It all comes back

November 2007, picking Sarah up from hospital after her oopherectomy

Today’s guest blog, from guest Editor, Ronnie, picks up on Barbara Ehrenreich’s classic article ‘Welcome to Cancerland’. This one’s about ‘Carerland.’ It’s right next door.

So, it’s Monday evening, this week. Sarah’s just gone out boxing and the phone goes. It’s the hospital, offering Sarah a cancellation slot for her next surgery, this Thursday. ‘Do you think she’ll take it?’ I’m asked. ‘Well, I think she’ll hit the roof, blame me for the short notice, stomp around the house for a few minutes, and then agree it’s probably best to get it done now,’ I tell her. And an hour or so later, this scenario plays out, more or less precisely. Sarah takes the appointment, and immediately begins her blog about it, published on Tuesday.

Tuesday morning for me, I’m out on what’s becoming my regular run. From our house, ten minutes down to Sefton Park, once round the park, twenty minutes or so, then back up to our house – bit more than ten minutes, mostly uphill. Monday morning I’d skipped round this. But Tuesday’s different. In the end, my times are pretty much the same. But there’s a heaviness in my legs and in my heart. Skipping it isn’t. And half way round I realise I’m running through previous preparations for surgery, previous waiting rooms. And it all comes back. Welcome to Carerland. 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

‘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

When I ran for charity

Speke Hall run, Bugruns

2 October 2011, start of Speke Hall run

Yesterday morning I ran a 10K. It took place in the grounds of Speke Hall in Liverpool, a nearly 500 year old manor house near the river. No charity fund raising, just me, running. For the sheer pleasure of being able to. It was a humid damp day, but it was fun to do this with friends, and go for breakfast afterwards. There’s a one minute film of the run here.

Runs are often done to raise money for charities by people who’ve been treated for cancer. Me included. Last year, one of the goals I’d set myself was to run a 10K, and raise money for charity. The charity I’d chosen was Yes to Life, who had helped me during my treatment for breast cancer, and I wanted to say ‘thank you’ to them, and raise money for them so they can continue to help other cancer patients.

In November 2009, I had my sixth surgery following my beast cancer diagnosis in February 2007. I’m pragmatic enough not to say it was my last surgery, or that have finished my treatment and surgery. I’m still on prescription drugs, I still have regular check ups with various doctors, I still have minor surgery to finish my breast reconstruction. But, as far as I know, for now, I have finished the major treatment, and the major surgeries. For now. Continue reading

Giving up on hope

Changing the conversation...

If you’re following blogs in the breast cancer world you’ll probably know that five of my fellow bloggers recently attended the National Breast Cancer Coalition (NBCC) advocacy conference in Washington DC, along with 700 women and men. Out there in cyber space I have friends, including these five women, who are writing about breast cancer culture, sharing their opinions and challenging the status quo. I am very grateful to them for that and for their support, because I am also very opinionated about breast cancer myself, and it can feel fairly isolating for me here in the UK. And I am extremely grateful that my friends have written about the conference and have shared what they’ve been finding out.

You can read some background to the conference from Gayle Sulik, author of Pink Ribbon Blues, who says:

“I believe it’s time for a change.”

The Accidental Amazon reported back from her hotel room telling us exactly why she is at the conference:

“I am here because all the pink product marketing and all the awareness groups and all the gazillions of dollars spent on research have scarcely nudged the real bottom line for breast cancer — namely, mortality and incidence.”

And she reminds us that we don’t have to accept the status quo:

“I am here not to behave myself. I am here because well-behaved women rarely make history”.

And, recently voted our favourite disruptive breast cancer blogger, Anna Rachnel at The Cancer Culture Chronicles, writes:

“Imagine if we acknowledged the truth about breast cancer and paid as much attention to the DEAD, as we do to celebrating the so-called achievements of the mainstream breast cancer movement at all those pink parties and pink events…”

Katie at Uneasy Pink has written several pieces about the conference, and in this piece reminds us how little we actually know about breast cancer:

“We should be scared. We should be angry too. All of the billions of dollars we’ve given in good faith and we still don’t know who is going to get metastatic breast cancer that accounts for 90% of all cancer-related deaths.”

The National Breast Cancer Coalition (NBCC) has boldly set a deadline to end breast cancer by 1 January 2020. Jody Schoger was initially skeptical about this deadline but has come back from the conference on a mission to ‘seek and destroy’ breast cancer. Continue reading