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…

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?

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.

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.

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 N word

November 2011, me in Sefton Park. No nipple protrusion visible.

On the morning of 18 May 2009, a Monday, I am sitting on the edge of my hospital bed, wearing a surgical gown. Mr Koshy, one of the three surgeons who is going to operate on me today, is explaining the procedure before he asks me to sign the consent form. And as this is a DIEP breast reconstruction, the explanation is pretty lengthy. In short it’s the transfer of skin and fat from your abdomen to your chest to create a new breast mound. In reality this takes at least ten hours in theatre and involves complicated connecting of arteries and vessels to make sure the fat stays alive, but also skill in creating a breast mound that matches the other breast. And while he is talking to me Mr Koshy also says, ‘And in time we would like to make you a nipple as well.’

Ah. Yes. A nipple. How great would that be I thought at the time. But it also felt like such a long way off. I mean first I have to get through this surgery, for it to be a success – DIEP surgery can fail completely or partially, all graft surgery carries that risk – and then recover, then I’ll need more surgery on my other breast to match up once the DIEP has settled, and then we could think about a nipple. It all seemed so far away, so remote. And it reminded me of the day I found out I had breast cancer, back in February 2007, when I was told I needed to have a mastectomy, and I said, ‘Can I keep my nipple?’

So my DIEP surgery was a success, a few complications but nothing major. The next surgery six months later was also a success and I was, nearly three years after diagnosis, in possession of two breasts. At least they felt like my breasts to me. The decision to have breast reconstruction was not something I decided lightly by any means, and I was happy with the result and keen to ‘get my life back’, which is where I thought I was at that point. For my reconstructed breast I had a silicone nipple, cast from my other nipple and carefully and skilfully colour-matched by the prosthetics technician, Gina. OK, I hated glueing it on

1,736 days

Dream images of Venice kindly supplied by the internet.

OK dear readers, please don’t be alarmed but I am about to write about my dreams, those stories that play out consciously and unconsciously during the night. Because I know that ‘Dream Interpretation’ sounds like something from ‘The Journal of Wishful Thinking’ – but this isn’t like that.

This last week I’ve been to Venice every night. A recurring dream, which is almost the same every night. I am in a mansion, a huge place, in Venice which has an enormous garden that falls away to a canal and a vista across the city. Do they have sloping gardens in Venice? I’ve no idea, I’ve never been there. Anyhow, I’m with a group of people, not people I know, at least not people from my ‘real’ life. And when it’s meal time, I’m doing the cooking. And I have to make a meal for about 20 people, and I have one tin of tomatoes and a loaf of bread. It seems a stretch. Another night we actually go to a shop, a sort of supermarket, where there are lots of tins of tomatoes, but I am on my own and I have no bags and I can’t carry more than two tins. Sigh.

I happen to mention the dream to Ronnie, who says he’s been having a recurring dream too. In his, he is walking up a hill and every time he gets to the top he has to go back down to the bottom to get something he has forgotten. Like a cage with three hamsters. Bizarre.

But they are both difficult situations. We are both alone. We’re in some other place. Like the place we’re in now, called ‘hospital-land’.

Bruised

My least favourite version of a hospital gown. Printed with the words 'hospital use only' - that's funny because I thought it would look good as a party dress.

Having been so open about my recent surgery for nipple reconstruction I feel it’s only fair to update you on how it’s all turned out. OK so the administration of my hospital experience was ‘not ideal’ and I’ve written plenty about that (please note just over 7,000 words, and all of them, together with Ronnie’s accompanying blog, sent hard-copy to the hospital – more about their response will follow in another blog post). But surgically this was very straightforward and has gone well. I also have the most wonderful kind and gentle and skilled plastic surgeon – Ken Graham – who I trust completely. And I know he will always do his best for me.

So for ten days after surgery I have a blue foam block covering my new nipple and dressings on the other breast where I’ve had some revision for symmetry. And a four-inch suture line on the inside of my upper thigh which is frankly, very uncomfortable. That was the donor site for the skin which was used to create an areola (which will mean I don’t need any tattoo-ing if the colour works out well). And I don’t mind telling you that having three surgical sites in particularly senstive areas do in fact hurt, I feel delicate and bruised. The effort of bending over to paint my toe nails, the tenderness, the way I am frightened that I will knock myself and hurt. Impossible to sleep on my side, too uncomfortable because of the stitches on both sides. All those things that are familiar post-surgery.

And all this healing time is frankly boring. I don’t get out much, I can’t do anything very active. I sleep long and nap often. I have some visitors who bring me chocolate and cake and we chat. I’ve been to the cinema and also went out for delicious pizza with my friend Karen, but post-surgery is a time for rest and healing.

So as I anxiously look at myself I get to see bits of stitches, dried blood and bruising. That’s what surgery looks like while it’s healing.