After Helen Bulbeck’s daughter Megan was diagnosed with a brain tumour, the whole family was left isolated with little to no support. Now she is using this experience, plus her own journey with cancer, to help run the UK’s leading brain tumour support charity Brainstrust.
“It was at the time when Rohypnol was doing the rounds in the local pub, so I just thought maybe her drink had been spiked.”
This was Helen Bulbeck’s initial reaction to her daughter, Megan, collapsing after a night out and being omitted to A&E in 2006.
She later realised that it was the start of a lengthy battle, as MRI scans revealed Megan had a brain tumour.
To complicate matters, surgeons opted not to operate unless the tumour showed signs of developing.
And so began Megan’s monthly brain scans, all while she was completing a History of Art degree.
“University was where Megan’s priorities were,” Helen tells NR Times. “The main focus at that point was to get her epileptic episodes under control.
“We weren’t referred to a neurosurgeon until the following January – that’s six months after her first episode.
“We were completely out of our depth; we had no idea what was going on. We had been told in October that she had a brain tumour, but that was it.”
It was the lack of available support that really concerned and surprised Helen.
“There was nothing,” she says, when asked about the help they received after Megan’s diagnosis. “We were just left in a vacuum.
“That’s what I couldn’t understand, because if you’re diagnosed with breast cancer, you’re assigned a clinical nurse specialist. We didn’t have that.
“I spent a long time on the internet trying to find where the support and information was and I desperately needed to talk to somebody about the impact that this diagnosis had, but there was nobody.”
Helen was left on her own in search of a solution for Megan, spending countless hours learning more about brain tumours and possible treatments.
This led her to discover neurosurgeon Peter Black from Boston, who agreed to operate on the tumour after a consultation.
The severity of brain tumours is graded from one to four. Black was the first surgeon to tell Megan she had a grade two tumour, but it could transform into a higher grade within five years, with the consequences being potentially fatal.
With that in mind Megan decided she would have the tumour removed. Because of the risks involved with the surgery, however, the procedure was delayed until after she had finished her studies.
Through all this Helen was fighting her own battle after being told she had head and neck cancer.
She quickly underwent radiotherapy and surgery, knowing she needed to stay strong for her daughter.
“I was just focused on getting fit so that I could go with Meg to America for the surgery.”
Helen was able to make a full recovery, but then faced the challenge of funding Megan’s £30,000 surgery.
Megan’s group of friends were desperate to help and agreed to do some fundraising, eventually smashing their target and generating £70,000.
After this, things finally started to run smoothly. Megan was able to finish her degree and successfully underwent surgery in 2007 which saw her tumour removed.
“We had such a good story and we’d learned so much,” Helen says. “We thought we’ve got one of two options; we can either go back to our lives as they were and donate what we’ve got left to another charity. Or we can use those funds to set up a charity which was going to close the gap in the marketplace.
“Who do you turn to the day you’re told you have a brain tumour? There’s nobody out there and we didn’t want people to feel as lost as we did.”
From this Brainstrust was born.
Starting off simply as a helpline, the charity has evolved into a support trust with UK-wide reach, developing communities to reduce isolation, build resilience and enable people to live the life they want.
It focuses on providing evidence based information around brain tumours and its support specialists can point people to the correct resources, without forcing anything upon them.
“The only other charities that existed at that time were all to do with lab-based research, there was no charity out there where you could pick up the phone and ask for help.
“Because we have that experience, we knew what the information was that people would want to hear.
“Meg and I knew what it meant to be both a patient and a caregiver, so we used that 360 degree perspective to support others.”
Since then Brainstrust has gone on to support thousands of patients and their families.
The vast majority (93 per cent) of those that contacted the charity reported a positive outcome, with nearly 1,000 new patients engaging with it in 2019.
Since its founding in 2006, care around brain tumours has drastically improved.
It is the most common form of cancer that affects those under 40 and it is one that is rising at the fastest rate in over 65s.
Discussing how attitudes to brain tumours have changed, Helen says that new technologies can lead the way to better outcomes.
“Your first line treatment with a brain tumour should always be, where possible, neurosurgery. That was what saved our daughter’s life.
“I think the technology is absolutely key and probably until the last five years, that’s been hugely ignored, but it is catching up.
“In terms of the actual therapies, I think with radiotherapy we’ve made huge advances.”
Despite this progress, Helen says there are still huge differences between the treatment of brain tumour patients and those with other cancers and conditions.
She draws on the example of post-stroke rehab and the general care stroke survivors receive.
“Stroke patients get a wonderful wraparound reablement service and I’d love to see brain cancer having a parity.
“I find that some of the attitudes are a bit nihilistic, as in if you’re diagnosed with a glioblastoma people tend to see this as life limiting with a poor prognosis so it’s not worth investing in. I think it absolutely is.
“That’s the one thing I would love to be able to transform, the day somebody has a brain tumour,
they immediately get that same wraparound care.”
Megan is currently living a happy and healthy life since her surgery, being able to get married and gifting Helen with two granddaughters.
She still undergoes regular brain scans and, after becoming a qualified coach with Brainstrust, she is now training to become a psychodynamic psychotherapist (a discipline involving the interpretation of mental and emotional processes rather than focusing on behaviour).
Reflecting on her journey Helen describes her pride in the work they had done so far, but admits there is still much work to be done.
“It’s been a highly emotional rollercoaster at times, we get very tired but it’s not a job it’s a vocation.
“It’s important not to forget that before we’re patients, we’re people and I think the more we can get clinicians to recognise that sitting in front of them is a person not a patient, then that person is going to be much more resilient.
“Just hearing the testimonials of the impact that our work has had is what keeps us going.
“I will always remember Meg saying to me ‘I would never wish a brain tumour on anybody, but in a way I’m glad this has happened because of what we’ve achieved.’”
