Clive Weston's story

I have a brain tumour in the right temporal lobe (originally a Grade 2 astrocytoma, now transformed to a Grade 4 glioblastoma multiforme). I have had two sets of surgery under Peter Hamlyn, the Brain and Spine Foundation's founder, and a course of radiotherapy.

I first noticed that something was awry when I unexpectedly passed out whilst on the telephone. Over time my symptoms developed to include headaches, funny ‘turns’ (later identified as epileptic attacks), low mood and vision problems.

One of the worst features was the uncertainty: I suspected that something serious was wrong, and yet I did not know what was causing it. This uncertainty led in turn to inescapable feelings of fear and isolation.

I vividly recall the time when my brain tumour was diagnosed and I read a copy of the Brain and Spine Foundation's booklet on brain tumours. Curiously, one of the main emotions I felt was of relief. By answering so many questions, my diagnosis and the information from the Brain and Spine Foundation helped to allay much of my uncertainty and fear, not to mention the sense of isolation. I began to feel part of a community – including patients and professionals, medical and non-medical – all working together for a common cause with the support of the Brain and Spine Foundation.

It is not just patients who benefit from the Brain and Spine Foundation's information programme. I believe that family and friends maintain their best relationships with a patient only with a full and accurate understanding of what the disorder involves.