Two years to live, 18 weeks pregnant
WE saw that little blue cross on the stick and the world shifted on its axis. It was like the inalienable principals of physics no longer applied - what was true the day before was no longer true that day.
We were no longer DINKs that travelled the world on fantastic holidays and ambitiously forged careers.
We were going to be parents. I'm sure any parent can tell you that this shift happens, fast or slow, early or late in the pregnancy.
Internally I was like:
"Say you're excited Jules, and hopefully the fear won't take over".
A few weeks later, my father called and said, "It's not great news. Your mother is sick. You need to come and see her". The world shifted again.
I was no longer my mother's daughter. I needed to care for her. All of a sudden, I had a rush of worry. Like I suddenly needed to grow up and be the adult. How am I supposed to figure out this motherhood stuff without my Mum?
"Say you think she will be OK Jules, and hopefully the fear won't take over".
Then three weeks later, my GP called my husband and told him that I am not answering my personal phone and I needed to go in and see her. I was in Darwin, life was busy, my work as a lawyer in my dream job was a priority, I was nailing this pregnancy and I needed to catch a plane.
Frustrated by people demanding my time, I go and see my GP. It's cancer. The earth moves under my feet.
"Say you're OK Jules and hopefully the fear won't take over".
A few weeks later: it's metastatic, it has already spread to my liver and bones. It's not curable. I have about two years. I'm 18 weeks pregnant.
"Say something, Jules …"
My husband and I talked about options but never considered anything other than moving forward with bringing our baby intothe world.
It was hard to believe that having chemotherapy while pregnant was just a 1.05 per cent increase in danger to our unborn child. Oh the irony that a glass of wine would transcend the placenta but my chemotherapy wouldn't.
Treatment started and I lost my hair and yet just like many other pregnant women my nails grew rapidly. I wasn't nauseous but I was tired - not sure if that was the pregnancy or the treatment.
I got more and more pregnant and eventually I didn't recognise myself in the mirror.
I broke a rib and fractured three vertebrae. I had to be very careful about pain relief and anti-inflammatories during pregnancy.
As a young woman with breast cancer let alone a pregnant one I couldn't help but feel isolated and that is was all "unfair". It was as if lightning had struck.
I went to a Young Women's Think Tank run by Breast Cancer Network Australia. I was the only pregnant one but others had been diagnosed just post-pregnancy and we all were facing similar issues, and they are different to older women with breast cancer.Young women want to talk about fertility and sex after breast cancer. I needed help through a system that doesn't supportyoung women with breast cancer. I needed help with childcare while I was on chemo, I didn't understand private health insurance and - hell - I want access to my superannuation!
I came away really empowered by these strong, sexy determined women.
As the months went on, my obstetrician and oncologist worked really well together. Due to a number of factors, 35 weeks was chosen as the best time for the baby to arrive.
I had to stop treatment for five weeks in the lead-up and in that time my aggressive cancer almost had me back to square one.
I was induced three times but it didn't work. Bub was strapped in and comfortable; she did not want to leave early.
My obstetrician felt so bad that we needed to go for a C-section that he took my husband and I out for breakfast to break the news. Geez, he is a lovely man. It wasn't his fault. It was my lady bits that were refusing to play the game.
I needed a general anaesthetic because there were concerns the epidural may affect the tumours that had appeared on my spine. Everyone kept telling me I did a "good job" when Rory was born. To be fair, I just fell asleep.
So I woke up, and I was a mum. The world shifted again.
Rory was born with a full head of luxurious wavy hair. Even though I was a little jealous, I was also happy because it feltlike maybe the chemo hadn't got to her.
Three days later, I definitely felt the "baby blues". Nobody talks about the wild ride that is the hormone rush and retreat around birth. Or maybe they do, and I never listened.
At day seven, I fell off a hormone cliff into "chemical" menopause. By day 14, I was back on chemotherapy. Rory came home four days later. Then my mother went into hospital. Three weeks later she passed away. The world shifted once more.
She was a titan of creativity and love and she was gone. My backbone of support and strength was no longer there to lean on.
The hardest thing I've ever had to do was tell my mum and dad that my cancer was incurable. I know now, more than ever, thatlosing a child is the greatest fear of every parent.
I know having a terminal illness is a conversation killer for most people, but I need to talk about it. I need to plan and I need support from the health system. I know I am a minority within a minority. I know the survival rate for early breast cancer is something like 91 per cent which is amazing. But there are 3000 women who will die this year from breast cancer.
Those of us with metastatic cancer are forgotten in the shiny stats. Not every woman with breast cancer gets a happy ending.
My husband and I manage because we laugh - and ask for help. We can't do this by ourselves. My husband works full-time andis studying his Masters degree (and somehow on a distinction average?!).
With chemotherapy and radiation, I sleep a lot. Without family and friends and a part-time in-home carer for Rory, our lifewould not be possible. We are so grateful for the generosity of our entire village that is helping us raise our beautiful daughter.
I have become a "doer" for Breast Cancer Network Australia. I know BCNA can't cure my cancer. They can't save my life. They can't give Rory a mum and a grandma. It may be the sad reality that no one can.
I have become involved in BCNA because my daughter needs to know that despite how tough the situation is, there is always something that can be done. It might not be the perfect solution, but when times are tough, we must participate in change.
The textbooks say I haven't got long but we are going to throw everything at this and I am arrogant enough to think maybeI am the exception. I've been asked why I don't lock myself away and just enjoy the time I have left with Rory but that'snot who I am.
I want my daughter to know that I tried to make my breast cancer count and perhaps improve the experience of the next woman.
I want her to grow up knowing the world has women like Raelene Boyle and Lyn Swinburne who have inspired cultural and social transformation. They have created a movement in Australia that day by day, week by week, makes people's lives a little better. It is our duty to participate.
She may grow up in a world that is eventually free from breast cancer; but even if that is not possible, she will know thatwe stand together to help each other.
Today I will go to my friend's hen's night and next month I will stand beside her as a bridesmaid, just as she did for me only three years ago. I could never ever have imagined how my life would change, who would?
My husband stops my world from spinning out of control. He is the extraordinary and seemingly impossible mix of strength, kindness, love and nurturing for both Rory and I.
I always knew he was something special, but these last few months has shown me that no one can do what he has to do. He listenswhen I need to talk. He steps in as both mum and dad for Rory with seamless dedication and care. A decorated military man,he is not only a hero for our country, but he is confident and calm when the worst has happened.
He somehow makes cancer funny and playfully teases me about my terrible head shaving skills and pretty unattractive side-effects; all of which would seem so much worse without the humour that somehow makes them less damaging. He is everything you hopefor in a true partner in life; I can't believe how lucky I am.
This experience has taught me that when the world shifts, when lightning strikes and the worst happens, it's the village around you the make it possible, bearable and sometimes even funny. And besides, the only way is through.
Today is Metastatic Breast Cancer Awareness Day. Visit bcna.org.au to see how you can help.