My optician saved my life.
Brain Tumour Support helped me put it back together again.
In 2013, Jane, a mum from Bath whose partner was recovering from a heart attack, went to see her optician. She’d had a puffy eye and some numbness in her face that her GP had dismissed, so she wasn’t actually worried about her eyesight – she had just broken her glasses and needed them to be mended.
But after an eye test, her optician immediately referred her for scans. “She faxed a letter to my GP the same day and was very insistent that I get looked at immediately,” said Jane. “Her persistence saved my life.”
Jane had a brain tumour. A meningioma, growing very close to her carotid artery.
After surgery that resulted in a scar from ear to ear and a metal plate in her skull, Jane’s life was changed for ever. Until then, she had been working full time as a Senior Social Worker at a local authority and was the main carer for her 10-year-old son.
“I was very unwell,” said Jane. “I couldn’t get off the sofa or even walk to the end of the garden. I couldn’t move my mouth properly so eating was difficult. My friends and neighbours did everything for me.”
She was determined that she had to get back on her feet. “My son needed me,” she said. “I had a mortgage to pay and a son who was traumatised. I just had to get my life back on track.”
Adjusting to a new normal
Slowly but surely she was able to go for longer walks and do more for herself. “It’s so hard to put into words what brain surgery does to you,” said Jane. “The fatigue I felt was something else. I didn’t know myself any more. I found it difficult to follow conversations; I got overwhelmed easily; I had double vision; and found decision making really difficult. I didn’t know my own capabilities anymore and had to re-learn about my body.”
Learning to work again was another hurdle Jane had to overcome. Negotiations about returning to work were complicated and stressful, but with support from family, trade union and occupational health, Jane's employer agreed to a return to work plan with reasonable adjustments. Equipment and taxis to work were provided via Access to Work and Jane’s opinion is now sought at work on various disability issues.
“I have shown that people can get back to work successfully following brain surgery,” said Jane. “I have also been voted in as Chair of my employer's Disabled Employees Group, and this gives me more opportunities to challenge negative discriminatory attitudes and practices, and raise the profile of equality in the workplace. If only all employers realised that if they invest in helping a disabled employee get back to work, they will be rewarded with someone dedicated, hard-working and committed.”
A new challenge
Jane felt like her life was back on track. She still had good days and bad days, but she was doing well in her job, she had got her driving licence back and her physical strength was improving. Then one day, on a training course, she found herself saying that she would run the Bath Half Marathon. “I honestly don’t know what came over me,” said Jane. “I could just about take the dog for a walk at that point. I had never run before in my life.”
Jane started off using the BBC Couch to 5K app to help her build up to running 5km. “It should have taken me nine weeks,” said Jane. “I took twice as long, but I did it. I wouldn’t call what I did ‘running’ – it was more like plodding.”
Despite getting terrible headaches, dizzy spells and even falling over several times, she got herself a new pair of running shoes and started building up from 5km to 10km. “I didn’t want to join a group,” said Jane. “I honestly didn’t think I would be able to do it and I didn’t want other people to see me fail, so I did it on my own.”
Before she knew it, she had run 10km and the day of the Bath Half Marathon had arrived. “I had two wonderful friends who ran with me and we had a rescue plan in place in case I couldn’t manage it,” said Jane. “But I did it! In 3hrs and 44sec. It was a steady plod and I walked up any gradient, but I did it. I cannot tell you how it felt to cross that line. It was about so much more than just completing a run. It was a celebration of how far I had come.”
Finding a lifeline
It was also about thanking the charity that helped her on her journey. Jane raised more than £1,500 in sponsorship for Brain Tumour Support.
“When I got diagnosed, I didn’t know anyone who had had a brain tumour. I didn’t know who to turn to for advice or support,” said Jane. “But then I found my local Brain Tumour Support Group and everything changed. Everyone talked about their fears so openly and honestly, it was amazing. I also saw a counsellor, provided by Brain Tumour Support. She came to my house. She put me back together again. She helped me get to know myself again.”
Jane never goes a day without wearing her Brain Tumour Support wristband. Referring to it she says “This is my lifeline – every day”.
Read more about how we help
Brain Tumour Support offers support to brain tumour patients and their families in a variety of ways - support sessions and groups, one-to-one, counselling, telephone and on-line support.