'˜I gave my brain tumour a name to take away some of the fear'
Jeni McCrea was 13 when she started having headaches and seizures.
‘I wouldn’t know where I was and what was happening. I was really confused about everything,’ she says.
‘I was getting lost all the time. I was taking routes that I used to take and I didn’t know where I was.’
She had hospital tests, but it wasn’t until she was 15 that the cause was found to be a brain tumour.
It must be terrifying receiving such a diagnosis as a teenager.
But, nearly seven years on, Jeni has now written a book about her experiences in a bid to raise awareness of the disease which has taken over her life.
She’s had three major operations, missed a lot of school and has had a titanium plate fitted to her head.
But with the support of her family and friends, she is rebuilding her life and wants to share her story.
Jeni, of Forton Road, Gosport, says of the original diagnosis: ‘It was the worst thing ever. They said they could see on the scan that there was a shadow, that it was a brain tumour and I needed surgery.
‘Initially I was really scared that I was going to die. My mum was really upset about it too, so I was worried about her as well.’
But the surgery didn’t take place straight away.
‘For a while I had to just keep having scans so they could determine the grade and the type of tumour that it was.’
Jeni was diagnosed with an incurable oligodendroglioma grade 3 tumour. Her first major operation took place in 2014 – and she had two further operations.
But during her diagnosis in April 2010 and her operation more than four years later, she suffered with terrible headaches and seizures as the tumour continued to grow.
‘It did keep growing into different areas of my brain,’ she says.
‘I had seizures every single day. A lot of the time I couldn’t get out of bed because my headaches were so severe. I missed so much school because I physically couldn’t attend as I was so unwell.
‘The pressure in my brain caused me to be sick. I also started to get really nervous around people because I was anxious about having a seizure.’
Eventually, she underwent major surgery in September, 2014.
‘I can’t tell you anything of the first two weeks after the operation because I have no memory of it,’ she says.
‘After that it felt like I was drunk. I had no control of anything.
‘I was constantly sick. Even now I’m not back to normal. I suffer massively with fatigue and headaches. If it’s cold, my scar hurts.
‘I could go a year without seizures and then I could get six or seven a day.’
Jeni says her relationships with her family and friends have been important but difficult.
‘I was really close with my family. But as a cancer patient you want everyone else to understand how you are feeling and if you haven’t had cancer then you don’t know.
‘I met people with different types of cancer and we all had such different stories. I used to get frustrated a lot because it was incurable. That means forever.’
Although surgeons removed the majority of her tumour, they were unable to remove it all.
‘The plan at the moment is to try and control it. I am taking 10 or 11 tablets a day,’ says Jeni.
‘There is still some of the tumour there but it’s stable. It’s still alive but it’s not massively growing. It’s not going to kill me tomorrow like a high grade tumour would.
‘So it’s about maintaining it and keeping it at this level with steroids.
‘I’ve been told to try to live a normal life like I wanted to before – just don’t push my boundaries.’
Her book is called Jack And Jen. She wants to raise awareness about the symptoms of a brain tumour and also to help raise money for The Brain Tumour Charity.
The title comes from Jeni’s decision to name her tumour Jack.
‘The whole idea of naming my tumour was almost like identifying it was with me forever and it took some fear out of it as calling it Jack made it familiar,’ she explains.
‘Brain tumours are the biggest cancer killer in children and adults under 40.
‘But people don’t know a lot about them. I thought if I wrote a book about what I have been through I could raise awareness.
‘A lot of the people I met who had brain tumours have died now. I want to stop other people going through this and stop parents losing their children unnecessarily.’
Jeni is now looking to the future. She moved to Gosport in June, is living with her grandparents and completing an Open University course with dreams of becoming a teacher one day.
‘I am starting to finally feel positive about things. The move was a new chapter in my life.
‘The doctors thought I wouldn’t live to 22 and I’ve just celebrated my 22nd birthday. The future is going to be even better than I imagined.’
To make a donation in support of Jeni, please visit justgiving.com/fundraising/Jenniferamyfund
Visit amazon.co.uk to buy a copy of Jeni’s book.
BRAIN TUMOUR CHARITY
The Brain Tumour Charity fights brain tumours through research, awareness and support.
It funds pioneering research to find new treatments, improve understanding, increase survival rates and bring a cure.
The charity also raises awareness of the symptoms and effects of brain tumours, to reduce diagnosis times and make a difference every day to the lives of people with a brain tumour and their families, as well as providing support and information for anyone affected to improve their quality of life.
Geraldine Pipping, director of fundraising at The Brain Tumour Charity, said: ‘We receive no government funding and rely 100 per cent on voluntary donations and gifts in wills. Brain tumours are the biggest cancer killer of children and people under 40 in the UK and survival rates have not improved significantly over the past 40 years. This must change.’
All proceeds from the sale of Jeni’s new book Jack and Jen will go to The Brain Tumour Charity.
SYMPTOMS OF A BRAIN TUMOUR
Severe, persistent headaches – which are typically worse in the morning or when bending over or coughing.
Persistent nausea and vomiting
Vision problems – such as blurred vision, floaters and loss of vision that may come and go.
Seizures (fits) – which may affect the whole body or just involve a twitch in one area