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. I realise last Friday it is the 16th of March. In 2007 that was also a Friday, the day I had a mastectomy. I remember me post-surgery meeting a friend and raising my arms to hug her, and she backed away saying, ‘Don’t show me.’ I wasn’t intending to. Then the same person a couple of years later just before I was about to have a DIEP reconstruction – a massive decision which took me months to make – and she told me, ‘Oh my friend has just had that surgery, and now she wishes she hadn’t.’ Who doesn’t come through ten hours of elective surgery, and wonder if they did the right thing?
And these thoughts seem to come randomly from nowhere. They just drift into my consciousness. Sitting on the bus on Friday the 16th of March, late afternoon with Ronnie and a couple get on and sit in front of us. The sun is low and streams in and shines on their heads. He has grey hair, softly falling in slight curls over his ears, hers is dyed very blonde and is scraped into a ponytail, and her scalp is visible. Then – from nowhere – I think of Rach. Of her shoulder length hair when we first talked, then her scalp, her downy grey hair growth, that sort of baby scalp looking, well it could be a baby or an old person, or is it something between the two? And I feel like crying.
I think of Rach poignantly describing her husband Anthony shaving her hair – again – sitting on a stool in the garage. I think of her posing for that photo with her dog Newman, both of them wearing headscarves. She’s beautiful, beaming her beautiful smile. And I will never see her smile again. Or laugh. Or swear, or joke. Our regular conversations, mostly on Skype, but also joyously in person last summer, were full of exclamations of “fucking breast cancer!” And, “oh yes, it always feels better to say that doesn’t it?”
I find I am paralyzed, at times, by this grief. I don’t know if anyone else understands. But I have conversations with CJ (or Dian Corneliussen-James to give her her full name, but we all call her CJ), one of the founders of METAvivor, a US non-profit organisation that provides support for metastatic breast cancer patients and also crucial grants for funding research specifically in metastatic breast cancer. She tells me how she has dealt with the loss of friends, lost to breast cancer.
“I still miss them greatly. But it is their losses that propel me forward when I am down or discouraged.
I cannot change the fact that no one did this before us, but I CAN help change what happens for those coming after us. So I do this for the future … yes … but I also do it as my gift to these incredible, irreplaceable friends.
Time will heal to an extent. But I know it is a hard road … and I don’t think one ever completely recovers from such a loss. For that I am truly sorry.”
It’s the ‘best’ message anyone has sent me. A recognition that this loss is forever.
I love CJ’s quote. The recognition that this loss is forever. The way I expressed Rachel’s absence in the words I spoke at her service was as ‘a void’. And that’s still how it feels. For me and Rachel’s friends and family there will be a void in our hearts that will always be there. Only time will allow us to live again, with that absence and loss, intact.
Meanwhile I try to find something I can do to start to honour Rach, to keep her alive, for me, but for anyone who knew her. She spoke fiercely and with wit on her blog – The Cancer Culture Chronicles – and thousands of people have visited her blog since she died.
A few weeks ago, me and Gayle Sulik, author of Pink Ribbon Blues, and a good friend of mine and Rachel’s, made a short film together. To show how powerful Rachel was, how strong, how outspoken – now she can no longer speak for herself. This is the first film for Rach. 90 seconds. This is a start. To honour Rachel. Another longer and more reflective film about friendship is also now being carefully made. And there will be more: more film, more words, more action. We will continue to write and to speak out.
Rachel’s family have asked for you to support the two memorial funds set up in her name.
METAvivor Research and Support, Inc – who called Rachel ‘the most influential blogger in the metastatic breast cancer community’.
Breast Cancer Action – who say, ‘we will continue to carry Rachel’s torch in moving beyond the “pink razzmatazz” to systemic change that will end this terrible epidemic’.