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.

Under wraps

Dear readers, it’s fair to say blog posts have been hard to come by lately for me. What with the unexpected death of my dear friend Rach in February I find myself immersed in grief and selfishly only doing things for myself. Gardening and creativity.

But, some days, for all your experience, all your wisdom, and for all your just knowing things the way only women do, you walk into a situation where you cannot be other than belittled and patronised. Just like I did last week. I  wished and wished I could have shared this experience with Rach, I can just imagine her response. And, equally, I can also hear her saying, ‘You have to blog about this Sarah, you just have to!’ I know she would say that.

Here’s what happened.

The other week I received a phone message out of the blue from a film producer who’s making a documentary about ‘the dangers of breast screening’ – his words. He’s someone who I know in Liverpool and very occasionally, like every few years, will bump into him, but we’re only on that level of knowing each other. I’m intrigued by his message

Celebrating life

I write a lot about flowers and plants, about gardening on Plot 44, of scenic walks and happy times; about celebrating life, and especially gardening – so much so that I now have another blog where you can follow my gardening activities – Plot 44. But one of the realities of being alive, is that we will face death. We all die. And my experience as a cancer patient means that I’ve thought about death a lot.

And these last few months I am in grief for the death of my friend Rachel, who died of secondary breast cancer age 41, in February 2012. Whose ‘celebration of life’ service I structured and delivered with my friend Gayle Sulik in New Jersey, and the memory of that is a ‘good’ memory. It felt so right to do that for her.

3 February 2012, out on the shining shore on our regular Friday walk, which as it turned out was a few days before Rach died, and the last ‘normal’ Friday for a while.

Just before Rachel died I had, after much thought and reflecting on how breast cancer had changed my life and how I wanted to use that deep reflection, decided to apply for a training course to become qualified as officiant to perform services for life celebrations after death. (This is just one organisation, there are several who offer training). Celebrants are trained to perform unique services to mark the lives of people when they die, without religion, in a way that focuses sincerely and affectionately on the person who has died. Back in 1999 when my father died we had this type of ceremony, and it’s stayed with me as a ‘good’ memory, a happy day, a celebration as well as a time to say goodbye. Now, because of my experience with breast cancer, I’ve become comfortable talking about death, and illness. I am not afraid to have deep conversations, I am comfortable with ‘difficult’ subjects.

I talked to Rach about this, in what was to become our last Skype together. Rach thought it was a great idea. The hurdle for me though, is that I don’t have enough money to pay for the course fees. ‘No worries,’ said Rach, ‘you can just ask people to chip in. I’d chip in for you, you’d be great.’

Star gazing

Sarah with Rhona in Spain, March 2012.

This is a guest piece from Rhona Simms (née Shepherd) who we just had a holiday with in Spain. My piece ‘Letting go‘ is about the time Ronnie and I spent there with Rhona. 

“When I asked Sarah and Ronnie whether they would like to join me on the ‘Annual Spring Clean trip to Spain’ which I make every year to clean our apartment there, I knew it was a big ask. For me, it’s just about practical things, because the main holiday there with my lovely family would happen later in the year. But wouldn’t it be great to share the evenings with two people I really care about, and who I know have had such a tough few years? In fact the last five years had changed the course of their lives forever, and although Sarah had reached a stage where all active treatment for breast cancer was complete, I knew that losing her dear friend Rach had clearly put her in a dark place where pain, grief and anger were all clambering for attention.

When a friend tells you they have breast cancer, you want to do something that stops you from feeling helpless, and that may make a difference, something practical as nothing else can really help, can it? And when a friend tells you their best friend has died of breast cancer, and you watch them carry out the most moving and meaningful memorial celebration of a person’s life you have ever seen, and know it is their best friend being remembered, you want to hug them, and tell them that you love them, and that they are amazing. And I realised I could.

So I did the big ask (via Ronnie, of course, too easy for Sarah just to say no) and to my delight they said yes!

Like Sarah, flying takes me totally outside of my comfort zone, and flying with the budget airline that prides itself on its zero tolerance rules, just packing is always a challenge. But I know I have any essential ‘bits’ stored in Spain, so packing is not that big a problem. But how would Sarah cope? What medicines might she need to bring with her, maybe she has to be more careful about skin care products than I am, what if it’s cold and she has not brought warm enough clothes? And would Ronnie and Sarah let me get on with the cleaning and organizing whilst just enjoying themselves, and would they be offended if I said they could not help me, because that was not why I had asked them? What if, what if?

Losing Rachel

Rachel and her dog Newman

My friend Rachel died on 6 February this year. From metastatic breast cancer. She was 41. She will be greatly missed by her beloved husband Anthony, her family, her friends, her dog and the thousands of people who read her sharp, angry and witty words on her blog where she challenged mainstream breast cancer culture: The Cancer Culture Chronicles. She was my friend. In fact, she was one of my closest friends, found in the blogosphere and we became close despite the 3,500 miles that separated us. Her death came too soon, I was not ready for this and the grief has been profound.

In the grief of Rach I’ve been remembering other things. Sort of introspectively remembering my life since my breast cancer diagnosis, things that happened.