I was diagnosed with secondary breast cancer ‘de novo‘ (at the same time as primary) in May of 2017. After months of crippling back pain which was blamed on pregnancy I lost movement in my right arm. I was being investigated for that as they thought it was linked to endometriosis which I had been living with since the age of 19. Breast cancer was not even a thought, let alone secondary breast cancer which I hadn’t even heard of!
During some tests I noticed one of my stretch marks looked a bit strange so off I went back to the GP only to be told ‘It was nothing to worry about’ and ‘probably hormonal’. I had to push to be referred to the breast clinic and finally a ‘non urgent referral’ was put in. Off we went on our annual family trip to Center Parcs (love it!) and all thoughts of the referral were forgotten.
A week later at the end of my appointment at the breast clinic, following goodness knows how many biopsies, mammograms and ultrasounds, my life changed forever as I was told I had breast cancer. Fast forward 48 hours and suddenly it was not only primary breast cancer - it had also made its way to every bone in my skeleton including my skull. Life became a rollercoaster which I can’t get off.
At the time of diagnosis, the cancer had eaten through my vertebrae at C6 (neck) and T12 (spine) causing spinal cord compression. A month in hospital began as they tried to stabilise me, not only to save me from paralysis but to ensure I was strong enough for chemotherapy to start and start it did. I went through an initial 15 rounds of Paclitaxol (IV chemo) alongside Herceptin and Perjeta (HP sauce!), denosumab for the old bones and zoladex (to shut down the powerhouse that was my ovaries). In February of 2018 we were thrown another curve ball when it spread to my brain. I still struggle to find the words to explain how that felt. Brain surgery and radiation (cyberknife) took place and I moved onto Capecitabine (an oral chemotherapy drug) which I am still on (touch wood!). Since diagnosis I have undergone 13 surgeries ranging from brain, to spine and breast.
I thank my lucky stars every day for my medical team who work so hard to keep me going! Living with stage 4 is tough regardless of what pictures we post of ourselves looking funky at chemo or leading a relatively ‘normal’ life between treatment. It truly does change your life in a way that you can’t explain. Learning to live with your ‘new normal’ is something that slowly you do learn to do.
It can be totally overwhelming when you are diagnosed and hard to even imagine how you are going to get through the day, let alone life, with secondary breast cancer. Everyone’s journey is unique and there is no right or wrong. Perhaps you want to keep your diagnosis amongst friends and family? Perhaps you want to join every support group you can find? Perhaps you want to start a blog? Whatever you want to do, it’s ok! Surround yourself with people and things that make you happy and take time to process life. Some days you won’t be able to get out of bed but there will be others that you can take on the world. Taking time for yourself is crucial. Whether it is having your nails done, going for a walk or even treating yourself to some new lingerie to make you feel more confident!
As a result of my diagnosis, like Caroline, I decided that I wanted to use my diagnosis to something to help others. I founded Make 2nds Count to give hope to those living with secondary breast cancer. Through the charity we fund research projects as well as provide support and education for those living with or affected by the disease.