How it all began…

(This is only a funny image if you’re an orange or a grapefruit. If you’re anything else it will probably just make you reach for the gin…)

Well, I guess it all began with boobs… 

I can’t remember a time when I didn’t have boobs. In all honesty, they have been a blight rather than a blessing. Unsightly, cumbersome, expensive (mammoth boobs need mammoth bras) and just generally a hinderance. I spent most of my youth yearning for smaller ones and being incredibly jealous of my friends who were less well endowed. I know the grass is always greener, and I have no doubt that I had many friends who wished they had larger ones, but the back ache, difficulty to play sport and general discomfort was something I would have happily traded in a heartbeat.

What I can’t really remember is when the idea that my boobs were dangerous entered my consciousness. Ticking time bombs. Silent assassins.

It may have been around the time my Nanny Ben was diagnosed with breast cancer. I genuinely can’t remember if my mum had a conversation with me at that point or not. I feel like she may have, but my flippant teenager brain certainly didn’t register any real need to worry. It may have even been when I heard that my Nanny had passed away. I can’t be sure.

It may have been around the time that my Auntie was diagnosed with breast cancer. I remember how upset my mum was as she told me her sister had found a lump. Happily, after some gruelling treatment, the cancer was forced into submission. But not before my mum had carefully sat down and plotted our maternal family tree and identified that there were very few women who had not had to face the big C at some point in their life.

It may have been the day that my mum phoned me and said she had found a lump in her own breast. Or the day that she had to go to hospital for the lumpectomy. The day that she underwent her mastectomy. Or maybe the day she started her chemotherapy.

It may well have been the day that we realised it was back – that it had decided to plant itself  in her brain instead. Or maybe even the day that we had to say goodbye before we were ready to (as if we would ever have been ready to…) as she slipped away in a soulless hospital room surrounded by machines.

All I know is, the thought of cancer is never far from my mind now. I find that I am haunted by memories and thoughts and fears. I well remember the day I was taken to one side by a breast care nurse in another pale and worn hospital and told to have my children as soon as I could so that I could do ‘whatever it took’ to reduce my risk. And I remember my beautiful mum, bald and exhausted, telling me she wished she had found out if she was a BRCA carrier because she had actually been relieved to find her lump after waiting her whole life for it to appear. Can you imagine that? A sense of relief that you finally had cancer. I’ll never forget that conversation or the intense sadness we both shared as we held hands on a cold morning in Wales.

So I decided to do something about it. Not without a significant amount of procrastination obviously. I started genetically counselling many years ago and learned a little about the BRCA genes and what they meant. There was talk of a blood sample being taken from my mum but we never quite got around to arranging it. Cancer is funny like that. You never quite get to where you wanted to go before it throws that curveball and throws you off track.

I restarted the process after the birth of my second little boy. A blubbering, post-natal mess, I sat in the doctor’s surgery crying about how worried I was that I would get cancer and be taken away from my children. Because ultimately, that’s what my biggest fear is. That I won’t be there for them. That I’ll miss the ‘big’ events. That they will have to see the things that I saw and live with them their whole lives. My doctor handed me a tissue and made the referral and the process began in ernest.

I met with a genetics counsellor who again explained what they already knew about the BRCA mutations. We looked at my family tree and they ran the information through the diagnostics and came up with a figure of around a 16% chance that I would develop breast cancer regardless of whether I had a gene mutation or not. This was high but not significantly higher than the national average. They offered me the genetic test to find out once and for all whether I had a mutation. So just before Christmas 2016, I sat in a tiny consultation room, with my third baby breastfeeding happily, whilst the genetic counsellor extracted a small vial of blood to send off for testing. I was told to expect a 10-12 week wait.

It was closer to 14 weeks. I received a phone call from the clinical psychologist attached to the BRCA clinic at Guy’s Hospital asking if I would like an appointment. I figured at that point that the results were in and they were putting everything into place to support me before delivering the news that would change my life. And sure enough the following week, a small innocent looking letter waited for me on the mat when I returned from a delicious ‘yummy mummy’ lunch with my baby friends.

‘Positive identification of BRCA 2 mutation’. 

(Here it is. The bastard.)

It was what I had expected and had been prepared for for years. But thinking you have something and then KNOWING you have something are two entirely different situations. And the magnitude of what I was facing hit me harder than I thought it would. An 80% chance of developing breast cancer in my lifetime. An 80% chance of having to tell my children I had found a lump… I had a cry. Of course I had a cry. A punch to the face hurts just the same whether you expect the blow or not.

Fortunately (or unfortunately depending on how you look at it), my third pregnancy and the birth of my daughter had had a measurable impact on my mental health and the good ole’ ‘PND’ had taken root in my normally fairly measured mind. Lots of counselling had worked it’s magic and I had discovered the wonderful, life changing practice of Mindfullness. And how glad I was to have that weapon safely tucked into my arsenal when I read and absorbed the information in that letter.

(I thought it was hippy bollocks to begin with too. But it really is the most enlightening process if you come at it with an open mind!)

With the help of my lovely husband and friends, I realised that knowing I was BRCA2 positive was an extremely empowering thing. I accepted the information and felt a new sense of purpose.  I knew ‘it’ was coming for me at some point but now I had the power to fight it early. I had had many conversations with myself, family and friends about the steps I would take if I had a positive diagnosis so I knew that a preventative double mastectomy would be my first port of call. I had also started reading into the various research around cancers and knew that I needed a serious health overhaul.

So this brings me to today. Today, 29th May 2017, I am a week and a half into my Weight Watchers journey as I attempt to become a happier and healthier me. And on Thursday I will be travelling to Guy’s Hospital in London to meet my team – a psychologist, a breast care nurse, a breast surgeon, a plastic surgeon and my genetic counsellor. I have also agreed to take part in a clinical research project looking at the factors which may cause the mutation in the first place. It is almost certain that my beautiful children have the mutation too. The research happening now around the world could have an unfathomable impact on how they will deal with their own diagnoses in the future.

How do I feel about it right now? I’m nervous for sure. But more than anything I’m excited and I’m determined. This is my chance to DO something before it is DONE to me. To be the active crusader rather than the passive victim being stalked by the weighty lumps that stop me being able to sleep on my front every night. I’m not going down without a fight and the fight starts this week.

I’m getting something off my chest and I can’t wait.