Back On The Pitch

By Sandi Van Barneveld
Edited by Liz Olney

Sandi Van Barneveld likes to keep busy. In 2017, aged 45, she was the Canterbury representative of a national organisation, working as a part-time teacher-aide, studying for a certificate in education, a wife, mum to three very active boys, and playing club football in Christchurch. Then, following a seizure at home, Sandi was diagnosed with a grade 2 oligodendroglioma brain tumour, and her life changed dramatically.

“Good morning Sandra, I’m Dr Emily. How are you feeling?”

Those are the first words I recall from that Friday morning, 13th January 2017. Next came the life changing words I will never forget: “You will see on this scan that you have a mass here and here”. At 2.32am that morning, I had had a seizure while lying in bed. My husband called the ambulance and I was awake the whole journey to the hospital talking with the paramedics. As I entered A&E, my last memory was how bright the fluoro lights were. Around 7.00am - nearly an hour later – my next memory was Dr Emily’s spoken words. This was my introduction to my new life - a life with brain tumours.

I had no idea that there was anything wrong. I had absolutely no signs at all - no headaches, no blurred vision, absolutely nothing. I was still playing football, as I have done for years, and running around after my three boys. At the time of my diagnosis I was 45 years old, and my boys were eleven, eight and six. In fact, just two days before my seizure, I had taken them to the Waimakariri Gorge with a friend, her children and the dogs for a day of swimming and fun in the river.

Things went by quickly during those first few days in hospital. I had a huge number of friends come visit, which was lovely but so exhausting. After a number of discussions with my brilliant neurosurgeon, the plan of attack was decided. “Aggressive surgery” was going to be our best bet, so a right frontal craniotomy was scheduled for Thursday 19th January. I was allowed to go home for the days before my surgery as long as I was back at the hospital on Wednesday afternoon. These days were a blur - all I remember thinking is: “just get this thing out, I have stuff to do. I haven’t got time for this”.

As expected, the surgery went well. I was diagnosed with a grade 2 oligodendroglioma, with one massive mass on the right frontal cortex and a smaller tumour on the left hand side above my ear. The surgeons managed to remove 95% of the tumour in my frontal cortex, with the remaining 5% being too risky to take out. After almost eight hours of surgery, the team decided it would be best to monitor the tumour on the left hand side, rather than proceed with its removal. I had been under the anaesthetic too long and would have needed to be turned over – the risk of this didn’t warrant the further surgery.

I recovered well post-surgery and was allowed home the following Monday or Tuesday, after not even a week! I was so pleased to be home. My husband had brought a bed downstairs for me so the children knew that when I was asleep, they had to be quiet. This was a concerning time for them, but my positive attitude helped them immensely. In my mind, my mantra was “I need to get Scott (my youngest) to 21” and to this day, this has not waivered.

As a Mum, resting did not come naturally and I continued to suffer from mild daily headaches. These were probably the hardest part of my recovery and it wasn’t until a follow up appointment with the neurosurgeon a couple of months later, where he insisted I rest, that the headaches stopped. I was a slow learner for sure, but from then on I learned not to feel guilty about sleeping during the day. I also learnt the actual seriousness of this, my new life.

It took a long time to accept that I needed to slow down, but 6 years on, I can say that I listen to my body – I can now lie on the couch and sleep very easily in the afternoon!

At the time all of this was happening, I was quite involved with a couple of organisations – mainly the New Zealand Association of Gifted Children, where I was the Canterbury representative on the National Board. I was also in the process of completing a Certificate of Effective Practice in Gifted Education, which I continued with because I was so close to finishing it. Needless to say, when the neurosurgeon found out about that, he was not happy! I did complete this course eventually - it took a few more months than expected - but because of my circumstances the tutor allowed me numerous extensions to get modules in on time. Completing this was quite an achievement, if I do say so myself!

I continued my roles on various committees without really taking a break, still not realising the severity of my ‘brain injury’. I was also a Teacher Aide (for six hours a week) at my sons’ school and I returned to this role in Term Two, several months post-surgery. Life was largely continuing as normal, but I had given up on football being in my life anymore. However, nobody had actually told me I couldn’t play, so in June 2017, after some encouragement from my husband – and deciding that I would not header the ball in any situation - my team allowed me to re-join and I played my first game for the season. Wow, that feeling at the final whistle was exhilarating! I then decided that football had to be part of my recovery and continued playing for the rest of the season.

Routine MRIs became part of my life over the next few years. In October 2020, the news came that there had been enough growth on the tumours to warrant some action. My first oncology appointment was scheduled for 9th December 2020 and for the first time, I found this truly confronting. I remember leaving the appointment and crying - really crying – at how REAL this was.

Even though I remember the neurosurgeon saying to me back in 2017: “this is the start of a long ongoing relationship between us”, it had never really hit home until then. I had things to do, girls’ weekends away, football tournaments, bringing up my children, etc. I had felt fine and the situation was under control and now this - CHEMO! Fortunately, I didn’t have too much trouble during the six months of treatment. However, this period was also the first time that I felt like a REAL cancer patient; the first time that the severity of what I live with really hit home - not bad eh? I’m not sure what world I was living in before then, but whatever it was, it had served me well as it got me through it all.

I had survived chemotherapy and felt like a million dollars once I completed the sixth cycle. It was only then that I realised how hard chemo was and, looking back, how exhausted I was. I was still working six hours a week in my Teacher Aide job and only took one day off during this time. I remember feeling so proud that I was to be able to continue on with my life despite the interruption of this bloody chemo. I finished the treatment in July 2021, and for the next month, I rode a wave of euphoria. I remember never having felt so good - the chemo was successful and reduced the size of the tumours significantly - everything was wonderful.

Unfortunately, as the saying goes, all good things must come to an end, and in this world of brain tumours, this came to an abrupt end for sure. On 9th August 2021, I started having strange episodes where I was completely conscious, but would stare at something (normally people) waiting to see what they would do next. I was unable to stop myself until eventually I would snap out of it and continue with whatever I was doing. I now know these to be partial seizures, but at the time, I had no idea what was happening. I would have probably two or three of these episodes a day. Then, on the night of Thursday 12th August, I went to bed around 9.45pm and proceeded to have a huge seizure. I was very aware what was happening this time and could hear my husband yelling out to my eldest son to call the ambulance. This memory will always stay with me.

Fortunately, our two younger sons were asleep and didn’t hear anything. I was rushed to hospital, where I had another seizure. I underwent the usual MRI and CAT scans, but nothing showed why this happened. To this day, I still don’t know what caused the second lot of seizures and have realised I never will. Nonetheless, I had to go another year without driving, meaning I had to really depend on people. This is something that takes a huge amount of strength to do when you’re an independent person, but is necessary, and has now become something I do without hesitation. The upshot of this time was that my husband bought me an e-scooter! This has proven a fun way to get around and I still use it when I can today.

Fast forward to April 2023. I remain optimistic that the medical world will come up with a more effective way of treating brain tumours.

I will continue this journey in the positive way I started it - like a couple of tumours are going to keep me down? I don’t think so!

I now do volunteer work at the SPCA, am President of my football club, participate in Community Patrols twice a month, and am hoping to be a part of Brain Tumour Support NZ in some capacity.

Thank you for reading my story and I hope it will help you find some inspiration to keep you going. When I ask my children if they ever think about the fact that I have brain tumours, they say hardly ever. It's only when I’m frustrated and seem to get angry quickly that they remember, so this is one thing I have to keep in mind myself. Looking forward, I will continue to take my anti-seizure medication, keep a positive outlook, and (hopefully) be able to inspire someone with my story.

Sandi van Barneveld
April 2023