Nicole is a bubbly mother of two gorgeous girls. In 2008 her life changed dramatically – aged 36, she found she had a tumour the size of an orange in her head. Although the meningioma was benign it took nine hours of surgery to remove it at the risk of her speech. Despite the success of the operation she was left with epilepsy, and couldn’t drive, cook or bath her children. Amazingly after all that, Nicole has come out fighting – she has a passionate desire to raise awareness of the symptoms of this dreadful disease and has set up a fundraising group called Head 1st which has raised more than £25,000 to date.
Nicole’s told us her story…
I first felt something was wrong in August 2007 when I was working as an area manager for a beauty firm. I visited my local GP because I was suffering from hearing loss. A grommet was fitted but this did not improve my hearing for long. By October I could not concentrate properly on my job and I could hear whining noises in my head. I remember thinking I didn’t feel right, but the doctor thought I had sinusitis and gave me a nasal spray.
A few weeks later I started to have massive headaches which were dismissed as stress and the trembling in my arms was put down to a trapped nerve. However, when I queried my symptoms for a fourth time I was diagnosed with post-natal depression and given anti-depressants.
After Christmas 2007, I started to hear noises in my head and phoned the GP – he laughed and asked if I had been drinking or taking drugs. I was so upset. I thought I was going mad. My husband Gary was so worried. Then a few weeks later I was talking to a friend and I couldn’t get my words out. They were all jumbled up. Again my doctor thought it was stress, and later when I went back again feeling light-headed, confused and forgetful I was again given no help. By this time I had seen seven different GPs who gave a variety of different diagnoses and prescriptions, but I was still ill. In the end we made the decision for me to give up work.
In February 2008, I had just carried my new baby daughter, Ellen, downstairs when I suffered a major fit and was rushed to Luton & Dunstable Hospital. Brain scans revealed a massive tumour the size of an orange over my left ear on the right side of my brain. I remember being terrified and praying for my life. I was transferred to the Royal Free Hospital in London and was put on steroids to reduce the pressure in my brain, before undergoing surgery.
I was so frightened – not for me, but for my kids who were just four and eight months at the time. I was also very worried that I might die and how would my daughters cope without their mum. I am not normally religious, but over the next few days I spent most of my time, when not in bed, in the hospital chapel.
I remember seeing my girls for the last time before my operation to remove the tumour. I had to be strong for them, but inside I felt like buckling and wanted to cry.
I had already signed the disclaimer form, having been informed of the huge risks of my surgery. I had some last pictures taken with Megan and Ellen just in case I didn’t make it and then they left. It was only then that I allowed myself to break down.
I underwent a frightening nine hour operation, which could have threatened my speech, to remove the tumour. I realise that I was one of the lucky ones (one of the other patients didn’t make it through their operation) because my tumour, a meningioma, was not only benign (grade 1), but it could be removed by surgeons.
I think of myself as a fairly up-beat, bubbly sort of person, but life changed for me since my near death experience. I had epilepsy and could no longer cook, drive alone or bath baby Ellen or her sister. On the other hand, I became determined to raise awareness of brain tumours. I wanted people to know how poorly underfunded research was into this devastating disease which kills more people under 40 than any other cancer. I also wanted to make people aware of the symptoms – GPs don’t always recognise the signs, as I found out first-hand.
In 2010 I set up a fundraising group called Head 1st under the umbrella of Brain Tumour Research and along with an ever increasing band of friends and supporters in the Leighton Buzzard area, we have raised over £25,000 to date. Last Christmas we sold a Naked Ladies Calendar which features a number of Head 1st’s key supporters, including me.
My marriage to Gary sadly broke down.
In March 2014 I had an MRI which revealed that the tumour had grown again and was the size of a walnut, but I was told that it was a case of watch and wait. It was devastating to hear that it was inoperable and that I will probably need to have radiotherapy at some stage.
Around the same time I got engaged and in November that year, Phil and I attended the launch of one of Brain Tumour Research’s Centres of Excellence at Plymouth University, where we put up tiles on the Wall of Hope to signify the days of research which Head 1st had funded.
In July 2015, I married Phil and became Mrs Phillips. We went away on a lovely honeymoon cruise with Megan and Ellen.
I suffer with short-term memory loss, although I have been taught to make up comical pictures in my mind to help remember things like people’s names. I also have to take a lot of medication to control my epilepsy, but thankfully this now seems to have the fits under control as I haven’t had one for at least 20 months.
Brain tumours are sometimes described as the ‘orphan disease’ because so little is known about them and so little funding is allocated to them. With more awareness I hope that greater funding will result in a cure being found.
Nicole Phillips
February 2016
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 touched by Nicole’s story, you may like to make a donation via https://braintumourresearch.org/donate.
Together we will find a cure.