Sometimes I wake up and think to myself how did I ever end up here. Now, I’m not talking about – how did I ever get Breast Cancer because let’s face it, that can happen to any of us. No, I’m talking about how did I ever end up so deeply and passionately involved with Patient Advocacy.
This is a picture taken from a bridge that I walked across daily throughout my treatment. The sea was my ‘go to’ place. The sound of the waves rolling in, the colours reflected in it were reminders of the healing power of nature. Somehow that power would well up inside me and I found myself compelled to get there everyday or as often as I possibly could, to recharge my power, my battery, my healing as it were.
On days when I felt weak and unable to walk very far I would often stop on the bridge and just stare out to sea. The tree on the left of the picture, the one that looks like it’s about to collapse became a bit of a focal point for me. It would remind me of how I was feeling most days, good days and bad. I’d tell myself that although I’d fallen, I was most definitely ‘hanging on in there’.
The bridge leads into a beautiful woodland walk that runs parallel to a fabulous parkland golf course, where I had been a member for more than 25 years. On Tuesdays, I could hear the ladies teeing off the 4th tee box, the familiar banter. On Wednesdays I would sometimes recognise the voices from the men’s tee box on the 7th tee. I can’t begin to explain just how much I missed golf, I loved playing and I wondered how or if I would be able to play again. It would depend on the surgery – “we’d have to wait and see”. Just one of many uncertainties that lay ahead.
I had so much time, I wasn’t working through Chemotherapy and I found myself more and more reading up on Lobular breast cancer. I was making sense of a diagnosis which I thought at first was aggressive, because of my tumor size but later discovered I had a relatively slow growing Breast Cancer. Invasive Lobular Breast Cancer is the 2nd most common type of Breast Cancer accounting for about 15% of all Breast Cancers and 6th overall most common Cancer in women globally. When I began to ask questions of my Clinical team early on I realised that my curiosity wasn’t always particularly welcome. It took time but I eventually mustered the confidence to seek a second opinion and shortly after doing so I made a decision to change my GP, my Surgeon and at the end of my Chemotherapy I changed my Oncologist too.
These were by far some of the best decisions I made following my diagnosis. I had already spent too long worrying about whether it was the right thing to do or not. From the beginning I had felt something wasn’t quite right. I couldn’t understand why questions I asked about my diagnosis had been met, from the start, with so much avoidance. When my decision to change clinicians was made, I felt palpable relief. I could concentrate on recovery and I had a real sense of trust once more. I’d crossed another bridge and I was on a good path. I could move forward without second guessing and it felt reassuring to have people around who would not only answer questions but encouraged them too.
Most of you who know my story will know I began http://www.Beingdense.com in the months following my diagnosis. At the time I had no idea I would become so deeply involved in raising awareness about Breast Density or that it would fill so many hours, days, months and now years of my time. I believe now that it was almost inevitable. My gut feeling when I was diagnosed was that something was not quite right. I followed my instinct and it led me to developing a Patient Advocacy, an awareness and information about Breast Density and the risk factors associated with having Dense Breasts. So here I am.
A two min clip from a documentary called The Advocates which is still in production
I’m still drawn to the sea. I love the sound of the waves crashing against the rocks. I often pause on the bridge that leads into the woods, the tree on the left of the picture is no longer there, it fell during a storm. I’m still standing. I admit my Patient Advocacy has been hugely cathartic, there were days when it pulled me through, it helped to put things into perspective. I’ve disrupted the status quo by asking questions, yes – but I’m no longer asking the questions just for myself. It’s not just about me, it’s also about every woman who goes for their Mammogram. It’s about hundreds, perhaps thousands of women. It’s about my nieces, my friend’s daughters, the grand daughter I may one day have. That’s how I’ve ended up here and I intend to stay here, as passionately involved with Patient Advocacy and for as long as I am able.
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