Vicki was diagnosed with a grade 2 diffuse astrocytoma, in 2016, aged 51, after suffering with migraines. She underwent surgery which successfully removed the tumour but was told that in all likelihood the tumour would become high-grade within five to seven years. Happily that hasn’t yet happened and Vicki doesn’t know whether this is just luck or down to her adhering to a ketogenic diet.
Vicki tells her story…
I suffered with migraines for years but always believed them to be hormone-related. They were often long-lasting and severe.
But then I experienced a very different migraine with numbness all down one side of my body and was concerned that I might be having a stroke. It was a Saturday and I didn’t want to go to A&E so waited to see my GP, who gave me some prick tests and confirmed that it was only a migraine. I was prescribed medication to take when one was coming on, which was difficult because I’d never had an aura to forewarn me.
I had a couple more unusual migraines, although these were without the numbness, so turned to Google, looking only at ‘sensible’ sites. My research led me to believe that the GP should be treating my symptoms as a red flag for further investigation, instead of just prick-testing me. He did, however, offer to refer me to neurology, but informed me there would be a long wait for an appointment.
It was then I remembered that my mother had offered to pay for me to go private if I had any serious health concerns so, as I was really scared, I decided that was the best course of action.
I chose the neurologist who could see me the fastest, and he told me that it probably was just a migraine, but to be sure I should have a scan.
“It was February 2016 when I received the results – I had a mass in my brain. Even though I knew a brain tumour was a possibility, it was deeply shocking and completely terrifying.”
The consultant had mentioned that the tumour looked like a glioma and when my research led me to ‘glioblastoma’, I thought that was what he meant, especially as 50 was the average age for diagnosis and I was 51. My anxiety went into overdrive.
On top of that were the memories of my son’s friend Will, who had been diagnosed with a brain tumour at the age of 16 and died at 18. I immediately thought I was looking at just two years maximum.
My children Lottie and Benedict were aged 15 and 20 respectively and I didn’t hide my worst fears from them. Possibly the hardest thing I've ever done is try to comfort a terrified child without being able to tell her it would all be OK.
I was lucky that the neurologist referred me to Dr Jeremy Rees at the National Hospital for Neurology and Neurosurgery in London as an NHS patient. He said surgery was the obvious option and was able to reassure me that the tumour was in a good location on the surface of the brain so in all likelihood a simple job for a neurosurgeon. Despite this, reading about the risks of brain surgery including disability and seizures was horrifying. Thankfully, the surgeon didn’t envisage I would be one of those who experienced seizures post-surgery and if I did, it might just be one or two initially.
“Six weeks before I underwent the craniotomy, my mum died of endometrial cancer, which was tough to say the least. Timing wasn’t good either for Lottie, who was taking her GCSEs with the stress that her mum was in hospital for brain surgery.”
The operation went as planned and I was told the tumour, which turned out to be a diffuse astrocytoma grade 2, had been fully removed. Fortunately, I didn’t go on to have any seizures.
Benedict, who had been away at university when I was diagnosed, came home after my surgery and was a massive support, especially helping around the house when I was feeling so fatigued.
My first scan, six months after surgery, showed a tiny bit of gliosis which worried me until I learnt that it was a common response to brain injury or surgery when increased glial processes replace injured CNS cells and form a gliotic scar.
In 2017, having done my own research, I started on the ketogenic diet with support from the charity Matthew’s Friends (specialising exclusively in medical ketogenic dietary therapies and a Member Charity of Brain Tumour Research). The diet, which is very low in carbohydrates and high in fat, is a recognised treatment for drug resistant epilepsy, but there’s also research being conducted into its potential benefits for a number of health conditions, including brain tumours.
On the first anniversary of my surgery, I contacted Dr Rees about being able to drive again and he gave his blessing under section 88 of the Road Safety Act (also known as DVLA section 88). Having been frustrated at losing my independence, although fortunate to have enjoyed lots of lifts from my husband Mike as well as friends, or taken public transport, the very next day I was on the road again.
I organised a fundraising quiz night for Brain Tumour Research in September 2017, with Benedict writing the questions and delivering them. Our joint efforts raised £1,000 to fund vital research.
In December 2017, an MRI showed no change from six months previously, but a slight change from the scan taken 12 months before.
“It was a cruel blow to hear this could indicate an early recurrence. There was talk of radiotherapy and chemotherapy but I was very aware that these treatments can bring about serious and permanent side-effects themselves, especially because my husband worked in cancer research.”
I managed to speak to a doctor of oncology and functional medicine in Germany and he wasn’t sure that radiotherapy and chemotherapy were the right answer for me then, but advised that if I was offered the option of further surgery to take it. I am also very lucky in having a husband who has done a lot of cancer research, including working in a number of roles at the Ludwig Institute for Cancer Research and Cancer Research UK, which in turn became the Crick HTS science technology platform in 2016.
A scan in 2018 showed a tiny bit of growth, but nothing significant, and after continuing to have six-monthly scans, in 2020 I was encouraged to hear that it showed no discernible growth across a 12-month period. It was then that it was suggested I move to 12-monthly scans but that seemed too big a leap for me so we compromised on nine-months.
Since then, there has been no change, which has been comforting, but this year I confess I have been feeling less confident. Last summer (2022), I had COVID-19 and experienced really bad brain fog which took two months to clear.
I also suffer with Hashimoto’s disease (an autoimmune condition which can cause hypothyroidism or overactive thyroid) and in the spring of 2023 I found myself putting on weight, feeling hungry and angry and experiencing low mood. The brain fog came back too and I did wonder whether COVID had reared its ugly head again. It stabilised quite quickly but not without knocking my confidence.
“Understandably, any unusual symptoms make me worry that they could be a sign the brain tumour is growing again, especially as when I had the original diagnosis, I was told that my tumour could become high-grade within five to seven years and I am now seven years on.”
I don’t know whether the keto diet is helping or whether I am just lucky, but right now I have never felt so well in my life!
Following in her father’s footsteps, Lottie was drawn to the field of cancer research and I am very proud that, inspired by my diagnosis, she is doing her PhD at Brain Tumour Research’s Centre of Excellence at the University of Plymouth. It’s only when you, your family or friends are impacted by a brain tumour diagnosis that you realise how important research is to find better treatments and ultimately a cure, yet to date, frustratingly, it remains so woefully underfunded.
Vicki Harris
June 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.
Brain Tumour Research is determined to change this.
If you have been inspired by Vicki'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
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