My theatre company, Lost Watch, and I have made a show about biomedical misfortune, the BRCA1 gene mutation, and my family – without their permission. It’s called Goodstock and it opened last week at the Pleasance Courtyard as part of the Edinburgh festival fringe. Now my cover is officially blown.
I got tested for BRCA1 when I was 23. At the time, everyone I spoke to said the same thing: “You’re very young.” Now I’m 26 (really old) and I agree I was young but I don’t regret getting tested. We’d known about the BRCA1 gene in my family since the death of my dad’s sister Jane in 2001. She’d visited the doctor several times, worried about the lumps she had found in her breast and was turned away on numerous occasions: it was hormones, paranoia, depression. One doctor uttered the infamous line: “If you have breast cancer I’ll eat my hat.” She did have breast cancer. It was fast-growing and aggressive, it had spread into her lymph nodes and she died two years later. She was 40.
Subsequently, other women in my dad’s family began to make a fuss, and through this found they carry the BRCA1 mutation, as does my paternal grandmother, who has survived both breast and ovarian cancer (she’s made of steel, she watches four-day operas, my dad calls her “wizened” to her face). BRCA1 is a mutation of the BRCA gene that everyone has to fix broken cells. Women who have BRCA1 have a 40% lifetime risk of developing ovarian cancer and an 80% risk of developing breast cancer.
If you have a history of breast cancer in your family, a doctor will often refuse to give you most types of oral contraceptive because they contain oestrogen. Instead, I was given the mini pill Cerazette. Cerazette and I did not get on. For more than 12 months I badgered my doctor to let me have the “normal pill” like my friends until finally he sat me down, drew a family tree and crossed out everyone who had died due to breast or ovarian cancer. We sat looking at a piece of paper covered in crosses and he said: “If I give you the normal pill and later you discover you have inherited BRCA1, I’ll be struck off. That’s how serious this is.”
In some ways I got tested because I wanted to know if all this hassle was for a genuine reason. The doubt was worse. Once I found out for sure (after the initial crying which all happened in Wakefield hospital car park – very dramatic) I felt, not better, but calmer. OK, I’ve got BRCA1. There are ways to deal with it.
Being tested young does have its benefits. I’ve had the chance to get used to the idea of preventive surgery, it’s not a decision I have had to make quickly under pressure, it’s given my family and friends time to come to terms with it.
The cancer risk is terrifying, so to me, preventive surgery seems sensible. But having your breasts cut off by a clever surgeon you’ve met once or twice does sound drastic. It shocks people. One woman asked me incredulously why I would opt for “self-mutilation”, and I said nothing. I probably should have sworn at her.
The surgery itself is frightening. Google Images is not a friendly place and I don’t much fancy “instant menopause” at 35. Equally, I don’t want to die.
I’ve made the decision to have the mastectomy sooner rather than later as my looming 30th birthday was becoming a bit of a timebomb. Every birthday I’d think, I’ve only got five years, four years, three years until they cut me up and I’m a freak. Until one morning I heard Claira Hermet on BBC Radio 1 talk about how she had had her preventive surgery at 28 and I thought, why have I made this stupid deadline? It’s a lifeline and two years won’t make a difference. I’m still going to have fake boobs for longer than I’ve had real ones so just get on with it.
I had no idea how vain I was. I’m not one for push-up bras but the horrible thought of “who will want me now” crosses my mind on odd occasion. I’ve been on a few dates and am yet to find a good way of explaining BRCA1 to a prospective partner. It’s just not first date conversation – “What do you do? Do you have brothers and sisters? By the way I am cutting my boobs off in the next three years.”
When we were creating the show Goodstock, the company and I chatted a lot about why we were doing it and who we were making it for. It is a show about an “issue” and it’s a topic that people may think of as “worthy” – words that are said with a slight sneer. But we decided we were going to make it anyway.
I think we have made a funny, honest and uplifting show about cancer and genetics. We are also fundraising for the charity Breast Cancer Now and giving people the option to buy a seat costing £615 – the cost to the NHS to test for BRCA1 and provide counselling (if you have this amount going spare, do feel free). Ultimately, we made Goodstock to start a conversation, and I don’t think anyone in my family will mind that.
• Goodstock is at the Pleasance Courtyard, Edinburgh, until 31 August, then transferring to the New Diorama and Greenwich theatres, London
