Becoming a Previvor

Hi! It’s been a while…

Firstly, I just wanted to say a HUGE thank you for all the lovely comments I received via various channels after my first blog. They gave me all the ‘feels’… and raised some interesting questions. Which were raised even further when I went for my appointment at the BRCA clinic at Guys.

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The main question that has been dancing around and evading my grasp is ‘How do you feel?‘. And that’s not proving to be an easy question to answer. I think the main reason I’m struggling to work out how I feel about it is because of how other people feel about it. When I have told my friends about the BRCA+ result, they go through a range of emotions and I see them playing out on their faces – shock, pity, sympathy, anger on my behalf. And it confuses me because I start to wonder if I should be feeling like that too. Should I be shocked by it? Experiencing feelings of self pity? Angry at the cards I have ben dealt?  Meeting with my genetic counsellor had a similar effect on me. She asked me how I felt about the diagnosis and the surgery looming and didn’t seem satisfied when I said that I felt fine about the whole thing – relieved even, to have a diagnosis and a way forward. She kept probing and probing as if she was looking for more from me – more emotions. An outpouring of something locked away? I eventually admitted that I was a little worried about the scarring and that I felt a little ashamed of having such vain thoughts when you considered the wider picture. And I didn’t hide the fact that I was worried about how I would recover from surgery whilst looking after my Three Little Raptors. Jack voiced his own concerns about whether I was mentally strong enough to face the surgery so soon after having Chloe. I know that I haven’t fully finished (or perhaps even started) dealing with losing my mum even though it was over 5 years ago.  With so many questions and concerns about the emotional toll this could/should be having on me and genuinely, I’m full of confusion. I don’t know if I should be more worried. Or more angry? More concerned about whether my babies have inherited the same fault. Maybe I’m in denial and repressing my true feelings in order to cope with the here and now. I just don’t know. I’m sure that as time goes on and my journey starts to shape itself, my feelings (and my ability to recognise my feelings) may change. But at the moment, I feel oddly at peace with everything. I can’t change the fact that I have the mutation, so it seems foolish to sit and waste emotions on it. I have far more important things to feel emotional about. Like the final episode of Orange is the New Black. And Emmerdale.

My consultation with my breast surgeon, plastic surgeon and breast care nurse was far more straightforward. Their currency is that of facts and statistics with a clear focus on the doing rather than the feeling. That sense of drive and planning is exactly what I needed. They talked through the options I had open to me, many of which I had a vague understanding of from my own research. The ultimate end point in all scenarios is the removal of both boobs and for that I am so very thankful. All hail the NHS! The route to that end point is different for different people. Everything removed at once? Or in stages? Reconstruction or becoming a ‘flat friend’? If yes to reconstruction, implants or use of own tissue? If own tissue, where from? Nipples or no nipples? Own nipples or reconstructed nipples? Or tattoos? The list really is endless and again, entirely down to the individual’s requirements and needs.

The plastic surgeon seemed very keen for me to consider the option of a tummy tuck and reconstruction from my own tissue. And I can’t blame him. One look at my MumTum and who wouldn’t immediately jump to the conclusion that a tummy tuck would be a delightful additional outcome in this situation. Personally, I’m not so keen. The thought of the additional surgery site and recovery is not a pleasant one.  I will have three bouncing babes to look after following my surgery and the additional discomfort and recovery is certainly not going to help with my mum duties. And more poignantly for me is how I feel about my body. No one loves their body post baby… but I am quite fond of it. It did a good job – and yes it’s stretched and wobbly and bits stick out at funny angles and none of my pre-baby clothes look quite the way they did – but how insignificant are these factors when you consider the amazing thing my body achieved. It grew three humans! I don’t have any stretch marks – I have tiger stripes. And I earned every single one. The thought of ‘fixing’ them with a surgeons knife just doesn’t feel right to me. Almost like a betrayal of the journey my body has been on. I’m pretty happy with the way I look now. And there’s always this option…

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So I’m left with implants. Every woman’s dream. Perky plastic boobs. But there are some considerations. They don’t last forever which will mean I will have to undergo surgery again at least once again. They can develop problems – which again would mean more surgery. But I feel at this time in my life, they offer the easiest recovery and quite possibly the best cosmetic results. It seems vain to talk about the ‘cosmetics’ of this surgery. I’m not having a boob job or a cosmetic procedure. But I’m still in my early 30s and I’m just not ready to totally write off my own needs to feel womanly and comfortable in my own skin. Both surgeons seemed apologetic when they explained that they wouldn’t be able to offer me implants to match my current size. Oh how I laughed. I can’t imagine a scenario where I would ever choose to have boobs this big. Don’t get me wrong, they have had their uses. But they’re also a full time concern.

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The struggle is real…

And so, the plan was formed. This Christmas I will be having the first of my surgeries – a breast reduction to the size I would like to be after the mastectomy. I will then be given time to heal completely before the full mastectomy and implant reconstruction around Easter time next year. This should be the safest way of reducing size and creating the best possible cosmetic outcome in the long run. I’m not excited by the thought of having two separate operations and recoveries especially when you consider the complexities of our hectic lives. But ultimately, I’ll be guided by the experts. The reduction surgery apparently has a recovery window of only 10-12 days which should be very manageable, especially in comparison to the 6 week recovery window of the mastectomy. I also can’t escape the fact that eventually I’ll need my ovaries removed. They don’t consider this option for woman below 45 and that’s something I’m very relieved about. As I said to my consultants, I’m 85% sure we have competed our family. But I’m just not ready to surrender that 15% chance of another baby just yet. It seems that at this moment in time I’m far more attached to my ovaries than I am my boobs. 

As I expected, the issue of my weight was raised. I knew that there would be concerns over the surgery with me being so unfit. As it turned out, I was just within the parameters where they would offer me surgery. But they pointed out that it was best to be close to my goal size before surgery so as to achieve the best cosmetic outcome. And obviously, the closer I could be to a healthy BMI, the happier they would be to operate. The surgeons set me a target of a nearly 4 1/2 stone weightloss by Christmas. I love a challenge, almost as much as I love Weight Watchers, and I am really enjoying pursuing the goal they set. At the end of my first 5 weeks of following the plan, I am already 20lb down from my start weight. It’s a drop in the ocean but I’m confident I can make a real change to my life and lifestyle to make me a happier and healthier person going forward.

So, where am I now? I’m very happy that we have a plan in place and I will be going back to Guys in September to arrange a date for the Christmas surgery. In the meantime, the BRCA team are going to arrange for me to start my breast screening programme to check for any ominous changes between now and then. I also need to be more breast aware – more checking so that I know what is normal for me. This is complicated by the fact that I am still breastfeeding little Chlo. Everything is a little more lumpy and bumpy at this point in time! I am also going to continue with my new eating and exercise regime (with a focus on improving my core strength in readiness for not being able to use my upper body post surgery). And I’m going to carry on talking about it. Thinking about it. With this in mind, I have joined some BRCA+ forums on social media as a way of seeking support from women (and men!) going through the same process as me.

But more than anything, I’m going to continue enjoying the beautiful things that surround me because life isn’t a test run. Shitty things happen to people all the time but it’s how we deal with the shittiness that shapes us. I came across a lovely term in my research recently – ‘previvor’. I’m not planning on surviving cancer… I am planning on ‘previving’ it and doing everything I possibly can to make sure it never catches me. Like I said, I love a challenge.  So cancer, go fuck yourself.

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How it all began…

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(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’. 

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(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.

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(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.