In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Mum-of-three Catherine Wilcockson had not been feeling herself for the past two years and was mistakenly prescribed anti-depressants to treat her symptoms. After a couple of episodes of ‘blacking out’ and then a massive seizure in May 2019, it was finally discovered that she had a brain tumour. The 36-year-old from Sheffield has undergone an awake craniotomy, radiotherapy and chemotherapy and, remarkably, feels like her diagnosis has given her a new lease of life.
Here’s Catherine’s story…
I was watching my little girl Shani in her school nativity on 10 December last year, when I suddenly felt like I was having an out-of-body experience. It was as if I was watching the production from a location outside of my body. It was really scary but I managed to pull myself together and focus. After that, I continued to have similar experiences on a daily basis. I hadn’t been feeling right for the previous two years or so. I had a row of dresses I’d bought but never worn hanging in my wardrobe, as I’d cancelled nights out, due to feeling rubbish. One of my friends was suffering from depression and anxiety and so I assumed I had the same thing. I went to see my GP, who agreed that I had a mental illness, and I was prescribed 10mg dosage of citalopram, to be taken daily.
In January I was feeling no better and my medication was upped to 20mg. I had no energy and would go to bed at 6.30 in the evening. Six months after I was first prescribed anti-depressants, on 14 May, I had a massive seizure. My youngest daughter has autism and ADHD and I’d got in bed with her one night, when I had a huge tonic-clonic seizure. I must’ve fallen out of bed because I woke up on the floor with my dad holding me. It later transpired that my 16-year-old daughter Christie had called my parents over when she and Shani found me. Shani is only nine and it must’ve been so worrying for her. My parents called an ambulance and I was taken to Northern General Hospital. I was given a CT scan because they thought I might have sustained a head injury with the fall. I remember asking the doctor whether I might have a brain tumour but he reassured me and said it was very unlikely. Shortly afterwards, with my 19-year-old daughter Tia by my side, the consultant told me they had in fact found a large brain tumour. Weirdly, I wasn’t surprised. Suddenly everything made sense.
“Tia was upset. We both had tears rolling down our cheeks. I was sent straight to Royal Hallamshire Hospital for an MRI scan. I would then have to wait three days for the results and was sent home with anti-seizure medication."
When the results came through, I was told I had a grade 2 astrocytoma. A few weeks later I was back in hospital for an appointment with my consultant neurosurgeon, Mr Shungu Ushewokunze. He immediately put me at ease. He went through all the risks and said he would attempt to remove as much of the tumour as possible (around 60%).
The really strange thing about my diagnosis is that I’ve always had a feeling that I might have a brain tumour. I was told that the tumour has probably been there for 20 years or so. When I was 15, I lost one of my good friends to an aggressive brain tumour. It was really devastating. I used to think that all brain tumours were deadly. I can’t believe now that my brain tumour may have already been there at the time when she died from the same disease. Knowing I’ve had this tumour all those years is bizarre. It’s affected my personality. I used to be really quiet but that wasn’t me. I was an introvert, who didn’t like speaking. I’m a completely different character now; extrovert, chatty and extremely positive. Finding out I have a brain tumour, that can be treated, has given me a new lease of life.
“My awake craniotomy was on 18 June 2019. When the date came around, even though I knew I was going to be woken up part-way through the operation, I felt fine.”
My family were with me as I was about to be wheeled into the operating theatre and they were all crying. I gave them all a kiss and said see you later! There were no tears from me. It really wasn’t bothered! I knew the risks; I could wake up and find my speech or my emotions were badly affected but I just said to myself that this was something I had to do and I stayed really positive. I don’t remember much about being woken up during surgery, other than being asked if I could move my feet.
When I came around on the high dependency unit, my daughter saw me with a big bandage on my head and she was terrified; she thought I was going to die. I was completely out of it but apparently, when my surgeon came to see me, I sat up in bed and thanked him! He managed to remove around 85% of the tumour, which was fantastic news. The next morning, I felt back to normal. I was transferred to the ward, where I stayed for a week before being discharged.
“My surgery was followed by six weeks of intense, full brain radiotherapy. I had a total of 30 sessions and generally coped well, other than a bit of swelling and some hair loss.”
I started chemotherapy on 30 November. The type of chemotherapy I’m receiving is called 'PCV triple therapy’. It’s a combination of procarbazine, CCNU (lomustine) and vincristine. Procarbazine and lomustine are given in capsule form, whilst vincristine is given via an intravenous drip (IV) at the hospital. I had the option not to go through with chemo but my team strongly advised me to have it, especially as I’d coped so well with the radiotherapy. I have only just started my nine-month course but I am feeling really nauseous and tired with it. I’m trying to look after myself and continue to eat well in spite of the sickness – I need to keep my strength up. I’m lucky to have a great network of support. My friends and family have been wonderful.
“My neighbour and good friend Stacey’s little girl Katie died from a grade 4 glioblastoma multiforme (GBM) in July, just nine months after her diagnosis. Katie was only five when she passed away.”
I was shocked to discover that brain tumours kill more children and adults than any other cancer… yet just 1% of the national spend on cancer research has been allocated to this devastating disease. Inspired by Stacey’s devastating loss and my own experience of having a brain tumour, I’ve set out on a mission to raise as much money as possible for Brain Tumour Research. With the help of my ‘bestie’ Louise Deakin, we are raffling off a Sheffield United football shirt, signed by the first team. Raffle tickets are being sold at One Stop shops around the city. Intake Primary School, where my daughter Shani is a pupil, held a non-uniform day, raising more than £180 and they’ve pledged to take part in Wear a Hat Day in March as well. Winter Green Carvery in Rotherham is running a Christmas bauble fundraiser, where customers can purchase a decoration to hang on the pub’s Christmas tree for £1, with all funds going to the charity. We’ve got so much more in the pipeline, from car washes to hair braiding, and we’ve distributed collection tins all over Sheffield.
I feel like I’m one of the lucky ones, as my tumour is treatable but I’m under no illusions that it may grow back and that’s something I have to live with. Less than five months post-surgery, however, I don’t feel like I’ve had a serious operation on my brain. I’m feeling well and intend to go back to work as a kitchen assistant in a local primary school soon. In the meantime, I want to continue to raise awareness and funds for Brain Tumour Research, rallying as much support as possible along the way, to make a big impact.
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.