My family is a genetic disaster!  Seriously!  But at least I know that.  Other women in my family, in my mother’s generation and my grandmother’s, weren’t so lucky.  They couldn’t know they were a ticking cancer time bomb, and didn’t have the chance to manage their risk.  I, at least, can control my own destiny.

My story started in the car, in Sydney.  I was 12 years old sitting next to Mum and listening as she explained how she felt unwell and bloated and couldn’t describe the ill feeling to doctors no matter how much she tried.  She went from doctor to doctor without ever getting a real explanation before she finally admitted herself to hospital for tests.

Shortly after she was told she had cancer.  At the time, it was just a word, which I didn’t fully understand, but then the chemo, radiotherapy and other treatment started.  Mum and Dad tried to keep the horror of it all hidden from me and the rest of the family – hidden from the world outside their bedroom.

There were moments of triumph along the way, both small and large, from the purchase of a lovely scarf and a new wig, to her first haircut while in remission. It seems odd to think back to such outwardly mundane things and remember how they put a smile on Mum’s face.  We took a couple of holidays to foreign destinations where no-one could recognise her.

Then I was leaving school one day and a teacher was quite concerned about me and the cancer my mother had. She had been diagnosed with ovarian cancer, but it had spread to her liver at this time. I didn’t know why – I didn’t understand, no one had explained it to me. But my teacher was right to be concerned.

My father works in foreign aid developing programs that help adults to educate themselves. We travelled a lot when I was young and we had a great life. When I was just a baby we moved to Singapore and lived there for 8 years. We returned to Australia for 4 years and it was while we were here that Mum discovered she was sick. That didn’t stop us from taking on our next adventure – the Philippines. At the time it seemed normal, but on reflection I wonder whether dad was trying to block it all out, almost running away? We stayed there for 3 years until Mum passed away. My mother spent the last months in Australia getting treatment while I continued school in the Philippines.

Mum went back and forth to Sydney for treatment, but I stayed in the Philippines and so did Dad. Most of the time I think my sister and brother looked after her, although I really don’t know.  She struggled alone, not wanting us to worry about her. At the time I never realised how sick she really was.

She kept the front up. No one knew. After 2 years of fighting her illness (I was aged about 15) she died.  My dad fell to pieces, not loudly or really openly, just quietly fell apart.  For all that he had tried not to admit it was happening, my mother, the backbone of the family had gone.

My sister was now married and lived with her husband overseas, and my brother was away from home at university, so there was no-one else but me to take on the role of Mum. I washed and cleaned and tried to keep everything normal.  Dad cooked roast after roast. Everything had changed, but between us we tried to be the same. I went from a child to an adult overnight. Dad had to suddenly try and manage all the emotions of a teenage daughter. Despite all that, life went on.

My father’s way of managing the situation was to “keep busy – you’ll be right”.  If you didn’t stop to think about it, you would never have to deal with it.  We never did talk about it.  We all just kept going. Now, when I talk about it with my brother and sister, we try not to get upset, or to upset each other.

When my mother finally told her sister how sick she was she booked herself in for a hysterectomy. At the time, there was no genetic testing or any other way to measure the risk.  My grandmother, my 2 aunts and now my mother had all passed away. My family looked for so many ways to blame something or someone. Was it due to environmental factors?  Living under a large power line junction as a child?  How about superstition and old wives’ tales such as the odd number of steps we had in the house or simple bad luck?  We didn’t think genetics.

My sister went on to study medicine and I suppose it is no coincidence that she has specialised in oncology.  She did some investigation into the family while she was living in England and could see the family pattern.  She helped me to understand the hereditary risks and explained some of the testing that is available. She was the first of us to be tested for the genetic mutation, and luckily she is negative.

My sister explored the high risk clinic at RPA. I was 30 when I started seeing the wonderful staff there. They didn’t mind that I had not yet had the genetic test. They carried on as if I was positive, as I did. At 31, in 2006, it was time for me to have the genetic test. I was advised that the treatment would be the same up until the age of 30 even if I was positive. So now it was time to make decisions… I guess!  I had the test and waited…

In the meantime my partner and I went on a lovely holiday with some friends of ours. While we were away, he proposed and I said yes. He explained that he wanted to propose before we had the result of the test.  If it was negative, he didn’t want me to think that he had waited until I was “normal” before proposing.  It if was positive, he didn’t want me to have any reservations about saying yes.  I guess he just wanted to show that he would be by my side no matter what the result!

I sat in the chair, with my fiancé by my side and listened for the result. I believed I was positive; I lived my life like I was positive. The result: positive.  No matter how much I had prepared myself for the outcome, I was still shocked. I cried at first but I quickly realised that I just needed to give myself a slap in the face and say “I knew that”.  And then continue on as I had been.

I’m different from my mother in that I will tell my story to anyone who is interested!  I actually find it all fascinating, and I want anybody who can to learn from my experience. If being open and sharing my story helps someone else to deal with a similar problem, it is a good thing.  It doesn’t cost me anything to talk! I want to learn from others too.

The hardest part has been telling my Dad, sister and brother, and anyone close to me, because they worry so much. I think my brother is scared for me. I think maybe one of the reasons he has ruled out having children of his own is the worry of passing on the genetic fault to his daughters, although he has not been tested. But that is my brother. I have given him all the information and I hope he reconsiders.  My sister is very supportive, but I think it is hard for her not to feel guilty that she is negative while I am not.

My husband knows the risks that I have to deal with, and will support any decision I make to help manage the future.  He is quite pragmatic, “whatever comes along, we will deal with it”.

So each 6 months I go to RPA and meet with a range of friends Anne, Leslie, Bronwyn, Selvin, Kath, Georgina, Sandra and the lovely lady at the front desk, who has moved now though. I hear from them about their holidays, shopping, family stories and what everyone is up to. I quite like my biannual visits! Every 6 months Selvin taps his toes and asks “Are you having babies yet?” Every 6 months I get a little bit older.

My life is fairly quiet but people say I have an interesting story. I know no different, so don’t think I’m being brave, I’m just doing what I have to.  I don’t want to be like all of the other women in my family. I just don’t want to get sick.

That phrase has driven me to decide my next step.

I have decided to cross the next bridge: mastectomy and reconstruction.  I know that to some people it seems a drastic step.  Everyone says to me “but screening is so good these days, especially now with MRIs – you will be fine and besides, we will keep such a close eye on you”.

My problem is that all I know and have experienced is sickness. In our family there haven’t been any heroic stories of survival – only death. The latest, my cousin aged just 42 died of breast cancer. Who is next?  The one thing I can be sure of is that it won’t be me.

I don’t want to wake up every day wondering if today is the day they will find something.  I don’t want to risk waiting until I have had children, only to find out that I waited too long and now my own children are going to have to visit Mum in hospital.  I have the chance to deal with this risk once and for all, on my own terms, and while I am still young enough and healthy enough to ensure a complete recovery.

So for me my path is slowly winding.  I cross each bridge as I come to it and take one challenge at a time.  First mastectomy and reconstruction; after that children. Selvin will be so pleased!

It’s funny - I am a really indecisive person. I struggle over a menu for ages!  And yet I made this decision relatively easily. I am a practical person and could only see this outcome as a “when” rather than “if”.  I was worried that if I continued on I may have two children and be aged 39 or 40 when I have to manage a mastectomy and reconstruction.  Then I would have to rely on my husband to manage work, me, and the children on one income for a couple of months. This way – I’m the only one in the equation.

Screening is very good and would most probably prevent death – but it won’t stop me from getting sick and I doubt whether it would prevent me from having to go through this process eventually.

I remember walking back from St Vincent’s with Mum when I asked if the radiotherapy was making her better. She explained that it was just stopping it where it was, not making it better.   I know treatment is better now, but I have the chance to avoid that altogether.  Mum died still looking after all of us. Even on the day she died she asked us if we had clean foil on the grill for cutlets. I don’t want that for my family and I can’t put my dad through all that again.

Dad remarried very quickly and there is no mention, no evidence of my mother anymore in their home – only memories.

I will do whatever it takes to overcome this.  I wonder whether my children will have to manage this problem too.  Do I trust to luck that the gene will not be passed on?  Do I trust that science will find a way to manage the problem in future?  Or do I stop this genetic fault now through use of PGD?  That is the next bridge to cross.

It’s strange - my sister and Dad seem to feel guilty that I am the positive one. They don’t understand that I have always been positive (or that I’m positive despite being positive, if you’ll excuse the pun!). They try to imagine how they would feel in my place, but it’s not the same.  I know they feel helpless, but I don’t know how to ease their anguish.

My husband doesn’t talk much about how he feels.  He just wants me to come through this period safe, happy and ready to enjoy the rest of our lives.  We cross each bridge as we come to it.

Mastectomy and reconstruction; Children; Ovaries removed; Three steps over the next few years and it will all be over.  I know I will beat it. Let’s just hope everyone else can.