Emma, from Hampshire, thought her severe headaches and spells of forgetfulness and confusion were due to a flare up of her multiple sclerosis (MS). However, a routine scan in October 2022 found a mass on the 42-year-old’s brain – later diagnosed as a grade 4 glioblastoma (GBM). Emma’s shocking diagnosis is the latest in a list of unrelated medical conditions; including surgery for a borderline ovarian tumour in 2019. She has since had an operation to remove the mass on her brain followed by radiotherapy and chemotherapy. Emma is now paying for private treatment in Germany in a hope of prolonging her life and having more time with her two-year-old daughter Alice.
Emma tells her story…
I’ve always joked that I have been luckily unluckily with my health. Having been diagnosed with multiple sclerosis (MS) when I was 27, and then in 2019 I had an ovary and fallopian tube removed after a scan detected a borderline ovarian tumour – which was on the turn of being malignant.
Despite everything, I wanted to live my life to the fullest and opted to have a child on my own. In April 2021 I gave birth to a beautiful baby girl. At the time I was living in London and had been working at a stockbroker and enjoyed maternity leave in the city.
By the time I went back to work in June 2022, Alice and I had moved back to my family home in Hampshire.
I negotiated one day a week where I worked in the London office, with the remaining four days working from home. The job was fast-paced and involved long hours. Some days I could be in the office until late evening.
“With this new routine of working and motherhood, I was getting headaches which I thought could be the stress of finding a work-life balance.”
Three months later, during a holiday to Spain with my friends, the pain in my head came back, lasting for days at a time. Deep down I thought it was my MS playing up, but I kept it to myself. When we arrived home I caught a virus and developed a cough, it made me feel disorientated and as though I was in a daze.
This soon turned into a migraine and I became congested, every time I hung my head low, I felt a build-up of pressure. The GP prescribed mometasone nasal spray, a medication for sinus relief. This helped a little but I still didn’t feel at all right.
Weeks went by and I became forgetful and easily confused. I returned to work but forgot to pay for parking at the station. On another occasion at work, my colleague asked me a question and I stared blankly at the screen. Simple things became quite confusing. When I had three migraines in quick succession, I knew it was time to get checked out and was due my annual MS brain scan anyhow. After another trip to the GP, I was asked to get blood tests done. The results came back showing a raised erythrocyte sedimentation rate, meaning that my body was trying to fight some sort of infection. The GP asked me to get the bloods repeated the following week.
Still attributing my symptoms to my MS, I attended my annual check-up scan with the team at the National Hospital for Neurology and Neurosurgery in Queens Square, London. They’ve looked after me since I was diagnosed with the condition in 2008.
My parents kindly looked after Alice whilst I had my scan. In past experience I would have the scan and then carry on with my day, receiving the results a few weeks later, but this time I was asked to wait around. Although I thought something had changed in my condition, I’d never been told to stay after the scan. At this point I convinced myself that my MS had worsened and I would need to change to stronger medicines.
An hour later I was told they had found a mass the size of a conker which I saw for myself on the screen. They were confident it wasn’t a lesion associated with my MS and carried out more tests. A full body CT scan showed up clear so they knew they just had to focus on finding out what this mass on my brain was.
“It wasn’t secondary to the tumour found on my ovary. The mass on my brain was something completely separate and the cause was, and still is, unknown.”
In November 2022 I had a craniotomy which left me with 25 staples in my head. A week later I had the shock of my life when the first set of histology results confirmed the tumour was a high-grade glioma, they weren’t yet sure if grade 3 or 4. At this point, no one had used the word cancer but I knew the news wasn’t great. They removed the staples from my head and as I left, the doctor told me to not search for high grade gliomas on the internet.
I lasted almost 48 hours without looking but then woke at 4am and searched online and nothing could prepare me for the information I was reading. I’d seen stark survival rates, with the average of 12-18 months for someone with the type of tumour doctors thought I had.
It was during an appointment a week later at Royal Berkshire Hospital – where I was referred to for treatment - when doctors confirmed the tumour was a grade 4 glioblastoma (GBM).
All I could think is that this was me all over, I seem to get everything. I asked if this thing is going to get me and without hesitation the consultant answered, ‘yes’. Maybe two years, maybe a little less or it could be more. There was no definitive length of time. I zoned out as I tried to process the information. It was horrific, the worst day of my life and all I could picture was my one-year-old daughter who was likely to become an orphan by the time she started school.
That weekend, we had a family get together in Cardiff, where my brother, Andrew, and his family live. I remember sobbing with my parents, telling them that what I had wasn’t good.
I broke down speaking to Andrew and his wife Jessica and told them that I don’t think I’m going to be here in a couple of years. If I’m here in four years, I said, it’ll be a miracle. I asked them if they would bring up Alice for me and they both immediately said yes, adding that there must be something we can do to fight this disease.
In January 2023 I started six weeks of radiotherapy and six cycles of chemotherapy via the NHS, which I completed in August. My friends and family rallied around me, organising a rota to help with appointments and childcare.
I suffered the side effects which are warned with treatment, such as loss of appetite, and my hair fell out. An MRI scan in May was clear which offered light relief after experiencing ‘scanxiety’ - which I had previously only heard about.
One of the hardest things so far was seeing a copy of a hospital letter sent to my GP, asking if they can add Emma Postance to their palliative care list.
I’ve been angry and frustrated that this is the gold standard of care that the NHS can offer. Other than scans every 12 weeks and possibly further chemo that’s where the treatment options end on the NHS. I know that they are following treatment by the books and they are limited on what they can offer. This is because the government hasn’t prioritised the research funding into brain tumours like they promised.
After months and months of research, I am now seeking private treatment at a clinic near Stuttgart in Germany. Fatigue has been a huge issue, but I wasn’t going to sit around and wait for the cancer to come back. But, you need money to do this. It’s paid-for treatment. Thanks to a gofundme page and the kindness of loved ones and strangers, I have this opportunity.
I’ve learned that there is no one size fits all when it comes to the treatment of brain tumours. Glioblastoma is a disease so deadly it’s known as ‘the terminator’ in the medical world. It’s a fast-growing brain cancer that can affect anyone at any age, and comes with a grim prognosis. They are complex which means to understand how to treat and cure them, we need the funding to research the disease.
I shouldn’t have to advocate for myself, let alone travel overseas to find something that may work. I know it won’t save my life. I know what I’m up against, I know it will come back and when it does it may grow faster and more aggressively, then that’s a different ball game.
I want options for future patients and their families. That’s why I am urging people to sign the Brain Tumour Research petition to increase research funding.
The last few months have been consumed by putting a will in place and making plans for Alice for when I’m not here. I want nothing more than to watch my daughter grow up but it’s too late for me. I want Alice to have the best possible future and options.
Emma Postance
August 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Emma’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure