Riding My Way Back

By Louise Curtis

Louise Curtis was a healthy, fit 42-year-old wife and mother of two young daughters, when in 2013 she was diagnosed with brain cancer. Following awake brain surgery to remove as much of the tumour as possible, and still battling the effects of radiation treatment and chemotherapy, Louise started to ride her bike for charity. She hasn’t looked back since.

The day after my awake craniotomy in 2013 I started to write a journal. The first entry was upside down and back to front. The next day it was back to how you would read it. That was the state of my brain at that time.

“It’s just bad luck” my neurosurgeon told me.

I was a healthy, fit, 42-year-old woman, married, with two young daughters. I was working two jobs in the health and fitness industry and had started my own business in water-based personal training and rehabilitation. In 2012 I had sustained a foot injury that was incorrectly diagnosed, and three years prior to that I had a reaction to a mouthwash after using it only once, which caused excruciating pain. I knew this wasn’t just ‘bad luck’!

Due to the foot injury, I couldn’t do impact activities, so I started to cycle more. Ever since my surgery I’d suffered from headaches, a constant 3/10 sometimes reaching 10/10, and cycling outside in the fresh air relieved these.

Sometime after my operation for what was thought to be a low-grade glioma, I remember getting a call from my oncologist. I instinctively knew that it wasn’t going to be ‘good news’. The tumour was more aggressive than they had initially thought, and the pathology showed it was a grade 3/4 anaplastic astrocytoma (AA). In other words, cancer.

I was prescribed six weeks of radiation treatment and chemotherapy, followed by a further six months of chemotherapy in the form of a pill called temozolomide.

Four weeks after my surgery, I started back at work, in order to help others and keep me distracted from what was my ‘new reality’. I had also started fundraising on my bike for the Cancer Society and the Malaghan Institute, where my neurosurgeon was conducting research into brain tumours.

I got involved with a road cycle group. We were gearing up to ride 101 kilometres at the iconic Grape Ride cycling event through Marlborough’s Wairau Valley. It was my first event in ‘The Year on My Bike’, as I called it.

To do the event I had to hold off my last round of chemo. My oncologist was happy with my progress and knew the experience would greatly benefit me. I had the last round of chemo on my return.

I had outlived my prognosis, but I was hungry for more. So began my journey by bike, which I called ‘The Ride of My Life’.

A journey of highs and lows

Brain cancer had robbed me of me – who I was, who I would have become, who I wanted to be. I needed to replace it with a sense of worth and purpose. As I couldn’t drive any more following my surgery, cycling became my principal mode of transport. It was my ‘endorphin high’, my painkiller, my therapy…and it became my passion.

Since that first event, I have cycled for many different charities, riding thousands of kilometres and raised thousands of dollars. As well as the Cancer Society I have fundraised for the Malaghan Institute, Ronald McDonald House and Mary Potter Hospice. In 2015 and 2016, I was the Ambassador for Canteen at The Crank, an indoor cycling event.

I’ve had amazing instructors at my local gym who’ve supported me with fundraisers too. I have also been sponsored by a sportswear company which provided me with cycle kit for my fundraising rides.

In 2018 I had to resign from both my jobs. I couldn’t sit, stand or walk comfortably. I was suffering from severe headaches, light sensitivity, sensory deficits and cognition difficulties. I was deemed ‘not vocationally independent’.

“I felt lost, a ‘nobody’. I needed a distraction more than ever, a reason to keep going.” ~ Louise Curtis

So, in 2019, with the help of my friends, I embarked on the ‘Tour Aotearoa’ cycle tour from Cape Reinga to Bluff, a total distance of 3,000 kilometres. I would be fundraising for the Cancer Society.

This was a new challenge. I needed to do the tour on a mountain bike. As I had been riding on road bikes ever since surgery, I needed to train my brain to take all the bumps and knocks this ride would entail. I named my new mountain bike “Jurnee”, for the “journey” I’m on with cycling and fundraising in the life after my brain tumour diagnosis.

We finished the tour in 25 days. It was a ride I’ll never forget!

Learning to be resilient

Over my life, I have come across many challenges and uncertainties which have helped me through difficult times. As a result, I think I’ve become more resilient.

Another challenge arrived in 2020 when the global Covid-19 pandemic hit our shores. Both of my daughters were living away from home, which was hard. I was unable to receive the treatment I needed as everyone was focussed on Covid-19.

Life took another turn when I was hit while riding my road bike by a careless driver. I suffered severe concussion, facial and dental injuries, plus other injuries. The systems that should’ve helped me didn’t.

I again needed to get away from my ‘normality’.

So, in January 2022 I set off with a support group of like-minded individuals to do the amended ‘Kopiko Aotearoa’ cycle tour. Due to Covid restrictions we had to start the tour in Tauranga, ending up at Cape Egmont, a total of 1,060 kilometres. This time I was fundraising for the Cancer Society. It was another exhilarating experience!

Most recently, in May 2022, I experienced what was thought to be mini-strokes or seizures. However tests were inconclusive. All I know is I’m in a lot more pain and fatigue than ever, but I still get up and keep moving forward.

The last ten years have been a battle. I’ve experienced huge losses, grief, heartache, a roller coaster of emotions, extreme highs and lows, diagnoses of PTSD and depression.

There are systems which have failed me and lots of people have let me down, while others have lifted me up and supported me.

Which brings me all the way to now. Over the week of 29 October to 5 November 2022, which is International Brain Tumour Awareness Week, I will be cycling 500 kilometres to raise funds for Brain Tumour Support NZ.

My favourite quote is the Nike slogan “Just Do It”. I want to be able to say “I Did It!”

That’s Why I Ride!

Louise Curtis
October 2022