“Supporting a loved one with brain cancer has shown just how urgently we need more research closer to home.” – Elisabeth and Steph’s experience

Since being diagnosed with glioblastoma, a fast‑growing type of brain cancer, Joanna from Ilkley has been closely supported by her family and friends.

Her mum, Elisabeth, and lifelong friend Steph are sharing their experiences to highlight the need for more brain cancer research in Yorkshire, and to raise awareness of EPIC-GB, a new programme of pioneering brain cancer clinical trials funded by Yorkshire Cancer Research.

Elisabeth’s experience: Joanna’s mum

Elisabeth has lived in West Yorkshire all her life, settling in Ilkley in 1981, where she raised her four children and built a career in education. Her daughter, Joanna, her second eldest, was born at Harrogate Hospital in 1975 and like Elisabeth, has stayed close to the region.  

In September last year, Elisabeth received a phone call from Joanna’s partner, Mark, to say she had suddenly become unwell while they were on holiday in Crete.

Elisabeth said: “Joanna had been enjoying a relaxing afternoon, lying on a sunbed reading, when her vision suddenly became blurred. Moments later, when she tried to speak, her words came out as complete gibberish. Mark acted quickly and Joanna was taken to hospital, where an MRI scan revealed a tumour on her brain.”

After several days in hospital in Crete, arrangements were made to fly Joanna home to Yorkshire. She was first admitted to Airedale Hospital for further tests before being referred to cancer specialists in Leeds. She was diagnosed with a grade 4 glioblastoma. 

While Joanna’s eyesight returned quickly, the tumour left her with lasting speech difficulties. Joanna lives just five minutes away from Elisabeth, something she says has been vitally important since the diagnosis. As Joanna is no longer able to drive, Elisabeth now supports her with day-to-day tasks, appointments and hospital visits.

Joanna was referred to a neurosurgeon in Leeds, where she underwent surgery in October to remove as much of the tumour as possible.  

Elisabeth said: “The surgeon was very honest with us about the treatment options available to Joanna and the average life expectancy. Everything happened so quickly that we were barely keeping up. You don’t really get the time to process what it all means.”

Following surgery, Joanna began a course of radiotherapy alongside chemotherapy. In January, she began an additional course of chemotherapy and once this is complete, there will be limited treatment options available to her. 

After beginning to explore research into brain cancers more closely, Elisabeth learned about EPIC-GB – a programme of pioneering brain cancer clinical trials funded by Yorkshire Cancer Research, designed to improve how treatments are developed for people diagnosed with glioblastoma.

Clinical trials involving people with glioblastoma are urgently needed to find out if different cancer drugs are likely to get into the brain work.

The EPIC-GB trials would enable people to start drug treatments before surgery. Tumour tissue removed during the operation can then be studied, creating a valuable ‘window of opportunity’ to quickly understand which drugs reach the tumour and are likely to be effective.

By identifying promising treatments as early as possible, people with recurring glioblastoma can continue those treatments, or stop them if they don't get into the brain. This helps the person avoid unnecessary side effects and move to alternative and potentially more effective options more quickly.

Fundraising has played a major role in Elisabeth and her family’s life, with friends, relatives and the local community coming together to raise funds so Joanna can take part in a clinical trial offering immunotherapy treatment in Germany. 

To help his sister raise the vital funds she needs, Elisabeth’s youngest son, Sam, will be taking on the Yorkshire Coast to Coast (C2C) running challenge, an extraordinary 304km distance crossing the Lake District, Yorkshire Dales and North Yorkshire Moors. People in the local community have also organised fundraising events, including raffles and marathon challenges.

Elisabeth says she has been overwhelmed by people’s kindness and generosity but is clear fundraising should not be the main route to hope for families facing brain cancer. 

She said: "Not everyone can raise this kind of money, and they shouldn’t have to. Progress shouldn’t depend on how much money you can find; it should depend on research."

Steph’s experience: Joanna’s best friend

Steph Cooke from Harrogate first met Joanna when they were 15. Quickly, they forged a strong bond, and Steph describes Joanna, or as she lovingly calls her “Joey”, as “more like a sister”. 

Although Steph has lived much of her adult life abroad, Yorkshire has always felt like home. After moving back to Harrogate after 30 years, being close to Joanna has meant everything, especially since her diagnosis.  

Steph said: “Wherever I lived, Joey would come and visit me. We even lived together in London at one point. She knows my family and I know hers. We’ve had so many fun, silly times together and so many adventures. She loves life and lights up every room she walks into.”

Steph was also on holiday when Joanna first became unwell in Crete and received a phone call the following day.

She said: “She rang me and didn’t sound like herself at all; almost like she’d had a stroke. At first, she was joking around, saying she couldn’t believe this was happening on the first day of her holiday. That’s just Joey. She always laughs through things.”

Since Joanna’s diagnosis with glioblastoma, Steph says it has been difficult to come to terms with how few treatment options are available. 

Steph travels regularly between Harrogate and Ilkley to see Joanna, and the pair are determined to continue doing the things they love the most.

Steph said: “Travel has always been our thing. We recently went on holiday to Abu Dhabi, and those trips mean the world. They’re about joy, normality and making memories while we can.” 

Alongside making memories, Steph is helping Joanna with emails, letters and hospital appointments, as well as helping her explore potential treatment and supporting fundraising events. Steph has also been learning more about new brain cancer research taking place in the region.

She said: “There has been so little progress with glioblastoma for decades. We’ve seen incredible advances in other cancers but desperately need more research into this terrible disease.”

Steph believes research closer to home like EPIC-GB could make a life-changing difference for families.

She said: “If there were more trials and options in places like Leeds, Sheffield or Hull, people could get treatment and still be home for tea. When you’re already going through something so difficult, being sent far away from home only make things harder.”