In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Bank analyst Kat Charles was partway through a planned year of travel when she suffered a grand mal seizure in Costa Rica in March 2011 and had to return home. The 41-year-old, of Stony Stratford in Buckinghamshire, was initially told her tumour was low-grade and put on a ‘watch and wait’ monitoring approach. She became pregnant and was unable to have scans, but after her son was born in April 2013 Kat discovered her tumour was actually a grade 4 glioblastoma (GBM). She underwent radiotherapy, chemotherapy, two debulking surgeries and took part in a 13-month clinical trial. Ultimately, she sourced a personalised vaccine from America using £250,000 of crowdfunding donations, which she now takes every six months.
Kat Charles tells her story …
My husband, Jason and I were four months into a year-long trip when my brain tumour reared its ugly head. We had flown to Beijing and travelled down to South East Asia through China, taking in Vietnam, Cambodia and Thailand before flying to Singapore, Australia and then onto Costa Rica to start our travels up through Central America to Mexico.
“It was as we were lying in bed in Costa Rica in March 2011 that I suffered a grand mal seizure and had to be taken to a hospital in Manuel Antonio.”
I remember going to bed feeling tired and waking up in the ambulance. It was scary for Jason because it happened so suddenly, without me having any other symptoms.
The doctors told me initially that there was nothing wrong with me and sent me away, but I got a call after returning to our accommodation, telling me that I needed to go to Hospital CIMA in San Jose.
“I made the 80-mile journey there and underwent further scans before receiving the shocking news that I had a brain tumour.”
We had comprehensive travel insurance through my husband’s job and so a doctor was flown out to us from the UK to accompany us on a flight home. We had been travelling economy but were upgraded to first class, not that I remember much about it. After returning home, I went to the John Radcliffe (JR) Hospital in Oxford for more scans where doctors told me my tumour was low-grade and put me on a ‘watch and wait’ monitoring approach.
“I fell pregnant after that and wasn’t able to have any scans until my son, Jacob was born in April 2013.”
When I did, I was told I had brain cancer. I was in absolute shock and alone in my house with my baby when I got the news. I phoned my mum, who lives nearby, and she came straight over to comfort me.
In August 2013, I was admitted to the National Hospital for Neurology and Neurosurgery (NHNN) in Queen’s Square, London, for a biopsy. The results confirmed I had a grade 4 glioblastoma (GBM), so I returned to Oxford to have six weeks of combined radiotherapy with chemotherapy followed by five more cycles of chemo.
“I didn’t feel too bad on the radiation, but the chemo made really sick and so fatigued that I barely had the energy to get up.”
My treatment went well, but by April 2014 I had started slurring my speech and couldn’t move my left hand. I was really scared and the severity of my symptoms led to me being scheduled for a debulking surgery at NHNN. I didn’t tell my husband about it beforehand because it was his dad’s funeral the day before and I didn’t him to worry about me when he already had so much on his mind.
“The operation took about eight hours and as soon as I woke up my symptoms were gone; I couldn’t believe it.”
Unfortunately, I was still in hospital for my son’s first birthday. Jason stayed with me throughout, so my mum and dad brought Jacob to London so we could all go to the park together. My recovery took about six weeks and I also needed a hip replacement because of damage caused by the steroids I was taking.
For 13 months starting September 2014, I took part in a phase one clinical trial. I had to go to London fortnightly to have my bloods taken and do several other tests.
“In October 2015, I had another debulking surgery, which I was awake for throughout, and six months later I went to America to have a personalised vaccine made from my dendritic cells.”
My husband set up a crowdfunding page called Kat’s Cure, which raised £250,000 in three weeks and allowed us the means to be able to access the DCVax treatment. At first I had to have weekly vaccines but now I go to London for them every six months. Each one costs £1,000.
“In 2018, I returned to Costa Rica on a family holiday and did the things that Jason and I had missed out on doing when I fell ill.”
It felt like a real achievement to get back there after everything we’d gone through, especially considering I was told I had just three months to live at one point.
I have been left with slower processing skills because of my last surgery. I also now suffer from anxiety and need to take daily anti-seizure medication, and I think I’ve missed out on a lot of bonding time with my son.
“However, I know that I’m really lucky to be alive 11 years after being diagnosed with a GBM, especially given that the average prognosis for this type of tumour is just 12-18 months.”
Earlier this year, I fundraised for Brain Tumour Research by taking part in its 10,000 Steps a Day in February challenge. Seeing other people share their stories as part of that campaign is what inspired me to do the same.
“I hope my story gives hope to other brain tumour patients.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure