Steve's story

Steve Wiseman had a unique understanding of brain injury prior to being diagnosed with a brain tumour five years ago.

Steve used to work in brain injury rehabilitation, helping to organise various therapies for survivors, as well as support individuals in returning to work.

And then in 2021, he found himself in his client’s shoes, experiencing debilitating effects of brain injury, like fatigue, communication struggles, and memory and balance issues.

This is his remarkable story in his own words.

“For some years I worked as a Case Manager as part of the Nottingham Traumatic Brain Injury Service (NTBIS). I had a caseload of individuals who had survived a traumatic brain injury and who were in hospital or living at home. I would organise their therapy (e.g. neuropsychology, occupational therapy, physiotherapy) as well as offering day to day support such as helping them to return to work.

“My case manager post was part-time, so I started an independent business focussing on technology for people with disabilities. It was a satisfying career but little did I know what lay ahead of me.

“It all started with my right foot beginning to drag which, initially, I put down to walking awkwardly, as I wear a splint on my left foot due to an unrelated issue. But as my mobility worsened, I went to see my GP. He couldn’t work out what was going on, so I paid for appointments with a physiotherapist and a neurosurgeon, but neither could provide a useful diagnosis.

“I wasn’t getting any better, in fact I was going downhill. I think, with the wisdom of hindsight, that deep down I knew what was wrong with me but I thought that I could ‘think’ it away. After all, it would be such irony for someone who worked in brain injury rehab to have a brain tumour!

“By this time my health was deteriorating rapidly and eventually my wife dialled 111 in the middle of the night. We ended up going to A&E. At the hospital I was poked and prodded and eventually had a CT scan.

"There was a ‘blob’ covering 20 square cm of the left side of my brain. A tumour. Actually a meningioma, which is a kind of tumour.

“I felt numb with fear and burst into tears, thinking of those I would leave behind. For death seemed a certainty.

“I recall the doctor telling me that I should stop working immediately, that I should get my affairs in order. It was an emotional time.

“I was admitted to a ward that day and put on a dose of steroids and, two weeks later, the tumour was removed or ‘resected’. Immediately when I came round after the operation I felt a whole lot better. I could even move my foot!

“As a matter of course a biopsy was taken of the tumour. This turned out to be a Grade III meningioma, which meant that my chances of survival weren’t good as there is a serious risk that it could return. Therefore, I had to have radiotherapy to reduce the chances of a reoccurrence.

“This has had serious side effects, in that healthy brain tissue was, perhaps inevitably, damaged. Consequently, I suffer from memory problems, issues with balance and proprioception (your body’s ability to sense its own position and movements in space), difficulties with finding the right words and fatigue. I have focal epilepsy which affects my right arm and leg; I’ve had a hip replacement as one of the side effects of taking steroids is osteonecrosis; and my hand shakes, so I can barely sign my name.

“As I used to work in brain injury rehabilitation, this has given me an insight into the effects of brain injury.

“Whilst I’ve already lived longer than expected (and I intend to continue doing so!) there are relatively few people with a grade 3 meningioma. Therefore, there’s a limit regarding the amount of information about outcomes. The information paints a confusing picture regarding survival.

“This episode has affected those around me, especially my family. My wife now has a caring role, my son is now running my business. It’s not only me grieving for the person I used to be.

“I recognise that I won’t ever be the person I was, but it’s been a very gradual acceptance.

“And the future? I’m not ‘out of the woods’ yet; there’s much uncertainty, but I’m pleased to report that there does seem to be a marked improvement.”