In September 2013, Fleur Kay, mother to two young children, Madison and Jack, and wife to Darren, was diagnosed with a grade IV glioblastoma – a particularly deadly cancerous brain tumour. After one of the most intense and confronting years of her life, Fleur talks to Offspring about her physical and emotional journey through cancer treatment and her dreams for the future.
PHOTOS Photography by Hilary Adamson www.hilaryadamsonphotography.com.au
It all started while I was mopping the floors. My leg started uncontrollably twitching, so I went to the local walk-in GP service, who sent me straight to the emergency apartment. They almost sent me home as there was no specialist on site on the weekends, but decided to give me a CT scan and anti-seizure medication, as they believed the twitching to be a seizure. After that, they gave me a contrast, which is a CT scan using a special dye. The doctors noticed a mass they felt shouldn’t be there, so they sent the scans on to a specialist at Sir Charles Gairdner Hospital (or “Charlies” as it’s known), who confirmed there was something amiss. I stayed overnight, and was sent up to Charlies to have a biopsy operation the next day.
After a quick recovery from the biopsy, I was sent home to wait for the pathology results that would tell us what sort of tumour I had. They came in, and I was told I had the worst kind of cancerous brain tumour – a grade IV glioblastoma, which was on my left frontal lobe, and controls the right side of my body. They also told us it was inoperable, as the risk of paralysis was too high. So all of a sudden I was just shattered and in shock, thinking my life was going to end very soon.
“The hardest part was not knowing what to say to our kids - how much information we should give them?”
The journey through treatment
I underwent chemotherapy and radiation a couple of weeks later – you can only do radiation once, so they do it at the same time as chemotherapy to give the treatment the best chance of success. The combination was very draining and made my right foot muscles limp (an issue I still have to this day) and I went bald in a large square patch on top of my head that is still growing back, so I always wear a hat now. I was also put on anti- seizure medications and steroids that caused me to swell up – and they had to increase the dose of the anti-seizure medications almost straight away as I was having frequent episodes where the seizures would numb my whole right side.
All through this, my husband was a rock. He took over a lot of caring for the kids – and of course our amazing family and friends stepped in as well. I was there a lot of the time, but treatment was very draining, so he scaled back his work to a supervisory role only. The hardest part was not knowing what to say to our kids – how much information we should give them? We told them I was unwell and they had to be gentle near me, but if they ever had any questions we would answer them honestly.
When I first went into hospital, my daughter decorated a shoe box and filled it with ‘special stuff’ – it was so sweet, full of photos, magazine, letters and drawings for me. I absolutely loved it, and it’s a really special moment from a really challenging time.
“It’s frustrating that I can’t drive a car to pick up my kids, and how quickly I get tired out when we are doing something as a family.”
The next chapter
I kept up the chemotherapy for a couple of months, stopping for a break over Christmas. Because I was still having seizures, we decided to see Dr Charlie Teo for a second opinion. We were in the public system with no private health cover, so we had to cobble the money together to make this happen – and my family and friends wanted to help in some way, so they did a few fundraisers and we donated part of the proceeds to brain cancer research. We flew from Perth to Sydney twice, once for a consultation, the second for the scariest operation you can imagine – to try and remove the tumour. The risks of paralysis were huge and we didn’t take them lightly, but Dr Teo asked me if I’d be willing to potentially lose the use of an arm or leg if it meant getting the tumour out to live a longer life. I was.
The operation was successful in removing all of the tumour, though it initially left me with paralysis of the right side. The good news is, through physiotherapy and clinical Pilates sessions, I have 99 per cent recovered from this paralysis – I still require a walking stick and I can’t walk very far or drive a car at all, but the tumour was removed. It has been amazing to see the effects so quickly and how you have to learn to retrain your brain to do the most basic things, most of us take for granted.
I haven’t had a seizure since the night before the operation in March 2014, which I am thrilled about, however, I still undergo chemotherapy once a month as a preventative to keep the tumour away. I also have MRI scans every three months, and continue to take anti-seizure medication as the scar tissue can cause seizures. I have an appointment coming up to make sure the tumour isn’t coming back, and if that is successful, we will discuss coming off such frequent treatment – I am someone who rarely used so much as a Panadol, so I would love to be free from the feeling that my body has been invaded by chemicals if it can be done without risking the tumour coming back.
“I live on an emotional roller coaster with times of depression and anxiety, especially as the doctors remind me the tumour can grow back at any time.”
It goes without saying how happy I am to still be here and that the tumour is gone. My beautiful husband, two children, my family and friends have been amazingly supportive and encouraging – they’ve always been there for me while I’ve gone through; and am still going through, my journey. I’d be lying if I said there wasn’t a dark side though. I live on an emotional roller coaster with times of depression and anxiety, especially as the doctors remind me the tumour can grow back at any time. I sometimes – and it is often around chemotherapy time, have dark moments where I just need a good cry, reassurance and some new goals to focus on, to get me back on track.
As much as I deeply appreciate how much support and help I have, I’ve always been really independent and it can be hard sometimes to be so reliant on everyone else. It’s frustrating that I can’t drive a car to pick up my kids, and how quickly I get tired out when we are doing something as a family. But I recently met a man on a charity walk who was five years cancer free and I’m looking forward to that being me – seeing someone who has come out the other side of the journey reminds me that this is just for now. And I am getting to see my beautiful children grow!
This experience has taught me to slow down and smell the roses – to not stress over the small things and enjoy every minute of life with my family and friends. My friends and family have helped me create awareness to brain cancer and we will continue to do so to assist with funding for research, and hopefully inspiring others to do the same. I have so many more experiences I would like to have for myself, with my beautiful kids, and I am slowly ticking them off the list, testing my capabilities!
Fleur says one thing she’s learned from her journey - aside from staying positive, it would be the importance of seeking a second opinion.