What comes next?

Last night we celebrated Samhain on Plot 44, the allotment I share with Gemma. 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.

And this is one of those times. I wrote on my last post, about how wearing it is. 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.

Mandy, Sarah and Rachel

Ronnie here, on the day Rachel’s book is published.

Since early April, just weeks after Rachel died, I’ve watched them. Mandy and Sarah, doing Rachel’s book. With such care and such determination.

The size and feel of the book, the fonts, the order of things, the additional contents, the notes. Everything has been discussed in such detail. Mandy the librarian. Sarah the perfectionist.

And of course it has been about grief. Doing the book has helped both of them to begin the gentle letting go of Rachel. Time after time in their editorial Skypes I’ve heard them wonder ‘What did Rachel mean by this?’. ‘What do you think Rachel would think of this?’ And then it’s been just a little bit like the three of them working on the book, Mandy, Sarah and Rachel.

They were determined to get it done this year, the year of Rachel’s death. And now they’ve done it. The book is published today.

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?’

The missing

Maybe it’s this time of year. End of August. As summer visibly slides away. The evenings are noticeably shorter, darker before nine now. Maybe it’s the reminder, that comes every year at this time of year, the time of year my father – Frank Horton – died, now 13 years ago. The time of year when I can smell autumn arriving. For all these years I’ve felt sadness at this time. Sadness for ‘the missing Frank’. And now this year I’m feeling the sadness for ‘the missing Rachel’ – my lovely friend who died in February.

How can ‘the missing’ or ‘the absence’ of Rach feel so real? How can something or someone who isn’t there feel so palpable? To disappear so quickly. And there was no fighting. Just stealing. In an uneven-handed way. Stolen. Like that.

Even with all this pain that I feel now, I’d still choose the short time we had, me and you Rach, a thousand times over than mediocre friendship.

And so I have been planning the walk. For you. With you. Without you, but because of you. The pilgrimage – meaning ‘a journey or search of moral or spiritual significance’. And the spiritual significance is you, Rach. Dear Rach.

If Rach had lived, then she would have visited me here in Britain. We would have walked together. And I would have shown her the places I love, in west coast Britain. So instead, I am walking without her, but with my friend Gemma. And we will remember Rach.

I spread the maps across the living room floor and gazed at the coastline of south Cumbria. The acres of sand, the footpaths of the Cumbrian Coastal Way and the Cistercian Way. The trainline that handily snakes along this coast which opens out into the wide sand of the Morecambe Bay.

And so we will walk. Through Grange-over-Sands, but also to Cartmel, a medieval village. We will visit the 12th century priory church. We will walk on the Cistercian way, we will wander in the ruins of Furness abbey, which was founded in 1123. We will stay in the old Quaker hall near the market town of Ulverston – Cumbria is the birthplace of the Quakers. We will visit Walney Island, an island at the far end of the peninsula beyond the working town of Barrow. We will visit the gardens at Holker Hall, oh Rach you loved to visit gardens just like me. And we found a hostel in Arnside, where we may stay on our way back. It’s home to a nature reserve with rare butterflies and alpine plants  and wooded walks. Our plans are fluid. We will take it one day at a time.

And Rach, you will be there with us. Walking.

I start my journey alone on Thursday 27 September. I will stay in Cartmel sleeping amongst the ancient walls and I will listen out for you.

On Friday evening I meet Gemma in Ulverston. And we will walk.

I will never forget you Rach.