It’s been a year now since my world was shaken sideways.
Things were going well, I was training for a half marathon in the Australian Running Festival held in Canberra in April, with my sights set on the Chicago marathon later in the year. My husband and I have been keen parkrunners for several years now – and always indulge in a spot of parkrun tourism – with Singapore and San Francisco parkruns being visited. Generally though we would head out to Cooks River parkrun, juggled in amongst usual busy family weekend commitments.
My family and I were on a much anticipated ski trip to Telluride when I started noticing problems with my vision. On our return home to an Australian summer, our once bright kitchen seemed very dull and I was complaining about the lighting. After a routine eye test at the optometrist I was referred to an opthomologist. It became clear in her office that something was wrong with my peripheral vision, and she referred me for a brain MRI.
Now you’d think at that stage I’d be concerned— but by the time you’re 46, you feel like you’ve had many tests for things that turn out to be nothing. I was totally unprepared for the call later that afternoon that explained they’d seen a large tumour on the brain MRI. Although I didn’t appreciate it at the time, I was pretty lucky as the doctors could tell this particular tumour – a craniopharyngioma – was benign.
The next couple of weeks passed in a blur of visits to the neurosurgeon and endocrinologist and other specialists. A friend at this point gave me incredibly important advice – “always take someone with you to your appointments”. She was absolutely right, when you are in shock, you only take in a fraction of what you are told.
Running became my time to process (as best I could) the enormous news. Leading up to the surgery I was allowed to keep running as long as I kept my effort gentle. Because my vision really was not great I had to be careful about not falling over.
My surgery was scheduled for the 30th March 2017 – just 12 days after finding out about the tumour. But before then I was determined to log my 50th parkrun. Priorities right?
And there, when I look back through my running log is my run the day before surgery, my 50th parkrun. I was so grateful to be out there running but absolutely terrified about what would happen the next day – whether I’d get through it and what the future would hold. I had been read an enormous list of potential side effects. I was worried about the effect on my two beautiful teenagers – Rose (16) and Sam (14). I was worried about the burden my husband would have to face. I was worried about the impact on my brain – would I still be ‘me’ after the surgery?
THE NEXT DAY, I WENT INTO SURGERY. It was a 7-hour surgery by the most compassionate surgeon you can imagine. I had held it together pretty well saying goodbye to my teenagers and again to my husband but was in pieces in the pre-op room. My neurosurgeon sat on the edge of the bed, looked into my eyes and told me it would be OK.
The surgery went fine and as soon as I was conscious I made sure I could remember my wedding day and the birth of my two kids. However a couple of days after the surgery I had a seizure – actually due to an issue known to runners – hyponatremia – low sodium levels in the blood. This seizure meant I would have to give up my drivers’ licence for 6 months – a burden to anyone with active teenagers! It also extended my stay in hospital to 2 weeks. It felt so strange to go from a fit person to being only able to walk gingerly for a few steps.
Eventually I came home and how blissful that was.
My neurosurgeon looked so happy when I asked him whether I could run at the 6-week checkup – it was seen as a great sign. Of course, I took it easy. The first run felt blissful – for a few moments I was able to forget about what I had been through. My mantra that was with me through 5 marathons “I am here now” has become my mantra for running through recovery.
I was back at parkrun 2 months after surgery, it was lovely to see everyone’s friendly faces again. Making sure that my husband Simon managed to get to parkrun every week was also really important in amongst his increased weekend driving schedule.
It took a good few months before I was prepared to run up a hill or add in any speed work. I still claim that the surgery means I can’t do a burpee – EVER AGAIN!
Non-running friends could not understand why on earth I was running – but it was so important to me. It was so important for processing the enormity of what I was facing and I wanted to show my kids I was OK. When I was running I could for periods just tune out from the worries and feel like my old self again. I didn’t care about pace or distance. Having my vision restored meant I could appreciate the beautiful blue of the sky, the changing autumn leaves and the colours of the bay which I run around.
After three months I had to face radiation therapy. I was fixed with a face mask which was screwed to the hospital bed so I couldn’t move for the 30 minutes of treatment. The radiation was daily for 6 weeks. At this stage, again I was blessed by my friends – as I couldn’t drive, there was a daily roster of friends assigned to take me to the hospital and keep me company. It’s funny – if I had been able to drive I would have brushed off suggestions of help but this was such a blessing. It was like a coffee date without the coffee.
I kept running through the radiation treatment, but it was so tiring. The only thing I can compare it to is the tiredness I felt with a toddler and a newborn. I was running 3 days a week and going to the gym for strength work 2 days a week. People asked why I didn’t have a break but I was so determined to show my kids and myself that I was ‘just like’ my old self. One of Sydney’s iconic running events – the City to Surf – was the week before I finished my treatment and I decided to run it, with my husband by my side.
So now here I am, a year on. The tumour is attached to my pituitary so it will never be gone. But the surgery and the radiation have reduced it significantly. My vision is great and I can drive again. I experienced a load of side effects, including instant menopause, complete loss of smell (we hope it will return), a sluggish thyroid and about 10kg of weight gain due to the steroids and my poor confused pituitary gland.
One project that kept me busy over this time was the establishment of a new local parkrun. For the past three years, my husband and I had been working with a small group of people from Sydney’s Inner West to establish a local parkrun.
I’m a nutritionist so I’m a huge believer in public health initiatives that can get people moving. I love that parkrun is free, local and welcoming to people that want to walk and not run. In fact, one of my friends that drove me to my radiation treatment I had met through our local parkrun group. Today we are both co-Event Directors of Greenway parkrun which we launched on 3rd February this year, 10 months after my surgery.
We regularly get around 180 parkrunners, and my favourite part of being Run Director is when I ask in the briefing if anyone is new to parkrun – there’s always a show of hands. Greenway seems to be popular with tourists to Sydney as it is close to the city and on public transport. We’ve already got a team of 10 Run Directors and have had 5 local running groups take over the volunteering roles on different Saturdays. Plus having two teenagers means I’ve always got a couple of extra volunteers I can rope in!
Lena Charles and Bonnie Smith are Health Promotion Officers (and Best Friends) at the Victorian Aboriginal Health Service (VAHS) in Melbourne. They are passionate and love empowering their Aboriginal community to make healthy lifelong changes. One way they do this is by promoting the benefits of parkrun. They love spending their Saturday mornings at parkrun…
I first signed up to parkrun in May last year, determined to get active and lose weight, determined to go 5km around the Lillydale Lake. I was scared, nervous and for 4 months I couldn’t bring myself to do it as I wasn’t a runner and I didn’t want to be last or embarrassed because…