Reframing Cancer Survivorship
Today, on National Cancer Survivors Day, I am asking the question who are cancer survivors and is it really necessary to set aside a day to celebrate survivorship?
The terms cancer survivor and cancer survivorship have different meanings to different people, and how we refer to this growing population of people living with cancer has stirred some controversy. Here is just a sample of some of those in the blogosphere for whom the term survivor is an uncomfortable label:
I don’t like labels very much. I tend to avoid them whenever I can. The survivor label is one that makes me uncomfortable for various reasons ~ Nancy’s Point
I am conflicted about the term survivor. To me, a survivor is a person who has been utterly victimized, who is powerless and suffering at the hands of something or someone that is about as close to pure darkness as exists in the world. ~ Uneasy Pink
I’m not comfortable with that word, “survivor,” which connotes some sort of superhero who has battled and defeated the demon known as cancer….The problem is that on a subliminal level (or maybe not too subliminal), there’s a blame game going on: those who survive did something heroic; those who don’t survive just weren’t tough enough ~ Calling The Shots
Survivor, to me, sounds too triumphal, too final, like it’s finished – all over. But breast cancer is not like that – as I am finding – now approaching four years from diagnosis ~ Being Sarah
So, I am faced with a dilemma. I use the term cancer survivor but I too am sensitive to labels and words and their meaning, particularly those that make the wearer feel victimized and helpless. But what should we call this phase for those of us for whom active cancer treatment has ended? No one has yet come up with an all-encompassing term to cover it, apart from survivor.
Perhaps you too struggle with the label. Or do you embrace it as a sign of having come through a trial and survived? What if you are living with metastatic cancer? Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?
My next question to you is do we need to set aside a day to celebrate survivorship? Is it perhaps too triumphalism? What of those who didn’t “survive” cancer on this day? Or is it a good thing to have a day when we unite together in a show of solidarity of our collective survivorship?
I don’t have the answers to these questions, but I would love to discuss them with you, so please join in the discussion and let us know what you think of National Cancer Survivors Day and survivorship.
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Another excellent and provocative post – I don’t have any answers to your questions, so I am looking forward to reading what those who are more vocal and intelligent than I think
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I detest the cocky survivor label – why do we have to call it anything?
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That’s the word I’ve been searching for – cocky. That is what bothers me about the races, the survivor events, etc. That is what separates the Triumphal from the Thoughtful. (Not that many people aren’t some of each.) That is what separates the metastatic from the we-don’t-actually-know-yet. Cockiness. Thank you for providing the word, Ann.
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Amen! Insensitive came to mind, but ‘cocky’ nails it. As I said in my post, this doesn’t mean we shouldn’t each celebrate our own milestones, anniversaries, and victories … I just think there is a way to do so without minimizing the outcomes and fates of others. The truth is, there is no cure and there are no guarantees. I don’t dwell on that — but it is sobering and humbling.
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This sums up things just perfectly! “The truth is, there is no cure and there are no guarantees. I don’t dwell on that — but it is sobering and humbling.” Thank you x
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I can honestly say I never gave it any thought until I read this post today…now you have got me to re-examine my relationship with the term and decide if it is an entirely appropriate one.
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I too was never a fan of the term survivor. However, I will admit, my first concern was would I survive! Being the academic geek that I am, I liked the phrase “cancer graduate” that was shared by a fellow “student” 🙂
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How clever of you to come up with a new term Cara 😉
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Marie this is perfect. I woke up today wanting to honor survivor’s day but feeling the pull back that my friends here have so eloquently expressed. You have helped explain this complexity to your readers in a concise and open-hearted way. Thank you!
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It has taken me some time to fully realize the complexities of survivorship Lani – in my earlier pink ribbon wearing days I had no such compunction about using the term, but I have become far more educated to the complexities since joining the blogosphere!
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Hi Marie
I agree with all of the comments above. I haven’t done anything amazing because of my breast cancer story. I did what anyone else in my position would do. If anything it separates me. What about all of the people who have beet other diseases? Isn’t that just as important? So my vote is no I don’t think we need a national day.
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Wonderful to hear from you again Luann and thank you for sharing your thoughts with us today x
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Wonderful post Marie. I agree with Cara…wondering along with the concern of surviving was a major point for myself. I love Cara’s phrase…”cancer graduate” That’s one I think I can live with 🙂
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Hi Suzzann, I appreciate your input 🙂
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“A cancer survivor is anyone with a history of cancer from the time of diagnosis and for the remainder of life” this is the definition from The National Coalition for Cancer Survivorship and to me it is pretty all encompassing – I have no problem with the label of survivor and wear it proudly
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I am ***thankful*** for my good fortune. Grateful that ***FOR NOW*** I am NED. Aware that my prognosis to remain NED is excellent but acutely aware this is not a guarantee and for that reason, the word survive is not one I am fond of using. I am not a fan because I am so sensitive to those whose disease has spread, to those who live with ongoing issues that have a tremendous impact on their daily quality of life, to those who have died.
Today, on National Cancer Survivor Day, the very fine line that exists between NED and survivor will be in my face. I am celebrating my “new” godson’s 2nd birthday. I was not his godmother last year. I am his big brother’s godmother. The godmother who stood with him cradled in her arms at his baptism had just completed treatment for her stage one breast cancer. Last year, at his first birthday, she came early and left before anyone else arrived. She was just diagnosed with mets. She died in January.
I was asked by his mom, my very dear friend and a member of my “husband’s” family to step in on behalf of this child. How ironic that today is the day we “celebrate survivorship.” When I was purchasing his gift….. a little “extra” gift because he is now my godson, I was blindsided with emotions. Choking back tears as I was paying for the gift, I thought about the senseless death of her friend, someone whose hand I held when she was diagnosed and throughout her first phase of treatment and someone for whom I remained in the background trying to find ANY treatment options when she metastasized. This all serves as to keep me exceptionally mindful of this fact: The only way we truly “survive” breast cancer is the day we die of something else.
I find this word to be insensitive to those who grieve the loss of loved ones and to those who are waiting to die and to those who are metastatic… looking over their shoulders. It’s a slap in the face to those who are “surviving” with the need to be on disability because they are physically challenged each and every day as the result of those toxic treatments that elevated them to become “survivors.” With breast cancer in particular, thanks to that ubiquitous pink ribbon and its representation of “success,” it minimizes the challenges we face when we are beyond active treatment.
I’ve been thinking about this lots and trying to find my own word, one that suits me. The best I have for the moment? I’m a NED-BAT. And, I MAY just start using that…. ned-bat.
No Evidence (of) Disease-Beyond Active Treatment
This is an important discussion, Marie. Thank you for once again bringing a though provoking topic to the table.
With much love,
AnneMarie
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Thank you for your terrific reply Anne Marie – I just knew you would have a lot to say on the topic 😉
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Marie,
What a wonderful and thoughtful post! It certainly is tricky. I did not feel comfortable calling myself a survivor for several months after treatment and a friend who had been through a support group told me that’s normal. On one hand, I think we should all be proud to call ourselves survivors because we’ve certainly earned it. In a way, it’s a way to tell cancer where to go. But yet I am more likely to say “I had breast cancer.”
The notion of survival is weird because you could argue that you survive something only when it’s firmly in your past. You know when you survive a car wreck or a tornado. With cancer, you can never be sure. I know a wonderful woman who says she is “surviving” ovarian cancer, but will not call herself a survivor, to make just that distinction. But my beloved Pam called herself a survivor, and she was, because she survived everything evil metastatic cancer threw at her until she no longer could. She said “Survival is an art, and I’m creating my own canvas.” And what a wonderful canvas it was.
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“Survival is an art, and I’m creating my own canvas.” I love this – thank you for sharing Pam’s striking words with us Jackie x
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Marie
Wonderful post, and a really, really important post. Language is so important to how we view ourselves, and how we care for ourselves – and how the world around us reacts. Language feeds perception and perception is everything.
I have a very difficult time with the concept of survivor. I don’t like the whole war metaphor that survivor is linked to. I don’t like the idea of fighting my body. I like caring for it. And even though cancer treatments are far from gentle, I need to place a more caring frame around my treatments. I can’t spit out the word “survivor” in describing myself or anyone else. And please, no victim of cancer.
Survival is a word from graduate school – I think about life tables and statistical functions. But that’s just me.
Almost exactly a year ago, I wrote a somewhat clumsy post about the language of war in cancer on my blog, so I’ll put a link here, if that’s ok….but basically, I wanted to say “make love, not war”. I hate the concept of fighting within my body. It just feels wrong.
There are so many women and men out there who face cancer, and face treatments that are difficult, face uncertainty. We learn to deal with this day by day, because it’s pretty much the only way to get through it. So we support each other in these wonderful ways.
Anyway, a link to an earlier post
All the best
Elaine
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Elaine, thank your for such a thoughtful response to my questions and for sharing this link to your post with us – I am off to read it now
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Great post, Marie. I am uncomfortable with the survivor label, though I do use it too from time to time, due to a lack of a better word I guess. I don’t care much for many labels, but this one somehow seems to diminish the lives of those who do not survive. Plus, it seems to suggest our cancer experience is over and for me it’s just not. It’s a personal thing or feeling. I don’t begrudge anyone who does like to call herself a survivor. And as for the designation of a day called National Survivors Day, I’m sort of ambivalent. It feels rather insincere or gimmicky for me personally, but again, to each their own.
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Nancy, as I mentioned earlier to you on Twitter, it was your post on this topic last year that made me rethink my own use of the term survivorship. Although I continue to use it, I try to be more sensitive to those for whom it is an uncomfortable label.
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I have an instinctive negative reaction to the term survivor. Indeed here in Scotland the policy documents preferred the term Living with Cancer which I do feel more comfortable with. It acknowledges longer term impacts should they exist alongside survivorship and hopefully creates an understanding that those impacts may require on going support. But taking my policy hat off and putting on my Audrey one (!) I think some of my reaction is that the term survivor suggests a victim and also a victim of a single event. Neither feels right to me, I am not a victim and never want to be. And in my complex experience now I realise that this can be a long haul and each stage can have it’s impact which has to be taken on board. So an eternal student of breast cancer, that’s me! Living with cancer but there is much more to me too…….
It’s good to celebrate survival but my recommendation is take some time to do that every day .
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Hi Audrey, great to have your perspective here and I agree with you that it is the victim label that really irks me too.
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Oh Marie, thank you for writing this. You have forced me to move beyond dancing around the subject to fully confronting it – which I will, but not today, because I need to ruminate a bit more. My “Survivor’s Day” musings will have to be belated. (To tell you the truth, I didn’t even know there was such a day until I scrolled through my Twitter feed this morning).
For now, what I know for sure is that I will never refer to myself as “a survivor” within the context of cancer, nor do I want anyone else to refer to me as such. There’s something about the complexity of cancer and its innumerable and immeasurable influences on my life – and the lives of those to whom I matter the most – that won’t allow me to attribute a single label to it. As everyone who has commented knows, only those affected by it appreciate the extent to which cancer changes the color of a life being lived.
As you know yourself, I’m from a part of the world where words were and are often used to divide, exclude, shame, and inflame. Maybe that’s another reason why I struggle so with the language of cancer, not just the “survivor” label. A couple of weeks ago, I mused about my as “an identity crisis” thus: “Breast cancer has made me see myself as an immigrant once more, navigating her way within the context and complexity of cancer country. Again, I perceive a gulf between myself and others who do not yet understand the politics, the language, the business, the norms of this new, strange culture. Cancer country, where within confidences shared between kindred spirits in hospital waiting rooms and in the advocacy for change that ripples through the online community, I feel more a part, and at the same time, strangely more apart from the people who know me best.”
So thank you for striking up the conversation. It’s an important one.
x
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Hi Yvonne, I see you took up this theme on your own wonderful blog too – thanks for contributing to the discussion so eloquently as always
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Hi Marie – Thank you for making me think out loud about it. Such a complex issue for all of us …
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I, too, have issues with the “survivor” label, for all the reasons mentioned. I am also troubled by the warfare and battle images associated with cancer. That kind of talk makes the ones who die sound like failures or losers. I also dislike the temporal finality implied by the term, as if the cancer were now over and done and the experience is solidly in the past.
Life isn’t really so binary, so cut and dried, especially not for those of us who live with metastatic disease. The prevailing notion is that the two possibilities with cancer are “cured” and “dead.” This halfway world that I inhabit is neither. My disease is considered incurable. I can’t ever put cancer behind me.
That is true of many things that threaten or interfere with human flourishing. I had early life experiences that scarred me emotionally and cast a shadow on my adult life. I have substantially healed, but I will never be “normal.” Nevertheless, I don’t want to be considered a “victim” of any of the experiences that have made me the person I am today. “Survivor” has come to be used as a euphemism for victim, as a way to elicit sympathy or admiration or pity. I don’t want any of those things. I want to be received as the person I am today, not labeled or categorized.
I would like to find a word that applies to the art of living well no matter what, and use that word to describe myself. A “survivor” might just be hanging on to life out of fear of death, with no end in mind other than avoiding the inevitable. Everyone dies, but not everyone meets the challenges of life with gusto, grace, and gratitude. Ironically, it is often people who have faced life-threatening situations who find within themselves the will not just to survive but to thrive.
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what a wonderfully insightful comment Amy – thank you!
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I detest the term “survivor” because it implies that anything else anyone has ever gone through…abuse, accidents, homelessness, etc. is not as important as what I “survived”.
I agree with AnneMarie that we only truly survive it if we die of something else. (OK? so call me a cancer survivor when that bus gets me)
I like to say “cancer thriver” because I am still living “with” it as we all are that have “had’ it.
Thriving, growing, producing, learning, LIVING!
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Thank you for your great contribution to the discussion – I felt so energized reading your last sentence!
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Marie, I’m really torn on this issue. Part of me wants to say, Heck ya I survived cancer — I kicked it to the curb! But part of me wants to say, What choice do we have–rolling over and not going to treatment doesn’t seem like an option. The idea of someone being chided for not “fighting hard enough” is reprehensible. Thanks for opening up this important dialogue.
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That’s me too – torn on this issue – glad to know I am not alone in being so conflicted x
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I do not like the term survivor at all. I find it demeaning and humiliating to be labeled. I simply say that I *had* bc and that I am fine now. In fact, unless people know I had it, I generally don’t bring it up. I’m back to my old normal and have no reason to dwell on the issue. It’s not that I won’t discuss it, but I think that the label just makes people feel like they have to cling to that period of life…and that’s just wrong for me.
So, I do not use the term at all and do not think there should be a day…but that’s just me.
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No it’s not just you Jen 😉 Lots of us agree with you and feel as you do
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Hi Jen, as you can see you really aren’t alone in thinking as you do. Thanks so much for your comment.
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Wow! What a terrific disussion – I had no idea this term of survivor engendered such strong feeling and I will certainly think twice before i use it again myself
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You do like to ask difficult questions on your blog, don’t you Marie?!
Like some of your other readers, I’m not keen on labels. I think I have called myself a “cancer survivor” on Twitter, but I wonder whether that’s an accurate description. To me, a survivor is someone who has lived through an ordeal which is of a finite nature, such as a shipwreck – or the Holocaust.
We are “living” with cancer, but I’m not sure we can say we have “survived” cancer, because it’s not over yet. We may be “in remission”, but there’s always the possibility of it returning – at which point, could we no longer call ourselves “survivors”? Even if we lived on for many years after that?
Also, as has already been pointed out, “survival” often indicates struggle – and although it might feel like a struggle when we’re pumped full of weird drugs, is it cancer we’re struggling with, or the drugs?
As I say, I have called myself a “cancer survivor” because I couldn’t think of a better way to describe having had cancer and continued to live beyond the initial (and second) diagnosis. So I wouldn’t object to someone calling me a cancer survivor.
I’m not sure about National Cancer Survivors’ Day, though – what are we supposed to do? Have a street party? Wear a pink costume and march down the street with a brass band playing?
Every new day is worth celebrating, not just one day of the year!
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Julia, thank you so much for sharing your thoughts with us. I found myself nodding in agreement when reading your words and I love how you finished with Every new day is worth celebrating, not just one day of the year!
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Some who object to the word “survivors” replace it with “thrivers.” But many like the word “thrivers” even less, as it’s too much of a “pinkish” word. I prefer “survivors” over “victims,” which was the original, nasty term. Many define a survivor as anyone who has been diagnosed with the disease and is still living. Other define the group as those who’ve completed treatment. But how do you define treatment completion, when some have to take daily pills for many years?
Lori Hope uses the phrase “people punched by cancer” to define people with a history of cancer. I like that image rather than a bland survivor label. It evokes a shock, a traumatic impact. So that’s the expression I often use in my writing.
This is my perspective on the controversy of setting aside a day: I celebrate every day I’m alive. I wake up and say, “Wow, another sunrise! Another adventure!” Maybe that’s too rosy (not pink, but rosy as in rose-colored glasses). But to each her own, I say. And maybe it’s good to set aside such a day as a reminder to those who don’t have cancer but want to convey their best to friends and loved ones who do.
Thanks for bringing up this important subject, this third-rail of cancer politics. xx
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Thanks Jan as always for your insightful comment. I also love what you say about celebrating every day – knowing you as I do, I know what a genuine place of thankfulness and love this comes from – not some pink pandorish place. I continue to be grateful for your wonderful writing and support every day xxx
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As somebody fortunate enough never to have encountered cancer, it is good to be challenged to think about how words and phrases many of us bandy about without thinking – the ‘battle’ with cancer, ‘survivorship’ – and consider what they actually mean. As somebody who organises an annual event to raise funds to ‘fight’ cancer, and therefore coming into contact a lot more with people who have or have had it, I find myself thinking a lot more before I speak. Thank you, Marie, for the education: I am always conscious of how your posts challenges me through posing things as questions rather than instructions, making me reflect on my own – often unconsidered – beliefs, and in turn allowing me to challenge others. Keep up the good work 🙂 Mx
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Maire, I was hoping you would read and comment on this and I appreciate your input from your own experience. Not everyone is as sensitive to words and labels and it can come across as being semantic or is it pedantic, but as you have seen from the comments, words do matter, when so much else has been taken from the cancer patient.
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I attended a cancer survivor “celebration” yesterday put on by a community non profit. In touring the facility before the program started I found they had a vast selection of information on breast cancer and tiny slot boxes for materials on other cancers. What they had on my rare type of leukemia was thrown in the back of the slot box for another leukemia and was from 2009 and useless. That’s fairly typical, sad to say. The event itself was sponsored by a for-profit hospital chain and most of the “celebration” presentation was a commercial from them saying they were better than all other hospitals, complete with a “testimonial” from a man who was listed as “survivor” in the program while everyone else had a name. It was ironic to go to an event billed as a positive celebration of living and then have this crass, inappropriate messaging thrust on us to remind us that we all have the potential for relapse, recurrence, mets, etc. I’ve viewed being called a survivor as an improvement over terms like “victim” and “sufferer.” What I learned yesterday is that it really doesn’t matter to those in the cancer industry, they view us as “customers” and continue to show in multiple ways that their main goal is to make money off us and now they have invaded the survivorship programs too.
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Dear Pat, you are so welcome to this discussion and thank you for sharing your experience. I am all too well aware of the disproportionate attention given to breast cancer patients (my own mother died of brain cancer – not a “glamorous” cancer) and you make excellent points here. I also agree that it is the words victim and sufferer that really make me cringe the most – survivor is definitely a step up from them. Hope to see you back here again x
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Thanks, Marie. I’m a 20 year breast cancer survivor. The leukemia diagnosis, in 2009, means lifelong treatment via oral chemotherapy. I’m a “survivor” but will also be a “patient” for the rest of my life, with a cancer that does not have a remission. There really isn’t a good word for those of us treated this way. Prior to my form of treatment most patients could be called “dead” within a short time, and “survivor” works just fine until there’s a better term. Thanks for a great discussion.
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Another excellent, thought-provoking post, Marie!
Because I’m still in the reconstruction phase of BC, and also taking Tamoxifen, I refer to myself as a BC “patient.” I don’t use the term “survivor” because I’m still actively working my way through all this. I have 4 more years of Tamoxifen and then 5 years of Arimidex. Maybe after all THAT I will say the word survivor.
But there’s a part of me that is reticent to use the term at all — afraid to jinx myself, afraid to give myself a kinehora.
I like AnneMarie’s NED-BAT term! I vote for aspiring to be a NED-BAT.
xoxo
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Well Renn, there is a defintion which says we are survivors from the day of diagnosis, so by that defintion, you are a survivor 😉
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Glad to see I am in such good company … This is not merely about semantics or being politically correct. I have been conflicted about this term since Day One for all the above mentioned reasons and more. I have always cringed at the term — as well as when people tell me I am a hero, or that I inspire them. I know they mean no harm and are at a loss as to what to say. To all of us who have been through the BC experience (be it surgery, chemo, radiation or combination of all three) I ask you — did we really have any choice but to be brave or strong? I feel that we all did what any rational person would do in my shoes. The real “heroes” in this world are people who have voluntarily put themselves in harm’s way — our military, police, firemen, etc. as well as people who were truly victims of abuse or violence or tragic accidents. I hope that doesn’t offend anyone … that’s just my take.
That said, I too have questioned the need for celebrating ‘survivorship’ in this manner. We all have our personal dates and anniversaries that are meaningful and many of us have shared those victories within the BC community and #BCSM. But it’s long troubled me to publicly celebrate a day such as this … I saw the ACS posting earlier this weekend to slap a banner ad on FB or Twitter and the first thing that struck me was the husband of a dear friend that I lost earlier this year from my support group and all of our mutual friends, some of whom are survivors. And I got a pit in my stomach. It felt wrong and disrespectful. Not that I am not grateful for my prognosis, but as we all know, there are sadly no guarantees.
I’ve thought long and hard about an appropriate term that I could use in place of ‘survivor’. I love Chemobrain’s NED, but that acronym doesn’t have meaning outside of our community. I’ve often say that I’ve been ” Successfully Treated” when I refer to my diagnosis, which is technically accurate (though admittedly, I don’t like the connotation of ‘successful’ as it pertains to those we have lost).
There are no easy answers but it is a valuable discussion and it’s nice to know that others are similarly conflicted.
Btw, if anyone is in the NYC area and is interested in seeing Pink Ribbons, Inc., it has opened at the IFC theater in Chelsea and I’m planning to see it. Would be fun to meet fellow posters face to face. : )
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Thought-provoking, as always, and wonderful comments as well! I believe this is an emerging conversation — one that needs to happen, and one for which there is truly no conclusion. But here are some of the things that it provoked in me:
–Why do we continually need to make comparisons? Can we truly not come to accept that we will each have our own evolution of self-identification? We need more respect for one another. As an example…in every other context I can think of the word “victim” is how we talk about someone upon whom outside circumstances intervened in a profound way and to their detriment (tsunami victims, for example). There is not necessarily inherent judgement or blame. But watch someone use that word in reference to their own cancer experience, and they are pounced on.
–How does the use of the word “survivor” diminish, in any way, anyone else who has ever had cancer? I remember in the days after my diagnosis, struggling with when I would be considered a survivor. Was it after treatment? After NED? I came to the conclusion that anyone who got through the day of their diagnosis could rightly be called a survivor. I have used it in that context ever since.
–Do we need labels? Yes and no. Or perhaps better, we may not need labels, but we need language (words matter, right?). We need language to describe our experience, to communicate with others, to support, to educate…. We need all the words we can get! But we also need to be able to have a conversation. The latest trend seems to be “people living with cancer.” So in order to appease others do I need to now introduce myself as “Hi, I’m Lori and I’m a person living with cancer.”? (And there will be more on how objectionable I personally find that to be on my blog soon! LOL).
I am so grateful for the increasing sensitivity within our own online community about how we use our words. I hope it will continuously grow to embrace whatever language we choose to use for ourselves, and embrace all – whether they choose politically correct language or not!
And one last thought: for my money, YES surviving is something worth celebrating. Not because we survived cancer, but because it is part of the path that has brought us to today. I’m not suggesting a pink party, but I think it is healthy to reflect on where we’ve come from and be grateful for where we are. With appreciation for the fact that we each need to do so on our own schedules…and today may not be celebratory for everyone, I don’t really think we need a designated day to do it….
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Lori, I am so grateful for your measured, sensitive and compassionate contribution to this discussion. I just loved what you have to say and I do agree with you very much, that we are all on our own journeys (that’s probably another word that causes some people to cringe!) and that we should let people find the path that resonages most with them.
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Marie,
Great post. I’ve hated the survivor, war language forever. I don’t say I’m a survivor, I am a person who’s managing cancer. I usually say I was treated for breast cancer. Right now I’m NED-BAT too. For sure I’m batty. I defy anyone to call me a victim or a sufferer.
One of the problems is that when you fight cancer, when do you win? What do you win? Hope no one is offended if I say the “booby prize”.
But seriously, I don’t like the idea of fighting my body, I want to care for myself, be kind to myself. The treatments are violent enough, I don’t like the image of my body as a battlefield. Too much turmoil. It raises all of my anxiety triggers. The less vivid stuff sounds awkward, but maybe that’s because it’s not so commonly used. Still, I case about for language that seems appropriate and easy to use. Perhaps the lesson here is that the language is as complex as the disease.
Thanks for bringing this up, and thank you so much for making me write about this also!
❤
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SO well said! Lol, re booby prize. Would love for a group of survivors to discuss these issues with BC organizations or even BC conferences and symposiums. Too many well-meaning rah-rah cheerleaders who think they are helping but simply don’t get it …
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You are so right – people are well-being, but just don’t get it. Thanks for your comment
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Thank YOU! Your comment gave me much to think about it and you expressed your feelings about this issue wonderfully well.
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Another terrific post…and series of amazing comments! Thank you.
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Thank you Kathleen. I am so grateful that we have online spaces where we are free to express ourselves like this and debate the issues that really matter.
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So happy to find myself in such good company. This really isn’t about semantics or being PC. I too, have wrestled with the ‘Survivor’ label (even before my diagnosis 3 years ago) and I have become exceedingly uncomfortable with it. While I’m grateful for my prognosis, we all know there is no cure and no guarantees.
I’m not sure what a better word with be … I’ve toyed with a few and like Chemobrainfog’s “NED”, except that it doesn’t translate so well outside of the BC community and #BCSM. I’ve often referred to myself as having been ‘successfully treated’ for BC (though admittedly, I’m not sure I like the connotation of ‘successful’ in terms of not wanting to tempt fate nor compare myself to those who had less fortunate outcomes).
Over the weekend I saw that the ACS was promoting National Survivor Day, offering banners to use on FB on Twitter profiles. I was instantly conflicted as I immediately thought of the husband of a friend from my support group who passed away earlier this year and others who succumbed to this horrible disease and it just didn’t feel right to me.
By no means am I suggesting that ‘survivorship’ isn’t something to celebrate — it most definitely is and we each have our personal anniversaries and milestones which many of us have shared with each other either personally or in blogs and online. But doing so as part of organized, public recognition day feels very contrived and non-inclusive with respect to people living with terminal disease and all of those we have lost from all types of cancer.
I’ve felt similarly conflicted when friends and family refer to me as their ‘hero’ or praise me for inspiring them. Whether we have had surgery, chemo, radiation, or a combination of all three, we’ve all done what we needed to do to live. I always ask, what other choice did we have? But with all due respect, I personally don’t categorize that as ‘heroic’. My heroes are members of the military, police, firemen, etc. who voluntarily put themselves in harm’s way and risk their lives or people who have been abused or otherwise victimized and thrive against all odds. I hope that doesn’t offend anyone, but the idolization of people with cancer really bothers me. I may be brave and have strength I never knew existed, but that doesn’t make me anyone’s hero.
On a separate note, Pink Ribbons, Inc. opened this weekend in NYC. I plan to see it in the next week or so and if anyone is local and has an interest, it would be fun to meet face to face.
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You are so welcome to the discussion. I think this is your first time to comment? And what a wonderful comment. You pretty much nail where I am at with this whole discussion – conflicted, uncomfortable, etc. Re Pink Ribbons Inc – I am hearing so much about it and I think it is a wonderful idea to meet face to face to view it – (unfortunately not in my neighborhood!) but please, if anyone else would like to take this reader up on her suggestion, do get in touch.
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Thanks, Marie! I’ve been following you, other bloggerss, and #BCSM for a while but haven’t posted until recently. I’ve adopted a pseudonym because I’m once again in a job search and don’t want to be outed by Google. I learned the hard way that acknowledging you’ve had BC can cost you a job (or potential interview). Your blog and others are incredibly validating and ask the tough questions and challenge the status quo. Would love for some of these BC orgs to include us in their focus groups and programming. Too many are comprised of well-meaning ‘do-gooders’ who don’t understand the complex relationship so many cancer patients have with their diagnosis and mortality
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Hello Lovely – Thank you for starting such a wonderful dialogue! I’ve enjoyed catching up on the responses and hearing everyone’s point of view. I think it’s perfectly ok that the term survivor might mean something different to each of us. For me, I don’t identify myself as a cancer survivor anymore than I identify myself as sister, daughter, friend, writer, or international volunteer. It’s part of who I am, but it’s not all of who I am.
I also don’t think of myself as a victorious survivor. I don’t think using this word means that I will never face cancer again or that I’m braver or more a fighter than anyone who didn’t survive cancer.
Instead I think the word survivorship symbolizes a rite of passage. Each of us are survivors of something – whether it’s poverty, war, genocide, heartbreak, death of a loved one, infertility, or cancer. Any difficult situation in life calls on us to question our values and re-evalute who we want to be in the world and what is most important to us.
I don’t think we need a National Cancer Survivors Day, but I have appreciated the chance to acknowledge all of the wonderful people (you included) who I have met because of the cancer experience as well as all of the people who propped me up and supported me while I was going through treatment.
Again – Thank you for starting a valuable discussion. Big hugs from Costa Rica!
Terri
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My view is summed by that old song, “It’s My Party, and i’ll Cry If I Want To.” What works for some is uncomfortable for others. Some people enjoy a community of fellow sufferers, like to march in ani-cancer walks, benefit from suport groups, wear pink ribbons, and write blogs. Others prefer individual counseling, don’t want phone calls even from close friends, may feel superstitious about the survivor label.
Some have rituals around their treatment, with friends taking turns making an event. Others go alone and keep to themselves. Some prepare for the eventuality of their deaths with scrapbooks or videos for survivors, perhaps chosing their own burial clothes and music. Others don’t even acknowledge the words for hospice or death, keeping a hopeful view of the future til the very end.
If some cancer patients want a survivors day, I’m delighted if they achieve it. For those who wish to ignore that day, go to the movies, walk on the lake, take a nap, or have yourself a cry at your private party.
The best way to feel in control when a diesease and its treatment makes you feel out of control is to do it your way when you have a choice.
Candida Abrahamons, PhD
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“The best way to feel in control when a disease makes you feel out of control is to do it your way when you have a choice” Absolutely! Thank you so much for sharing your perspective Candida – I appreciate your input very much.
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Wow, Marie – you really started something with this post! It is wonderful how so many women have very eloquently expressed their views and even more wonderful how all views are welcome. I say “to each her own”. What you “call yourself” – if anything – is so personal that one size will never fit all. How each woman feels about her diagnosis and treatment as well as how she perceives herself during and after treatment is not only individual, but often changes over time.
The important thing is that we all realize that words do matter, and that we do our best to continue this open discussion – no generalizations, no right-or-wrong, just lots of loving support for each other.
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Dr Attai – your words perfectly sum up how I feel about our individual experiences of cancer and I hope it carries through to the spirit of this blog – a place to share our experiences whatever they may be for we are all unique. Thank you for sharing your thoughts.
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Hello everyone,
A very interesting debate (and wonderful blog 🙂 There is an article from the Journal of the National Cancer Institute on this topic. You might find it interesting: http://jnci.oxfordjournals.org/content/96/19/1414.1.full
Best,
Elisabeth
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Hi Elizabeth, thank you so much for this link – I look forward to reading the article. I appreciate you sharing this with us
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What an incredible discussion here. You all have really opened my eyes to the complexities of this disease. I haven’t had a cancer diagnosis personally, but I have had friends and family who have had and if I had read this first, I would have chosen my words more carefully. Thanks for educating us all with your wonderful blog and community
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Thanks for your comment Susan – it is very heartening to hear what you had to say on this important topic
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Like most of the commenters here, I have always been conflicted about the word ‘survivor.’ I am curious about where and how it started now. I use it myself sometimes, for lack of a better word, but I find it inaccurate. Survival implies that you’ve managed to live through some concrete, one-time event — like a car crash — and once the crash is over and you’ve recovered from whiplash, bruised ribs, etc., you’re done with it. The problem is, we’re never ‘done’ with cancer. Nor can we ever say it’s done with us. NED is certainly more accurate, and I like AnneMarie’s NED-BAT, but NED doesn’t lend itself to various word extrapolations as easily. I do sometimes call myself a NED-ster, so maybe I could refer to my life so far as NED-stership!! [big shrug here]
The problem is that surviving cancer is never really over. And it’s not even just cancer we’re dealing with, but the long-term and late-term side effects of treatment, the financial wallop it can wreak on our lives, the possibility of recurrence and mets, the fear and anxiety hovering in the background, all of it. I’ve never felt ‘heroic.’ Like so many others have said here, I just put one foot in front of the other every day because I have no choice, really. I don’t live my life around cancer, but its presence is always there, sometimes quiet, sometimes loud.
As it happened, on National Cancer Survivors Day, I was working, seeing patients as I usually do on Sundays. In the background, I was aware that I have an appointment in a week with a plastic surgeon I’ve never met to talk about some options for addressing the mutilation of my right breast. The week after, I have an appointment with a new breast surgeon, because my old breast surgeon has made me steadily more unhappy as time has gone by, because she’s never been very helpful with my NED-stership issues. And even though I was not conscious of the anxiety I was feeling about having to meet two new cancer-related docs, I found myself having a mini-meltdown on National Cancer Survivors Day. That Pavlovian reflex, that started the moment I heard that my biopsy was positive, had me in its grip as I set off for my first patient. I was so unconsiously distracted, I drove an hour out of my way, only to arrive at the wrong first patient of the day. I realized then what was happening, but it was all I could do to function. I had to turn around, start from scratch, and force myself to stay focussed on my driving all day. It was hell. And I’m almost four years out from diagnosis. If that’s what it means to ‘survive,’ it’s hardly a triumphant state of being.
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Kathi, I appreciate you sharing your thoughts and it is so interesting to see the same themes echoed throughout the comments particularly the notion that cancer is not something you survive and are done with, but that it is something always with you.
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Hi Marie,
AnneMarie suggested I post my blog post from last year here, as it is about this very subject. Though I am yet to enter the world of surviving cancer (I’m enduring it), last year when I wrote this, I thought I had “survived” cancer….just goes to show us the irony of that word. I really struggle with that term, here is why: http://keepthecalm.wordpress.com/2011/04/10/enduring-wearing-the-belt-of-survivor/
Thanks for yet another thoughtful post! Can’t wait to read everyones thoughts on the subject.
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Hi Jen, thanks so much for sharing the link to your post on the topic – i am looking forward to reading it,.
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Just read your post Jen and left you a comment – very interesting perspective on the term indeed!
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I do not use the label “survivor” and I am a year out post-chemo, I am a bit superstitious about it and I don’t feel all that triumphant. I too just use the label NED and call it good.
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I too am a little sensitive about the label “survivor” as just four months after treatment I am still worried about every twinge, every bit of lack of energy,staying too long in the sun – I am asked whether I am cured now and I reply that I am in recovery. I feel I won’t be a survivor until I am clear of cancer and no longer taking the drugs to prevent it – 4 years and six months to go! As many here, I also question those who say to be you are brave I could never have coped as you have – but no-one knows how you really feel and for me it was just getting on with it with a positive attitude as possible. In some ways I feel that I have survived the treatment and may have won the first battle, but it is a ongoing battle and I haven’t won the war yet. Perhaps cancer “Warrior” is a better word as we all fight for a lives in one way or another – although even this is a label that implies being heroic and I am uncomfortable with that. Then there are those that don’t survive. My mother died of ovarian cancer after a two year battle – she was a fighter, a lover of life and I admire her very much on how she handled having her cancer and influenced me in the way I approached mine. Do we need a National Survivor Day – I don’t really think so – can’t we just one that celebrates life and the loves of those who have passed away and the ongoing research into all kinds of cancer? A friend of my is running the race for life next month with my name on her tea-shirt – I am honored that she is doing this for me and raising money in my name. Next year I hope to do the Moonwalk – its these sort of things done in the name of cancer that brings to mind all those who are suffering, have “survived” or passed away and could also be encompassed in one day. Please do read my blog on meandboblivingwithcancer.blogspot.co.uk.
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Such a fantastic discussion. Sorry to be so late, house full of sick kids. Anyway, words are indeed tricky. War, battle, survivor; I remember how much my mother hated it when people said she was so brave (she was on chemo on and off for 5 years, then seven years straight until she died). She would tell them, she was not brave, she just wanted to see her grandkids grow up. Survivors, are we survivors? I guess we are, until we die of our cancer or somthing else. Is it a war or battle? I guess, but as much as I hate words, I use them for lack of other, more usefull words. Was my mother a survivor? I don’t know. She was a “liver”, meaning she lived longer than she expected (i have a problem with that too…how does any doctor really know how long you have). But was she really “living?”. In the physical sense, yes, she was a liver and survivor. But she did not live well, and the cancer and the treatments got the better of her. She told me that if things didn’t get better soon, she was going to drown herself. More than anyone needs to know, but her point was that she was not “living”, she was “surviving”. so you see, now I have turned this around, back to survivor. Sure, she was surviving, but not living. One big circle. So, what we need is not fan fare, fancy titled days or anything else. Treatments are harsh, and people are still dying….of their cancer or the effects of the treatment. Treatments work for some, and they never revisit cancer. For others, never ending cycles of treatments becomes their norm. Sure, they are survivors, livers, or whatever we want to call it. They are living with their cancer, but would certainly prefer to live without it. thankfully I am NED, but the fear hangs over my head. While we all want time, what we really need is be rid of our cancer so that we can live well. thank you for such a great discussion….so many incredible responses. You have all certainly made me more aware of my choice of words…although I know I will find this hard as there are no good ones, not even hope; as while that is a great word, it too leaves me with mixed feelings. My mother hoped to live longer, but never could she embrace the word as an end to her cancer.
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I appreciate that everyone has a different feeling, however this post, National Survivor’s Day, and my experience in the Relay for Life had left me feeling uncomfortable toward the term. It’s the idea that to survive we must fight, when I’m honestly tired of focusing on cancer and would prefer to move forward.
I’ve written a post should anyone like to read. Here is the link: http://sisterleadership.wordpress.com/2012/06/05/culture-of-cancer-survivor/
Thanks for bringing up this subject! It’s so timely.
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The word survivor doesn’t spook me. In fact, I started calling myself a survivor from day one post-diagnosis. (It gave me courage and still can when I feel nervous.) But Terri basically said it perfectly, I am a survivor, but not only a survivor – I’m doing way more than surviving! My story involves many chapters, and I haven’t finished writing this book.
That being said, these two years later I much prefer the language of ‘thriver’ despite spell check insisting it’s not really a word. I am doing my best to thrive. From watering the garden, kissing my husband, and plotting my future . . . none of it hinges exclusively on cancer, but all of it makes me a better person.
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Coming late to this fantastic discussion, as I’m not having much time to visit the blogosphere at the moment – a combination of work, choir rehearsals and girlfriends who’ve come from ‘Down South’ to enjoy our tropical dry season! Such is the hectic nature of (ahem) ‘survivorship’ nearly 6 months post-surgery/chemo/radiation!
We don’t have National Survivors Day in Australia, but one of the biggest national annual cancer fundraisers is the ‘Relay for Life’ – an event at which people form relay teams to run/walk throughout the night, getting sponsorship and donating their earnings to the Australian Cancer Council. I’ve never been involved before, but have met some lovely women in Darwin who are in the midst of their BC treatment right now and we’ve decided to put together a team. Apparently the event features a ‘survivors’ lap’ at which cancer ‘survivors’ are given a sash labelling them as such and are cheered on by the assembled crowd. I’ve been told by others who’ve been involved in the past that it’s very moving and many tears are usually shed. When we were filling in our entry form, there was a question asking if we were cancer ‘survivors’. My friends and I couldn’t help laughing as (ignoring the request for a simple Yes/No) we wrote comments like: “Working on it!”, and “To soon to tell – but here’s hoping!”. All of us felt weird about claiming to be ‘survivors’, certainly at this point. With my six-month post treatment checkup around the corner (and with 4.5 years of Tamoxifen to go), I tell people that I’m “in remission” from cancer. This appeals to me as (a) accurate (at least, as far as I know at this stage) and (b) getting across the idea that I still live with a great deal of scary uncertainty.
But while my friends and I feel weird about the ‘S’ word, I know that we’ll all wear our sashes at Relay for Life and will probably bawl our eyes out (with arms around each others’ shoulders) during the Survivors’ Lap. It’s complicated! If the survivor label is being used in a way that somehow connects me to others who’ve shared this road, then that’s just fine with me.
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Marie, I’m catching up on my reading. This is such an important post! Thank you for including a quote from Calling the Shots. I now use “thriver,” but it’s still not adequate; I have no idea what words are sufficient to capture this whole cancer experience. In terms of having a survivor’s day, month, or whatever, I’m against it because it seems to compartmentalize the cancer experience into a nice, neat little package. I’d rather do away with all of these special days and such, and that includes non-cancer conditions, as well.
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Just catching up on my emails and somehow missed this post along the way. WOW! Lots to process here.
Well, here is my 2 cents worth: I don’t like the idea of the word survivor in the sense that one who SURVIVES (i.e out lives) cancer is somehow tougher or stronger than one who dies of cancer. In particular I think of two women I know, fellow educators, who were diagnosed around the same time as me and who did not live. When people say to me, “Oh, but you are a survivor”….it almost implies that I somehow fought a better fight than my two colleagues, which is utter B.S. In that sense, I do not like the term survivor .
On the other hand…….I think survivor is a great term for those of us who take on this ugly disease and refuse to let it define us. I feel that I am a survivor (and I proudly wear that label) because I did not allow cancer to take my spirit. It still may take my body, but as long as my spirit is strong I AM A SURVIVOR. And those women I referred to above, who died of breast cancer….I believe that they fought as survivors and they died as survivors. Surviving cancer is not about what it does to your body, but about what it does to your spirit.
http://www.perksofcancer.com
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Hi Marie – very interesting discussion on this topic. First off, I generally don’t question the labels that people prefer, just tell me what you want me to use and I’m good with it. Like many of the commenters, I don’t care for ‘survivor’ simply because of the finality it implies – it ignores the permanent physical and emotional scars from breast cancer as well as the persistent fear of recurrence.
My wife has endured breast cancer – you know her as the Pink Underbelly – so I have occasion to use such labels. I tend to just go with ‘victim’ in the absence of context that would lead me to say something different. Here’s the point of my comment, I noticed that several of your other commenters expressed even more negative emotions towards that term and I don’t understand why.
I think the term’s inherent passive voice conveys an important truth, that breast cancer is something that happens to you. All the lifestyle choices you can imagine at best barely nudge the statistical needle a few points, it’s just unlucky fate. Victim also means that something was taken from you unfairly – your life, your health, your body. The word just seems to fit the experience to me so I don’t understand the need to hunt around for a different one.
As I mentioned, I don’t want to call people something they don’t like. But I wonder why several of the commenters react so negatively towards the label victim.
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Hi Trevor, thank you so much for taking the time to share your perspective on this topic.. it is wonderful to hear from the male/spouse perspective. I really appreciate that you took the time to comment.
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Reblogged this on Journeying Beyond Breast Cancer and commented:
Today is Cancer Survivors Day, and I find myself revisiting this post from 2012 and feeling much the same way three years later. What are your thoughts on this day?
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As applied to a stage IV cancer patient, “survivorship” is an inappropriate word. I rather prefer the word “patient” because I will always be in active treatment until nothing more works or I decide enough is enough. Then I am a hospice patient.
I also prefer the term “metavivor” to “survivor” as it engages people, inviting discussions about the potentially destructive nature of breast cancer.
“Survivor” doesn’t seem like the best term for those in remission, either, but I can’t think of a better term. I’ve heard “veteran” used, but I feel that is not appropriate because we are not in the military and shouldn’t usurp their terminology.
Thanks for bringing up this important, but also controversial, subject. xx
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Yes thanks for bringing up this topic. Last February my mother died after living with metastatic cancer for 8 years. She never thought of herself in these terms either. If anyone is a survivor it’s me and all the bereaved family members of someone who have passed away from cancer.
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