- Interview with Sue May, founder of the Jersey Brain Tumour Charity.
- She set up the local charity to help Islanders suffering the same thing that she went through.
- Would you know the early symptoms of a brain tumour? Watch the video below.
‘YOU never think it will happen to you – and then it happened to me,’ says Sue May, speaking about the moment she received the devastating news that she had a brain tumour.
Although she had been suffering occasional headaches, which she put down to being under pressure at work, she was fit and well and enjoyed life.
Then one day, after parking her car while on the way to work, she suffered a massive seizure and woke up hours later in the Accident and Emergency Department at the Hospital.
The diagnosis came as a huge shock – especially when she learned that the tumour had been there all her life.
Five years on, not only has the 55-year-old made a full recovery, but she now spends her spare time helping others who have been struck down with similar illnesses after setting up a cancer charity.
‘One day I was driving to work and I parked the car and had a massive seizure. The next I knew I was in hospital. They didn’t know what it was, so I had lots of tests, and then they told me I had a brain tumour. It was quite a shock. But fortunately I was lucky enough that it was benign, even though it was the size of a cooking apple.’
Sue was told that a surgeon in Southampton would operate to remove her tumour, and she returned to Jersey following the operation in September 2010.
She was born with her tumour – which is known as a meningioma – and it had been growing slowly for nearly 50 years before she had any idea that it was there.
‘I was very lucky to have the seizure, because it meant that they could operate,’ she said. ‘But it could have killed me.’
Shortly after her tumour was removed, she realised that there was almost no support for people in Jersey who were living with or recovering from a brain tumour. She said that although there were charities in Jersey like Macmillan and Cancer Research which helped people with malignant or cancerous tumours, there were no charities to help those who had benign brain tumours, as she had, or support for those with brain tumours specifically.
‘I was off work for 15 months after the removal of the tumour and because it was not cancerous I could not go to any of the cancer charities. There was very little support. I used to think, how do people do this? That is what drove me to set the charity up.’
Sue, who lives in St Helier with her partner Michael and her two teenage children, said that people do not realise how common brain tumours are, and Islanders still do not know that the charity is there.
‘Since we have set up, we have helped well over 100 people, including their families,’ she said. ‘There is not enough awareness but there are lot more survivors now because the surgery is so good. A lot more people survive that would not have done, which is great, but at the end of the day there are still a number of affected people out there, and that is why it is so important.’
The Jersey Brain Tumour Charity was initially known as the Sue May Trust and was established in July 2011. Sue went back to work as an HR operations manager after being off work recovering from the operation, and then as the charity began to grow, she spent more time working with the trust, which was re-branded and launched in May 2013 as the Jersey Brain Tumour Charity.
The funds to initially set up the charity were raised by Sue’s partner Michael, who cycled more than 800 miles from John o’Groats, on the north-eastern tip of Scotland, to Land’s End.
Since then, the charity has gone from strength to strength and has grown considerably since the team began working in their small office in St Helier. In England, the support is much bigger, and Sue hopes to be able to operate a similar service for Islanders.
Every year more than £500 million is spent on cancer research in the UK, and less than two per cent of that is spent on brain tumours, despite it being the biggest cancer killer of children and adults who are under 40.
‘I don’t think people realise the extent of the support that is needed, because it’s not just about you as a patient. There are 120 different types of brain tumour. It affects people very differently,’ said Sue.
‘So the type of service we offer is very personal to people, depending on where the tumour is. Some people will have problems with their eyes, ears, memory, walking. We were told to prepare for me to be in a wheelchair and I would possibly lose some speech, so that was quite scary.’
The charity runs a 24-hour helpline, which Sue manages herself, and has an open-door policy for Islanders who want support, but they are always looking for volunteers for fundraising events, as well as sponsorship to ensure that they can continue to help people, both emotionally and financially.
‘We need to be sure that we can be here in the future,’ she said. ‘ It would be horrible to have done all this work and then to run out of money.
‘We are constantly looking at whether we are servicing the needs of the patients and doing everything we can and how can that be done. We are looking to hopefully run a information forum, so that we can reduce diagnosis times.’
Sue describes her job as chairman as ‘fantastic’ and believes that people take a lot of comfort in talking to her, because of her own experiences and her journey to recovery. ‘There is never a dull moment here!’ she added.
More information about the charity and how you can help can be found here.
- Brain tumours are the biggest cancer killer of children and adults under 40
- Over 9,200 people are diagnosed with a primary brain tumour in the UK each year thats 25 people every single day
- Over 500 of these are children and young people, 25 per cent of these will die one child every three days
- Almost 5,000 people lose their lives each year to brain tumours
- Brain tumours reduce life expectancy by, on average, 20 years the highest of any cancer
- Just 14 per cent of adults survive for five years after diagnosis
- Brain tumours are the largest cause of preventable or treatable blindness in children
- Childhood brain tumour survivors are 10 times more likely to suffer long-term disability than well children
Volunteers are always needed to assist patients and their families and friends with everyday tasks that may become challenging, for example:
- Driving patients to appointments/meetings /outings
- Help with shopping
- Assisting with housework, washing and ironing
- Transporting children to school and other activities
- Gardening
- Cooking
- Providing time out so patients and carers are not house bound
- Assisting with paperwork and financial and medical matters which can sometimes be daunting, overwhelming and confusing
- Providing company and being somebody to talk to so people do not feel alone
In addition, Islanders can organise their own events, i.e. cycle rides, walks or runs or make a donation directly to the charity, which will go towards the support of local people who have or have had a brain tumour.
