What comes next?

Last night we celebrated Samhain on Plot 44. A place where I garden, and where I share the cycles of nature that I find so calming and necessary to have in my life. And no, it has nothing to do with breast cancer, well other than being a place of solace for me.

30 October 2012, candles in the dark at Plot 44. Samhain.

And I need a place of solace, I mean I think we all do, I need somewhere to go to find peace, to turn off the outside noise and distractions. Even though I do have a two excellent tools – a very finely tuned shit filter (yes, you read that right, everyone should invest in one, and they’re free); I also have a well-oiled quack-o-meter (yes, I prefer informed discussion) – despite both of these essential tools, I still find there’s too much noise in my life at times.

Nearly six years now since I was diagnosed with breast cancer. But despite the circumstances that propelled me into the breast cancer community, I’ve found some extremely supportive and valued breast cancer friends:

“But I am not turning away from that community, no. I’m still here, but just so tired, so worn out – by the years of being a breast cancer patient, and now after months of working on Rachel’s book reminding me sharply and keenly, and reminding all of us too, that we simply haven’t got the right tools at our disposal to stop women from dying of breast cancer.”

And this year has been a very difficult year for me. To lose Rachel so suddenly, my dear friend. The grief has been enormous.To be immersed in her words and work on her book has meant I’ve had little time for much blogging of my own, or reading other people’s blogs.  And over and over I hear the same arguments and questions about the mainstream breast cancer culture. The pink-washing, the lack of research, the lack of awareness of metastatic breast cancer. I don’t want to keep repeating myself.

On the bit of my blog that only I see, the dashboard, there are at least ten draft posts, half-written pieces on subjects which range from ‘the distress of mets’ to ‘no stage V’ to more quack-o-meter quackings, rantings on why I’m supposed to look ‘better than before’ after breast cancer treatment, the realisation that there are no miracle cures, musings on why we make cancer patients ‘brave’ and questions about why we continue to contaminate the earth, when we know there are environmental links to cancer. Sigh.

Katie at Uneasy Pink very pertinentely asked earlier this month:

‘What comes next?’

Yes? What does come next?

The magic of fire at our Samhain celebration. Photo: Matt Seamless

Well, for me, what comes next is a realisation, during my Samhain celebration of letting go, as I gaze into the fire, that I am tired of being ‘Being Sarah’ now. I have often reflected that I unzip the Being Sarah persona at times, hang it up, and become Sarah Horton. Who gardens. Who walks in nature with her partner Ronnie – every Friday. Who is an independent funeral celebrant. And continues to do some creative work with Ronnie as ‘a sense of place‘.

And I sometimes find myself thinking about why I blog, as bloggers do from time to time. Everything I think is not good enough about breast cancer culture is in my book Being Sarah, and here on this blog. Do I need to be repeating myself. Bringing the same issues up for discussion? There are 272 pages of my writing in that book and you can read them all. And I hope this doesn’t stop you reading the book, but the last lines are:

“I am not prepared to join in this collusion of silence, of covering up. I want my words to be heard. I am not ready to make nice.”

True. All true. I feel that as keenly as I did when I wrote those words, as my pen scorched the page with anger.

I will criticise. I will express anger. I am fed up with nice-y positive shit. I want change. I want real change, which means women don’t die from breast cancer. So how am I going to do that?

Well, step forward, my dear friend Gayle Sulik.

February 2012, Gayle Sulik on Monmouth Beach, NJ.

Gayle published her book, Pink Ribbon Blues, at the same time I published my book. She’s articulate, caring, intelligent, wise, and such a peace-maker. And I’m pleased to say she’s become one of my closest friends. Gayle hasn’t been treated for breast cancer, like most breast cancer bloggers, but she still wants change and she’s very much interested in the question of ‘What comes next?’.

Katie (quoted above from Uneasy Pink) describes Gayle as ‘a force of nature’, which she is, and goes on to say she ‘has assembled a diverse team to work on this very problem.’

It’s called ‘The Breast Cancer Consortium‘. The website’s now up, and more content is being added all the time. This is the mission:

The Breast Cancer Consortium is an international partnership committed to energizing the scientific and public discourse about breast cancer and to promoting collaborative initiatives among researchers, advocates, health professionals, educators, and others who focus on the system-wide factors that affect breast cancer as an individual experience, a social problem, and a health epidemic.

And I am honoured and delighted that Gayle asked me to be involved too. So I’m the co-editor of the newsletter, and also multimedia initiatives come under my name too (that means films which I’m really looking forward to working on with Gayle). We are planning for the first newsletter to be out in November, you can subscribe here.

So I’ll be taking a break from being ‘Being Sarah’ for the time being. All my posts will still be here, my anger is still here; you can read why ‘It’s all so shit’, why we need to be a unified outraged voice, some statistics and facts about breast cancer that will open your eyes, why hope is not enough, how cancer charities actually spend their money, and what it feels like to lose one of your closest friends.

And if all of that starts to get a bit heavy, then lighten up with one of my most popular posts which is about, wait for it, puffins. And despite all those angry words about breast cancer, puffin is still the most common search term that comes up on my site.

It’s the wrong time of year to find puffins in the UK right now, but the geese are arriving, and I’ll be watching out for them. (See them and hear them here on Ronnie’s blog.)

I have written often about a woman who inspires me, Audre Lorde. She died of breast cancer in 1992, her powerful words still ring with anger. After her initial diagnosis in 1979 she wrote very poignantly about using her time, about wanting what she did to matter.

‘It means for me, knowing that my work is part of a continuum of women’s work, of reclaiming this earth and our power, and knowing that this work did not begin with my birth nor will it end with my death. And it means that within this continuum, my life and my love and my work has particular power and meaning relative to others.

It means trout fishing on the Missisquoi River at dawn and tasting the green silence, and knowing that this beauty too is mine forever.’

And I am encouraged by this. To think that I can be part of a continuum of women’s work, and still be in nature. That there is time for me for both.

Finally, it wouldn’t be right to sign off without thanking my fearless friends.

Katie, we do need more crazy ones, and thank you for reminding me that poetry enriches our lives. Jody, whose Twitter skills I will never match, I’m grateful for the straight talking and your tireless advocacy. (Join Jody in conversation on #bcsm). Kathi, my kick-ass, smart, ace Photoshop user friend, your blog sparkles with wit and honesty, thank you. Lani, dear gentle Lani, who I admire for the amount of work you manage to pack into 24 hours as well as being a mother, thank you. Nancy, I have delighted in your common sense writing and continual questioning, and so glad you found your inner feminist. Thank you all. As I said before, I’m not turning away, but the focus of all my breast cancer advocacy will be with the Breast Cancer Consortium.

Thank you Gayle who brings so many together, for real, meaningful change. We have a big job to do.