In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Susie Church, 46, from Ludlow, Shropshire, had increasingly been plagued by intense migraines for which no remedies were effective. An MRI scan in 2010 revealed the teacher and artist had a glioblastoma (GBM). Susie underwent chemotherapy and operations to debulk the tumour and insert a shunt to drain excess fluid from her brain. She had radiotherapy but it made her so ill she ended up in intensive care. Susie died in January 2016. Following her death, her friend, the stand-up comic and actor Eddie Izzard, funded publication of a book of Susie’s paintings. Susie’s mum, Helen French, is supporting Brain Tumour Research’s call to increase Government funding to study the disease.
Helen tells Susie’s story…
Susie was very well loved by many people for her bubbly personality, and she was always wanting to help others. She was passionate about painting and always wanted to get other people interested in it too; any spare moment she would be sketching. She trained as an architect, and she went on to teach design technology in Surrey in a building she had designed.
I had known Susie wasn’t right, and I encouraged her to pursue treatment for her migraines which reached the stage where she had been briefly hospitalised. I was later to learn that it was the MRI to seek a reason for the migraines that had revealed the early signs of glioblastoma (GBM).
“I really wanted her to see a specialist, but she kept saying she was fine. What I didn’t know was that she had already been diagnosed with a brain tumour.”
In 2014, I met Susie in Manchester. Her two brothers, Edward and George, had also turned up. It transpired they were there to support her when she told me her terrible news.
She’d been diagnosed four years earlier, but she said she didn’t want to make too much of it, and she wanted to protect me because I was nursing my husband who was very unwell at the time.
“She was told she had a brain tumour while on her lunch break, and then she went back to teach in the afternoon.”
I knew very little about brain tumours and naively thought Susie would be treated and would recover. She’d had several operations to debulk the tumour; she also underwent surgery to insert a shunt because she had a build-up of excess fluid on her brain. The fluid kept leaking and she needed to be taken to hospital by ambulance several times.
Susie had radiotherapy but it made her desperately ill. It became so bad that she was rushed to University College Hospital in London.
“She ended up in intensive care, and we were told she had a 95% chance of dying. Her speech, sight and balance deteriorated; it was awful but the support from her friends was amazing. I still keep in contact with them, and their support has been wonderful.”
After coming out of intensive care, Susie would leave the hospital with a drip attached to her so she could go to a nearby shop and buy Portuguese tarts which she loved.
When Susie received visitors at the hospital, she continued her love of teaching by showing them how to draw and paint on her iPad. The device enabled her to paint in hospital until her eyesight and hand-eye coordination made it too difficult. Susie was only 52 years old when she died on 18 January 2016. She left two sons, Alex, then 19, and Olly, then 17.
I was shocked how much the brain tumour changed Susie and the impact it had on the family, and it was devastating when it caused her to lose her speech. With modern technology you would think that something could have been done to help her, but it seems desperately wrong that brain cancer should only get 1% of the cancer research spend.
“I can’t help thinking that maybe some politicians need to go through what we’ve been through to better understand brain tumours!”
With cancer, people think you’ll have chemotherapy or radiotherapy and you’ll be ok, but with brain tumours it affects your motor skills and impacts everything.
Susie met Eddie Izzard when they were both at Sheffield University. Eddie admired her paintings so much and said he wanted to do something with them after she died, so he offered to fund publication of a book showing a selection of her paintings. ‘Catching the Light’, which includes a foreword by Eddie, was launched at the Ludlow Assembly Rooms in September 2019. It can be ordered from Castle Bookshop in Ludlow; all proceeds are shared between her two boys and Brain Tumour Research.
I’m supporting Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, and prompt a parliamentary debate. It’s calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
I’ve signed the petition and I’m urging others to do so. There have been so many advances in medicine and other cancers so why should brain tumours be the Cinderella?
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 historically 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.