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.
It may well be said as a compliment, in fact when I think of how people have said it to me I think that it probably is. They see ‘bravery’ where I just see facts, and with those facts am faced with making treatment decisions. I think they would do the same if they were faced with a cancer diagnosis, the adrenalin fuelled drive for life, for staying alive, the desire to live – I know that surprised me when it turned up from within me.
I was reflecting recently on my life since 21 February 2007 (the day I was diagnosed with breast cancer) and through all that year, and the next year, and the one after that in 2009. It was all a series of medical interventions as described above. All for breast cancer. They didn’t stop in 2010, but they were less, the decisions were less. But then the unwelcome arrival of the haunting ghost of depression appeared unannounced. 2011 was a similar year, moments that would have been very big highs in my life prior to 2007 – like publishing a book and the publicity around that, the recognition – and also the fact that my reconstruction was successful, that I was playing sport and running again, my life was being returned to me. And yet. None of that felt particularly good. Because I recognised that all the big stuff had been driven by the anger that I felt. Yes. Anger. Anger that so much of my life was stolen from me, forced into making those awful choices, where all the options are crap. Angry that it was years of my life – years when I could have been doing something else. Angry that this happens to so many women, and yet the culture of breast cancer portrays it as glossy, pink and cheerful. That it doesn’t seem like anything to do with life or death. Angry that we do not know how to prevent breast cancer, and that the statistics are going up year on year.
Now, I’m living in a relatively stable or ‘normal’ life. For now. And that’s all we can say – for now. I am not cured, I have No Evidence of Disease (NED). Breast cancer can, and does, recur, sometimes years after the initial diagnosis. We don’t know why, or who this will happen to. So, I say ‘for now’, and that is as good as it gets for me. It’s ‘normal’ for now. Although ‘normal’ is a word I’d have previously despised to be called. So I’ll call it stable. I’ve only had two hospital appointments this year, with one more to follow (as far as I know), and these are all as a breast cancer patient.
I’m part of a breast cancer community of people, mostly women, I’d never have found without social media. Whilst I find myself worn out by the effort it’s taken me to get to here, they continue to perform a valuable role as support, and as voices. They are angry too, at times. They express the things I’ve felt and written about… the uncertainty of treatment, the harshness of treatments, the lack of prevention, the limitations of screening, and the continual questioning of a breast cancer culture with all that pink and the ‘circus’ that parades each October (and increasingly the rest of the year too). A refreshing contrast to the smiling women – sometimes wearing pink t-shirts – who boldly declare they have ‘beaten’ the disease, and who sometimes claim this has been helped by their ‘positive attitude’.
Readers, I am tired, so tired of all that. And then, of course, as you know my dear friend – the one who could match my anger with caustic wit, with sword edge observations, with sarcasm as sharp as a razor – you know who I mean, dear Rachel, died in February this year. Of metastatic breast cancer.
She egged me on, encouraged me, I was buoyed by her anger, her relentless anger that never for a moment lost a spark, however bad her latest treatment was making her feel.
And so Rachel’s book project was begun in April this year. Rachel was a blogger, she wrote The Cancer Culture Chronicles from June 2009, her second recurrence of breast cancer, until her death in February 2012, age 41. Her mother, Mandy, asked me to help turn her blog into a book, and so for the next six months we were immersed in her words. Relentlessly surrounded by them, reminded of her every time I sat down to work on the book.
And so I am here now in this valuable breast cancer community, and yet every time I hear of another member with a recurrence, or a worrying test, or more scans…. it all gets so very, very wearing.
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 that makes me very angry.
Because I don’t want to lose my friends. And, selfishly, I don’t want to die.
And so, my reaction to my jaded worn-out spirit is to seek solace elsewhere, in the everyday, the ordinary. The delights of nature, gardening, autumn leaves, baked camembert (cooked in an open fire and eaten outside as the sky darkens), knowing the cycle of the moon, the times of the tides, watching the Canada geese arrive on the marsh, wondering where they came from and where they are going.
Delighting in life.
It doesn’t mean I don’t care about all that other stuff, the stuff that makes me so angry. The stuff I feel I’ve said once in my book, and then again and again. (And wondering dear readers, just who is listening?)
But, thinking about Rach, as I often do, I feel sad.
Recently my sadness about Rach turned to furious anger. Someone lovingly said, ‘She was so brave, she never complained.’ Brave? She simply did what she did, just as I did, made treatment decisions based on medical facts. Is that brave?
She. Never. Complained.
Oh readers, she didn’t complain, no you would never hear her say, ‘Oh look at me, how terrible this is.’ No, she didn’t complain in that way. Her refrain about her own situation was, in fact, ‘It is what it is.’ She did not wallow in self-pity. But she did complain. She expressed extreme dissatisfaction and annoyance about the current state of breast cancer. And she wanted these ‘complaints’ to be heard. She wanted you, and all of us to hear the reality of Stage IV breast cancer, the disease we have no cure for; the lack of funding for research for Stage IV; the useless shit that is produced en masse in pink that does nothing to change the conversation.
But she wanted to be heard alright
Now, there are about 94,000 words in Rachel’s blog which I have, with the help of her mother Mandy, included in her book. They are angry, powerful words. I invite you to read, well let me think, about any 250 of them, and you will find that yes, she did complain. She ranted and raved and shouted as loud as she could using a keyboard. That she was angry that ‘winning the war’ on breast cancer was never going to happen to her, short of a pharmaceutical miracle that didn’t appear to be in anyone’s research budget. She wasn’t going to ‘beat her breast cancer, win her ‘fight’, and arrive at the other side a beaming grateful breast cancer survivor. No. That was never going to happen. She knew that.
And she was fucking pissed off good style about it. I know. And I think she’d want me to remind you about that. Just in case you had any ideas that she was ‘bravely battling’ each day. (I’m sure if you knew Rach you would know that visions of pink ribbons did not sustain her).
And she wanted you to hear that she had fearless friends who loved her. Friends who would listen to her complaints. Who would join in with their own. Who would take actions to spread the word that nothing was going to change if we complainers didn’t make some noise! I was one of them, and I didn’t want to lose her. And that made no difference. I lost her. We all lost her.
But since I’m still here, I can tell you, in no uncertain terms, that Rachel and her complaints deserve to be heard. As we remember her anger, her wit, her reality, her complaining, we honour Rachel’s words. We honour her spirit. We honour the work that she began. We honour the woman who lived and breathed to make a difference in the pink scheme of things. With honesty and reality, no matter how uncomfortable it got. We honour the work that we are left to continue. And we honour ourselves for telling the truth.
Don’t take my word for it. Read Rachel’s words for yourself. Her anger, her wit, her reality, her complaining – they jump off the page. The Cancer Culture Chronicles is now available in print.
The Cancer Culture Chronicles is the collected writing of Rachel Cheetham, who died in February 2012, aged 41, of metastatic breast cancer. Rachel began her blog in June 2009 after her second recurrence of breast cancer, and continued to write until her death.
The Cancer Culture Chronicles has been compiled and edited by her mother Mandy Cheetham, and her friend Sarah Horton. The book contains all of Rachel’s blog posts in their entirety, with notes, resources and tributes.
The book will be available from 6th October 2012. This is a 5×8 hardback book, 384 pages and available at cost online from Blurb, price $30.95 (£21.50) plus shipping. Please note, there are no profits in this cost, so if you like the book please consider supporting Breast Cancer Action and METAvivor Research and Support, Inc. with a donation in memory of Rachel.
Download the pdf information sheet here.
Thanks to my friend, and Rachel’s friend, Gayle Sulik for our conversations which help me fearlessly write the truth.