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.

Has Komen ‘lost the brand’?

Don’t worry, you’re not really on Komen’s website

A tongue in cheek guest post here from Ronnie, a born satirist. The thinking being that satire might be able to get to the heart of a serious matter, in a way that more straightforward social critiques sometimes don’t. 

“First, a word of explanation may be necessary for our readers not based in the United States. ‘Komen’ in this post is ‘Susan G. Komen for the Cure’ - the most widely known, largest and best-funded breast cancer organization in the United States, but one that has been criticized for its use of donor funds, as well as its choice of sponsor affiliations and its role in commercial cause marketing. In early 2012 Komen took a controversial decision to cut its funding of Planned Parenthood, a decision widely seen as politically biased and revealing Komen’s close association with the Republican Party. The decision was reversed within a few days, but the damage to Komen’s reputation is considered by many to be serious, permanent and possibly final.

Over here in Liverpool, I’d heard of Komen, of course. But my interest was particularly piqued when a British newspaper, The Guardian, started reporting in detail on the Planned Parenthood issue, quoting our friend Gayle Sulik, talking about pink culture organisations in general, and Komen and its recent difficulties in particular:

‘Komen is the largest and is held up as the gold standard. But it is just part of it,’ she said. ‘There’s the conflict of interest, with regard to the companies associated with pharma and diagnostic tools, who stand to benefit from treatment. Then ‘pinkwash’, where products might be carcinogenic, to unhealthy products like M&Ms. I’ve even heard of Pub Crawls for the Cure. It’s part of the general culture.’

Gayle Sulik, sociologist and author of ‘Pink Ribbon Blues’, said pinkwashing is only the beginning of how ‘breast cancer culture’ undermines women’s health. Sulik, a researcher at the University at Albany Department of Women’s Studies said that the culture has caused a split in advocacy groups between those focussed on awareness and education, like Komen, and others.

‘Komen is under investigation by the public. So far I don’t see the public being very forgiving. There is so much product placement, so many huge events,’ said Sulik. ‘It will be interesting to see what happens next.’

So then, on with our tale. Let’s see what might have happened next…

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.

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.

Rachel and Sarah

Rachel, June 2011

Ronnie here, standing in while Sarah’s away

Early this morning I took Sarah to Manchester Airport for her plane to New Jersey, to join everybody else there and say goodbye to Rachel. Going there, at the same time and the same terminal, reminded me of a happier day last June, when Sarah set off to go and stay with Rachel and Anthony for a week. Later in the year the two friends both mentioned this magical week, when they published these two parallel posts about each other and their friendship, on the same day, last October.

My Friend Sarah, by Rachel Cheetham Moro

“This year I have spent a lot of time in Liverpool. Yes! The Liverpool of Beatles fame in Northern England. I was surprised to learn that Liverpool’s climate actually rarely sees snow because it’s temperate maritime and the city is a recipient of warm bands of Gulfstream air. So this is why I’ve seen daffodils growing in Liverpool’s parks in February. Spring comes early in Liverpool.

On the deck of the allotment

I’ve meandered down Penny Lane in March and have been a regular visitor to a wonderful public space known as an “allotment”. It’s a kind of cooperative where the good citizens of Liverpool may rent garden plots to raise fruit and vegetables or whatever their inner gardener desires.I’ve clomped around in garden beds and dug for spring onions of all colors, fresh bulbs of garlic, and delicious little new potatoes. I’ve picked tomatoes and cucumbers and wondered aloud what to do with them all. I’ve even picked a pomegranate. A tropical fruit grown in Liverpool? Must be that Gulfstream air.I’ve strolled down flower and tree lined rows of allotments. I’ve shaded myself under an apple tree and I’ve marveled at the bounty of the most beautiful pear tree I’ve ever seen. I’ve sat on the deck of the allotment shed, sharing a picnic and catching the last few rays of summer sunshine and I feel like I never want to leave.

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.

Rachel

Sarah's post card painting of Plot 44. Posted to Rachel early this morning, before we knew.

Earlier today we learned that our friend and fellow blogger, Rachel, from The Cancer Culture Chronicles died this morning from the effects of metastatic breast cancer. We will have a great many words to say about our beloved friend. But not today. Today we are too sad to speak much.

The Journal of Wishful Thinking

The greatest scientific book ever written

Today we have a guest post co-authored by two very well respected writers from the scientific, evidence-based end of breast cancer research. Ronaldo Hugo, editor of ‘The Journal of Wishful Thinking’ is joined here by hard hitting social commentator, Dandelion, who you first met here with Rachel, on Cancer Culture Chronicles and have of course met with us in ‘The Alternative Orthodoxy’.

After a breast cancer diagnosis, an early casualty in many people’s decisions about ‘what to do next?’ is, of course The Truth. In the desperate search for ‘why me?’ and ‘what now?’ many will believe any piece of half-baked, poppycock drivel, served up by well-meaning friends as ‘reliable advice’. And that’s why we set up ‘The Journal of Wishful Thinking’ nearly 30 years ago now. To build up a solid body of scientifically based thinking on what can and has worked, out there in the real world, where our grateful readers, such as my co-author, Dandelion live.

In all the years of publishing ‘The Journal’ (as we affectionately call it) every single piece of information and advice published has been verified as ‘quite possible’ or even ‘fairly likely’ by at least two readers, who are not both in the same room when we ask them what they think. We called this unique method ‘double-blind testing’ and of course it has since been widely adopted as the ‘gold standard’ by the entire pharmaceutical community. Kudos to us there, I’m sure you’ll agree!

So, fast-forward to now and Being Sarah asks for this contribution to her blog. And at first, I don’t mind telling you, dear readers, I was surprised. I had heard of the blog, of course. Who hasn’t? But what I’d heard did not encourage me to want to contribute.

All I do and write and speak

30 October 2011, bee in the mahonia on the allotment.

OK, so the blogaday is done and now it’s November and my friends have joked that I can have a rest now. They probably didn’t realise, and nor did I, just how much of a rest I’d be getting as I just had a call from the hospital yesterday evening with an offer for surgery on Thursday morning, following a cancellation. Yes, this week. I mean in less than 48 hours.

But first, I want to thank everyone for the last month. Those of you who read and commented, who’ve thought differently, who’ve started conversations about the issues we raise here in the blog. It’s all starting to change the conversation. And I’d like to thank my guests who’ve added so much to the blog with their voices.

Thanks to Josh Lyman from The West Wing… no OK it was Ronnie really but kicking off with a new slogan. Pink’s not wrong. It’s just not right enough. Ronnie also wrote Being Ronnie 2, a follow up to his post about being a carer. Early in the month Steve Jobs dies, so Ronnie stepped in to write about him. And in a humorous mood he produces a top ten of Bored of cancer. Well, aren’t we all? And he wrote about us in the moving Let us be lovers post. But he also has taken on the role of guest editor with much gusto and I think you’ll all have got to know him better throughout this month and enjoy hearing his voice added to the conversation. He’ll no doubt be filling in while I’m lying around recovering from surgery,

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.