Living with and loving life with the BRCA mutation

It is a pleasure to work across national media to share my tale. Often it’s about rediscovery and redefining and sometimes about living with and loving life with the BRCA mutation. A massive thank you to S magazine at the Sunday Express for giving up a whopping double spread to my words. Who would have thought that I’d be able to write big articles for big national papers one day? Life is full of surprises 😉

The full content of the article is this: Living with and loving life with the BRCA mutation

It is a Wednesday afternoon and I wake up in recovery. The distant bleeping of monitors, the nurse checking in on me and me worrying if everything had gone well. When I finally come round enough to ask, the nurse reassures me that my surgical removal of my ovaries (oophorectomy) had gone as planned. After a moment of relief I just feel numb. Physically and emotionally.

Tired. It’s been a long journey.

I was going from a healthy 39 year old woman to being a fully menopausal woman. Within hours of the surgery my sex hormones dropped to almost nothing.

I have drastically changed my life.

I have drastically reduced my risks of ovarian cancer. The same cancer that took two of my aunts, a grandmother and great grandmother much too early.

This horrible cancer prevented me from being able to make memories with them. I never got to know them in the way that I wanted to, and just the thought of this makes me angry. They will never get to see their grandchildren or great-grandchildren. They will never be able to grow old and enjoy their retirement years, whether in a respite care facility like or from the comfort of their own home. They will never kiss the cheeks of their husbands or partners again. It is just heartbreaking. Everyone should be able to grow old gracefully, not have their lives taken from them through cancer. And this is why I needed to do something about it.

As I lay there in recovery I knew it was the only right thing to do for me. However, women who undergo surgical menopause before their natural menopause period are at an increased risk of developing adverse health issues. These include heart disease and osteoporosis. In some cases, the effects of the menopause can be debilitating. As you can see on the CBD Queen blog, CBD can be used to alleviate pain and other symptoms that are caused by menopause but menopause, especially in this context, can still be a very big burden on a woman’s life.

Only the future will tell quite how I will cope with it all.

Six years prior to that my journey to today began. Never before then did I feel more alive, more hungry to live, laugh and love. More desperate to survive. A lump in my left boob meant cancer. This lead to a lumpectomy to remove it, an axillary clearance to remove my lymph nodes, chemo and radiotherapy. Quite a few complications meant stays in intensive care.

Although I had the most amazing support from my family, although I knew I am one of thousands of women who get diagnosed with cancer every day, I felt so alone. Alone with my fear that I would not see my three little daughters grow up and start school. My twin girls were 2 at that time, my older daughter was 4.

Between then and now lies a long road of transformation and recovery.

Although there were always a few days in between chemo cycles that totally wiped me out, I think as a family we did pretty well. I made a pact with myself, that I would get up every day and take my girls to nursery.

At that time I received a book about how to manage the many side effects from cancer treatment through diet. It was the first the that I realised the link between the foods I ate and what’s happening inside of my body. And although at that stage, I only dipped my toe into the water, I felt that I personally could do lots to support how I was coping and that felt great.

A blood test confirmed that I carry a mutation in my genetic make-up. I tested positive for the mutated BRCA1 gene, also the so-called ‘Angelina Jolie’ gene. The mutated gene means an increased risk of breast cancer of up to 85% and an increased risk of ovarian cancer of up to 60% from the age of 40. Although I knew the chances that I was a carrier of the faulty gene were high, I remember being so upset when I found out. I felt disappointed, angry, low. Instead of focusing on finishing radiotherapy and then getting on with the rest of my life I knew I had another journey to embark on. A journey that I knew would be another ‘biggie’.

Although my genetic mutation had already thrown cancer at me once, the chances of more breast cancers are high. So two years after my diagnosis I underwent a risk-reducing double mastectomy. It did take quite a while to recover form that, I’m not going to lie, it was painful! But on the up side, it did teach my girls to carry their own school bags from an early age. By that time I was lucky enough to see my three girls start school.

Although I tried to carry on with life as normal as possible, I was mentally at an all-time low. I was incredibly anxious that my cancer could return. I obsessed over every little pain, always thinking it’s more cancer. It was so hard for me to move on.

By then I had changed my diet.

I had tried lots of different things, went on the clean-eating band wagon, went sugar free, dairy free, gluten free, cut out alcohol and anything else that I though was ‘unhealthy’. In a weird way, at the time when my diet seemed the most healthy, my mental wellbeing was at an all-time low. I knew food alone wasn’t going to be enough for me to regain some strength and rebuild my house.

After my mother in law ushered me to her weekly yoga class I kept going back, week after week. Yoga taught me to cultivate an awareness of my present moment. The times on the mat seemed like bliss, no worry about the future and not as much dwelling on my past. I got hooked, so much so that today I even teach classes and host retreats myself. Aside from yoga I went to counselling, hypnotherapy and the simple principles of mindfulness helped me to also start feeling better mentally.

I made another big change in how I and my family eat. After a nutrition in practice course at Leith’s cookery school, I shifted my focus on all the amazing foods I wanted to eat. No more free-from, just lots of yummy family friendly dishes with lots of vegetables that are full-of nutrients. To nourish us from the side out.

I believe it is this positive approach to food, in combination with my yoga and mindfulness practice that has led me towards a full recovery. It seems as if I now have a toolbox full of strategies that I can use when times get tough.

The decision to remove my ovaries long before I would naturally enter menopause was no light one to make. But since I have taken control over my own mental and physical wellbeing I trust the process a lot more. Trusting that just like before, I will find ways that suit me and my body. I knew I would bounce back from surgery pretty quickly. I was back teaching my yoga classes within four days after the op.

After careful consideration with my medical team I’ve decided to go on hormone replacement therapy to minimise the effects of the menopause. This is not an option for all women, especially with a history of breast cancer. But given my specific type of breast cancer and the fact that I had a double mastectomy means it is safe for me to do so. Of course that’s not ideal and won’t suit every woman, but for me for now, that’s a good thing.

I also know that by actively taking part in my own wellbeing I gain perhaps the most important thing. And that is hope.

Here I am doing everything I can to decrease my risks of more cancers. Here I am living an active life and taking positive steps towards good health and a happy life every single day.

Knowing fully that I can’t control it all.

Years ago I felt hard done by that I had cancer at the age of 33, with a genetic mutation which massively increases my risks for more cancers. Today I feel so lucky to know. That science gives us all these facts. That people are able to have genetic cancer screening to help them understand their bodies and what could happen in the future, and how they may be able to help themselves. That I am strong enough to deal with them and make informed decisions.

I see things so differently today, that sometimes it feels like the whole world has changed.

But of course it’s not the world that has changed. I have changed. Ready to tackle the next chapter.

If you would like to speak to someone about any concerns you might have about what you have just read you can contact your GP or contact the Eve Appeal, or Breast Cancer Genetics for much more information and support.

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Dani Binnington

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