Real?

Summer camping at Hill Holt Wood with Ronnie.

I’ve just been away on a short camping trip with Ronnie in a beautiful wood in Lincolnshire. We had one night alone and then spent the next two days with a group of people from Hackney Community Transport who we’ve been working with over the last seven months on their ‘social enterprise champions’ project. A fabulous experience. And it didn’t rain!

Back at home, and I’m going through my emails and there is one titled ‘Sad news about Jane Smith’. No, Jane Smith is not her real name, but she could be one of thousands of women like me, who’s being diagnosed with breast cancer in their early 40s.

I know immediately that she has died. Of secondary breast cancer. Of course, the email does not mention that, it says she had ‘a long illness’. We are spared the details. I feel so many mixed emotions. Including anger.

Jane Smith was one of the women who welcomed me to the dragon boating club back in summer 2008. Their club of ‘survivors’, all friendly pink wearing women. At the time I was coming up to 18 months from diagnosis and I was grateful to get ouf the house for something, anything, that wasn’t a hospital appointment. And, I was with other women, who understood. They were friendly, we were having fun. I enjoyed it.

I go a few more times, and then they gave me a pink t-shirt to wear.

Extract from Being Sarah:

I feel so uncomfortable about it. It’s not that I don’t support them, or that I don’t understand that there are women there who enjoy being in the exclusive club. But it’s not for me. So I give the pink t-shirt back, and leave the breast cancer ‘survivors’ club. I then join the ‘ordinary’ club where I’m not expected to wear pink, where the fact that I have had breast cancer is not why I am there. I buy a club cagoule, black with a yellow ribbon sewn down the length of the arms, and a yellow dragon emblazoned on the left chest. I wear it proudly, proud to have achieved some normality for myself, to have stepped away from breast cancer.

In the changing room I get in the shower with my one breast. I cannot hide the fact that I have had breast cancer, it is too obvious. I am glad I found this club, it is an activity I enjoy, and it challenges me, but I do not want to join in, not in that way.

I so do not want to be branded by breast cancer and wear pink t-shirts.

At the time this happens I email the club’s organisers, which includes Jane Smith, and I explain why I am leaving. One of them says she is sorry that I don’t like pink, that to them it symbolises hope. Jane Smith says something like she’s always felt ‘pink and fluffly’ and sees her role as being cheerful and positive, especially as she works in a doctors surgery. Oh, and could I remove her from my mailing list. At the time I am regularly updating an honest, opinionated diary on my website – not a blog at that time – and I’d added her to my mailing list, she’s my sister, right?

And then what happens is that some of the women in the pink club don’t talk to me anymore. In fact some of them positively ignore me, they look away when I walk in. Some, not all. Including Jane Smith. It was childish I felt, playground behaviour, so I just got on with the sport and engaged with the women who did talk to me.

I always wondered about the pink wearing, about why they chose to so openly to show that they were breast cancer ‘survivors’; many of them had reconstruction, others wore prosthetics, so they all looked two-breasted, but they still wanted people to know they’d had treatment for breast cancer. It felt like a contradiction to me, as I struggled with my decision to have reconstructive surgery, unable to wear a false breast, hating the ‘false-ness’ of it, the pretence that I looked ‘normal’. That no-one could tell.

May 2009. That's me second from the back in the black team.

The following spring, after training all autumn and winter in rain and all weathers, I am selected to race with the ‘Bees’ (yellow and black, get it?) team at Liverpool in the first race event of the season. At the same time one of the women tells me that Jane Smith has recently been diagnosed with secondary breast cancer, liver mets. I felt for her. Really I did. And when I saw her at the event, in her pink head scarf, and pink and black cagoule, I did what any sister would do. I hugged her and said I was sorry and wished her all the best for her treatment. She was gracious and asked me how I was. I told her I was about to have my first breast reconstruction operation in two weeks. She said she was still hoping to sort her reconstruction out. (She’d had a bilateral mastectomy.) I don’t think I ever saw her again.

By the way, the Bees won that day, and I was in the winning boat, it felt great. Two weeks later I had successful DIEP surgery, a summer of complications, more surgery in the autumn and once that was done I had a sense of ‘regaining’ my life. There’s a short film here about the race day and my thoughts about breast reconstruction.

I went back to the club the following spring in 2010. The atmosphere had not changed. My tolerance levels now are almost nil. I have no time for that sort of behaviour. So I stopped going and joined a squash club. I stayed on their mailing list, half hoping I might go back. And that’s how I got the latest email.

So now, two years later, Jane Smith is dead.

There is so much in the story that I feel crystalises what’s wrong with the current breast cancer culture. The exclusion of women who question it. The taboo of mentioning that secondary breast cancer is currently incurable. The almost desperate desire and hope for reconstruction, that it will ‘sort it out’. The triumphal behaviour of being a positive survivor to show other women they can ‘beat’ breast cancer. Our inability to put the word ‘death’ in the same sentence as ‘breast cancer’.

Gayle Sulik in her book Pink Ribbon Blues has brilliantly examined the current breast cancer culture and exposes some shocking facts; facts that this culture is not shouting about.

“The absolute risk of dying from breast cancer has decreased about 0.05 percent from 1990 to 2005. Yet a woman diagnosed with invasive breast cancer gets more treatment now, spends more money, and has about the same chances of dying from the disease as she did 50 years ago.” (p159)

As I write this, people will be gathering for Jane Smith’s funeral. No doubt including her pink wearing friends from the club. Will they finally get it? I mean really get it? That all the hope, the pink, the optimism, the talk of survivors, isn’t changing anything in terms of my survival or their survival. That this cheerful culture is failing women, women like Jane Smith.

Is that real enough?

Advertisements

21 thoughts on “Real?

  1. Sarah,
    You’ve summed it up so well. Like you, I think we are too eager to sidestep the statistics about death from recurrence. We can put on the “I’ll beat this” face all we want, but we need more than fluffy pink feel goods.

    I’m glad the breast cancer blogging community is raising their voices against Komen. We’re taking control of our health with our collective voices, and are fighting for real action, not just pink products, walks and runs. Where are the Komen updates about hard science, where research groups in their efforts to find a cure? I’m wondering if there’s a central organization where scientists and researchers register their findings so they can team up with others working on the same thing. StandUp2Cancer has something like that. Think I will look into this further.

    Thanks for your thoughtful post. I feel the same way.

    Brenda

    • Yes Brenda, we need more than the pink ‘feel good’ as you describe it – breast cancer is not something to feel good about. Only by raising our voices will the status quo change – thank you for bringing yours to the conversation.

  2. Thank you, Sarah.

    Your post is moving and unsettling as it captures the betwixt and between of pink culture: “All the hope, the pink, the optimism, the talk of survivors, isn’t changing anything in terms of my survival or their survival.”

    Of course, the ‘absolute’ statistics say nothing of individual outcomes, which fall above and below them, and this particular statistic refers to the absolute reduction in mortality due to screening mammography across clinical trials. As you point out, such analyses are useful when thinking about whether the current strategies are working as desired. For all the effort given to ‘awareness,’ fundraising, and fun activities (fun for some people anyway…), they didn’t change Jane’s outcome. They won’t change the outcomes for the 41,000 women and men in the US, or the more than 12,000 women and men in the UK who will die this year. While people are living longer with breast cancer on average, they haven’t cracked the recurrence/metastasis problem. That’s a sad reality.

    • Thank you for clarifying the statistic… I think the point is I could have picked any number of statistics because they all say the same thing. Too many women die. Of breast cancer. Very sad reality indeed.

  3. Hi Sarah, I feel totally “un-equipped” to reply but I just wanted so say “keep on keeping-on”! Annette x

  4. So sorry to hear about Jane Doe. Another life stolen. I think you did the right thing by embracing her. We have to remember that whether we agree with someone or not, we can still find a love for each other. In the end all we have is love, no matter how we die.

    Change can start with one person, though. By writing your book and blog, you are making people aware of real issues. Kudos to all the ladies who are doing their part in bringing up relevent points in the research of breast cancer. I would love to see a highly public figure choose this as one of their main goals. Media could make the revealing of true research findings available to so many people.

  5. Also having been diagnosed in my early forties, I can really identify with what you are saying. Two women in my young women breast cancer support group died, making me feel so helpless, anxious and afraid.

    Jane sounds like a special lady and I’m so sorry for her loss. The pink culture just doesn’t “get it” and I’m not sure why. Even many well-meaning people with breast cancer embrace it. Let’s not have Jane die in vain. Let’s support research and not currently hot pink.

    Jan

  6. I have always thought the pink thing was kind of weird…like when you dress a baby girl in pick so people will know its a girl (which I did not do to my daughter). Is there some question about whether we are women – or feminine – and that is what is with all the pink crap??? Are we trying to burn it into our psyche that we are still girly when we are lacking breasts? I guess that is why I identify with the Amazon image so well…unquestionably woman, willing to make sacrifices to get the job done and warrior through and through.

    • Robyn you have touched on a whole big area of breast cancer culture here – the one which forces us to look ‘beautiful’ and feminine despite missing body parts and horrendous side effects…. why?

  7. Sarah once again you bring to light the truth and harsh realities of this disease in a way that is confronting, yet poignant, personal and respectful. I understand the need to connect with a shared experience, but at what cost does all of this pinkness come with? I think you have illustrated it here perfectly.

    • Anna – I totally understand the need for shared experience too – but it feels to me that some ways of doing this denies my experience, or how I want and need to express my experience.
      Some of my closest friends now are those I have ‘found’ through breast cancer, but ones who are not prepared to hide from the reality beneath the pink.

  8. Sarah,
    Thanks for this wonderful post that touches on so many things. Sometimes it feels like women with breast cancer are drowning in this sea of pink. I understand the part about pink representing hope, but hope just isn’t enough is it? Despite all the pink hope Jane Smith had, it wasn’t enough. It never is. We need more.

    Like you said, the “cheerful culture” is failing women. Too many women. I’m sorry you felt like you didn’t fit in properly with the “pink group,” but sometimes it’s better to not fit in.

  9. You are so right, Sarah. I think in some instances, having metastatic breast cancer is viewed as a personal failure–the rationale seems to be that if you tried hard, had a positive attitude, exercised and at healthily, you would be done with breast cancer. Unfortunately, breast cancer is not like a beauty pagent–you don’t get a prize for Miss Congeniality.

    I presented with mets. I don’t own any cancerware except a couple of pink ribbon lapel pins. I confess I have tried wearing these on transatlantic airplane flights to see if I would get any special consideration. (Not that I need any, I am in excellent shape!) So far it has done absolutely no good!

    I see a lot of pink tshirts, feather boas and tiaras in coverage of breast cancer fundraisers. I always wonder about that–why is breast cancer an excuse for grown people to revert to playing “Let’s Dress Up”?

    I attended an advocacy training meeting–in the group of 85, there were probably three of us with mets. The fella next to me was part of a Men Against Breast Cancer type group. As part of his efforts he wears a huge padded and decorated bra while walking and running against breast cancer. I knew that by the time the meeting ended he would be modeling his costume and sure enough, he was.

    What would you think if I became a cystic fibrosis advocate and wore a pair of huge inflatable lungs to an advocates meeting? I just don’t get it.

  10. Hi Sarah, as I read your line about receiving an email telling of someone’s death, I was immediately saddened. Thinking you had lost a friend, but then your story took a different turn. Yes, it’s sad that yet one more woman was lost to this disease, but it’s also scary and infuriating that so many are falling under the spell of pink. It can’t save us, at least it hasn’t so far. We need more voices like yours to point out the obvious, the facts, without being ostracized. Carrying the burden of the disease is bad enough. Hopefully, things will begin to change.

  11. Sarah,

    This is a poignant, brilliant posting. I could so relate. While I joined a support group that wasn’t pink-focused, they were still pretty rough on me. I joined when I was just finishing chemo, and they used my vulnerability to try to control my life with groupthink. They questioned my doctors, my life choices, and everything.

    Interestingly, they were mostly all older than me. They probably thought since I was the young one, that it was OK to just trash me. So I did the only thing I could: I dumped them, and my life is the richer for it.

  12. Thanks for capturing the complexity and contradictions in this whole pink or otherwise post diagnosis emotional minefield. I particularly valued the honest and non-judgmental take you had, which made sure that the parts of this that are not easy to hear, were not too tough either. Very very thought provoking, thank you.

  13. Thank you for these latest comments which I’ve just picked up… have had a break away from home and away from my blog and cyperspace so will be catching up with you all soon.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s