TirzahGarwood1950

Like several of my friends, I was excited to discover the work of Eric Ravilious earlier this year at Dulwich Picture Gallery. His paintings were so powerful and clear that the exhibition reminded me not to dismiss watercolour as a medium. But I came away from seeing this show with more than just a new interest in Ravilious, who died young during the Second World War – he volunteered to be part of an ill-fated sea rescue mission in the waters off Iceland. I also came away with a curiosity about his wife. She died young, too, and her death is more of a mystery.
I walked out of Dulwich Picture Gallery and back into the summer sun wondering if Tirzah Garwood – like me, like my sister and cousins and aunts and grandmother, like Angelina Jolie – had been a carrier of one of the BRCA gene mutations that predispose a tiny proportion of women worldwide to develop breast cancer at an unusually young age. As I have discussed previously, I’ve been lucky so far and have yet to have a cancer diagnosis. I may even be lucky and dodge that bullet for a decade more – or possibly my whole life.
But Tirzah Garwood wasn’t so lucky. An artist and engraver, Eileen Lucy ‘Tirzah’ Garwood married one of her art school teachers, Eric Ravilious, when she was 22. They quickly had three children and somehow during this busy time she also managed to produce a small amount of work. I wish I could thank the curator(s) of the Eric Ravilious exhibition for being specific about the health problem that Tirzah was diagnosed with in 1941, when she was just 33 years old. It was breast cancer. So many exhibitions and even newspaper obituaries are coy about the ailments that beset and kill people. I always want to know!
It would seem that Tirzah had an ’emergency’ mastectomy. Her husband died the following year and in 1946 she remarried. But the cancer came back and she died in 1951, aged 43.  Maybe Tirzah’s biography struck a chord with me because I’m roughly the same age as Tirzah was when she died and I feel like I have so much left to do and learn. The picture above was taken in 1951, by Edwin Smith.
There is no way for someone like me, with just basic biographical information of this type, to know whether Tirzah Garwood did or did not harbour – unknowingly – a genetic mutation of the type that runs in my family. But the facts suggest that she’s very likely to have had some type of genetic vulnerability to breast cancer – the early onset and recurrence could have been a sporadic case (ie. one-off bad luck) but chances are against it.
Thinking of Tirzah – and feeling sad for her and her children – I was reminded of a conversation I had almost two years ago with a friend, Mark Daly, who is a genealogist. Mark and I met one evening to discuss my family history and my interest in investigating the lives – and the deaths – of the women on the side of my family that carries our BRCA1 mutation. Mark surprised me by providing new information about one of my great, great aunts. I knew a bit about her  – she had been a bit flash, a rule-breaker, and wore the latest frocks. That evening I also learned that my favourite great, great aunt died earlier than I’d been old and that she had had what sounded like a painful death. The death certificate described something that could have been the advanced stages of ovarian cancer – another cancer that BRCA1 carriers often develop.
I will never know exactly what killed my great, great aunt, just like it may never be possible to know if Tirzah Garwood’s early death was linked to a BRCA mutation. But I’m beginning to think that health-focused genealogy coud be an illuminating pursuit for those of us affected by genetic-related health risks. Perhaps I will get up the nerve to ask my friend Mark to finally begin what we talked about almost two years ago – tracing my family’s past to see if the impact of BRCA1 is there to ‘see’.

A lot of people are profoundly frustrated by the limitations of modern medicine, let down by how powerless conventional medicine can be to ‘cure’ so many of the ailments that afflict us. I agree, and yet my experience has also made me feel increasingly in awe of the skillful care I receive – in some cases from people I will never meet. These are people who know nothing about me as the quirky individual that I am and who, nevertheless, do all they can to help keep me healthy. The world is full of ‘haters’, but it’s also full of good people who use their scrupulous professionalism to care for complete strangers.

I was reminded of a particular group of strangers who take care of me ‘from a distance’ a couple of weeks ago when I sat down to read a two-page laboratory report produced following a recent operation of mine. I had had both of my apparently-healthy Fallopian tubes removed in order to reduce my risk of developing ovarian cancer – this was the lab report detailing whether the material removed really was healthy. Though I had been told by my GP the results were fine I wanted to see for myself that I really could relax – that I wasn’t one of the small number of women whose tubes look fine to the surgeon who does the op, but upon specialist examination in the lab show signs that they harbour an early cancer or a pre-cancerous condition.

Like Angelina Jolie, I am a BRCA1 mutation carrier, so I was at unusually high risk of ovarian cancer – possibly even more likely to develop it than not to. All of the women on one side of my family in the two generations above me – yes, 100% – had early cancer diagnoses, with all but one of these women dying young. More specifically, my grandmother died of ovarian cancer. This is what had pushed me toward what they call ‘risk-reducing surgery’. I knew I was living with a very high risk. But I’d been putting off the officially-recommended operation that is known to reduce risk significantly. This involves removal of ovaries and Fallopian tubes, leading to ‘surgical menopause’. I was delaying the op because abrupt and early menopause can brings its own health risks. I had already undergone two operations to reduce my breast cancer risk.

After a couple of years of reading summaries of medical studies in the evenings after work and of living with the anxiety that naturally comes with not knowing if a few days of feeling a bit unwell every once in a while might be an early sign of cancer, I decided to have an op. But a different one. This is the removal of Fallopian tubes only, which are increasingly thought to be the source of many of the most aggressive so-called ovarian cancers. More and more often, the medical literature refers to ovarian and tubal cancers. By removing my Fallopian tubes I have reduced my cancer risk significantly and avoided menopause…for now. I’ll remove my ovaries in about 5 years, when I’m closer to natural menopause. Hopefully, that will make for an ‘easier ride’.

But back to that lab report. It wasn’t lengthy, but one thing was immediately clear. The people in the lab who had received my tissue for analysis understood the significance of it and they knew that the results of their work could have a big impact on my life. They had known what to do – there on the first page was confirmation. The words: “BRCA1 protocol”. I felt like saying ‘thank you’ right there and then. Thank you for doing the right tests. I had been warned that some BRCA carriers’ tissue has slipped through the net, and not been subject to these specialist tests.

As I read on, slowly deciphering the report’s careful, technical descriptions of my tissue followed by the results of the slicing, dicing and staining techniques they had employed, I felt such appreciation for these strangers’ care. They knew they were looking for tiny but crucial signs of something having gone wrong. Did they find any? The short and simple answer is ‘Probably not’. Hurrah! I took action early enough. No mini-cancer detected. I’m safe…for now. The longer answer – spelled out in a paragraph of the report entitled ‘microscopic results’ – is that maybe there was something (or several somethings) that might be a sign that something was going to go wrong in future. But current medical knowledge of this area of female-anatomy-meets-cancer is remarkably limited and we just don’t know.

At the end of the report there’s a line stating that my case was reviewed by two other doctors. Quality control. I hope that all the people involved – and all staff in histopathology labs across the UK (and, hey, everywhere!) – know that what they do matters. They find the signs (confirm their absence) that tell complete strangers that there is something wrong, that help is needed, that something should be done. In my view, these are good people whose jobs are inherently valuable and meaningful. I thought a lot about people who work in histopathology labs in the days after I read that report, and about the kindness of strangers.

Earlier this week I had an operation, so just now I’m feeling fab. Physically I have a bit of pain and what the medical world terms ‘discomfort’, but emotionally I’m mainly happy. Happy that it went well, that it’s over, that the surgeon and his crew said that everything they saw inside me (and the couple of bits they removed) looked in good shape.

Relief!

It’s the weeks and days before an operation that I find hardest. This is when I repeatedly run through my decision-making – have I been thinking things through clearly? Does it really make sense for me to have a bilateral salpingectomy (fallopian tube removal) now and to delay the oopherectomy (ovary removal) until I’m in my late 40s? I look again at the mortality/ survival statistics for BRCA1 women. Here’s what they tell me : without preventative surgery BRCA1 women have an up to 60% chance of developing ovarian cancer by 70 years, with diagnoses beginning to ramp up when women are in their 40s. I am 43.

These stats chime quite well with my family history, which includes at least one ovarian cancer death (possibly as many as three). The known ovarian cancer death was my grandmother’s, Barbara. She probably developed the cancer in her early 50s, but that’s just a guess. Then, there are my paternal aunts who would likely have developed ovarian cancer if breast cancer hadn’t got them first.

It was clear I should do something, but the official advice to remove my ovaries and fallopian tubes – and, in so doing, embrace surgical menopause – didn’t seem right. I couldn’t bring myself to do it. Maybe I’ve read too many quality of life studies in which women who undergo surgical menopause report significant problems. Perhaps I’ve been conned into believing that functioning ovaries really are the secret to female youth and happiness.

Whatever the truth is, I finally forced myself to stop procrastinating and chose a third way. Instead of doing nothing, I submitted to an operation that everyone agrees has reduced my risk of developing ovarian cancer by a significant but unquantifiable degree. When I’m closer to 50, I’ll go under once again to remove my ovaries and cut my risk even further.

Will this work? I don’t know. Neither do the doctors. It’s a gamble. If I develop ovarian cancer within the next few years I’ll have lost the bet. But I think the odds are in my favour. (I’m one of those people who never gambles on the horses or football, but I will gamble on what truly matters, like my life.)

So this week I exchanged my fallopian tubes for a greater chance of a long life. I want to be clear: I did not want to have to do this. I wanted to keep my fallopian tubes. But I understand that I have to give up parts of my body in exchange for the chance to live beyond 65/66. Very few women on the side of my family affected by BRCA1 mutations in the two generations above me have made it beyond 65/66. In fact, only one made it beyond that age – and she did so after having survived two different cancer diagnoses. Clearly, she is tough as nails. And my role model.

Almost two years ago I began by giving up my breasts (and a muscle from each of my inner thighs to make new ones). Now my fallopian tubes. A few years from now it’ll be my ovaries. The way I see it, gradually, I’m giving up all the removeable high-risk tissue. It is hard to do this. On the one hand I am so, so happy the operation went well, but that doesn’t mean that I didn’t lie in bed the first night after this latest operation and cry.

Is it a fair exchange? Body parts for a full lifespan? I think it is. That’s why I do it.

Every once in a while I play a little game with myself. I write the following words: “This time 1 year ago” and I remember what I was doing then, how I was feeling, what has changed since that time. Then I go back another year. And another. I played the game this morning and went back 6 years, to the beginning of what has proved to be the wildest and longest period of transformation and self-discovery in my life to date. This was when my partner and I parted ways, after 12 years together.

When I reviewed the ‘big’ stuff that has happened since then three thoughts rose in my mind:

First, I feel more myself and more contented than six years ago. Perhaps I’m deluded, but I feel as though I have a richer inner world than I did 6 years ago, largely because of all the emotional turmoil, romantic experimentation and self examination I’ve undergone. Angst has brought many rewards, and the biggest has simply been self-knowledge.

Or maybe my greater contentedness is down to being older? According to Anne Karpf’s book How to Age, many people report greater happiness as they get older, regardless of material and personal circumstances. That is comforting.

Second, I feel more confident now than I used to about being able to accept whatever life brings – and to survive it. If the next six years are as eventful and demanding as the last six have been – and that would be quite something – I think I will have a reasonably good chance of enjoying them. Even if the next six years bring a cancer diagnosis. Yes, even that. Living with a BRCA1 mutation, I accept that a cancer diagnosis is statistically quite possible. It’s not more likely than not, but it’s statistically much more likely than for an ‘average’ woman my age. Obviously, I don’t want it to happen, but if it does could I accept it? I think so.

Third, I believe curiosity is the ‘secret’ to navigating tough times. I used to find other people’s lives intensely fascinating. That’s still very much the case, but now I also find my own life intensely fascinating. This curiosity has been one of the most powerful tools I’ve had for dealing with all the challenges that have come with BRCA1.

Of course, I hope to remain employed and healthy and with a life full of love and friendship. But if I I were to face a cancer diagnosis, be unable to work for a while and/or if my love life were to go down the pan, I hope I’d be able to keep despair at bay with the help of my friends (who are many and wonderful) and by deploying my curiosity. Being BRCA1 positive is scary. The prophylactic bilateral mastectomy was scary. The risk of ovarian cancer that I have yet to do anything about it is, in some ways, even scarier. But it’s also damn fascinating. That acts as consolation of sorts.

I’m obviously older than I was 6 years ago. Older, not necessarily wiser, but definitely calmer. Six years ago I had no idea that I was BRCA1 positive, and I’m sometimes amazed that I’ve accepted it so fully. It has changed how I view my future and the process of ageing. I really like Anne Karpf’s argument that we should reject our society’s notion of ageing as a shameful burden. Instead, we can cultivate the thought that to become old is a privilege, a blessing, something to celebrate and to be proud of. What if every year on our birthdays we said to ourselves: ‘Hey, I survived another year! I did it. I’m still here. Hurrah!’

Incidentally, my birthday is coming up and that is exactly what I feel like saying. ‘Hurrah, I’m still here! And so are the people I love – especially my sister, whose BRCA1 experience has been much tougher, and included cancer treatment. Hurrah!’ So I’ve got a few more wrinkles and grey hairs. These cause me momentary annoyance, but they don’t touch me the way they used to.

When the chips are down this is what I hope for: I hope to become old – or, if not, to enjoy the days I have. I know that the physical process of ageing isn’t easy,and I’ve witnessed some of the discomforts and indignities that come with age. But that doesn’t change the fact that it is a privilege to live through many stages and phases of life. To watch new flowers blossom every spring, to observe how one’s worries and political views evolve with time. Ever since that day in May 2012 when I learned that I was more likely to die by 65* than to live, I have enjoyed life more. Even awful days at work have felt less awful. Romantic downturns have felt less bleak – more midnight blue than jet black.

I hope to revel in many more days to come – good, awful and indifferent days – and if some of them include cancer treatment, I will face it. And perhaps I will become an old lady, gingerly and slowly walking home from the shops in the spring sunshine, as one of my neighbours does. Little does she know how much I admire her.

* This is my best guess based on BRCA1 statistics and my own family history. And until my ovarian risk is tackled this is my reality.

One year ago I walked into a hospital – perfectly healthy – and allowed myself to be put under. About 11 hours later I woke up unable to move much other than my head, my toes and my hands. For a short time, the finest grade NHS morphine was my close companion.

Recovery began quickly. It felt like a miracle the way my body orchestrated the process of pulling itself together. I took tiny, agonising steps a couple of days after coming to, thanks to an encouraging nurse. And in a surprisingly short time after I left hospital I was back to longish walks – though initially I travelled at a snail’s pace.

About five months after my operation I went on a ‘learn to surf’ holiday – and did 30 hours yoga in the same week. Seven months later I was back to commuting to and from work by bicycle, thrilled to feel the freedom that only a bike can bring.

So I have recovered…in most ways. And I’m grateful. To the NHS, to my friends and sister, and to my body. It has held up.

What I didn’t fully comprehend a year ago is that BRCA1 is truly inescapable. It’s not something to recover from. It can’t be outrun or outgunned. In dark moments, I have found myself thinking: ‘If it doesn’t get me now, it might get me later. Or worse, it will get someone I love.’

I sometimes picture my two 17th chromosomes. One is perfectly formed, and the other is not. A funny little kink in a tiny bit of DNA that has wriggled its way into each new generation, making some of us less able to withstand the wear and tear of life, less able to suppress certain types of tumours. Some of us have died too young.

I never imagined what I would feel like a year after my ‘big op’. I guess I just hoped I would feel good. In almost every way I do, but…just as I was feeling physically strong again, my fear that BRCA1 would get me – or someone I love – was proved right.

My sister.

My sister can recover. She is already in the process of doing so. Her prognosis is very good and she is receiving excellent care. The stats are on her side.

Still, when I look back on this year of recovery, I am struck by how as my body grew stronger, another part of me crumpled in grief.

My physical recovery has been largely successful. And I’ve worked hard at it. (Let’s face it, I’ve never previously attempted 30 hours of yoga in one week. Why would I?) If you’ve seen me and I’ve made it look easy, then I was acting.

But physical recovery is only a part of healing. One year on, I know that I haven’t won the big battle with BRCA1. I never will. Instead, I’m learning to accept it as a constant companion. My sister’s experience has been a reminder – as though our family needed any more proof – that a microscopic twist in our genetic blueprint has the power to unravel us. And sometimes I have found myself whispering: ‘If it hasn’t got me, it’ll…’. Then I stop myself short, and remember that our family’s past is not our future.

And I say right back to that voice in my head: ‘Not my sister. It did not – and will not – get her.’ Though it tried.

Several people have asked me what I think of Angelina Jolie’s article in the New York Times about being BRCA1 positive and her decision to have a prophylactic (ie. preventive) double mastectomy.

My first reaction was as a journalist as much as a fellow BRCA1 mutant. I thought: ‘Poor Angelina Jolie, she had no choice but to go public’. Perhaps I’m wrong, but I assume that one of the reasons Jolie wrote the article was to control how her health is discussed because she knew she couldn’t stop the news from leaking out in some way.

It’s wonderful that Jolie was able to maintain her privacy after her genetic test result and during the time when she was coming to a decision about whether to have preventive surgery. And there were no leaks during the surgery phase. But she must have known there was no hope of maintaining her privacy forever.

So my first feeling when I read Jolie’s article was sadness for her, sadness that she had to tell the whole world about her genetic status and the state of her breasts.

I realise that this sadness might be misplaced. Maybe Jolie wanted nothing more than to use her own body as an educational tool for raising awareness about cancer genetics. The urge to explain and to share can be very strong after a diagnosis and during medical treatment – and we know from Jolie’s work with the UN that she isn’t afraid of tackling tough issues, including Islamophobia and sexual violence against women.

After I received my BRCA test result last year I definitely wanted to talk about it. I needed to, even. It was important to be able to explain to friends and family what BRCA1 positive status means and what my risk-reducing options were. Looking back, I’m certain that explaining it all to others helped me understand it fully myself. Talking and writing is part of the thinking process, after all.

But I didn’t want to tell everyone. I remember that in the months before my big op, there were people I absolutely did not want to know about my genetic vulnerability and my plan to have a double mastectomy and immediate reconstruction. I’m grateful that I was able to tell people gradually – widening the circle of those ‘in the know’ over time. And I make no apologies for keeping some people ‘in the dark’ for a while. Talking about death and breasts – not to mention both together! – is a challenge, and I found some people more relaxed and open to hearing about it than others.

It’s not coincidental that I started this blog only after I’d had the big op and I think it’s noteworthy that Jolie didn’t publish her article until after she was well into the process of breast cancer risk reduction. Everyone’s need for privacy is different, but some amount of privacy is important to us all, even if you’re a global celeb.

My second reaction to Jolie’s article was relief that I’m not celebrity skinny. Jolie has always been thin and, who knows, this may have helped to reduce her breast cancer risk. (It is clear that low body fat concentrations generally help to reduce ‘normal’ women’s risk of breast and many other cancers, and it may also help BRCA positive women.) But being very slim means Jolie couldn’t take advantage of the have the latest surgical option, that of using her own body’s tissue to reconstruct her breasts.

In her article, Jolie refers to the process of replacing breast tissue with implants, but I chose another medical procedure, the one that is most highly recommended in most cases by the UK National Health Service (NHS). I chose to allow plastic surgeons to take tissue from another part of my body and use it to replace the breast tissue that had been removed.

The NHS’ official view is that this option – breast reconstruction using a patient’s own tissue – is the best option for many women and, indeed, it uses this procedure when treating many non-BRCA women who have breast cancer (ie. ‘normal’ women with breast cancer). It was clear to me that I could choose implants if I wanted to, but I was told that ‘own tissue’ reconstruction is the current ‘gold standard’ treatment.

Since I was healthy and cancer-free in the run-up to the operation and had enough ‘material’ for the plastic surgeons to work with, I opted for the ‘gold standard’. No doubt in a few years’ time, there will be some new procedure that is even better.

There are several advantages – and some disadvantages – to using a woman’s own tissue to reconstruct her breasts. One advantage is that the reconstructed breasts will ‘last’ forever, whereas implants should be replaced about every 15 years. When I was making my choice I imagined myself 85 years old (because I’m still hoping I’ll live to a ripe old age!) and having to change my breast implants. At that age, I hope to be thinking about cataract operations and the challenges of clipping ever-thicker toe nails, not my sagging chest.

My third reaction to Jolie’s news is that she has done something very important with her article – she has helped to educate the whole world about the unusually-high risk of breast cancer that a small number of women face. And I am grateful to her.

Someone asked me if I thought Jolie’s article will make it easier for people to understand why I have taken the drastic action I have. The more I think about it, the more my answer to that question is a big yes. Even after I had my mastectomy and reconstruction several people asked me if what I had done had really been medically necessary. They just couldn’t believe that I had weighed up the options and chosen something that the doctors genuinely recommended. I can see why – it does seem drastic, barbaric even. And given how barbaric, it can make some people resist accepting the truth…which is that for women like me – and Jolie – such drastic action will help us have a real chance at a full lifespan.

I found it difficult to explain that ‘Yes, the doctors really do think this is what I need. Yes, I really am at such an extreme risk of breast cancer that this is recommended by mainstream, conventional medicine. Until I had this operation I really was statistically much, much more likely to develop breast cancer before I’m 60, than to not develop it.’

Exasperated, I would whisper to myself wryly: ‘As if the NHS would provide a 15-strong medical team for an 11-hour operation if it wasn’t necessary!’

Now that Angelina Jolie has explained her ‘medical choice’, perhaps I won’t have to justify mine so often.

“Who am I?” This is the classic question for any navel-gazing type and I’ve been known to ask it ad nauseum. But last year, as I prepared for the big op*, I did not ask it at all. Instead, I found myself asking a new question: “What am I?”

Faced with a genetic status that quickly led to appointments at four different London hospitals, I wasn’t interested anymore in the self-indulgent worries that can lie behind ‘who am I? Now, I was obsessed by the “what”. What is this body of mine? It isn’t what I had thought it to be.

I began to joke with friends that the surgeons would turn me into the Bionic Woman. Clearly, this was an attempt to put a positive spin on my decision to submit voluntarily to serious physical trauma.

Who wouldn’t want to be the Bionic Woman? In the late 1970s, when I was a kid, the American television programme Bionic Woman was a huge after-school hit. Each episode began with the tale of how a fictional tennis star played by actress Lindsey Wagner was rebuilt by surgeons, following a skydiving accident. The result was a new body boosted by implants that gave her super-human powers – extra-sharp hearing, a running speed of 60 miles an hour, and bone-crushing strength in one arm.

To make myself and others feel better, I joked that I was going to be bionic, too. But as the operation drew closer, I stopped telling this joke. Because it was a lie. I had to admit to myself that there was another word for me. A truer word.

What am I? I am a mutant.

This is not such an easy word to embrace, but it’s the one that fits. The reason for the operation – and the two more still to come – was to help my body cope in the face of a genetic mutation. The inherited quirk present within one of my two 17th chromosomes is one that weakens my body, rather than offering super-human strength. And it is replicated in every single cell of my body, coded into my DNA and undermining my body’s ability to repair certain types of cellular damage.

Three months have passed since my big op and I can put hand on heart and declare that there is nothing bionic about me, with the possible exception of my emotional resilience. Maybe that has been quietly rebuilt? I certainly feel emotionally solid these days.

There have been moments when I have felt uncomfortable at the thought that I am mutant, but most of the time I accept it. Part of this acceptance is because I believe that one day almost all of us – let’s say everyone, just to be inclusive – will be informed by the medics that our genetic profiles include one or more mutations. Some of these will be dangerous hereditary “germ-line” mutations like mine, others may be beneficial, making some people stronger and fitter in particular ways. Others might be one-off mutations developed during an individual’s own lifetime. How likely is it that any of us is genetically ‘pure’ by age 40?. The chromosomes that form most of us have got to be a bit wonky.

These days, inheritable genetic mutations like mine are being discovered thick and fast. A mutation has even been found that is thought to make the people who carry it more impulsive and therefore more prone to self-destructive behaviours like gambling and excessive eating and drinking. Let’s make sure our employers can’t ever test us for that one, huh?

Being diagnosed as a BRCA1 carrier has changed how I understand my body. Precisely how will it betray me? Can I arrange a fix before it does? In some ways, my body is strong and healthy – it looks that way – but now I know that it holds an invisible and highly-dangerous weakness.

Given this body, my answer to the question ‘Who am I?’ has changed too. I am all the things I used to be, plus I am mutant. But I know I’m not alone. To be an individual human is probably to be a genetic mutant in some way.

So as I walk through this world burdened with the knowledge that I am made of defective DNA, I increasingly think of myself as a harbinger of what’s to come. One day, we will all be informed of our genetic Achilles heels. I just happen to be part of the vanguard.

* For those who don’t know the background, I had a prophylactic bilateral mastectomy with accompanying skin and muscle grafts.