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…

It all comes back

November 2007, picking Sarah up from hospital after her oopherectomy

Today’s guest blog, from guest Editor, Ronnie, picks up on Barbara Ehrenreich’s classic article ‘Welcome to Cancerland’. This one’s about ‘Carerland.’ It’s right next door.

So, it’s Monday evening, this week. Sarah’s just gone out boxing and the phone goes. It’s the hospital, offering Sarah a cancellation slot for her next surgery, this Thursday. ‘Do you think she’ll take it?’ I’m asked. ‘Well, I think she’ll hit the roof, blame me for the short notice, stomp around the house for a few minutes, and then agree it’s probably best to get it done now,’ I tell her. And an hour or so later, this scenario plays out, more or less precisely. Sarah takes the appointment, and immediately begins her blog about it, published on Tuesday.

Tuesday morning for me, I’m out on what’s becoming my regular run. From our house, ten minutes down to Sefton Park, once round the park, twenty minutes or so, then back up to our house – bit more than ten minutes, mostly uphill. Monday morning I’d skipped round this. But Tuesday’s different. In the end, my times are pretty much the same. But there’s a heaviness in my legs and in my heart. Skipping it isn’t. And half way round I realise I’m running through previous preparations for surgery, previous waiting rooms. And it all comes back. Welcome to Carerland.

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.

A Universal Declaration of Human Might

At Home on the Earth, Gemma Jerome

Today’s post is written by a relatively new friend, Gemma Jerome. Gemma is an environmentalist, an academic, a social entrepreneur, a gardener, a walker in the hills, a bicycle repairer and so much more. I gave Gemma the vaguest of briefs, to write me ‘something around the environment and breast cancer prevention’. And what I got was this magnificent polemic. We said we’d be getting more political this week. Because people are reading these blogs, and following the links to the information and science, and asking ‘What can we do?’ Well read this. Then let’s decide where we take it next. 

“Here I am in the Yorkshire Dales, heading in to Malham Cove. Through this great tumble of debris of a bygone age, we felt like intrepid explorers setting out on a journey of discovery. Our feet, nimble on the paths of our towns and cities, now stumbled on the rocks unpredictably placed beneath us. I had an overwhelming feeling of how small I was in this landscape, and above all, how beautiful things are when you just let them be.

The landscapes within me: As director of my own social enterprise, At Home on the Earth, I have had the pleasure of working with Sarah and Ronnie. Thanks to  their unique approach to values-led business planning, I was able to locate my business ethically and emotionally. In this way Sarah and Ronnie stood with me at the top of the hill and side by side we read the moral compass. Through reflection we are able to set off in a new direction, or even the same direction but with a renewed sense of purpose. This is what they mean by ‘a sense of place’.

I now know I am emotionally driven by the possibilities of how we could live differently

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’

Remembering Iris

Iris Berg

Today’s post is written by a friend of ours, Hilary Berg. Hilary’s mother died of breast cancer on 22 October 1994, 17 years ago today. I first met Hilary after she’d read Being Sarah, and she was completely bowled over by it and I delighted in her praise. She went on to tell me some of her mother’s story and I could see it was incredibly painful for her. So when I asked her to write for my blog I wasn’t sure if she would want to. But I’m really glad she has and this is a very moving and emotional piece. I cried when I read this. And I don’t mean my eyes filled with tears, I mean my face was streaming with hot, burning tears of anger as I read about the shoddy medical treatment Iris received, and another life ‘cancelled by breast cancer.’

Hilary Berg, daughter of Iris

I have to admit that when I was diagnosed in 2007, one of my initial reactions was feeling worried about the level of care I might be about to receive on the NHS. All my previous encounters for minor medical conditions were really mostly very average and consistently patronising. However, my care from 2007 onwards was excellent, not always, but the majority of my medical care has been given with dignity and respect for the patient; and I do know that it has not always been the case in the NHS. But I now know that in the late 1990s health advocates caused a shift in how the NHS treated patients, and the ‘patient experience’ has become core to how the NHS deliver their services. Not always perfect I know, but certainly improved from the time that Iris received her treatment. 

In my head I carry the names of women who have died from breast cancer, and sometimes I recite them and I remember why I do all this. Why I still write, why I still get angry, why I still talk about breast cancer. Because I want things to change. That’s why. 

So, get a tissue ready, and please read this beautiful tribute to a wonderful woman. Iris. Thank you Hilary.

“Seventeen years ago today I found myself holding a worn pair of spectacles in my hand, with smudged fingerprints and flecks of compost on the lenses. I found them on the table in the greenhouse just after the funeral director’s men had left, taking our mum, Iris with them.

And there I was, silently holding on to her gardening glasses – cocooned in the warmth of the greenhouse – surrounded by her trays and pots,  balls of string, gardening gloves, scribbled lists on scraps of paper.  Completely unable to grasp the fact that this full, warm, joyful life had, quite suddenly, been cancelled by breast cancer.

The greenhouse was always one of her favourite places.

Two weeks in: broadening the conversation

Some weeks, chocolate becomes a necessity

Guest editor Ronnie here for the weekly round up during October.

“Another Sunday, and now we’re two weeks into our self-imposed task of publishing a blog-a-day on here. The week began with ‘The ‘M’ word’. This turned out to be one of Sarah’s most popular posts. Metastatic breast cancer has been our main theme this week, and when Sarah was writing this post I said to her, ‘I think for some people that post won’t be about information and opinions. It’ll be news.’ And so it turned out. Being posted on as ‘new terminology’ by ‘Mid-Week Balance’. It also marked the first appearance this week of Sarah’s great friend Rachel, of ‘Cancer Culture Chronicles’, saying ‘there are times many of us feel as though we’re barely surviving’. From here on in, it was really Rach’s week.

‘Death. Life’s change agent.’

February 2002, Ronnie switches on our latest 'new' computer

Today’s post is not the one I’d scheduled. Yesterday the world woke to the news that Steve Jobs had died. Last night we got out our photo albums and looked back at the memories of computers we’d owned. Apple computers that have changed our lives and enabled us to create the life we have, and the work we do. We’re just getting ready to go out walking today, checking the tides on my iPhone, grateful that we’re alive to be living in such a technological miracle. So today’s post is a guest post, written this morning by my partner Ronnie Hughes. 

“I know a lot of people are bored, not to say, pissed off with breast cancer. Even this early in October, it can feel like there are no other cancers out there to be concerned and angry about. Somebody said, and it might have been me, ‘Nobody’s putting on pink t-shirts and running round the park for bowel cancer are they?’ It’s like the pink industry hoovers up all the charity, leaving no room for anyone else.

June 2010, Steve Jobs

Well now, one of the most famous men in the world, Steve Jobs, has died of an unfashionable cancer, pancreatic cancer. And suddenly, it seems, October has become ‘Life and Death’ month. And all the media channels are alive with the kind of talk that we, in the post-diagnosis world, take for normal.

Anger, at a life being taken too early, and loss, for what else he may have done. But also people are writing and talking about the things he said. About death, the valuing of every day and the importance of doing what you love. Particularly in his Stanford speech in June 2005. And it’s in this speech, more than anything else he ever said, that we get a view of Steve Jobs that those of us in ‘cancerland’ can clearly recognise.

‘The enormity of our task.’

I’ve recently finished reading The Cancer Journals by Audre Lorde for the sixth or seventh time. It’s such a deep and inspiring read. Every time I read it I find I am touched again on many levels by Audre Lorde’s insightful and skilfully expressed emotions – anger, loss, fear – they jump off the page.

I bought this book over four years ago newly diagnosed with breast cancer having recently had a mastectomy in March 2007. At that time I hung around in the cancer sections of bookshops looking for, well, looking for what? I’m not sure  – answers maybe to all the ‘whys?’ I had:

Why me? Why so young? Why so little choice? Why do I feel so alone?

And did Audre Lorde answer my questions? I think, actually, now looking back through the years which I see now as layers, I see there are shards of answers to all the ‘big’ important connections I’ve started to piece together, and they have all started from seeds in this book:

• the links between the causes of breast cancer and the environment;
• the sense of a ‘bigger’ industry, Cancer Inc.;
• and particularly about how women are encouraged to treat breast cancer so, ‘nobody will know the difference’.

Audre Lorde writes The Cancer Journals in 1980. That’s 30 years ago. 30 years. Wow – that’s a long time. For so little change.

When I ran for charity

2 October 2011, start of Speke Hall run

Yesterday morning I ran a 10K. It took place in the grounds of Speke Hall in Liverpool, a nearly 500 year old manor house near the river. No charity fund raising, just me, running. For the sheer pleasure of being able to. It was a humid damp day, but it was fun to do this with friends, and go for breakfast afterwards. There’s a one minute film of the run here.

Runs are often done to raise money for charities by people who’ve been treated for cancer. Me included. Last year, one of the goals I’d set myself was to run a 10K, and raise money for charity. The charity I’d chosen was Yes to Life, who had helped me during my treatment for breast cancer, and I wanted to say ‘thank you’ to them, and raise money for them so they can continue to help other cancer patients.

In November 2009, I had my sixth surgery following my beast cancer diagnosis in February 2007. I’m pragmatic enough not to say it was my last surgery, or that have finished my treatment and surgery. I’m still on prescription drugs, I still have regular check ups with various doctors, I still have minor surgery to finish my breast reconstruction. But, as far as I know, for now, I have finished the major treatment, and the major surgeries. For now.