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

What is a friend?

knitting

Does knitting gloves for a friend define friendship?

Today’s post has been jointly written by me and my friend Rach, blogger at The Cancer Culture Chronicles, following a Skype where we talked about my ‘World without cancer‘ post.

One of the themes of the week has been one of deep reflecting about friendship. Rach was saying to me yesterday that some of her ‘friends’ have simply stopped asking her how she is, now she has metastatic breast cancer. Or they’ll send one line emails that say ‘How are you?’. Do they want the truthful reply that might take more than one line, or do they just want to hear that she’s ‘good’?  ‘Just read my blog’, she sometimes curtly replies. Others might just send meaningless, closed messages, like ‘Thinking of you.’ Messages encouraging no reply.

So, we’d like to ask our friends. Are you prepared to go down cancer’s rabbit hole? All the way?

Thinking about cancer, and death, has meant that I now view friends differently. Friendship, post cancer diagnosis, is deeper. Rach has similar feelings on friendships today. She simply doesn’t have the physical or emotional energy to manage friends who, through the passage of time and lives moving on, have really just become acquaintances. Her circle of friends is now much smaller, but she knows they are people she can rely on. And that’s never been more important.

And these reflections on friendship had prompted me to do a hefty Facebook clear-out of my friends, realising that many of them aren’t really my ‘friends’ after all, and I was telling Rach about this. In our usual snarky way me and Rach started joking about it. ‘Did I make the cut?’ Rach sarcastically asked, and then, ‘What’s the criteria Sarah?’

I said, ‘Well you know real friends you go to lunch with don’t you?’

‘Yes,’ said Rach, ‘so is the definition of a friend someone you would go to lunch with?’

‘Well,’ I said, ‘it’s probably more than that.’ And so began much snorting with laughter and sarcasm. And our list of criteria for ‘What is a friend?’ was born. 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

Open your eyes

breast cancer awareness

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. Continue reading

My friend Rach

Rach in New York City

Today, the 13th October 2011, is Metastatic Breast Cancer Awareness day. I started this week with a post about metastatic breast cancer – The ‘M’ word – which did get people talking about it.

And today I’ve written a piece about my friend Rach, in particular our very special friendship. She’s a fellow blogger, that’s how we met, but she’s become much more than that. I recently published a post by Rachel in which she talks about the reality of living with metastatic disease, The well trodden path. You’ll probably know her as Rachel from The Cancer Culture Chronicles, to me she is just Rach.

Rach’s writing has always touched me very deeply and I swing from laughter to tears as I read her lively and angry posts.

I mean who wouldn’t love writing like this:

I’ve been reading a lot of things lately that make me want to run into the street, take all my clothes off, scream like a banshee, and then poke my eyeballs out with hot needles.

And this:

I feel like someone has removed my brain, stomped on it and reinserted it into my head.

But humour aside, there’s a truth in her writing that shines out, a truth about the reality of metastatic breast cancer:

It all comes down to the fact, that I want something better for myself. There I said it. Selfish me. Wanting to live a long life as well. Wanting to live the dream of the victorious cancer survivor.

And yes, that’s Rach in the photo, right there in New York City. And she’s wearing my hat. Continue reading