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.

15 thoughts on “What comes next?

  1. I don’t know why I’m crying, really, because I can get to interact with you after this every day. But I’m moved and touched by this, Sarah. Answering ‘what’s next’ takes courage and honesty and perspective. It’s a question I’ve been asking myself a great deal these past months. I don’t know the answer yet, but I do know that the words you quoted by Audre Lorde are so apt. It’s important and so helpful to know we are part of a continuum, all of us, including and especially Rachel, for whom you have helped ensure that her words will live on. These are perfect thoughts for Samhain. It is the night of all nights when we should remember & honor all the souls we’ve loved and lost, with the certain knowledge that they’ve made a difference.

    As have you. Here’s to honoring our past, looking toward the future, and living fully in the present. Love to you, dear Sarah.

  2. Your fearless friends are here, when or if you are ready to return in this way. The need to return to life – the tangibles elements we can grow, see, smell, and touch – is important for all of us. One of things that contributes to health, so critical in life after cancer, is that sense of joy and excitement about every day and what it might bring.

    You’ve made a wise, and fearless choice.

  3. I remember that day on the beach, Sarah. Breathing in the salty air as the wind burned our cheeks. Preparing for Rachel’s Memorial Service. Swimming in the raw emotion of it all while knowing that the torch we carry is both within us and outside of us, as part of the continuum. And as Kathi said, honoring our past, looking toward the future, and living fully in the present. It’s an honor to walk with fearless friends. To Samhain. To clarity. To Sarah.

  4. Sarah .. another beautiful post.

    And the Consortium … so much fantastic potential. Gayle has told me about it and I love the idea. I will be liaising with the Consortium and am honored to be a part … not part of the official team … but a contributor nonetheless.

    But I write now due to Samhain. Don’t know precisely what it is … but gardens … I love gardens. Mine is overgrown and here’s why. Perhaps it will be my next blog … the blogs I somehow never get around to writing … but perhaps I will tonight. I feel inspired. But back to my point ….

    When I was first diagnosed with MBC in 2006, I had a fairly new garden. I had such high hopes and was desperate to see it grow. But I was certain I would not live long … highly aggressive MBC to the lung that was found less than a year after primary BC treatment ended. So I went to the local nursery and repeatedly said …. I want a big plant that grows fast. And that’s largely (no pun intended)what I got. Now I have a completely overrun garden and this is the very first year I’ve finally cut back a few plants and have finally realized that perhaps .. just perhaps .. a few need to be moved or remove altogether. It is immensely satisfying to get to that point.

    While clearly, statistically, each year brings me closer to an MBC end, psychologically, I’m in a completely different place. On the one hand, I’m hopeful that I may be one of the 2% that has an oligo metastasis that is surgically removed and never recurs. On the second hand, there is guilt that so many far more deserving and/or younger and/or … and/or … have gone so quickly while I have lived on. And on the third hand … there is the acceptance that I’ve been given an incredible gift to live this long in a symptom- and side-effect free state and that if my life should end 2013, I would still have been given a wonderful gift. And in the final hand, I do not know what comes after death, but if there is an afterlife, then I am certain all my incredible MBC friends who were and are so important in my life and have gone before me, will be there when I arrive and we will have a reunion like no other. It is this that makes my situation bearable regardless of what happens.

    Sarah, if I have understood correctly, Rachel knew very few with MBC. There is no way of getting around the fact that her death, at such a young age, was devastatingly tragic. But please know that if there is some type of life after death, which I believe …. not necessarily in the religious sense, but just so …. then the MBC community that went before her, was waiting for her when she arrived. It is an incredibly tight community … a sisterhood of the sort that I have otherwise never encountered …and if cliquish, then it is so only to those without MBC and no appreciation of MBC … NEVER to one of its own or to those who truly understand. If there is life after death, then Rachel is now with my dearest of friends and they are celebrating not only the life she left, but the new one that she now has.

    I hope I am not speaking out of turn.

    Most fondly, CJ

  5. What an honour to be in this consortium, Sarah. You will be a powerful voice. You already are. I’m about to be diagnosed as MBC, so I will be finding out what that path is all about. I never really wanted to know, but what choice do we have when the dreaded disease returns with a vengeance? Speak on, for you, Rach, and for all the rest of us. xo

  6. Sarah,

    This is a beautifully, moving post. Thank you so much for providing such an excellent body of words that have moved and inspired me. Anyway, I’ve “Liked” the Breast Cancer Consortium, so I know this isn’t goodbye!

  7. Sarah, a lovely post. Thank you for referencing me. I have found over the years that I have created an “uneasy pink” persona and eventually that became something other than my authentic self. I come to resent that I have become a persona to write the blog. I just want to be me, the me that waxes and wanes like the moon. I’m still trying to figure out the answer myself — how to continue to help change the course of breast cancer while still being me. And you can go ahead Being Sarah. :)

    I know you won’t get too far from me. An ocean is nothing compared to my stalking skills.


  8. Hats off to you Sarah; you need a necessary break mentally, physically and spiritually. your heart ans soul will always be involved, but others can now add their talents and energy to what you have worked so hard for. MY LOVE AND DEEPEST RESPECT FOR YOU AND RONNIE. Gail from Pa.

  9. Here is what I cherish about you, Sarah. You are one of the most thoughtful, deliberate people I know. It is why there is not an ounce of bullshit in anything you do. It is why I cherish your writing and your humor. What motivates you more than anything is sorting through the noise of life and finding — no, singing out — the little bits of truth.

    I am sad to see this post, but I also understand it. And I trust 100% that this is a Choice with a capital C, because, from what I have seen of you over the years, that is your great art. Although you and i are different people in our pace and activity, we both cherish the authentic. This is how we both came to know and love Rach. And one thing I have learned from losing Rach and others, in a way more permanent than your departure from the blogosphere, the truth has a way of sticking to you. It goes deep into your heart and mind. You, my friend, have spoken many of those truths. I have read the f***ing blog, and those truths won’t leave me any time soon. So thank you for the time you have given this community through the blog. I know you will find other songs to sing in other places, and they will ring out just as beautiful, haunting, and true.

    Love you, sweet friend.

  10. Hi Sarah,
    Reading this post makes me feel sad, but this is primarily a selfish reaction because I’ll miss reading this blog on a regular basis. I’m also feeling a lot of other emotions. I’m grateful for the wisdom, passion and honesty you have shared through your words here, Sarah. I’m glad you are feeling more at peace and are ready to move on to a different phase of your life now. I’m also sort of envious because I don’t feel that way yet and I’m not sure when or if I ever will. I respect this choice you now make, as well as so many of your past ones. I love how you speak with truth and yes, outspokenness. I’m comforted knowing this will not be ending any time soon! I admire how you care so deeply about so many things. Mostly, I’m grateful to call you, Sarah Horton, my friend.

  11. Sarah, I too was saddened to read that you will be taking a break from being “Being Sarah” as we know you. But also SO excited for your new opportunities, and the chance they provide for making a difference via the Consortium and your funeral celebrant training. Much luck and love to you on this new path. PS I have my copy of Rachel’s book right here at my desk, and will be reading it this winter. xoxo

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