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.

‘She never complained.’

I reflect from time to time, on what people say about me, about others, other women and men, as they endure – and yes I did mean to use that word – endure their treatments for cancer. Sometimes they say we are brave, and that we don’t complain.

I’ve never understood the ‘brave’ comment. What’s brave about making decisions involving chemical and drug treatments and surgery or multiple surgeries? Or more tests? Or more observations over time to see what happens?

What’s brave about agreeing to take a drug that has a statistical chance of increasing your life span? What’s brave about agreeing to surgery, to anaesthesia, to the potential complications, and possible side-ffects of all of them?

What’s brave about any of that?

It’s simply a choice, and not a choice that anyone would ever want to make. It’s not like choosing a new outfit, or where to go on holiday, or even what kind of an occupation you would like to pursue. It’s a choice from a lesser, more complicated, and sometimes painful set of options. A choice weighted with life and death statistics. It’s a choice made hoping that you wind up in the ‘good’ statistics, in the hope that your outcome doesn’t have the  worst side-effects (or at least not all of them), or the unforeseen complications. The ‘unusual’ patient. I know.

I know all of that.

22 February 2007, day after diagnosis. Brave? No, pissed off.

And I have.

The memento book, completed on my walk to remember Rach.

I am back from my pilgrimage walk for Rach. I am filled with memories, and I filled my memento book with words and images. These words:

The essence of Rach

The essence of a friend. What is the essence of Rach? How Mandy and I pondered that. In the end sections of Rachel’s book, after we’d completed the blog posts and the resources, Mandy said she wanted it to contain the ‘essence of Rach’. So, what would that be? Newman, her dog, obviously. Her beloved husband Anthony Moro. But more, her family, and all her friends from across the world who wrote and spoke tributes for her. Her love of gardening, her delight in heirloom tomatoes, her culinary skills. And more. I hope we’ve somehow captured the essence of Rach in her book.

Dear Rach, during this summer I have been wrapped in your words. In more ways than you will ever know. They surround me. All 94,000 of them. Every one is balm.I think now, of the time we had together. On an edge. Meeting on the edge. Your edge doesn’t frighten me. My edge doesn’t frighten you.

I miss you.

November 2011, Rach and her beloved dog Newman

—

Future safe

This post is being published on 1 October 2012. On that day I will be somewhere in Cumbria, with Gemma, walking and remembering my friend Rach. It’s the beginning of Breast Cancer Awareness Month. So, here’s a refreshing antidote to all that pink. We are publishing Rachel’s blog, ‘The Cancer Culture Chronicles’ as a book.

While I am away, my blog is left in the capable hands of my guest editor, Ronnie Hughes. I will catch up with you when I return.
—

“I will never forget you Rach.”

I have written that and said that over and over again. I didn’t write it as a promise, but in a way it has become one. Although, would Rach have laughed at that with its ring of ‘the promise’ that Susan G Komen’s Nancy Brinker made to her dying sister?

Dying sisters aside – although it certainly felt like I lost a sister – this is about never forgetting. And future-safing. Future-safe. What’s that? In January 2011 Rachel wrote a blog post called ‘Preserving our Digital Legacy’, where she asked the important question of:

‘What will really happen to our blogs etc., once we are gone?’