In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Briar Butler from Kendal in Cumbria, was just 30 when, in June 2018, she received the devastating news that she had an incurable brain tumour. Her diagnosis came after years of suffering from debilitating mental health problems. Briar, a trainee accountant and keen pole dancer, underwent surgery to debulk the tumour and several more operations after she developed infections in her skull. The mum-of-one spent the final few months of her life in a care home, which meant she was unable to see her loved ones when restrictions were imposed during the COVID-19 pandemic. Briar died on 17 August 2021, leaving her four sisters, her mum Beverley and her six-year-old Noah devastated.
Briar’s mum Beverley tells her story…
I always knew there was something different about Briar. She was my firstborn child; the oldest of five sisters. She was highly intelligent and capable but from a young age, she suffered from mental health problems, which only got worse as she grew older.
“Eventually, as a young adult, she was diagnosed with bipolar and borderline personality disorder. I’ve since discovered that the symptoms of these conditions were likely to have been related to her brain tumour.”
On 27 February 2014, Briar gave birth to a beautiful baby boy; my first grandson, Noah. Like any new mum, Briar was besotted with her new-born baby. But she’d come off her medication during pregnancy and when Noah arrived, she believed she no longer needed the meds and severe anxiety took hold. When she split up with Noah’s dad, her heart was broken and she really began to struggle. Just before Noah’s second birthday, she was struggling so much, she asked me to look after Noah at my home in Dalton-in-Furness and I became his legal guardian.
She would go through phases of feeling well enough to have Noah and he would go to her flat for a few days but her mental illness and paranoia would soon set in again and he’d have to come home to me. She never set out to cause him any harm but she was in a toxic cycle of feeling better and then plunging into the depths of despair again. She found it hard to accept help from family and friends. On two occasions, I became so worried about her, I took her to Furness General Hospital but she was sent away, without further investigation or any treatment. Another time, in June 2018, my mother’s instinct told me that something was really wrong with Briar, so I called the police and asked them to do a welfare check.
The police visited her and arranged for her to be taken to Westmorland General Hospital in Kendal. When she arrived, the medics noticed her expression was very glazed and she’d lost control of her bladder, so they rushed her in for a CT scan. What happened next was so unexpected; beyond our wildest dreams.
“The scan revealed a mass in her brain, so she was blue-lighted to Royal Preston Hospital. They thought she wouldn’t make it.”
When Briar arrived at Royal Preston, an MRI confirmed a brain tumour. She also had severe hydrocephalus, a build-up of fluid causing pressure in her head. They performed an operation to relieve the pressure, which gave her some instant reprieve. A week later, she had a second operation, during which the neurosurgeon debulked the tumour and a sample of the tissue was taken for a biopsy. The results of the histology were devastating. Briar had a glioblastoma multiforme (GBM), a highly aggressive brain tumour, carrying with it a devastatingly short prognosis of just 12-18 months. I was told that the tumour was thought to be the result of a birth defect from conception and that her unstable behaviour, which had been attributed to bipolar disorder, may have actually been a symptom of her brain tumour all along.
As I tried to digest this heart-breaking news, I begged the medics not to tell Briar just how bad things were. I knew that in her mentally fragile state, she wouldn’t be able to handle the shock of knowing she had a terminal illness. I wanted to protect and shield her from any more pain. I was told that lawfully, they had to tell her the truth but they decided to give her the diagnosis when she was coming round from morphine, so she didn’t really take it in.
Briar stayed in hospital for a couple of weeks and during that time she got several infections in her wound, which had to be treated. When they discharged her, she got another infection, this time in her bone skull flap, which caused the whole front of her skull to balloon. I quickly drove her back to Preston and she was readmitted. When the doctors saw her, they couldn’t believe it. She had cerebral spinal fluid (CSF) seeping into the front of her brain.
Briar was taken into theatre for more surgery to drain the excess fluid. As she was being wheeled off, she was sobbing saying she couldn’t do it but she was stronger than she gave herself credit for. When she came out of theatre, she had to have a drain in her back, which required her to lay flat without moving for two weeks. Sadly, her troubles continued when she contracted yet another infection, this time gangrene, caused by severe necrosis. Briar then endured another operation, which involved removing skin from her leg to treat the infected area on her head.
She was in hospital for weeks, recovering. The stronger she got, the more she wanted to leave hospital and she would become really defiant. She used to ask me to sneak her out for a couple of hours to go and get her nails done. She was so feisty! One day, we had a terrible argument and we were screaming and shouting at one another. She couldn’t understand why she wasn’t being discharged and she said: ‘it’s not as if I’m not dying’ and in the heat of the moment, I blurted out: ‘you are, Briar’. She didn’t believe me and called me a liar. The next day, however, she spoke with the doctors and nurses and they told her the truth. They said she only had six months to live. I don’t think it really sank in but she called me and cried and said she wanted to come home to me and Noah.
In September 2018, Briar was able to leave hospital briefly, in order to see Noah starting school. He was so happy to have his mum there for his big day. He said: ‘my mummy’s better’ and he commented that her beautiful hair had grown back. It hadn’t; she was just wearing a wig but it pleased him so much to see her looking more like her old self. He had no idea at that point that he was losing his mummy.
When Briar was discharged from hospital, she came home to me, so I could help look after her and so she could spend as much time as possible with Noah. In the run-up to Christmas, Briar feared it would be her last one with Noah and she was determined to make it really special. Wanting to help with her dying wish, her friend Esha galvanised the community to fundraise to help pay for a once-in-a-lifetime trip to Lapland to visit Santa Claus. They set up a crowdfunding page and with the support of our amazing local community, raised enough to fund the trip. However, by December it became clear that Briar wouldn’t be well enough to travel and so, instead, they went to Center Parcs and made memories together there.
“Once she knew she was dying, Briar always said the thing she was most frightened of was leaving Noah without a mummy. She was also worried that nobody would remember she existed.”
On Christmas Day, Briar and I were in the sitting room, watching Noah playing on the floor with toys. I gave Briar her present from me, which was a handmade wig I’d had specially made for her by a professional wig maker. It was beautiful, long, golden locks, in the same style she’d had before she lost her hair through treatment. When she opened the gift, she broke down in tears. Then all of a sudden, she was on her phone ordering a taxi to take her into town. I couldn’t stop her. She went out on a massive drinking binge and ended up back in hospital. It was so destructive; she was still on antibiotics and her anti-psychotic medication. She’d also just come off steroids. It was soul-destroying to see her behave in that way and I feared it was my fault, as she’d reacted so badly to receiving the wig.
In January, Briar’s condition was deteriorating rapidly and she moved into St Mary’s Hospice in Ulverston, where she stayed for three months. The hospice is only three miles away from my house, so Noah and I would visit every day. Noah spent his fifth birthday there.
“We went to the hospice on Valentine’s Day as well. I dressed Noah in a smart little suit and he showered his mummy with his heartfelt gifts.”
To our surprise, Briar gradually improved during her time in the hospice and eventually, she was well enough to be discharged. She moved back into her flat and carers came twice a day to help look after her. During this time, however, her mental state become extremely unstable and she was really volatile and unpredictable. One day she lashed out, verbally attacking me and Noah. Social services got involved and told me to make the impossible choice between looking after my grandson or seeing my dying daughter. It was horrendous but I had to protect Noah. Things got so bad I had to go to court to get a restraining order against Briar. In court, Briar said to the judge that she wanted to see her son. The judge lambasted the social services for asking me to choose between her and Noah and said it was up to me as Briar’s mother and Noah’s grandmother and legal guardian, to make an informed decision about when and where it was appropriate for these two people, I loved so much to see another. I always had both of their best interests at heart.
By September 2019, Briar had lost use of one of her hands and she was in a wheelchair. She went into a Risedale Abbey Meadow care home in Barrow-in-Furness. She was there for a couple of months before I managed to make amends and re-kindle my relationship with her. Once again, Noah and I would visit daily. All the staff were so lovely there and would make a fuss of Noah and look after him, as he was only allowed to see her for short periods. The nurses would take him while I stayed with Briar on my own. There were days when she didn’t recognise me but I spent all day, every day with her, wanting to cling on to every precious moment.
Noah and I spent Christmas and New Year’s Eve with Briar in the home and tried to make it as special and memorable for him as possible. Then, in March 2020, COVID-19 hit and everything changed. Having worked so hard to re-establish our relationship, all of a sudden, we weren’t allowed to see each other, due to the restrictions. I sent my partner Keith out to try to get hold of a Facebook Portal device, so we could stay in touch easily by video calls. He drove miles to get one, as they seemed to be sold out everywhere.
“By the middle of June 2020, Briar stopped responding to calls, as she was in decline. The carers started sending and replying to messaging on her behalf.”
One day, at the end of July, I got a message from the Macmillan nurses, telling me that she was nearing the end of her life. I was sneaked in, so I could see her before she died but Noah wasn’t able to see Briar to give his mummy one last hug. It was heart-breaking. I spent the weekend before she passed by her side, singing the nursery rhymes I used to sing to her when she was a baby. She had two syringe drivers in, pumping her full of morphine but she was fighting for her life and I could see she was agitated and struggling. I spoke to her softly and gave her permission to go. On Monday 17 August 2020, at 9.13am, she took her last breath. She died at exactly the same time of day as she was born.
Noah had asked me a few days previously if his mummy was going to die. The question came when we were out walking the dog one day. I told him the truth. We’d always told him mummy had a ‘germ’ in her head. When the news headlines were dominated by coronavirus, Noah put two and two together and thought that the ‘germ’ in Briar’s brain was COVID. He still tells people now that that was how she died.
“Briar didn’t have a traditional funeral. Instead, she was cremated and I arranged for her ashes to be sent up in fireworks in a display we put on at Abbey House Hotel & Gardens in Barrow-in-Furness.”
It was so lovely for Noah to be able to see his mummy light up the sky on her way to heaven. The display was set to the song Explosions by Ellie Goulding, a singer Briar loved. I remember her pole dancing to that piece of music. She was so talented. She was also training to be an accountant. She never had to try hard at school but always did so well. Things came naturally to her but it was always her mental health that always got in the way of her achieving her dreams.
As it’s coming up to the first anniversary of Briar’s death, I wanted to do something positive to mark the occasion and to give something back. I heard about the Cycle 274 Miles in August Challenge to raise money for Brain Tumour Research and asked Noah if he wanted to be involved. He jumped at the chance, having recently learned to cycle after I bought him his first ever bike. Noah is now seven and suffers from low self-esteem, anxiety and attachment disorder. He took to cycling immediately and learning to ride has given him a huge confidence boost and something really positive to focus on after all the heartache and trauma he has been through. We have bought a memorial bench for Briar, to be installed at the Round House Hub & Café on Walney Island, which Noah will be cycling past during his challenge. It will have a plaque on it commemorating Briar and I’ve told Noah he can stop there for a rest and a snack during his rides.
Watching his mum change physically and emotionally was so hard for Noah to process at such a young and tender age. He always says that his mummy left him the day she went into hospital. He talks about the long, beautiful golden hair she had one minute and how suddenly, it was gone and he lost the mummy he knew and loved.
Noah’s fundraising challenge is just the start of what I hope will be a longstanding relationship with Brain Tumour Research. I want to raise enough money to fund a day of research at one of the charity’s Centres of Excellence, which will mean that Noah can have a commemorative tile placed in Briar’s memory.
I feel lost without Briar but Noah gives me a reason to get up every day and to carry on. Noah is her double; hyper intelligent for his age, just like Briar, with a great vocabulary. She had a real talent for maths and was exceptionally creative and I can see that Noah will be just the same. One thing I know for certain is that in spite of her struggles, Briar loved Noah with all her heart. She adored him and she tried her best with him from the day he was born. I will continue to love and care for him for the rest of my days and I will ensure that his darling mummy is never forgotten.
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.