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.

So not right

February 2012. Flying to New Jersey to say goodbye to Rach.

On the way home from New Jersey I find myself in a window seat next to two British women on the plane. They were sitting in front of me on the way over and I remember them, they are happy, laughing, enjoying themselves. The inevitable ‘what did you do?’ conversation ensues. They’ve done ‘everything’ in New York, having travelled over to see Barry Manilow in concert (does he still play I wonder to myself, although the women tell me he wasn’t well and the concert was cancelled.) So when it’s my turn I just say I went to a funeral. ‘Oh,’ they say. ‘My friend died,’ I say. ‘Of breast cancer,’ I say. They look at me. ‘How old was she?’ they ask. ‘Forty-one,’ I say. ‘Oh,’ they say. ‘It fucking pisses me off good style,’ I say. I don’t mean to swear but I’m so angry. And all this last week I’ve been having very short conversations which punctuate very long silences which consist of few words, ‘This fucking sucks.’ Because it does.

I look out the window. The runway, we’re moving out now. ‘American?’ they ask. ‘No,’ I say, ‘Australian British.’ ‘How old?’ they say, again. ‘Forty-one,’ I say. ‘Yes, we know a girl‘, they say, ’27,’ they say, ‘with a daughter. Yes, she left a daughter behind.’

Oh, I think, so that’s worse than Rach is it?

Words for Rach

February 2012. From Liverpool to New Jersey, rosemary for remembrance. For Rach.

On Monday 6 February 2012 my dear friend Rachel Cheetham, blogger at The Cancer Culture Chronicles, died of metastatic breast cancer. This last week I left the blog in the good hands of my beloved partner Ronnie Hughes, as I travelled over to New Jersey to say goodbye to Rach. I’ll be posting more about this, and also editing film of the service. But for now, here are my words for Rach, as read by me on Saturday 11 February 2012 at the ‘Celebration of Life’ service for Rachel in New Jersey.

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I’ve only known Rach for a fairly short time, but we very quickly became close. I was looking back through my emails to see when we started to get to know each other and I found the first message from her in November 2010. You see Rach and I both inhabit the ‘blogosphere’ – that’s what we call the space where we bloggers meet. Yes I have a breast cancer blog, like Rach. I too have been diagnosed with breast cancer, at a relatively early age, have been treated, have spent years of my life being a patient. But unlike Rach, I’m lucky. I’m lucky because my cancer hasn’t behaved like Rach’s did – at least not yet. So I’m still here to talk about the life I’m living after diagnosis, which for the most part doesn’t involve much medical intervention. But the thing that Rach and I immediately had in common was that we disliked the culture of breast cancer that wanted us to be triumphal survivors. You may have read Rachel’s obituary, written by Anthony (her beloved husband), about how they got on with their lives after Rachel’s diagnosis and treatment….

Confident treatment was successful, because everyone “survives” breast cancer, don’t they?

But in fact, not everyone survives breast cancer, and bloggers like me and Rach felt that telling the truth about breast cancer might actually help us start finding a cure, and eradicating the disease in the first place.

I can hear music

A Sky of Honey, in times of trouble

Ronnie here, with some music. Because we need it now.

When I find myself in times of trouble, music always comes to me.

When I can’t even bear the sounds of silence, I need music. Not any old music, though. Very particular music.

On the day Sarah was diagnosed with breast cancer almost five years ago, we could hardly speak for shock and fear. But neither could we stand the raw sounds of our own tears and trepidation to be the only sounds in the room. So we listened to Kate Bush, over and over and over. Not the whole of her work. Or even the whole of her ‘Aerial’ album. Just the long continuous suite on one CD of it called ‘A sky of honey’. The joyous journey of a day, on our least joyous of days. And Kate didn’t make it all better. How could anyone? But we both uttered one word for what she did that day. One word that we’ve used on all the other days so tough we’ve had to send for her again. ‘Balm’.

What is this ‘balm’? How does it feel?

Oh Rach

The Skyping begins. Rachel interviewing Sarah for her Can Do Women blog, January 2011

Still Ronnie, standing in while Sarah is New Jersey.

Is it still too soon? I want to write Rachel something lovely. Something as good as anything I’ve ever written. (Something as beautiful as her friend Chemobabe’s eulogy, or as world-changingly essential as Gayle’s) She deserves at least that. But I can’t, yet. I need to take the fact and my feelings about her death to the park, to the cathedral, to the river – to my sacred places. I need to tell them about her. And my sense of loss. Until I’ve done that I won’t find the words, my words, for my friend Rachel.

So, for now, here is a very short poem.

Memory Pools

Rachel, in Greenwich village with Sarah, last summer, buying a hat for Buckingham Palace

Ronnie reflects on the places where memories accumulate, as the news comes in about Rachel dying

“All of us who have spent much time in hospital waiting rooms, corridors, wards and consulting rooms, and that probably includes most of the readers of this blog, will be aware of the particular form of ‘waiting’ these places specialise in. Hours of boredom, when you realise what the true meaning of being a ‘patient’ is, sometimes interrupted suddenly and violently with life changing, life threatening news. Those moments when a previously dull, colourless place suddenly goes ‘real’, and the quiet hum of a ‘normal’ cancer clinic turns into shock, thudding heartbeats and, sometimes, the sound of crying. The sound of somebody creating a memory pool.

End of life

Ronnie reviews a book on a subject all of us with a cancer diagnosis have most likely thought about.

“Death, to paraphrase Steve Jobs, may very well be what makes life so valuable, may well be ‘life’s change agent’. But we still don’t like to talk about it.

It’s a few of months back. Sarah, Fiona Shaw and I are all at the magnificent British Medical Association building in London (Designed by Edwin Lutyens, no less). The formal part of the event is over, Sarah has her ‘Highly Commended’ status for her book, and now it’s drinks and mingling in the crowded hall. But I notice a couple of women there with a large space around them. I remember them winning a special award for their book and go over to congratulate them, wondering why other people aren’t doing the same. ‘This is always happening to us,’ they laughingly explain, when I get to them. ‘People, even the medical people this room is full of, are terrified of our specialist subject. They can barely even say the word. The word Death.’

The two women are Mary Jordan and Judy Carole Kauffmann,  authors of the book ‘End of Life – the essential guide to caring’. Sarah and I have both read the book now, and both think it’s well worth recommending. Here’s why:

The Day of the Dead

The Day of the Dead, Sefton Park, Liverpool, 2010

Guest editor Ronnie, with the final round up of our blog-a-day for October.

In the old Celtic calendar, the end of October marked the end of the year. All the harvest is in, the nights are darkling for winter. And they would celebrate with the ancient feast of Samhain. We still celebrate this day. We are celebrating it this weekend. Many of us call it ‘Halloween’. But also, many of us know it as ‘The Day of the Dead’. And here too, we remember those we have lost. And we name them:

Audre Lorde

JaneRA

Deidre

Linda McCartney

Dusty Springfield

Dina Rabinovitch

Jo Spence

Iris Berg

And thousands and thousands of other women who died too soon, because of breast cancer. We honour their memories and we celebrate their lives. On this Day of the Dead.

All of this month, with the help of our friends, we have been doing everything we could think of to change the conversation, and raise awareness about the reality of breast cancer.

World without cancer

Some days chocolate is a necessity. Real friends know when.

Let’s face it, Facebook has redefined what we mean by ‘Friends’. You know when someone asks if you know so and so, and maybe you reply, ‘Well I do know her/him, I mean she/he is my friend, well my friend on Facebook that is.’

Does it mean anything?

I’m one of those people who have in the past accepted every friend request on Facebook, only to regret it days later when my News Feed is filled up with Farmville requests or some other Jewel type annoying games. Well I think they’re annoying anyway. That’s not what I want to use Facebook for. Or announcements about what you’re watching on TV right now. No thanks, I’m just not interested. And it amazes me how the most banal comment can attract 28 comments. I just can’t do trivial. I mean I love to engage with real lives, and lives lived in joy and delight. And I do enjoy ‘normal’ now a lot more than I ever thought I could. But sometimes I feel that my world is filling up with trivia that doesn’t enhance it, and anyway, really how can anyone have 1,159 friends? Or 159? Maybe 59 at most? If you are seriously going to engage with them and have meaningful conversations as well as some fun. By the way, I don’t know the right answer. I hate those Facebook messages that go ‘post this if you’re really my friend, let’s see who is paying attention’, because what I think is well, no actually, if you’re really my friend – TALK TO ME.

So, I’m one of those Facebook users who does cull their Friend list. Yup, I unfriend people. And you know when I unfriend someone with 2,543 friends, I know they won’t even notice. If I wrote on their wall, would they even notice? And when I get a Friend Request, I respond with a message, ‘Do I know you? Have we met? Do we have something in common?’ Because I’m not interested in becoming ‘friends’ with someone if we don’t have something to talk about. I mean, real friends, that is people I know in the flesh, I interact with them, I chat, heck I even have lunch with them sometimes. And I am careful who I spend my time with. Because I know that time is limited. I feel that more keenly now. No, I’m not being a miserable cancer patient who’s predicting doom and gloom that will result in my early death. That’s not what I mean. I also know that I have less energy now too, and the energy I do have I want to spend it wisely. Not waste it. I can’t. It would be unfair on myself.

What I mean is, that doing this blogaday has shown me something. It has shown me how deeply affected I am by the conversations I have when they are real.

Three weeks in: Open your eyes

What we make makes us, the allotment harvest

It’s guest editor Ronnie again, for another weekly round up.

Well, we’re getting kind of used to this now. I get up and post the day’s blog, then Tweet and Facebook it. Before we go about whatever the business of that day might be. Then, by the afternoon of each day, we’re thinking about tomorrow’s blog. By the evening, final editing or writing if it needs any. At the same time watching that day’s and other recent blogs, responding to comments and watching how the conversations and statistics are going. And having a life. I mean, Sarah did have a rough plan for what was going where and who was writing what, at the beginning of the month. But we’re only vaguely guided by that now, as we respond to real life and the conversations the posts are helping to create.

This week began with something surprising, a photo of Sarah boxing. ‘I am ready’ finds her in a Boxing Club working up the courage to get into the ring for the first time, and then taking real pleasure in something she never even thought she’d want to do. Then boxing being added to the range of physical activities that ‘help me not get depressed…and help reduce my risk of recurrence of breast cancer’.

Tuesday morning found me boxing in the same club, also for the first time. And also doing a risky guest post, of jokes about breast cancer. ‘This one’ll either fly or fail’. I said as I Tweeted about ‘Bored of cancer’ Fortunately, several people with even more experience of the kinds of hospitals and waiting rooms I’m so bored of, thought it was funny. ‘Ha! Wait till you get to 11 years and counting’, said Julie Short.

Tuesday evening, we did a gig, ‘Women at The Brink’