I didn’t fight either

February 2011 – out walking in early spring

I keep thinking about that expression on Chemobabe’s recent blog post – ‎’I didn’t  actually fight cancer. The truth is, I got treated.’ And I keep coming back to wondering why we use the term ‘fight’ for cancer. Because I agree with Chemobabe, I didn’t fight either. I smiled at my surgeons, I tried not to be cranky with the nurses when I asked for pain relief,  I put my lippie on when I went to consultations, I tried to have a good attitude. But I know that none of that has any effect on the medical outcome.

In short, I just I did my best. I only ever felt that I was doing the best I could. Because why wouldn’t you just do that?

When someone else sees me undergoing breast cancer treatment, why do they call me brave? And why do some people want to label me as a fighter? I made my treatment decisions based on the evidence available to me – statistics and medical opinions. It wasn’t some kind of battle ground we were in, it was simply me and my doctors trying to give myself the best chance of staying alive. That’s not fighting, that’s just what we do everyday.

And after treatment ends, if you’re lucky enough to be one of the ones who get to that point, then what happens? I didn’t transcend and smile beatifically and present myself to the world as a survivor. I just picked up the shards of what was left of my life and tried to move on. I was lucky. Lucky that for now I am treated and there is no evidence of disease. For now. That could be how it stays, or it might not.

So, for now, this is what lucky looks like. I’m alive now, in a long present moment of watchful waiting. Yes, I experience whole sequences of days when I’m too down to do very much at all, but I’m neither ‘fighting’ nor ‘giving up the fight’, I’m simply living as best I can. And I still call that lucky.

Because for all the people who are ‘lucky’ like me, there are thousands of others who face all the myriad of crappy things that this disease  brings to our lives. So some women progress to Stage IV of this disease, currently un-curable; there are women whose relationships fail and they face this disease alone; there are women who struggle with fertility post treatment; women who lose the chance of being a mother; there are women who die, too early; and women who leave children behind….. and so it goes on. On and on with the ‘terrible stories’ as the poet Lucille Clifton called them. These are the stories of breast cancer that we should be hearing. Not the ‘brave’ valiant ‘warriors’….. that makes it look all OK.

And I find all of this so unacceptable.

Of course, like many other women who experience breast cancer, I try to treasure every precious day, every smile, every kiss. But that’s not fighting. That’s living. In the aftermath, whatever that looks like.

So when people talk about breast cancer patients fighting are they seeing us being brave warriors fighting the disease? But how can we fight a disease that we have no control over? A disease that we still really don’t know enough about and therefore don’t know how to ‘beat’ it.

Because if there’s any fighting to be done then that’s not what my ‘fight’ is about. I want to be heard. I want a voice that speaks above the notions of breast cancer being a simple fight by brave pink warriors. That’s too simple. We need more research, more urgency to find better treatments. More research about prevention. We need to be heard when we speak our pain and our truths. So we really change the dialogue on breast cancer, and actually reverse the statistics of this disease, not just sit back and watch the number of women who are diagnosed increase year after year.

These are the things I want to speak out about. And that is why I write.

Because is all this ‘fighting’ talk to make it easier for those who are frightened? Frightened of death, frightened of cancer, frightened of us? Maybe if they call us ‘fighters’, they can tell us we’re ‘brave’, and then bolt for the door before we get all real? Well, as I’ve said before, ‘Tell it like it is, but also laugh, be angry, and reflect and understand. Be emotional, true and honest. That’s my normal.’

Do I have to fight for that?

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28 thoughts on “I didn’t fight either

  1. Well said Sarah. I’m doing what I need to do to get through my treatments and trying to live each day to the fullest. I’m not being brave, I’m just doing I need to do to stay alive. I agree with you, that the fight isn’t about the disease itself, but the culture around the disease. Somewhere in all of that, we transformed into brave warrior fighters who should be celebrating hope every chance we get. That’s fine, but somehow amidst all the pink celebrations we seem to have forgotten the realities of what it means to live and die with this disease. That’s what I’m fighting. The rising tide of pink unreality.

  2. Thank-you for this. I am a 48 year old white woman, freshly diagnosed with triple negative breast cancer. Had a mastectomy within a week of diagnosis, started chemo two weeks later for the next six months, and am wondering just why it is that my friends and co-workers think I am brave, and a fighter?

    What else was I going to do? I am a survivor, not a fighter, and not survivor in the pink sense of the word. a survivor, in the crash your airplane in the middle of nowhere and manage to survive sense of the word. I’m not going to give up. I’m going to go after the best, fastest, and most comprehensive treatment available, and am finding that there are not a lot of choices out there, and that makes me mad. Fighting mad, I suppose.

    Before I “had breast cancer” I was suckered in by the pink soup can labels and believed that every one of those I bought was actually helping find a cure. HA! That by funding mammograms for people who couldn’t afford them was helpful. HA!

    Now that I’m one of the club, I find that too little is being spent on real research, that education is NOT the answer, that getting annual mammograms, or doing self exams is NOT going to cure my cancer. The poison I am subjecting my poor self to may or may not, and I won’t know until I either die from breast cancer or the proverbial bus hits me.

    So, thank-you for following up on ChemoBabe’s thread about not fighting this effing disease. I appreciate knowing that my perspective is not as off as my friends keep telling me it is (they all have two boobs, and no hose hanging out of their chests).

    I am being treated and although that’s a pretty passive word, it’s exactly what’s going on. I’d rather be fighting but how do you do that? I have no weapons, no special skills, no super-hero status that gives me an edge against something that not only can I not see but that might not even be there.

    I hate this.
    I suppose I probably did more than “comment” here, and may end up starting up a blog of my own to vent my frustration with not only the whole cancer thing, but the belief by the millions that something pink is really going on. When, from my puking perspective, it is not.

    I’m glad you are “free of the beast” and I sincerely hope that you remain so. Thank-you for sharing your space with me.
    shaune

    • Shaune – thank you for your comment…. it means a lot to me that my words resonate with others in this way. Yes, I too remember feeling like you when I found there weren’t a lot of choices out there. *sigh* I wish you well with your treatment. Best, Sarah

  3. Hi!
    I am actually going to send this to my husband and hope he reads it… he keeps yelling at me to fight…. and I keep looking at him like he’s crazy, I am doing what I can… just like you said I am making the best of it! Thank you for putting my thoughts into such eloquent words. Many happy and healthy thoughts and prayers

  4. i think your insights about fear of death are spot on. if what it takes is courage and fight, then we are in control.

    the most frightening thing about cancer is how helpless and vulnerable we are in the face of it. there is no good rallying language for that. thank you.

  5. I’m Sarah’s husband, and I was particularly struck by Christy’s post about her husband yelling at her to ‘fight’. I suppose it comes from our frustration as men when we arrive at the point where we suddenly realise that cancer is not a brief interruption that can be surgically removed, it’s a permanent threat. And I remember how that felt for me, how ignorant I was, and how quickly I had to learn, for Sarah’s sake as well as my own.
    Now I realise that if there’s a ‘fight’ here, it’s political. And if there’s ‘bravery’ going on, it’s coming from women who are refusing to accept the pink status quo, even when, like Shaune, their friends tell them their perspective is ‘off’. Early on, one of Sarah’s friends told her, ‘You think too much’. Painful at the time but we laugh about it now. When cancer is diagnosed you can’t think too much. You’re thinking for your life.

    • The pain and reality of it all certainly does make me cry. And it’s what drives me to want to change things, to research and prevent this cancer – with science, reason, advocacy and political action.

  6. Sarah, I couldn’t agree with you more. I never liked the word “survivor” and I don’t believe I’m brave or a fighter. I am, like every other cancer patient, just doing what needs to be done. There’s really no choice here, other than lumpectomy or mastectomy and really, you don’t need to be brave to make that decision. Some women don’t even get that choice. It’s all about the facts. Maybe it helps the non-cancer people deal with us on some level. If they see us as brave, maybe we’re not as scary to them. Maybe they can’t accept that cancer can be a part of a life. That we are just living as best we can with what we’re given. People just don’t want to see the ugly side of cancer and for us, that’s all we ever see. Anyway, I think you wrote about it just beautifully. Exactly right.

    • Thank you Stacey. That’s exactly how I felt – there’s no choice, I just have to do this if I want to try and stay alive. I remember feeling very pragmatic about it. Glad it resonated with you.

  7. I’m so glad I found your blog. Such a wonderful posting about such an important topic.

    People keep telling me how brave I am and they don’t think they would have the courage to have faced cancer like I’ve done. To that I say “baloney”! Like you, I did my best to survive, based on information from my doctor. Life’s a crap shoot, and I can’t even be sure that chemo and the treatments saved me. It’s all so random, isn’t it.

    I’m one of the “lucky ones,” but who knows for how long? I am one of the ones you speak of who had lost her fertility as a result of treatment. Luckily, I adopted a little girl.

    Your post is simply inspiring, and I’m going to list it on my blogroll.

    • Thank you so much Beth for your comment. Yes, who knows how long we’ll be ‘lucky’ for… so let’s advocate for a new conversation, really for a cure and really for prevention, so that this disease doesn’t happen to so many women. Thanks for the listing… and I’ll catch up with you on your blog soon. Best, Sarah.

  8. When I was doing interviews for my research, I did one with a woman and her husband together. As she told me her story, he interjected several times. He said she was strong, never questioned ‘why me.’ She said, “But I wasn’t. I didn’t ask for this. I’m just doing what I need to do to get through the day.” He didn’t get it. He continued to try to tell her it was different. He wasn’t being controlling or trying to change things, but his lens just didn’t match hers. The ‘fight’ seems to be to speak your own truth with your own words.

    • Interesting Gayle. There is so much ‘standard’ language and basic scripts that we have for talking about cancer, and it seems that often people seem to use them as a default setting! I think those of us who talk and write about the realities of cancer in different words – words that are not triumphal – are indeed speaking our own truths. So perhaps I am in the ‘fight’ to get these true stories heard? Thank you for your insight.

  9. Sarah, Terrific post here! I so hate all the labels, even though I, too, use them sometimes. There seems to be a lack of words that really do “fit” cancer. I never feel like a fighter either. Getting the treatment we need is just doing what we must. I am trying to be part of the “fight” for more research like you and others. Thanks for the great post!

    • Thanks Nancy – absolutely agree about the lack of words for cancer. And I am so pleased to have found you and others who want to take on a different ‘fight’.

  10. You have put into words so beautifully my own feelings. I am not fighting. I am living. This is (unfortunately) my normality. I too hate the language used by too many who understand little of this disease. I recently did a magazine interview and whilst I had approved the wording they didn’t tell me the headline. When I read the article I was shocked to see that they had described me as having ‘beaten’ cancer. I didn’t beat it. It wasn’t a war… and I didn’t win. In fact only a matter of weeks later I was diagnosed with a recurrance. I would never have described myself as having beaten cancer. I suffered, endured, and got on with it. Luckily… I live to tell the tale… for now at least.

    • Thank you Kelly for your comment. I am finding it interesting how often this discussion around language comes up. Because the words that are used, the war metaphors, like ‘beaten’ and ‘fight’, for me they don’t accurately express living life post-diagnosis. I wonder if these words are for others – for people who have not experienced cancer, who do not understand the reality, they want to believe that it is ‘beatable’, it can be ‘won’…. if that’s the case then we are hiding from the truth I feel. I wish you well with your treatment.

    • Thank you Kelly for your comment. I am finding it interesting how often this discussion around language comes up. Because the words that are used, the war metaphors, like ‘beaten’ and ‘fight’, for me they don’t accurately express living life post-diagnosis. I wonder if these words are for others – for people who have not experienced cancer, who do not understand the reality, they want to believe that it is ‘beatable’, it can be ‘won’…. if that’s the case then we are hiding from the truth I feel. I wish you well with your treatment.

  11. Sarah and all contributors.
    Thank you for expressing your views on the use of this dare I say it male ‘violent’ language. I am not anti men just in case you think this influences my post. My gut instinct told me on day one that I could not fight this disease I would do whatever it took to up my chances. How could I fight with me? My own body needs me to love it back more than ever and words like war, battle, victim don’t sit well with me.
    any control over what I can do

  12. Last post didn’t get finished it’s called fat finger syndrome :)
    My journey into this realm has only just begun and I’m clambering from one appointment to the next and i feel like im losing my footing at times and I don’t even know where I’m going or will it be worth it.

    As well as this it seems I am responsible for how others deal with my cancer. I
    must be positive at all times even when I feel vulnerable and frightened.
    Now don’t get me wrong most of my friends and family would describe me as a positive upbeat kinda person but if I hear ‘ well if anyone can beat this it’s you, you’re such a strong positive person’ hey does this mean that if I crack and it gets me I’m to blame? I feel that they are telling me not to complain ,keep smiling and everything will be fine. Oh rant over for today then.

    • Minty – thanks for reading and commenting. The fact that you feel you have to ‘keep smiling’ is why me and other bloggers are writing the truth about breast cancer so that you don’t have to feel expectations to behave like that. It’s OK to feel vulnerable and frightened, we all do at times. And it’s also OK to express it. It’s just the positive culture of breast cancer that expects you to portray this experience as not really all that bad.

  13. When I was first diagnosed- lo, these 21 days ago – I told everyone that should I happen to kick it from this, they were NOT permitted to use ‘brave’ or ‘courageous’ or anything of that ilk in my obit.

    ‘Bitter’ could be substituted, if they felt it absolutely necessary.

    I’m not ‘fighting’ breast cancer; I can’t ‘fight’ breast cancer. I’m doing my best to get appropriate treatment, to do what research I can to figure out my best options and chances, to maximize my chances of survival and reduce my risks of recurrence. I’m researching the road ahead. I’m working out what trade-offs and compromises I’m willing to make. I’m missing out on using my pre paid tickets to Scotland and seeing the man I love, because I’ll be either in chemotherapy or radiation treatment instead.

    And today, a week after surgery, the second day after the bandage over my scar came off, I’m feeling rather whingy about it all.

    • Hi dropjohn – and welcome here. I’ve also written about the ‘fighting‘ terminology that many of us dislike. Link here.
      Yes, you are missing out, we all are, because breast cancer steals so much from us. That’s why we need things to change.
      I wish you well with your choices and options. And thanks for the listing on your blogroll. Best, Sarah

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