Elen writes about her secondary breast cancer diagnosis, the moment that her ‘dragon’ returned. She explains why she refuses to let her cancer define her.
I felt two lumps in my collarbone
After my treatment for primary breast cancer, my left shoulder started playing up in November 2015. I went back and forth to my GP as gradually movement became impossible. Physiotherapy didn’t really help and by April 2016 it had completely frozen.
Late one Friday I started prodding around my neck area. My husband Trev wasn’t around, he was in France watching Wales in the Euros. I felt two rice sized lumps in the pit of my left collar bone. That second, I knew. My dragon was back.
I was made to feel I was being dramatic
I had the most spectacular breakdown in history and ended up in A&E with my best friend, crying on the shoulder of a nurse and a doctor who assured me that I what I had felt was the tip of my rib.
Trev came home and everyone seemed to think that I had been a drama queen. I spoke to my GP, Dr Wilson the following day. I told him about my shoulder and lumps.
He was the first person who listened to me and by the end of the conversation I had an urgent appointment to see him at the Christie hospital.
Someone finally listened to me
When Dr Wilson felt the lumps and saw how much pain I was in, he told me that I could have secondary breast cancer in the bone in my shoulder.
It was the best and worst moment. Someone had finally listened to me. Although the diagnosis was the last thing I wanted to hear, he had validated my concerns. He also explained that it was likely it has spread to the peritoneal area, something that is typical of my sneaky lobular dragon.
The news shattered me. I knew that he was right. Trev held onto the last ray of hope and believed it would all be well.
Within a week I had PET and CT scans. The CT scan showed my breast cancer had metastasised, scattered like confetti around my axial skeleton. Dr Wilson explained that it must have been there for years, asleep. I remembered in 2009 having the worst back pain of my life. A GP told me that it was a herniated disk. Now I think that it was you, my dragon, waking up slowly, ready to rampage through my body.
It’s my body so I call the shots
The next three months were hell for my loved ones and me. I didn’t cope well with my diagnosis. Chemotherapy was imminent and I felt death was closer than ever.
Between June and October everything was a blur of tests, operations, consultations and bad news. You were in my cervix and my sacrum was full of fractures. You were one sleepy dragon, as the activity of the spread was incredibly low. I had a Ki67 biopsy which showed that the cells were dividing slowly. It gave me hope.
I felt that losing my hair was inevitable. I was offered the cold cap but, in my mind, it was in for a penny, in for a pound. For me, losing hair showed that the chemotherapy was working.
I had a magnificent wig. I wasn’t going to let you break me, so I wore fake tan, pink lipstick and a wig that was the exact copy of my own hair. I hardly told anyone and to my surprise very few people had any idea I went through treatment. Sod you dragon. Yes, you’re a horrible thief but you are living in my body, so I call the shots.
I found that the hardest part of chemotherapy was growing my hair back. When you’re bald a wig is relatively easy, but once the hair grows back it pokes around everywhere and gets hot. I decided to take off the wig and reveal a pixie cut, telling everyone that I ‘fancied a change’.
I won’t let my dragon define me
I know you will never vacate my body. I can’t say that I like having you as a guest, but you are fairly well behaved.
I don’t afford you much notice anymore. My life has settled in to the new normal. I don’t resent you or hate you; it’s mutual indifference. You live in a cage now and only come out if I let my thoughts wander.
I know that you will wake up again. But I’ve got Dr Wilson, Trev and people who love me and who will guide me through whichever path you take me on.
I will not let cancer consume or define me. I am Elen, with a life full of love and laughter, and that is more important than my dragon will ever be.
This blog is part of a series from Elen. Read her first blog.
If you have been diagnosed with secondary breast cancer and would like to get more information and talk to others who understand, our online programme and virtual meetings are here for you.