My husband, Doug, was diagnosed with a brain tumour in 2008. It came like a bolt out the blue as he had never been ill. He had an operation at Hurstwood Park, a specialist neurological hospital in Haywards Heath, following which we attended a support group for brain tumour patients and their carers where we met Gill, our Macmillan nurse, and my husband was enthralled - she was so lovely.
That September I decided to hold a coffee morning and we raised £462. My husband happily sat in the garden chatting with our friends who came and went. It was easy money really, so simple to do.
The following year Doug was in hospital for nine weeks, following a seizure, but we held another coffee morning, as I knew he would want me to, and raised over £600. Sadly, Doug passed away in October 2010, but I have raised over £4,500 from coffee mornings over the last six years.
In 2011 the person running the Sussex Brain Tumour support group decided to retire. I knew my husband would want others to be able to benefit from the group, so I took it over with Charlotte, a patient.
I get so much from running the support group. It helps people to see that they don’t need to feel different. It is for brain tumour patients and carers, but the focus isn’t just on brain tumours. It is so nice to see people flourish and become confident enough to share their experiences with others in the group. That’s the rewarding part, seeing people being themselves, not patients or carers.
I’m glad to be involved with the user group, helping to shape the Cancer centre, as I can pass on my experiences to the group - the role of the carer is almost as important as the patient’s. I think that people will travel to the new centre when they know what is available. Often they feel alone when their treatment has finished and they don’t know what is available for them. I think the new Centre will fill that void, and help signpost them to further support.