When optical advisor Jodie Boulton, 38, from Wales became a mum in 2020, she should have been enjoying those precious early years with her baby son. Instead, she began a six-year struggle for answers that would ultimately reveal a brain tumour the size of a satsuma.
Jodie tells her story…
After our son Cooper was born in 2020, I started experiencing headaches. I went back and forth to my GP numerous times over six years and it was repeatedly put down to anxiety after having a baby. I trusted that explanation, but deep down I knew something wasn’t right.
Years later, my periods stopped completely. I saw a different doctor who referred me to an endocrinologist in March 2025. I had an MRI scan, which led to concerns about my pituitary gland.
When I was finally told there was a mass, I felt angry and relieved at the same time; angry that I had suffered for six years without answers, but relieved that I finally knew the cause and hoped something could be done.
I was referred to University Hospital Cardiff and told the mass was as big as a satsuma and had likely been there for 15 to 20 years. Because of where it was located, it was affecting my hormones, which explained why my menstrual cycle had stopped. It still hasn’t returned.
My husband Gareth and I had only planned to have Cooper, but because it took so long to diagnose, if we had wanted more children, that option would have been taken from us.
The consultant said we could watch and wait or I could have surgery to remove it. I chose surgery because I had started developing balance problems and double vision, which I still have today. I just wanted it gone.
In June 2025, I had a 12-hour surgery. They removed 85% of the tumour, but 15% is wrapped around my optic nerve and couldn’t be removed. Thankfully, it was confirmed to be a low-grade meningioma. I was advised I may need radiotherapy for the remaining tumour, and we are currently watching and waiting.
The initial surgery to remove the tumour went well, but the aftercare was where everything went wrong. Ten days after surgery, my wound started oozing. I went to my GP and saw a student nurse who was concerned, but a senior nurse said it looked fine and dressed it with a wet dressing for 10 days. I knew something wasn’t right.
I raised my concerns during a follow-up call with my consultant and was invited back to Cardiff to be checked. By chance, my consultant was there. He lifted the dressing and was horrified. It was the wrong type of dressing and there were clear signs of infection.
I was told that I needed emergency surgery within 24 hours to remove infected tissue.
During surgery, they found the infection had spread into my bone and they had to remove part of my skull. I spent two weeks in hospital on strong antibiotics. I am now waiting to have a titanium plate fitted to reconstruct my skull.
I went for a scan in October 2025 and there was still some infection residue, so surgery was delayed. I had another scan in January and have a follow-up in this month, where I hope to finally have the plate fitted. In the meantime, I have to wear a hard hat everywhere I go to protect my skull.
It’s been incredibly difficult with a six-year-old. I have to be careful about trips and falls, and I rarely go out because of anxiety. I can’t work because of the health and safety risks, and I feel like I’ve lost my independence. I feel angry that if the wound had been treated properly, my life might already be back to normal.
In my job as an optician, part of my job was to perform optical coherence tomography (OCT) scans. We’ve even detected brain tumours before.
Before my diagnosis, I’d had weekly scans at work, and looking back, nothing was picked up. It just shows how complex these tumours can be.
I’ve found comfort in online meningioma support groups. Talking to others who understand really helps. Don’t keep it to yourself - share with family and friends.
My symptoms have now gone and I feel like I did 10 years ago. I still have one more surgery to go, but my story is one of hope and survival.
Last month, I completed the 10,000 Steps a Day in February challenge to raise funds for Brain Tumour Research. It helped me stay focused and support the funding that is so desperately needed.
Brain tumours are indiscriminate; they don’t care about your age or gender. I encourage everyone to get involved in taking on a challenge or making a donation to help fund the research that could change the story for brain tumour patients. Together, we can make a difference.
Jodie Boulton
March 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Jodie’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure
