if a situation were different. I do know that I do not want to know.

I think this knowledge of limited life span should be enough for anyone to understand why a recurrence is such a huge fear, such a cause of anxiety. It should also explain why I cannot count on previous experience. The idea of “you’ve done cancer before, so you know you can do it again” concept does not apply to a metastatic recurrence scenario—at least for me.

Of course there are many other differences that I am thankfully only aware of because I read other bloggers who describe them. Differences like, frequency of doctor visits and scans, being in treatment permanently, switching to a new drug every time the current one stops working, and I’m sure there are more. How can these things even compare to that first cancer experience? For me, they do not.

Even worse, the incident last summer reinforced for me the awareness that most people do not even understand that treatment for Stage 4 (when a cancer has already metastasized by initial diagnosis—see note below) is vastly different for those of us who “caught it early”. The experience is different for ALL the “metsters”, regardless of if metastasis was found the first, second, or third time round. Thankfully I am not in that group, so I do not have the right to try and describe it. I’m guessing anyone who reads my piddlin’ blog already reads blogs by those who can articulate the experience. (Anyone who has other blogs or sites communicating the metastatic experience, feel free to leave links in comments, if you are so inclined).

I wish I’d brought up all these points to the person who tried to assure me that since I’d done cancer before, I knew what to expect, and that should reduce my anxiety. It only heightened my anxiety. That person is no longer in my life (for other reasons). I’ll make sure all those who do remain in my life, or enter it in the future, understand that the next time round, would not be the same for me, at least. Metastatic cancer is a completely different animal in CancerLand, and I’ll try to do my part to make that clear to those who just do not “get it”, to the best of my curmudgeonly ability.

Note: See here for explanation of difference between Stage 4 and metastatic breast cancer. Also find in this article information about how statistics and data do not accurately reflect metastatic recurrence. Another note about deaths not always being attributed to MBC: “Another quarter-million Americans are estimated to be waiting in the wings. I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.” from As I Lay Dying by Becklund.

Addendum: I rarely write about MBC because I can only speak for myself, and only write from my POV–so I never want to come off as someone worried & whining about what MIGHT happen, when those with MBC are worried about what HAS happened. So I hope everyone with MBC who reads this understands that is the spirit behind the post.