In praise of lab workers

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.

A fair exchange

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.

One year on…recovery

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 17^th 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.

3 thoughts about Angelina Jolie

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.

Defining my terms

“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 17^th 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. 

A universal experience

I don’t know anyone else in my particular situation, no one with the same genetic status and who has had the same medical intervention.*

I know such women exist, but we’re rare, and I haven’t had time yet to find any others. Even in my own family, the situations facing my BRCA1-positive female relations are all different to mine and the medical advice we receive is surprisingly well tailored. We are treated as the individuals we are.

With my circumstances so unique, I could easily be feeling set me apart and different from everyone around me. But that hasn’t been how I’ve been feeling at all. Rather than feel the odd one out, I have felt a greater sense of shared humanity with those around me, rather than less.

The old man with the stick who sat down carefully next to me on the bus on Friday evening… little did he know how well I understood the need to place one’s posterior down with care, how I’d done just that a couple of minutes earlier. I felt we were two secret peas in a pod as the bus headed up the hill. Differences of race, age and gender meant nothing in that moment.

No one’s body goes on forever, performing perfectly. We all break down. And we all face the emotional agony of accepting our bodily failures.

As I’ve recovered from the unusual and gruelling operation I had two months ago, I have been surprised to discover that the emotions I’ve been feeling are very similar to what I previously felt before the operation, when all I had to contend with were minor signs of physical ageing. I’ve simply had to learn to experience these emotions washing over me more often and with greater ferocity.

As various parts of my body have been healing I have had to look in the mirror. A lot. For a few weeks it seemed that things were changing every few hours, Each time I looked I had to go through an emotionally-charged process of seeing my body as it was, not as I hoped it would be, and then trying to accept this new reality.

The temptation not to look was strong, at times, as was the desire to bargain with myself, to say ‘this can be fixed’ or ‘that won’t stay that way’.

In some cases, I have been right to predict improvement  – my body is in flux and there have been a few pleasing developments amongst the more depressing ones. Most of the good news has involved discoveries about my physical fitness  – I can still walk miles, hurrah! – whereas the depressing news has usually been about my appearance.

Over the last eight weeks I have become accustomed to running through a routine that most of us experiences as we age. I have stood in the mirror and I have panicked. “That wasn’t there before! Or if it was, it didn’t look like that.”

Then, I have calmed myself down and have said all sorts of things that we usually say to ourselves when we’ve discovered a little sag or bulge or red spidery vein or a line in a place where we were sure there was no line before. “It’s not so bad, chin up. If I stand up straight and do a few press-ups every morning, who will notice? There’s a cream I can buy that will hide that. With good lighting I look ok. It’s the sparkle in the eyes that count, not the wrinkles.”

Early on, I had to reassure myself occasionally that I was not in the midst of an out-of-control spurt of accelerated ageing. More recently, I’ve had a mild sense of moving backward in time. I’m no longer the old woman I was when I left hospital, gingerly walking baby steps and holding onto someone’s arm. I’m my own age again, just a little out of breath when I go upstairs and always on the lookout for a soft chair to sit on in cafes.

I have – and will continue – to experience that feeling of disappointment, followed by stoic acceptance, that becomes familiar to us all as we age. Realising that this psychological process I’m go through on an almost daily basis is, in fact, a close cousin to a process I was already familiar with – and that everyone around me faces – has been comforting.

Gradually, I have decided that just as the appearance of a new or deeper wrinkle on my brow is not the end of the world, neither are the lasting signs of this operation. Just like the physical ‘scars’ of ageing, my new wounds are best viewed as sacrifices made in the name of life.

* My particular situation is, if you want to know: BRCA1 positive, cancer-free so far, in the midst of recovering from a bilateral prophylactic mastectomy and immediate reconstruction using own tissue from thighs (including the gracilis muscle from each leg).

Walking with me

About a week before I had the first of what will be a series of operations to reduce my risk of developing early cancer, my sister & I attended an exhibition. This may sound odd – even morbid – but as we both mentally prepared for what lay ahead, we voluntarily headed to the Wellcome Collection to see a show about death.

As I walked through the exhibition, looking at paintings, etchings and sculpture inspired by that universal human experience that we fear so much, I felt comforted. It felt good to be in a space where the word could be spoken, where on every wall there were images of a grim reaper.

I was particularly drawn to depictions of the ‘dance of death’. In these, folk busily go about their daily business, failing to notice that there is one additional constant and silent companion. Death is among them. He – or, in some cases, she – is part of their group, though they cannot see this. S/he doesn’t participate, simply keeps pace. S/he is marking time.

Looking at these works of art, suddenly, I was forcefully reminded of my twenty-something self. Full of life and, for a while, wild with neon red hair, short skirts and big boots….and, at times, secretly tormented by thoughts of death.

The deaths I thought so much about were never my own. My death didn’t worry me. It was the death of others that I feared. In truth, it wasn’t death at all that I dreaded, it was grief – what comes after death, for those who are left behind – that prompted frequent, but brief, crying fits.

The fantasy was always the same. I imagined that someone I loved dearly had died. (In fact, I only knew that I loved someone if I began to develop a secret, obsessive fear that s/he might die.) I didn’t believe they would die – it wasn’t prophesy – I just needed to imagine how I would feel if they died.

So I would imagine it and then I would cry. Usually somewhere private. This wasn’t a performance.

Clearly, the fantasy was designed to make myself feel some of the loss I feared so keenly, but in advance. And there was no mystery why I feared losing someone, since I had experienced the sudden death of a loved one when I was very young. I knew what grief felt like. If there was a monkey on my back, grief was it.

Thinking of myself all those years ago, I realise that I dealt with these fears reasonably well. I got so used to it, that I would simply let the fear come, wave after wave of it. After I cried, I would feel light. It was cathartic.

I can’t remember feeling ashamed of it, but I did gradually I become frustrated that my fantasy of others dying was so different from the fantasy that so many children and adolescents report, which is one of themselves dying and of all their friends and family being terribly distraught.

‘Why don’t I ever have that, more appropriate fantasy?’ I wondered.

Fast-forward a couple of decades and things have changed. That old ‘loss fantasy’ seems to have weakened. It comes only rarely. Now, it’s my own death I think about.

My first reaction to the news that I am BRCA1 positive was to figure out how to beat the odds. If the women on the side of my family that is affected by BRCA1 had a 100% early cancer rate in the two generations above me (my aunts, grandmother and great aunts), and if only one of those women lived beyond 66 years, then I was going to use modern medicine and all my wits to live a long and largely-healthy life.

I envisaged myself sitting on my metaphorical veranda, rocking in my imaginary rocking chair, dispensing wisdom whilst drinking bubbly. And popping vitamins pills. Of course.

My family’s history of early and pre-dominantly fatal early female cancers is backed up by statistics about BRCA1 women as a population. Research published in 2010 suggests that left to our own devices, we genetically-vulnerable creatures have just a 53% chance of reaching 70 years, compared to an 84% chance for the general (probably American) female population.* But if we have some rather brutal surgical procedures at a young-enough age, we can get ourselves back up – on average – to about a 79% chance of reaching 70 years. That is really not bad.

My guess is that these statistics will change as more data is collected. But in what way, I don’t know. The BRCA mutations were only identified in the mid-1990s and it would be useful to have a few more generations of women to…well, to die…before we can see what the trends are.

Every few months, new research is published. Some of it is encouraging – for instance, BRCA1 women often have the most aggressive types of breast cancer, but many of us seem to respond better to treatment than ‘normal’ women.

And some of the research is less encouraging – certain BRCA1 mutations seem to predispose carriers to heart disease and when we have heart attacks, we don’t recover so well, because this annoying genetic quirk of ours makes muscular repair less effective. Great.

It can be crazy making. ‘Does this study mean I will die young? Or does that study mean I’ll survive?’ I have every intention of keeping up with the research, but I already worry far less than some of my friends might fear I do. And that’s because I’ve accepted something we all, eventually, need to accept.

How to explain?

A few evenings after my sister and I attended the Death exhibition, I was walking alone, in the dark and rain. I had left work and I was just a few minutes away from a bright, warm house and a supportive friend. I was enjoying the light rain and the solitude and, then, I smiled because I realised I wasn’t really alone. There he was, next to me.

Death. (I don’t know why, but for me death is always a man.)

We walked and in my head I spoke to him, this fact of life, this imaginary manifestation of a universal truth of all animals’ existence.

I told him he was welcome, that he could walk close to me, that I quite liked his company. But I was not ready to go. He would have to wait.

“One day, I will turn to you, and we will both know the time is right. But it isn’t now.”

So we walked on.

And we walk still.

*Data reproduced in Confronting Hereditary Breast and Ovarian Cancer (2012), published by John Hopkins University Press or see Kurian AW, Sigal BM, Plevritis SK, “Survival Analysis of Cancer Risk Reduction Strategies for BRCA1/2 Mutation Carriers”, Journal of Clinical Oncology 28, no.2 (2010): 222-31.

It’s amazing what they can do these days

In the weeks after I received the news that I am what they call a BRCA1 carrier, a few people I spoke with used a phrase that I quietly grew to dislike. “It’s amazing what they can do these days”. They being the medical experts, of course.

The phrase was generally uttered by a friend or family member in an attempt to make me feel better. I felt guilty for feeling annoyed, since I knew they were being kind – and were  probably shocked by what I had just explained to them.*

The reason I didn’t like ‘It’s amazing what they can do these days’ was because I was in the midst of confronting – with care and determination – exactly what they – the medical experts – could not do for someone like me.

On the plus side, they could take a small amount of blood and within a few weeks tell an individual like me that she has an up to 85% chance of developing breast cancer, probably at a younger rather than older age. (That sounds like bad news, but I’m a firm believer that knowledge = power.)

Less positively, they couldn’t tell me exactly when the breast cancer would come, or whether – if I kept eating industrial quantities of broccoli – somehow I’d be the extra lucky member of my family and prove indestructible.

The blood test also allowed them to tell me that I have about a 1 in 2 chance of developing ovarian cancer, a cancer with a death rate so high it is rapidly becoming a scandal.

But they couldn’t tell me that they have methods to catch ovarian cancer early, as they have for breast cancer. Because they don’t. None.

And they couldn’t tell me anything useful about the way being BRCA1 positive may increase the risk of developing a string of other cancers: pancreatic, stomach, esophageal, uterine, bowel, melanoma. In many cases, the increased risks are likely to be small enough for me to categorise them as ‘not worth worrying about’,  but I can’t deny that it is too early for much useful data to be floating around the interweb.

So every time someone said ‘It’s amazing what they can do these days’, I was thinking ‘You’re right, I’m so, so much luckier than the generations of women before me, but the medical experts aren’t magicians. So let’s be realistic.’

What I learned about myself in the weeks after I received my test result is that when it comes to life and death I like to be realistic. I don’t dissolve into a puddle of tears (except quietly when I am already in the bath, which has always been my preferred venue for teeth gnashing & despair).

I get up, go to work, go home and…think. My consolation during those weeks: I may have one defective seventeenth chromosome, but I haven’t lost my marbles.

From the beginning, I accepted that there are limits to what they in the world of medicine can do for me. So I sought to map what those limits are. I wanted no platitudes, no blind faith, no ‘it’ll all be all right in the end’, and absolutely no panic. Instead, I wanted facts, stats and summaries of research trials.

I became adept at leaving work at the end of each day and systematically clearing my mind for the next task, that of reading and weighing up each new bit of information against all the others already in my head. I asked the questions every journalist should pose as she reads her own or others’ work: ‘What don’t I know? What is missing? What questions haven’t been answered? Where are the gaps?’

All this so that when I saw them next – and there were many appointments – I could ask for the right kind of help. I had no interest in asking for what they couldn’t give. So I sought no promises, no magic bullets. I asked for what they could do with what they do know.

And what I discovered is…?

I discovered that IT REALLY IS AMAZING WHAT THEY CAN DO THESE DAYS. Using a microscope and a level of expertise that takes my breath away, an army of them needed just eleven hours of surgery time to transform me from being at high risk of developing breast cancer to being virtually risk free – and at the same time (and this is what took the vast majority of the surgery hours and skill) preserving so much of my ‘chest’ that in a few months’ time I should be looking…pretty damn good.

Now, when someone says ‘It really is amazing…’ I am the first to agree.