The N word

November 2011, me in Sefton Park. No nipple protrusion visible.

On the morning of 18 May 2009, a Monday, I am sitting on the edge of my hospital bed, wearing a surgical gown. Mr Koshy, one of the three surgeons who is going to operate on me today, is explaining the procedure before he asks me to sign the consent form. And as this is a DIEP breast reconstruction, the explanation is pretty lengthy. In short it’s the transfer of skin and fat from your abdomen to your chest to create a new breast mound. In reality this takes at least ten hours in theatre and involves complicated connecting of arteries and vessels to make sure the fat stays alive, but also skill in creating a breast mound that matches the other breast. And while he is talking to me Mr Koshy also says, ‘And in time we would like to make you a nipple as well.’

Ah. Yes. A nipple. How great would that be I thought at the time. But it also felt like such a long way off. I mean first I have to get through this surgery, for it to be a success – DIEP surgery can fail completely or partially, all graft surgery carries that risk – and then recover, then I’ll need more surgery on my other breast to match up once the DIEP has settled, and then we could think about a nipple. It all seemed so far away, so remote. And it reminded me of the day I found out I had breast cancer, back in February 2007, when I was told I needed to have a mastectomy, and I said, ‘Can I keep my nipple?’

So my DIEP surgery was a success, a few complications but nothing major. The next surgery six months later was also a success and I was, nearly three years after diagnosis, in possession of two breasts. At least they felt like my breasts to me. The decision to have breast reconstruction was not something I decided lightly by any means, and I was happy with the result and keen to ‘get my life back’, which is where I thought I was at that point. For my reconstructed breast I had a silicone nipple, cast from my other nipple and carefully and skilfully colour-matched by the prosthetics technician, Gina. OK, I hated glueing it on 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

Green silence

This week I am reminded, again, that I am a breast cancer patient. The doctor’s appointment yesterday. His empathy and understanding. I can hear my words echo in his small office, I don’t really know where they came from. I don’t cry but I can hear a lot of emotion in my voice. His honesty when he tells me that other cancer patients express similar feelings after treatment, about anger and sadness and grief. And that they can last a long time, maybe a year, he says. 

I am drawn back to Audre Lorde’s words in The Cancer Journals. She wrote this book in 1980 after her breast cancer diagnosis and mastectomy. She writes so well about her pain, her loss, and her anger. She has been, and continues to be an enormous inspiration to me. 

‘I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us.’

I recognise myself in her words. My desire for change, change in how we view breast cancer, serious not trivial; how I want it to be a disease that we prevent.

‘It means for me, knowing that my work is part of a continuum of women’s work, of reclaiming this earth and our power, and knowing that this work did not begin with my birth nor will it end with my death. And it means that within this continuum, my life and my love and my work has particular power and meaning relative to others.
It means trout fishing on the Missisquoi River at dawn and tasting the green silence, and knowing that this beauty too is mine forever.’

I think I want to find myself doing more of whatever my own version of trout fishing is, and tasting green silence.