Vic from Chippenham was 32 when she was diagnosed with two low-grade meningiomas in March 2010. Her tumours were discovered after her mum grew concerned as Vic developed proptosis (a bulging eye). At the time, Vic was also getting headaches, something she had ‘normalised’ after suffering with them for as long as she can remember. Now, 46, she has undergone two operations, followed by radiotherapy treatment. Vic understands that her tumours are likely to grow and she will be monitored with scans for the rest of her life.
Vic tells her story…
Since the age of eight I have worn glasses and had frequent headaches. Migraines are also common in my family, so I have never been able to pinpoint when the symptoms of my brain tumour started.
I didn’t really notice that my right eye and brow were bulging, which I later found out is a condition called proptosis. It was my mum who commented on how it seemed to protrude from my face. Because I looked at my face every day, it’s not something that was ever a cause for concern, so seemed normal to me. My mum would always ask if I had been to the doctors for a referral for a full eye examination, to which I would always make an excuse. Many times I said, ‘oh I do feel tired so I think that could be bags under my eyes’. I found myself normalising things, looking for reasons that were more rational than a brain tumour.
Finally, in 2009, after a year of my mum questioning if I had made an appointment with my GP, I booked a check-up. The doctor shone a light in my right eye and rather than both eyes reacting, only one did.
I was sent for a scan which confirmed two meningiomas on my brain. One the size of a pea and a larger tumour that was pressing on my optic nerve.
Hearing those words: ‘you have two brain tumours’, I managed to remain calm. My thought process was: ‘I can’t do anything to change this, it’s beyond my control. How do we move forward knowing this news?’
My best friend, Claire, came with me to all of my appointments and I will always be grateful for her time and friendship. Claire became like my medical secretary. There’s only so much information that you can absorb as a patient and she was an extra pair of ears and eyes. Someone to take notes and advocate for me.
What I did find hard was managing the feelings of those around me. When the doctor delivered the news, it came with a warning to not search online for information which I abided by. I remember conversations with others being in tears as they were telling me what they had found, looking at the stats online.
There was a risk that without surgery I could lose my sight, and having the operation carried a similar risk so I put my faith in the surgeon to remove as much as they could.
Before the operation the neurosurgeon described what the procedure would entail. His description was: ‘we are going to cut your scalp from ear to ear, pull your face down, cut a sunroof in your skull, take your eye brow bone off and keep it. We’ll then take out your eye socket, throw it away, bend, mould and shape a new eye socket, pop that back in, screw the eyebrow bone back on, screw the sunroof back on and finally, zip your face back up.’
I wanted to hear the information and it didn’t matter how it was delivered. I felt very cared for. Everything was carefully thought out, even the incision from ear to ear was planned carefully and done in a zig zag so that my hair down, covered the scar.
After a week in hospital, I returned home and needed no further treatment until a re-growth in 2018.
In April, I had another debulking surgery which helped to address my proptosis further and remove more of the tumour to again avoid me losing my sight. My understanding is that the bone next to where my tumour was growing formed an extra thick layer to try and protect itself from the ‘foreign’ mass growing on my brain.
Six weeks of stereotactic radiotherapy followed, which meant being out of my house for up to eight hours each time as I relied on passenger transport. This was for five days a week, for six weeks. The fatigue was something I had never experienced before. I was surprised at how long after radiotherapy it took to feel like me again.
I’ve been warned that my tumour will grow back and it’s likely that I will have scans for the rest of my life.
Over the last 13 years, my family and I have used services from brainstrust, the sister charity of Brain Tumour Research, which is how I came to add my signature to the petition to increase the Government's investment to research brain tumours.
I’m also taking part in the Skip 10 Minutes a Day in November challenge. Although my brain tumours are stable and, in that respect, I am deemed healthy, I am far from being fit. There are three things that I lost because of my diagnosis, my fitness, the ability to give blood and temporarily, my driving licence.
As well as raising awareness and funds, this challenge is a chance for me to say thank you to a charity who are giving a voice to brain tumour patients.
My hope is to show people that, in some circumstances, you can live really well with a brain tumour. The more research we can do, the more we can understand the disease the more likely it will be that people have better outcomes.
To do this, we need the funding.
Vic Hemmings
November 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 Vic’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