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…

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.

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’

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.

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.

I want more

Nearly October. Autumn is here.

I was looking back through my recent blog posts and thinking that it actually looks like I’ve been having a good time lately. And yes, I suppose I have. But I recognise that they are good times. There’s plenty of other times when I’m worrying or being annoyed about the admin of sorting out medical appointments – yes, still. But on the whole, mostly, this summer has been good for me. And I’m glad.

And now it’s autumn. The evenings are noticeably shorter and cooler now, the curtains drawn before 8pm. The leaves are turning. And soon it will be October.

Ah, October. Breast cancer awareness month. You’d think I’d like that wouldn’t you? What with wanting us to eradicate breast cancer forever. Well, yes awareness is good. But awareness of what? That there are so many pink charities and pink events out there that if you contribute to one of them then you’re helping us, people like me. That we’re nearly there – winning the war on breast cancer. Well, actually, we’re not.

Real?

Summer camping at Hill Holt Wood with Ronnie.

I’ve just been away on a short camping trip with Ronnie in a beautiful wood in Lincolnshire. We had one night alone and then spent the next two days with a group of people from Hackney Community Transport who we’ve been working with over the last seven months on their ‘social enterprise champions’ project. A fabulous experience. And it didn’t rain!

Back at home, and I’m going through my emails and there is one titled ‘Sad news about Jane Smith’. No, Jane Smith is not her real name, but she could be one of thousands of women like me, who’s being diagnosed with breast cancer in their early 40s.

I know immediately that she has died. Of secondary breast cancer. Of course, the email does not mention that, it says she had ‘a long illness’. We are spared the details. I feel so many mixed emotions. Including anger.