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’.
Thank you for sharing this, Sarah. The void left from Rachel’s death is ever-present. These words resonate with me: “Only time will allow us live again, with that absence and loss, intact.” Absence and loss intact, as we move forward, continue our work, honor the legacy of those who came before us, and the lives of those left behind. This is what it’s all about, right? The “pink razzmatazz” is not only NOT good enough, it’s a detriment. It keeps us distracted from the realities of breast cancer, from the diversion of funds, from the wasted energies of so many who just want to help, from the trite and limited soundbites of “awareness” that have no real meaning, from the deaths, every year, of our friends, family members, and colleagues. It’s got to stop. For Rachel, and for all of us.
Yes. It’s got to stop. Absolutely.
I have friends who have survived breast cancer, and a friend who did not. It is devastating. What a great tribute you are giving to Rachel, through this blog. Take care
The magnitude of this loss is profound isn’t it? The void Rachel left will last forever. I’m so sorry for your paralyzing grief. I like to think I understand…at least somewhat…
And the thing is, for every single woman (and man) that dies from this wretched disease, there is also a huge void left for their loved ones.
This is why CJ’s quote is the “best” message you’ve received – because the loss IS forever. The losses are why we must keep moving forward. We must keep moving forward while carrying our memories of Rachel (and for me my mom too) in our hearts. As my friend Stacey said, we can’t let it be for nothing. We just can’t.
Hugs to you dear Sarah. And thanks for the beautiful film.
TY Nancy. Yes, there are too many women (and men) who we remember, like your mom, who are exactly the reason why we do what we do. Thanks for your thoughtful message. Sarah
Thank you, Sarah. That short clip left me in tears. As Anthony urged us at Rach’s memorial service, “Keep writing.” But also keep filming. We need visual reminders in every type of media to keep Rach’s memory alive and to support the causes that really do make a difference. The waste of money awash in “Barbie” pink definitely has to stop. XX
Thanks Jan. Yes, ‘keep writing’ was his message, and I intend to.
Sarah, I’ve been through some profound losses as well, and they are difficult and the hurt can last a long time. One thought that gave me a lot of comfort (although it didn’t ease the pain) was that the depth of my pain was a measure of the depth of my love. That part is a real gift. Warm hug to you.
Thanks Carol, yes there are moments when I am grateful for the depth of our friendship very much, but feel it was too short. Much too short. But I do know our friendship was something very special. But I miss her so much.
Oh Sarah, this posting fills me with renewed tears and waves of grief. Rachel is so missed and was such a force to be reckoned with. She will live on in our hearts. I am so sorry for your grief and all you are going through. I do understand what it’s like to lose a friend to metastatic breast cancer. She suffered for four years, and we became so close. The suffering from this disease is intolerable. Well, then my friend died. I have never forgotten her and never will.
TY Beth for your understanding. The loss is so profound.
The void is enormous, Sarah. I still find myself paralyzed with grief. Yet, what has helped me move, to do something, anything, is the sentiment CJ expressed. And something else. The first post I wrote after all my posts about grieving for Rach was inspired by conversations & communications I had with Rach. We talked about so many subjects that need more analysis, more discussion, in the breast cancer culture. She even gave me ‘assignments,’ topics she felt that I in particular should tackle on my blog, because she counted on me to dig and dig at the details. Her confidence in me, her respect for me, her certainty that I would be able to shed some light on the muddle of breast cancer awareness, these are gifts that I will always cherish. It breaks my heart that we can’t converse anymore, but she is still talking to me, in my head and heart, still inspiring me, still urging me on. And I don’t intend to fail her.
We will none of us forget her.
Thank you Kathi. No, we will not fail her. Rach was very good at selecting what you would be good at doing – I can just imagine her giving you assignments! And also imagine you getting top marks too. Keep going sister. For Rach.
Sarah, that video is so powerful and poignant. Thank you for creating it… what a gift, an ode and love note to a very special woman, by some very special women, for all women (and men). Together, you are slowly changing the face of this dreadful disease.
It is amazing to me how the departed continue to work their magic through those left behind. They’re still communicating; it’s just in a more ethereal form.
I’m sorry you are hurting so much.
In a word, it sucks.
Thanks Renn, don’t have any more words right now, but just thanks.
Yes, please do keep writing, keep filming, keep Rachel fresh in our minds. She was such an influence on my blogging and gave me courage to write from the heart and speak my mind so publicly. I’m forever grateful for that. I wish there were words to lessen the grief, but I know there are not. For now, know that I’m thinking of you, reading every word you & Ronnie write, and remembering Rachel.
TY Nancy. Rach gave many people courage. One of the many things I loved about her.
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