Vicki from Saltash was first diagnosed with a diffuse astrocytoma in 2017. Since then she has undergone five operations and said her diagnosis made her want to start a family with her husband, Richard. Vicki is now 31 and her tumour has progressed to a grade 3 anaplastic astrocytoma. As she prepares for radiotherapy, Vicki wants to share her story in the hope of telling others that there is life to be lived after the devastation of being told you have this disease.
Vicki tells her story …
As I prepare for radiotherapy for the first time since my diagnosis in 2017, I am remaining as positive as I can. Despite everything I have been through over the last six years, I feel fortunate to be in the position I am today.
Since having ‘Phil’ – the nickname I gave to my tumour the day I was diagnosed – I feel as though it’s helped me understand what to look out for when things with the tumour, change. Almost like a sixth sense. I am more in tune with my body now, and I can tell when it’s grown before the scan confirms it.
I always knew I was special and it was for the simple reason that I always felt something wasn’t quite right, that I was different in some way. I always wanted to be ‘normal’, the same as everyone else but I was dyslexic and tired and lethargic. I had felt like that for as long as I can remember.
I have always been very outgoing, being a hairdresser and involved in the performing arts. Making friends and talking to people has never been an issue for me.
In July 2017 I had a horrendous headache, all the symptoms of a migraine. I was physically sick and all I could do was go to bed. Not long after that I had problems with my eyesight. It was like old-school TV where everything goes fuzzy and I could see zig zag lines. I thought it could just be something like an under active thyroid - which runs in my family.
I had my eyes tested at Derriford Hospital in Plymouth but everything seemed normal. I was told my eyes would return to normal after the migraine had passed, but a week went by and I was feeling sick and still had disturbed vision.
I carried on driving and going to work, but things didn’t get better. Eventually, it was my mum who insisted I went to the GP where I was given medication to help with my migraines and told if it doesn’t improve in the next 24 hours then I should go to A&E.
The next day I found myself in A&E but, even then, I was sent away after tests were normal and I was told to go back to my GP if the problems continued. I began to think that maybe there wasn’t anything wrong with me after all, perhaps it was all psychological, maybe I was even going mad. At one stage, I even joked at work that “knowing my luck I would end up being told I had a brain tumour”.
Fortunately it turned out that A&E had referred me to the Royal Eye Infirmary at Derriford and – thank goodness they did – because had that not happened I don’t think I would be here today. So, eventually it was noticed that the optic nerve behind my right eye was enlarged and I was told I would need to return the following day, a Saturday, for a scan. I agreed, albeit reluctantly, as it was my busiest day in the salon. The night before the scan I went out with my husband Rich and my best friend and her husband and thought to myself maybe it would be the last time that everything would be normal for me. To be honest I never thought that I was going to die, rather that I was invincible, but I knew something was wrong.
My heart was racing as I had the CT scan and then later another scan with contrast. We waited around for what seemed like forever before seeing a doctor and I felt sorry for him as he delivered the news that no-one wants to hear. “I’m really sorry to tell you that you have a mass in your brain”, he said. But instead of crying I had a great big smile on my face. It was the sign of relief, relief that it was true, there was something different about me and I had known it all my life.
On 14 July 2017 I had a seven-hour operation to debulk as much of the tennis-ball-size tumour as possible, and found out it was a grade 2 diffuse astrocytoma. Less than two months later I was back at work, which offered a release to detract from my diagnosis and hear from other people. I was warned the tumour can re-grow and the surgeon had left part of it as full removal could have left me with life-changing injuries.
“In 2019, after 18 months of stable scans, I was told my tumour had re-grown and my perspective on life completely changed.”
I became a mother, having had no previous desire to have a child. After receiving fertility treatment and creating embryos which were frozen, my husband and I decided to try naturally and lucky for us we fell pregnant.
I would love to have another child. I love being a mum but with it is a huge sense of guilt that I may not be around to watch my daughter, Aubrey who is two, grow up.
A week later I was back in surgery after developing an infection in part of my skull. The procedure known as a ‘wash out’ was exactly that. Part of my skull had to be removed and the infection was washed out after which I was placed on IV antibiotics. Something I learned quickly was that if an infection gets into your bone then it’s there forever.
For a year I walked around with a soft dip in the back of my head, hidden by my hair which was eventually replaced with a titanium plate. By this point, the tumour had progressed to a grade 3 anaplastic astrocytoma.
I found myself in a cycle of around every 18 months the tumour regrowing, anticipating the news of hearing it had grown, before hearing the consultant speak the words. However after a scan in May 2023 it had grown again, which this time surgery couldn’t fix due to the diffuse nature of the tumour.
My thoughts turned to: if anyone was going to fight this, it was going to be me.
On 6 July 2023 I am due to start radiotherapy for the first time since being diagnosed. A choice I have made, after discussions with my healthcare team. I feel in control when I know what is coming. It’s now the next stage of my life with Phil.
I suffer with regular bouts of sinusitis after the first awake craniotomy and I can tell when Phil is changing, it’s a specific pain in my head. Recently I developed anxiety which I had no experience of with before my diagnosis, and I am working through these feelings with a counsellor which has been invaluable.
I’ve learnt I can’t do this on my own, I need the help of people around me physically and emotionally.
I hope that sharing my story will inspire others. As dreadful as a brain tumour diagnosis is, we are more than a statistic. We can try our best to live a ‘normal’ life and if there is a bump in the road, it is simply the next part of the story.
Vicki Hilborn
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/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure