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…

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 strong, silent type’

Tony Soprano getting 'in touch with his feelings'

Today’s post comes from my partner Ronnie, about his experiences with counselling.

So, it’s Episode 1 of heart-warming family drama ‘The Sopranos’. And Tony Soprano is distinctly and dangerously out of his comfort zone. He’s been suffering from anxiety attacks during his day job as a Murdering Sociopath, and so his doctor has sent him to see a therapist. And said therapist, Dr Jennifer Melfi, is encountering some resistance, from Tony, to therapy, ‘as a concept’, as you’ll see in this film;

Jennifer Melfi, listening hard

‘Let me tell you something. Nowadays, everybody’s got to go to shrinks and counsellors, and go on Sally Jessy Raphael and talk about their problems. Whatever happened to Gary Cooper? The strong, silent type? That was an American. He wasn’t in touch with his feelings. He just did what he had to do. See what they didn’t know was, once they got Gary Cooper ‘in touch with his feelings’, they wouldn’t be able to shut him up! And then it’s disfunction this and disfunction that…!’

Well, though my work and my life bear very little resemblance to Tony Soprano’s, I do resemble him in one way. I am a strong, silent type. And as I’ve said before on here, for the first three years of Sarah’s breast cancer and treatment, I stuck my head down and, like Gary Cooper, I did what I had to do. Well, here, I want to write a bit more about the damage that did me. And the good counselling is doing me. Because, if you’re still reading, whether you’re the person with the diagnosis or their carer, I think it might be good for you too.

Beginning with now. A few weeks back, Jo, my counsellor asked whether I wanted to stop now?

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.

‘Not ideal.’

I don’t usually write 7,000 word long blog posts. Some things, though, require a lot to be said. This is about the NHS. And me.

Thursday 3 November 2011. My day starts at 6.30am. My days rarely start that early, me not being a morning person. But really my day starts at midnight, the last time I’m allowed to eat or drink before surgery, so we ate late that evening and then I had a chocolate mousse and ended with a drink of water at midnight.

I don’t sleep particularly well. I’ve only had notice of this surgery two days ago. A cancellation, can I make it? Admissions ask me… to them it’s a simple admin procedure, to fill up a booked and staffed operating theatre on Thursday.

To me, it’s not quite that simple.

I generally try to write about patient experience – mine – using my point of view and my understanding of ‘the other side’. Today I’m just going to write about mine.

To me, having surgery in two days’ time is like cancelling my life from that point for several weeks – an unspecified time based on a recovery period estimated to be between two and four weeks.

To me it means that the longing for ‘normal’ and ‘ordinary’ that a cancer patient desires, will be interrupted. This is my fifth year post-diagnosis of breast cancer. Medically that’s good. I’m still alive, well, NED. (No Evidence of Disease, not cured). But it’s only this last summer that I have been able to describe my life as normal. Three years of intense treatment and six lots of surgery, culminating in DIEP breast reconstruction (ten hours in theatre, three months recovery, plus the added complication of an abdominal seroma), and revision six months later, both in 2009. And the following year, 2010, mostly in deep troughs of depression. Normal, apparently, say my medical team. A post trauma response.

This year, 2011, has been better, brighter. Finally I’m back to myself. I’m boxing, running, swimming, playing squash, learning the piano, enjoying new friendships (the better ones, the ones that lasted through cancer or the new post-cancer ones), I’ve spoken at a conference about patient information in the NHS,  I’ve been to New Jersey to visit my new blogging friend Rach, heck I’ve even been to Buckingham Palace in recognition of my advocacy work, speaking out as a patient, and my book was highly commended by the British Medical Association; so I’ve even been into the heart of the medical establishment where they describe my book – Being Sarah – as ‘intelligent and well-written’. Not a bad year all round. But mostly it’s normal and it’s an active life. I’m enjoying it.

But surgery wrenches me and Ronnie out of all that and into hospital, recovery, dressings clinic appointments

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.

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,

Being Sarah: Where next?

Today’s post sees the return of Fiona Shaw of - Wordscapes, publisher of ‘Being Sarah’. You last met her earlier this month, when she wrote ‘I just didn’t know’. And in fact, it was Fiona who gave me the idea of doing a blog each day during October. A mighty task which she is here, helping me to complete! Thanks Fiona.

Well, that’s my introduction. Fiona, being a ‘proper’ publisher and editor, has written her own! Here we go:

Being Sarah has taken on a life of its own – and certainly not one I imagined when I first met Sarah in February 2010. It has been 18 months of achievements and awards, campaigns and challenges. Work has blurred into life and clients into friends; questions have been asked – some answered – and perceptions, perspectives and priorities changed. Fiona Shaw takes a look back at what’s happened, and what happens next…

October 2011 – my second Breast Cancer Awareness Month, ‘working’. It has been a whirl of a year, packed with achievements; the book – my first Print on Demand book; a website; the launch; a social media campaign; awards and invitations too – to Buckingham Palace, to the BMA’s Book Awards; Sarah speaking at the European Parliament, across the country here, and being invited to speak at an event in the States.

Since the launch she’s been interviewed on Woman’s Hour and Radio 5 Live, by national papers including the Daily Mail and Telegraph; she’s made films and impassioned speeches in public. She’s made an impact, which goes far beyond just getting people to sit down and read a book.

I will always be tremendously proud of ‘Being Sarah’. If you haven’t yet, please read it

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.