The shit filter

All in all I think I’ve done OK with this social media thing. I mean given that just over two years ago I didn’t know what Facebook was. Really. I emerged into 2010 from three years in ‘hosptial-land’ (thanks to breast cancer for that) and was plunged back into the ‘real’ world, and when I first heard the socially accepted end of conversation line, ‘Find me on Facebook.’ I said, ‘What’s Facebook?’

Well times move on and now I comfortably use Facebook, Twitter less so (and could somebody tell me what LinkedIn is for?), but I recognise that there are things about this social media stuff that means that I can stay in touch with people, find new friends who share my interests…. all good stuff. But it’s not all good. I mean, there’s just so much STUFF out there. How do you find the good or relevant stuff?

I recently read an article in The Word magazine (no I don’t read it but Ronnie does), and he’d told me about ‘frictionless sharing’. Mark Zukerberg, creator of Facebook, coined this phrase, and the concept is discussed in an article by Eamonn Forde:

“If everything we consume is being shared socially… does anything actually stand out? Sharing just becomes about quantity rather than quality.”

Exactly my feeling too. Continue reading

Oh Rach

The Skyping begins. Rachel interviewing Sarah for her Can Do Women blog, January 2011

Still Ronnie, standing in while Sarah is New Jersey.

Is it still too soon? I want to write Rachel something lovely. Something as good as anything I’ve ever written. (Something as beautiful as her friend Chemobabe’s eulogy, or as world-changingly essential as Gayle’s) She deserves at least that. But I can’t, yet. I need to take the fact and my feelings about her death to the park, to the cathedral, to the river – to my sacred places. I need to tell them about her. And my sense of loss. Until I’ve done that I won’t find the words, my words, for my friend Rachel.

So, for now, here is a very short poem. Continue reading

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

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

Good enough. For now.

The view while waiting; in the consultation room. 

It’s the time of year when the sun has started to noticeably slip lower in the sky. It shines through the leaves of the trees making alternate golden light and shadows in the car as I drive home from the allotment. The year is turning.

Today I have had my ‘routine’ check with my breast surgeon, Alison Waghorn. A mild anxiety has been with me for most of last week. The usual feeling, even though I have nothing to worry about. But we always have something to worry about; fear of recurrence, even if there are no symptoms. And I go to the hospital with Ronnie, it feels like I have been in this lift a million times. The same waiting room, the file that is mine that is heavy and full. We sit there, and then we sit in the consultation room and wait, reading the notice about the Barium Enema referral procedure for the thousandth time. This room where I have spent so much of my life, or so much of my life where I am in a heightened sense of awareness.

And when Alison Waghorn comes she says she is sorry to have kept me, and she flops down onto a chair and smiles at me. She is the same age as me. We’ve become friendly during the last four and half years. We talk about my book – she liked it, says she likes the honesty in it, that it’s helped her to see things ‘from the other side’. She’s bought copies for her mum to help her understand what she does, and also for her aunt who works in a hospital too. And we chat about my recent trip to Buckingham Palace (she was impressed), and look at the photos, and chat about our latest camping holiday in the Lake District. And then we get down to the medical bit. I will spare you the details of a full breast exam, of the discussions of my reconstruction, the exclamations about my rub-on nipple transfer, how realistic it looks. All is well. For now. Continue reading