Mum-of-two Holly Vivian was diagnosed with a grade 4 oligodendroglioma in December 2020 whilst still in her late 30s. The nurse from East Grinstead, West Sussex, had been suffering from insomnia, daily headaches and visual auras, sudden weight loss and had found herself becoming less patient. She had also started vomiting uncontrollably and was suffering from what she now knows to be repeated seizures. These presented as a pang in her stomach that would travel around her body resulting in tingling toes and fingers, ringing ears and intense headaches. She underwent emergency surgery followed by six weeks of daily radiotherapy and chemotherapy and a further 12-month course of chemo. She is now being monitored with three-monthly scans and currently remains stable.
Holly tells her story …
For years I had been suffering from insomnia, which I now know can be a brain tumour symptom. I’d just put it down to life stress and studying for two degrees. I’d also experienced sudden weight loss, dropping two dress sizes in six months, and had been suffering with visual auras. These usually presented in one eye at a time. I would see a black spot which would develop into flashing pastel-coloured triangular bunting in a circle covering around 80% of my vision. Paracetamol helped a bit but I would be left with a terrible head for the rest of the day. I went to see the doctor who told me I was suffering from migraines and assured me they were nothing to worry about. Unfortunately, they were a sign of something much more sinister.
“I made repeated visits to the GP, not always for the same thing but, looking back, they were all for brain tumour symptoms.”
The fact my symptoms were missed for so long is really disappointing. I knew something wasn’t right but I never suspected I had brain cancer. I had noticed I was becoming less patient, which was really out of character because I’ve always been such a compassionate and patient person. I was also having what I now know to be seizures. I would get a pang in my stomach that would travel round my body and cause tingling in my toes and fingers and ringing in my ears. This left me with a terrible migraine and would come on at any time.
I also struggled more than expected during my second pregnancy where I found I would vomit for no real reason. Of course, I attributed it to being pregnant and, as the myth goes, everyone assumed the sickness meant I was having a girl, but I also had no energy and just didn’t feel well. Then I was away for the weekend and woke up one morning and couldn’t stop being sick. I was really worried because I couldn’t feel my baby move as much as my first one had.
“My GP told me I was being ridiculous and, as a nurse, I was trained not to undermine doctors’ opinions so I accepted it.”
Fortunately, my brother is a consultant in anaesthetics and neuroanaesthesia and he had a big part to play in saving my life. We’d had a family Zoom chat over Christmas 2020 as COVID meant we couldn’t get together and I’d said I hadn’t had Christmas dinner because I wasn’t well. He called me the next day, which was about six weeks after my second son was born, to tell me my text messages weren’t making sense. He asked if it was because I wasn’t sleeping well and had ‘baby brain’ but I admitted I couldn’t write or type properly. I agreed to let him test me on a few neurological things over the phone and everything he asked me to do made me feel like I was going to be sick. He was usually as cool as a cucumber but there was a noticeable change in his voice.
“He told me he’d googled my nearest neuro specialist hospital and that I needed to go to Brighton General Hospital without wasting any time.”
He wrote me a list of things to ask the doctors to do and, although COVID-19 restrictions made them reluctant to let me into A&E at first, despite me being sick outside, they did a couple of hours later. Upon seeing my brother’s list, they realised I’d already sought medical advice and promptly order an urgent CT scan. This revealed I had a mass on my brain. I was admitted straight away and given high-dose steroids to reduce the swelling the tumour was causing. I said goodbye to my partner and kids, which was horrendous, and four days later, on 4th January, I had brain surgery. It was a long and difficult four days on my own waiting to find out if I would live or die.
“I was so scared as I signed a piece of paper saying I accepted the surgeons would try not to kill me but might.”
In preparation for the operation, I had to drink this disgusting ‘pink drink’ called 5-ALA, which causes tumour cells to glow bright pink under UV light, allowing surgeons to remove more of a tumour by distinguishing its cells from healthy ones. They couldn’t remove all of my mine because of where it was located but they did manage to debulk it by 70%. The morning after, I phoned home as my breakfast arrived so that I could eat with my eldest son and I managed to ‘read’ him one of his favourite books from memory, Never Touch A Panda, which was a very special moment.
“Later the surgeon told me if I’d waited two more days I’d probably be dead.”
On 16th February, having had a six-week break to allow my brain to recover from surgery, I started chemo and radiotherapy at Brighton General. My partner started working from home and we took our eldest son out of nursery to help protect my weakened immune system. After another six-week break, I started a further course of chemo under the care of Guy’s Hospital, in London. This was only supposed to last for six months but I tolerated so well that I ended up doing 12. Sadly, I lost half of my thick head of hair, one of my eyebrows, and all of my eyelashes and nasal hair. My nose would stream and it took me a while to work out that it was my lack of nasal hair causing it. It was a really tough time and the thing I feared most was that my kids wouldn’t recognise me and might reject me.
“In fact it was me who rejected myself, but I took photos regardless so my boys will one day know what it is I’ve been through.”
My tumour was eventually identified as a grade 4 oligodendroglioma with molecular features of a glioblastoma (GBM). Getting an official diagnosis was pretty stressful as no one seemed sure at first and I wanted to be able to research the latest drugs available. When looking at research into brain tumours, it appears we’re so far behind other countries. I don’t understand why we’re not investing more in research when brain tumours are the biggest cancer killer of children and adults under 40. Had my tumour been discovered earlier, it almost certainly wouldn’t have been so aggressive but, in some respects, I’m glad it wasn’t because I wouldn’t have both my boys.
“My oncologist has warned me my tumour will return, which is devastating to hear.”
I didn’t have any regrowth during treatment, which is positive, but I’m still left with the threat of my tumour returning hanging over me. It’s put a huge strain on my relationship and has taken me a long time to accept as part of my new life. I was a healthy person, who taught spin classes in my spare time. I had run five marathons for different charities, my fastest in three hours 30 minutes, and all of my grandparents lived well into their 90s. I’ve struggled to understand why this has happened to me. I know brain tumours are indiscriminate, but that doesn’t make having one easier to accept. I was so embarrassed about my diagnosis that I didn’t talk to anyone for at least six months. People try to empathise but I truly believe they can’t understand what you’re going through unless they’ve been through it themselves. My tumour has changed everything for me, but I’ve found comfort in my faith. I’ve gone back to church and have found incredible support there, when it’s been lacking elsewhere.
I think patients need to be warned about the potential for other health problems to crop up following treatment. As well as inducing an element of health anxiety, for me this has included having an underactive thyroid diagnosed, possibly going through early perimenopause following chemo and having problems with my eyesight, for which I’ve now been referred for follow-up. I feel like my life consists mainly of appointments, which is exhausting. I did start running again in December 2021. I was in tears after doing just 6km because I didn’t think I’d ever run again so it was a huge achievement. I’m not as strong as I was and I have a tendency to fall on my left side, so I have to be careful, but I am making progress. I’ve also finally been able to go back to teaching some fitness classes.
“Despite feeling unable to plan too far ahead, I am hopeful about my future and want to enjoy what time I have left with my family.”
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.
Together we will find a cure