Welcome to our series, The Cancer Diaries, brought to you by the Cancer Society. With 1 in 3 Kiwis diagnosed with cancer in their lifetimes, the ripple effect of a cancer diagnosis spreads far and wide across Aotearoa. Over the next few months, we are going to bring you a range of stories from people who are affected by cancer: those who have dedicated their life’s work to fighting cancer, those currently living with cancer, those who have lost their most precious loved ones to cancer and those who have recovered and are now experiencing the second act that comes with surviving one of the hardest experiences a person can have. In the lead-up to Daffodil Day, we hear from an incredible young woman, diagnosed with terminal brain cancer, who is determined to make a difference while she can.
It’s a mother’s worst nightmare – having to tell her gorgeous, bubbly and vibrant 26-year-old daughter that she has brain cancer.
It’s something Rachel Raven still can’t believe she had to do, and a year on from daughter Paige’s heartbreaking diagnosis – stage four, terminal brain cancer – Rachel, Paige and the rest of their family are taking matters one day at a time and truly living in the moment.
“We can only keep moving forward,” says Rachel. “She’s pretty strong and determined. She’s back on chemo at the moment and not coping with it too well but I am so proud of her. She’s incredible. All of our family is quite strong-willed!
“We just have to live life and have fun and don’t dwell on it.”
Twenty-six is a cruel and heartbreaking age to be diagnosed with terminal cancer. As Paige says, all of her big dreams in life – getting married, becoming a mum and owning a home – now won’t happen. She asked if she could freeze her eggs, but was told she wouldn’t live long enough to be a parent. “Someone telling me I couldn’t do these things tore me apart,” Paige tells.
Paige’s cancer battle began last April, when she first started losing feeling in her fingers. She was first diagnosed with stage three brain cancer, but was quickly deemed to be stage four, and terminal. Now, it’s a case of prolonging life as much as possible – and Paige and Rachel, with the help of the Cancer Society, are determined to make it as fun, and as meaningful, as possible.
Says Rachel, “You’ve got no idea how differently we look at life now. Nothing is the same. It’s a bit of an out-of-body experience, really – we really don’t sweat the small stuff, we don’t worry about work, about money. Everything has changed.”
While supporting her daughter through treatment, Rachel says the family just, in a very Kiwi way, “gets on with it”, but says the support of the Cancer Society, especially around driving them to Paige’s appointments, has been invaluable.
“They’ve been so, so great. Incredible. Right from the start they have helped us with all sorts of avenues and resources. The drivers are astounding – the compassion they have is amazing. We needed all the support we could get, especially at the beginning when it’s so scary and overwhelming.”
For the first six months of Paige’s battle, Rachel says the biggest emotion was grief – about the idea of losing Paige, but also what that means for their tight-knit family. “It was getting my head around things like the fact I’d never be a grandmother for Paige’s kids,” nods Rachel. “Now, we’ve learned to live with this. They have given her 18 months to live. I don’t think about that. Paige will often say, ‘we need to talk about what will happen if I’m not here.’ I’m like, ‘no, not happening. We don’t talk like that, Paige. You’ll be here forever. Just focus on that. And that’s because if I think about what will, at some stage, happen, I’ll crumble.”
Instead of dwelling on their circumstance, Paige and Rachel choose to “push through” and stay positive and strong. “Mindset is massive,” says Rachel. “We used to go to the radiation together and honestly – and I’m sorry – it must have sounded like we had Tourette’s! We’d say swear words we’d never said before, we’d laugh, we’d sing. It was just about bringing energy to it, and we used to make everyone laugh. On the last day we even dressed up. She was Velma from Scooby Doo and I was a nurse in scrubs.
“This sounds harsh but there is no point sitting there feeling sorry for yourself. We just had to get through it the best way we knew how, and that’s laughter. We do a lot of laughing!”
And even though time is precious, both Paige and Rachel are spending a good chunk of it not only lending their story to The Cancer Society in the lead-up to Daffodil Day, but advocating for change in the system where they personally found significant gaps.
“It’s about making changes to how cancer patients are told that they, in fact have cancer, and also how people can access knowledge about resources and support,” says Rachel. “We had to fight for access to resources for the whole time [within the hospital environment]. It was so hard to track down different services, different disability services – the list goes on. It’s massive.
“How are you supposed to know where to do when you’ve never been through it before? No one else should go through what we’ve been through. We found so many resources, but that should accessible for anyone to tap into. We’d like a QR code where people can access them all in one place.”
But the biggest, heartbreaking thing was how Paige was told she has cancer.
“How we got told is that I got a phone call – they rang me at work. I had to call my husband, who met me at work, then we went home and we told Paige. That’s how she got told – not sitting in an oncology appointment, with doctors and answers to questions. It was disgusting – no loved one should have to have that burden of telling their loved one that they have cancer.
“But now after lots of meetings with head honchos, there changes happening now, which is great. But we had to fight.”
Now, all Rachel and Paige want to do is to encourage as many Kiwis from across the country to donate to this year’s Daffodil Day appeal.
“Every little bit really does help,” says Rachel. “Unless you have been in it, it’s very hard to understand what it’s like to have cancer, or help someone through cancer. The Cancer Society help so much with just actually getting through it all.”
1 in 3 Kiwis will be diagnosed with cancer. That could be your partner, loved one, or friend. This Daffodil Day, we need your help to save lives and fight against cancer. Please make a donation in support of Kiwis like Paige today at daffodilday.org.nz or look out for collectors on Daffodil Day, Friday 29 August.