When Helen was diagnosed with a grade one meningioma, she was in too much shock to read all the information and support leaflets she was given. It was only months later, after the tumour had been removed and she was off work, that she looked through them and found Brain Tumour Support.
At the time, she was struggling with fatigue and other side effects such as opthalmoplegia – her right eyelid will not open, even though her surgeon had told her it would recover. “Several caring people had said to me that ‘I bet you can’t wait until you’re back to normal’ or that I must be looking forward to ‘being 100% again’ and I just could not see that ever happening,” said Helen. “So I plucked up the courage to go along to the Exeter Support Group and I’m so glad I did!”
“I found a lovely group of people with whom I can be brutally honest. We talk about everything and anything and I know they understand if I am having a rubbish day. They have also helped me realise that there is no ‘back to normal’ after the experience I have been through. There is instead a ‘new normal’. And that’s OK.”
Helen is a Slimming World Consultant and understands the power of peer-support. “It’s about knowing you are not alone and being able to talk to people outside your usual friends and family. People who are going through similar experiences.” she said. “The Support Group also helps members get some perspective on their situation.”
“I do still have the odd moment where I suddenly get upset at having lost the 'old me', which is ridiculous, because let's face it, it's a broken eyelid. Perspective is everything in situations like this and if being alive means having to have a broken eyelid for the rest of my life, I think I got off lightly.”
Visit our Support Groups page to find out more about our regional groups which are there to support not only patients, but their loved ones and carers too.