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. Continue reading

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. Continue reading

I just didn’t know…

Fiona Shaw

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. Continue reading

The story of Being Sarah

Today it’s exactly one year since we launched my book. You can see a 90 second film of me reading from the book here:

One of the questions people often ask me is, ‘How did you write a book?’ Well, it takes a long time and a lot of editing… and for me a lot of anger and determination. I wanted my words to be heard. So I thought my readers might be interested in the story of how my book came into being. And, fortunately for me, my good friend Rach over at the Can-Do Women blog has already written this, so I’m going to let her tell the story of Being Sarah. Many of you will also know Rach as the snarky and opinionated voice of The Cancer Culture Chronicles.

We did this interview on a Skype conversation in January 2011, the first of many hours of talking together which has led to a deep friendship, despite the 3,500 miles that separate us. You will hear more from Rach during the following month.

Thanks Rach for this and all our conversations. 

“Today I’d like to introduce you to Sarah Horton, author, artist, entrepreneur, blogger, filmmaker, activist and an all-round highly accomplished and creative Can-Do Woman. I had the pleasure of meeting Sarah through my other blog, The Cancer Culture Chronicles, an insider’s view of living with breast cancer in today’s society. I found Sarah’s story to be so incredibly inspiring, and I am delighted to be able to spotlight her achievements here today on the Can-Do Women blog. Here is a part of Sarah’s story.

Being Sarah

22 February 2007, day after diagnosis.

In February 2007, at the age of 43, Sarah was diagnosed with breast cancer. To hear those words uttered is a moment so terrifying and raw, that one barely has time to think, let alone be able to string a sentence together in any cohesive manner. Yet, that’s exactly what Sarah did.  Despite being paralyzed with fear (or perhaps “despite” should be read as “instead of”), Sarah began to write in earnest.  On the day after her diagnosis she took a leather-bound journal, had her husband Ronnie take a picture of her at their kitchen table, and  began compiling her thoughts, lists of questions for the doctors, research for treatment decisions; anything that seemed relevant to the horrifying road on which she was about to embark. Continue reading

‘The enormity of our task.’

Audre Lorde

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. Continue reading