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.
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?