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.

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.

I just didn’t know…

Fiona Shaw at the BMA Medical Book Awards in September 2011

 “I was 34; I knew people who’d had breast cancer – some who’d died. Some who’d lived. I read about it – hell, I’d even done a Run for Life. Turns out I didn’t have a clue. Working on ‘Being Sarah’ changed my life.”

says Fiona Shaw, editor and publisher of ‘Being Sarah’.

“But the messages surrounding breast cancer are so complex and contradictory I just don’t know what to do about it…”

Today’s post is by Fiona Shaw who runs her own publishing company – Wordscapes. Since working together on the book Fiona’s become our friend and she often turns up in my posts, you know doing stuff like going to Buckingham Palace and swanky book awards in London. She’s a super-smart fun person, her zest for life is infectious and I love the time we spend together. She can also spell better than anyone I know. And yup, she’s even done a Race for Life!

This is Fiona’s post:

“And so October heralds Breast Cancer Awareness Month (BCAM), and – this year – a Being Sarah blog every day. Each and every one of which, I hope, will inform, challenge or add something to breast cancer awareness – in its widest sense. Because I can honestly say that, before I started work on Being Sarah, I didn’t have a clue about breast cancer, and the issues, debates and controversies surrounding it. They are, I guess, out there. If you’re looking. But they’re just not questions and debates that are covered by the mainstream media. If I now know just a fraction of the things I didn’t know before, then it’s down to Being Sarah.

Open your eyes

Yesterday evening I was a guest speaker at an event ‘Women at the Brink’ hosted by Jennifer Hartstone of the Shabby-Chic Clothes Agency. Jen organised this event to promote her business and also raise money for the UK charity Yes to Life who help cancer patients (and who helped me during my treatment), and she invited me to speak at the event. Thank you Jen for the opportunity.

I talked about ‘What do you really know about breast cancer?’ Based on my increasing knowledge of the subject, I wanted to raise ‘awareness’ of some truths about breast cancer that we don’t always get to hear. Although yes sometimes I am bored of the subject too, and wondered whether my specialist subject could be gardening or knitting instead. However I still enjoy talking about my opinions and changing people’s perceptions about breast cancer. For the event I produced a limited edition of a small book – The little book of BIG FACTS about breast cancer.

Wonderful though the internet is I’m not able to share the book in the delightful book format, including pink ‘ribbon’ closure detail – which can be ripped or slipped of depending on the feeling of the recipient –  however the text of the booklet is reproduced here:

Awareness?

You’re aware of breast cancer, right? You know someone who’s been treated. Your friend, your mother, your sister, your aunt, your daughter… too many women, and small though increasing numbers of men.

There are factors associated with increasing risk of breast cancer and certain factors that decrease the risk of breast cancer, but we do not know how to prevent breast cancer.

In the UK in 2008 nearly 48,000 women were diagnosed with breast cancer, and 12,000 died from the disease.

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.