Life Is What You Make It

Nicole White’s Story

As told to Liz Olney

When she was 17 years old, Nicole White was diagnosed with a brain tumour. As a teenager, this diagnosis changed everything, and set Nicole on a long, challenging journey. Now, however, just five years later, she is in her final year of nursing study at Otago Polytechnic, preparing to work full time as a nurse next year, and squeezing in her hobbies of netball, swimming, tramping and running whenever she can. Just recently, she completed her training to become a volunteer Support Friend for Brain Tumour Support NZ before raising $4,415 for the charity by running a half marathon!

Nicole’s story is one of hope, and she wants anyone who reads it to know that even though having a brain tumour can be a life-altering, difficult experience, there’s light at the end of the tunnel.

Born and raised in Christchurch, Nicole grew up in a small, rural town called Oxford. She is a member of a very tight-knit family, with her mum, dad, three older siblings, and two nephews being her biggest and best support system. From a young age, Nicole’s mum (who is a nurse and midwife) has been her biggest inspiration and Nicole is very proud to be following in her mum’s footsteps. Nicole has many fond memories with her family, including tramping trips with her dad, which she says have been one of the highlights of her life!

In March 2016, at just 16 years old, and whilst driving a car, Nicole had her first noticeable absent seizure. Luckily, her mum had some pretty quick reflexes and managed to keep the car on the road during the event!

A neurologist thought this was going to be a one-off occurrence, but she had a second noticeable absence seizure in November and was subsequently put on epilepsy medication. Then, in May 2017, a CT scan identified that Nicole had a brain tumour.

After surgery to remove the tumour that November, Nicole’s team were confident that the tumour would not grow back. Unfortunately, the tumour later re-appeared, so Nicole underwent a second craniotomy in July 2019 to have it removed. Again, medical staff thought that this would be the end of it, however in 2020, the tumour showed up for a third time in a routine scan.

It was at this point that Nicole’s team decided surgery alone would not be adequate treatment. Thankfully, Nicole was able to secure special funding for the oral chemotherapy medication that she has now been on for two years. Nicole credits this medication with stopping the tumour from progressing and allowing her to continue with her studies and do the things she loves.

Nicole’s journey throughout this time was difficult. Being 17 years old at the time of her initial diagnosis, she found herself in a no man’s land between childhood and adulthood, and struggled to find support systems during this time. The long recovery from neurosurgery was rough – Nicole felt as though she was overreacting because she never looked unwell and the people around her always told her how well she was doing.

However, appearances didn’t match how Nicole felt. She was tired, frustrated, and felt very alone. Both her education and social life were also affected, with Nicole having to miss her NCEA level 3 exams, take breaks from university, and lose out on enjoying many experiences with her peers.

Nonetheless, Nicole recognizes that one of her biggest challenges has been the unknown. Her brain tumour, while low grade, is very rare, and there isn’t much research on how to treat it, and the uncertainty that comes with this has been extremely difficult for Nicole.

Learning to Cope

While Nicole has been resilient enough to keep pushing through the obstacles she has faced, she also acknowledges that she did not always have the best coping mechanisms. Nicole didn’t want anyone to know about what she was going through when she was first diagnosed, and kept her situation hidden for a long time. Aside from the odd joke – Nicole admits she has a pretty dark sense of humour – she would keep her true feelings to herself, worrying that she would upset or stress out her family.

“Although the journey is hard, you will learn so many amazing life lessons that will shape who you are as a person and who you will be as a nurse” ~ Nicole White

However, more recently, Nicole has been actively focussing on utilising healthier coping mechanisms, such as keeping up with her physical activity, helping to raise awareness about brain tumours, and actually talking about how she is feeling to people. These techniques have helped Nicole immensely. She is also well aware of the amazing support she has received throughout her journey from her parents, her siblings, and her close friends, who have always been there for her.

Nicole has taken many learnings from her entire experience, including that she is much stronger than she thought she was. She now knows that it’s OK to ask for help; that it’s OK to talk about your real feelings; that it’s OK to feel sad and angry about everything she’s going through and everything she’s had to go through in the past.

Accepting Uncertainty

Importantly, Nicole also realised that her initial mindset – feeling like she wasn’t allowed to be upset because there were people out there who had it worse than she did – was flawed, and she now understands the importance of leaning into her emotions. While it was a tough pill to swallow, Nicole also learnt the hard truth that nothing is certain. As stated earlier, the rarity of her brain tumour has resulted in significant uncertainty for Nicole – but accepting this uncertainty as a part of life has allowed her to continue to move forward.

In fact, Nicole actually thinks that in some way, having a brain tumour has pushed her to better herself. She says that people often underestimated her abilities after her diagnosis and thought that because she had a brain tumour, she wouldn’t be able to do things. As a stubborn person, Nicole decided she wanted to prove them wrong, and prove them wrong she did!

Importantly, her medical journey (and the impacts it has had on many other aspects of her life) has given her a strong appreciation of the patient’s side of the story. Nicole considers this insight to be invaluable as she gets closer and closer to becoming qualified – she knows that understanding and relating to a patient’s journey will help her be a better nurse.

Looking to the Future

Looking forward, Nicole’s immediate focus is graduating from Otago Polytechnic at the end of this year – an achievement she has been looking forward to for a very long time. She also wants to head overseas, and would love to volunteer in Nepal in the future. Working with Brain Tumour Support NZ while completing her half marathon fundraiser has also been a highlight for Nicole, and she has a strong desire to continue to volunteer with Brain Tumour Support NZ and carry on raising awareness of a cause so close to her heart.

At the end of the day, Nicole has been through a lot, but has learnt a lot along the way. She says that, if she had the opportunity to talk to her younger self, she would tell herself that “although the journey is hard, you will learn so many amazing life lessons that will shape who you are as a person and who you will be as a nurse”.

Nicole would also pass on that talking about your feelings, opening up, and having discussions about your situation with the people who are there to help you will make your journey much easier. Ultimately, she would want young Nicole to know that she should “keep pushing, because things will get good” – and this mentality is what she hopes anyone reading this will take from her story.

Liz Olney
October 2022