Kids live on a day to day basis and maybe we could all learn from that. No one's guaranteed tomorrow. I could live for another 10 years - what's the point of ruining their childhood? I don't shove it under the carpet. I give them information when they ask for it. They've had the odd kid at school tell them that I'm going to die. I explain that people can die of cancer. You talk about things in a general way, keeping it age appropriate. One day my 7-year-old said, "Mum why don't my wishes come true?" I said, "What are you wishing for darling?" and she said, "I wish you didn't have cancer". I said, "Oh love, wishes don't work on things like that."
3 What's a common misconception about secondary breast cancer?
A lot of people don't know that once breast cancer spreads to a second part of the body, like the liver or lungs, it has become secondary or metastatic breast cancer which is incurable. It's also known as advanced or stage four breast cancer. Of the 3000 New Zealanders diagnosed with breast cancer each year, 600 have secondary breast cancer.
4 Can a positive attitude help?
I wish people would stop and think before they flippantly say, "Stay positive". Positivity is going to help my mental state and my general wellbeing but it's certainly not going to help my cancer. The only thing that could help would be a cure.
5 How do you cope when negative feelings start to crowd in?
I put myself in my happy place; going for a walk along the beach with my dog; sitting out here on my deck listening to the tuis and watching the trees sway in the breeze. You appreciate things more - the clarity of the sky or the rain on the roof. Fishing with my dad is my happy place too. He's got a big boat and we go out once or twice a week.
6 How long have you been living with breast cancer?
Six years. I was first diagnosed at 38 when my girls were aged 1, 2 and 5. I found a pea-sized lump under my nipple. I knew straight away because my aunty and cousin had tested positive for the cancer gene around the same time. It turned out my mum has BRCA1 and my dad has BRCA2, so we have a double whammy. They found two tumours in my breast and one under my arm. I had a mastectomy, my ovaries and lymph nodes removed, six months chemo and six weeks radiation.
7 Who looked after your children during your treatment?
Winz were really good. My husband was working fulltime in graphic design but we qualified for a community services card so Winz paid for a nanny to care for the kids 40 hours a week. Jocelyn ran our house while I was sick in bed. I wouldn't ask Mum to be my carer. She's working fulltime and you want to shield your parents a bit. It's really affected them. Seeing your daughter so sick must be the world's most awful thing.
8 Have you told your daughters about the family cancer gene?
No. They have a 50/50 chance of inheriting the BRCA gene. You want them to keep their innocence for as long as they can. The legal age for the test is 18 years, so they can decide then whether to have the test and what they want to do.
9 What has been the hardest time in your journey with cancer?
When I got my secondary cancer diagnosis. My oncologist sat on my bed and told me I had a brain tumour. She said I could have as little as two months to live and I needed to get my affairs in order. That was the worst time of my life. I spent a lot of time on the internet, searching, searching, searching. Finally I got accepted on to a clinical trial in Australia and here I am - nearly three years later.
10 What's the clinical trial?
It's a new drug called Veliparib. I lived in Sydney for the first six months so I could take the drugs weekly in tandem with chemo. Now I fly there every three weeks. The results have been amazing. When I started I had too many lesions on my liver to count and now there are only two. One of the things that really upsets me is that New Zealanders have far less access to new breast cancer medicines that Australians. We're 40 per cent more likely to die than Australians because we spend less than half as much on new medicines. Only 13 per cent of approved new medicines are publicly funded here.
11 You're an active member of Sweet Louise. What do you like about this charity?
Having a charity that focuses solely on people with secondary breast cancer is very special. The support is phenomenal. Every year we get $500 vouchers to spend on cleaning or whatever we need. They also give us $200 for creating family memories. This year we went to Queenstown and Sweet Louise negotiated discounts on some attractions.
The friends I've made through Sweet Louise are the best I've ever made. We get together regularly and the fact we've all got secondary cancer makes it easy and relaxing.
12 What's next for you?
I'll stay on the trial for as long as it works. Once the cancer progresses I'll look for an alternative treatment or let nature take its course. This is the reality of metastatic cancer.
It's tricky - eventually it works out how to bypass whatever treatment you're on. But at the moment I'm in a really good place.
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