What comes next?

Last night we celebrated Samhain on Plot 44. A place where I garden, and where I share the cycles of nature that I find so calming and necessary to have in my life. And no, it has nothing to do with breast cancer, well other than being a place of solace for me.

30 October 2012, candles in the dark at Plot 44. Samhain.

And I need a place of solace, I mean I think we all do, I need somewhere to go to find peace, to turn off the outside noise and distractions. Even though I do have a two excellent tools – a very finely tuned shit filter (yes, you read that right, everyone should invest in one, and they’re free); I also have a well-oiled quack-o-meter (yes, I prefer informed discussion) – despite both of these essential tools, I still find there’s too much noise in my life at times.

Nearly six years now since I was diagnosed with breast cancer. But despite the circumstances that propelled me into the breast cancer community, I’ve found some extremely supportive and valued breast cancer friends:

“But I am not turning away from that community, no. I’m still here, but just so tired, so worn out – by the years of being a breast cancer patient, and now after months of working on Rachel’s book reminding me sharply and keenly, and reminding all of us too, that we simply haven’t got the right tools at our disposal to stop women from dying of breast cancer.”

And this year has been a very difficult year for me. To lose Rachel so suddenly, my dear friend. The grief has been enormous.To be immersed in her words and work on her book has meant I’ve had little time for much blogging of my own, or reading other people’s blogs.  And over and over I hear the same arguments and questions about the mainstream breast cancer culture. The pink-washing, the lack of research, the lack of awareness of metastatic breast cancer. I don’t want to keep repeating myself. 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

The alternative orthodoxy?

new normal

During the summer I was invited to take part in an event, a workshop… I’m not really quite sure what to call it. It’s described as a day to explore how a group of people can support each other as we walk the same path together. How are we connected? Well, we’ve all shared some sort of spiritual crisis that has caused us to look for support, and that’s what we have in common.

I was invited some months ago and I felt that given how isolating and lonely my ‘journey’ has been that this was something I wanted to explore. As I drive to the destination for the day I reflect on the years that have led to this. This ‘path’, although I hesitate to use words like journey and path, the analogy for something that might imply I had some choice in taking this ‘diversion’. The day after diagnosis back in February 2007 I’d fallen into a nightmare.

“I found out that a number of people refer to breast cancer as a journey. Well, yesterday certainly didn’t feel like that, it felt like a nightmare, but the sort of nightmare that would end eventually and I would emerge blinking and things would be ‘normal’ again. But I don’t think there will be normal again.”

I think, back then, that I will rejoin the main road, that this is a diversion… and I suppose I almost do, at times now, have a sense of being back on the main road. The essence of life I wrote about earlier in the summer as I finally – after four years – have a summer – greedy, wanting to ‘snatch’ it, keep it, knowing that it may be temporary. But to enjoy it. Now.

The evening before the event I talk to Ronnie and I wonder if I really want to go. I mean do I want to continue to go  to things that I would only have the opportunity to do because of breast cancer? Or do I want to leave it behind? Continue reading

The ‘M’ word

breast cancer survivor

The triumphal image of breast cancer survivorship - not metastatic cancer

Breast cancer culture has become symbolised by images of women wearing pink who are celebrating their survivorship. Well, I don’t mind anyone celebrating something, I don’t even mind wearing pink. But this image, that is so strong, gives the impression that breast cancer is curable, that there is an end to it, that you can joyfully be who you were before. And some women can. Some women can’t. Lives are so changed by cancer, by treatments, by surgery, by multiple surgeries, by depression, by loss, by fertility issues… and on and on the list goes. And because of the fickle nature of breast cancer there is always the possibility of recurrence. Always.

This coming Thursday, the 13th of October, it’s Metastatic Breast Cancer Awareness day. Metastatic breast cancer is cancer that has spread from the original site of the breast. It is currently incurable. It is also referred to as Stage IV breast cancer. There is no Stage V. Continue reading