My brain tumour experience inspired me to pursue nursing

Symptoms and brain tumour experience 

I had a seizure one night when I was at my grandparent’s house during lockdown. They heard me shouting and came in to check on me. I was taken by ambulance to St John’s Hospital in Livingston. They were unable to find out what was going on with me and sent me home. A month later, it happened again after dinner. I was taken back to hospital and sent back home the same day. They thought there was nothing wrong with me. 

My mum was concerned about me, so I decided to move back in with her. When I was packing up my things, I collapsed again. This time, I was taken to the Royal Infirmary in Edinburgh. They gave me an MRI and EMT, as well as running blood tests. I was told it was probably nothing, and they put me on anti-seizure medication.

Diagnosis

The next day, the doctor took me into another room at the end of the corridor. They told me that they had found a swelling on my brain and kept me in hospital overnight. The next day, the doctors called my parents into the hospital. It was then I knew that something was wrong. The doctors told us that I had a tumour in my brain. My mum and dad were upset and silent when they heard the news.

A week later, the neurosurgeon told us exactly what the tumour was. I was just in shock. I did feel a bit of relief that it was only a grade two tumour and hadn’t spread anywhere else. It was good to know what I was dealing with, and what was going to happen. The neurosurgeon explained his plan to me and wanted me to start treatment straight away. 

Treatment

In September 2020, I had my operation at the Royal Infirmary in Edinburgh. When I came round, I couldn’t read, write or speak. I had a lot of fatigue and headaches too. Around two weeks after surgery, I started to recover and within the month I was able to speak and write again. 

I went to the surgeon for a review, and they said that the surgery went well. During the surgery, they were able to remove around 75% of the tumour. At that time, they didn’t think it would grow back in five to ten years.

Unfortunately, it did grow back the next year. In November 2021, they discovered that my brain tumour was growing again. At the Western General Hospital in Edinburgh, I had over six weeks of radiotherapy and twelve cycles of chemotherapy. The radiotherapy caused me to lose my hair, and I had some fatigue. The chemotherapy caused me to feel sick and tired. 

Side effects and mental health

I lost my hair in a band through the middle, and I couldn’t cover it up because of where it was. That was quite difficult. In the end, I cut my hair and donated it to the Little Princess Trust. 

With my scar on my head, I wasn’t able to cover it up as it was healing. Going out in public with a big scar on your head wasn’t great. 

I also had a skin reaction to the radiotherapy, which caused marks where the mask was across my face like sunburn. 

My anxiety was really affected as I was panicking about my scans and what could happen to me. There were nights where I just couldn’t sleep because I was worrying about them.

Teenage Cancer Trust

My nurse put me in touch with Nicola, the Teenage Cancer Trust Youth Support Co-ordinator. She invited me to all sorts of interesting things where I could meet people my own age. 

When I was first diagnosed, it was during the COVID-19 lockdown. Nicola put on online events such as painting sessions and online quizzes. All the materials were sent out to us and I thought it was really nice to have other people to talk to. I could see other people going through the same things as I was.

After COVID-19, we were able to go on cinema trips, an afternoon tea in Glasgow and a trip to Flynn’s Barn. It was so nice as I could meet lots of people there. It gave me people to talk to who could understand what I was going through. I could tell them things that I couldn’t tell anyone else.

Future plans

At the moment, I’m just having regular scans to check that it is not growing back. The hope is that my treatment has removed the tumour completely, and my next scan will come back clear. 

I have just started university in Edinburgh for Adult Nursing. The experience I went through reminded me that I wanted to become a nurse. When I finish University and start working, I hope to support others going through difficult times.

Advice to other young people 

My advice to other people would be to write down any questions you have for clinical staff, and make sure you ask them rather than googling for answers. I would also recommend making contact with people outside of the hospital to create a support network for yourself.