Alison's story

As part of Headway's ABI Week 2024 A Life Re-Written campaign, Alison shares her experience of how her life was ‘rewritten’ after a shock tumour diagnosis.

Alison Goodrum, 49, had suffered from headaches all her adult life and was shocked when, following a visit to the optician, she was diagnosed with a brain tumour in December 2018.

Since her diagnosis, Alison has found a new path in life and she’s now sharing her story as a part of Headway’s Action for Brain Injury Week, which runs May 20-26.

This year’s campaign A Life Re-Written, explores how brain injury can affect anyone at any time, focussing on how it throws plans into disarray and can even alter people’s sense of identity. The campaign is fronted by BBC The Traitors star Andrew Jenkins, who sustained a brain injury following a car crash. Andrew interviewed Alison for a series of videos as part of the campaign.

Alison said:

My life was rewritten in December 2018, when I was diagnosed with a brain tumour

“But actually, my life had begun to be rewritten quite a long time before that, because I experienced a slow, steady decline in my health. Unlike a lot of brain tumours, mine was not a sudden crisis in that I had an attack or an episode. I didn’t feel myself and gradually declined.

“The headaches I was having got worse and worse and there was a moment where I was sitting on the edge of the bed with a splitting headache and I thought, ‘This is not on the normal scale of headaches.’ But I didn’t seek help, I just put it down to the fact I was working too hard, I thought I was having a mid-life crisis. I just didn’t know what was wrong with me.”

When Alison went to buy a new pair of glasses and told the optician about her symptoms, alarm bells rang, and they sent her straight to the hospital.

Having initially put her worsening symptoms down to stress or working too hard, when Alison was finally diagnosed with a slow-growing brain tumour, she couldn’t believe it.

“I think I probably went into denial,” she said. “At some point, I thought someone was going to say, ‘We’ve got this wrong’. I was 44 years old with an established career as a university professor.

It was a big bombshell to drop on my family. It’s not just your diagnosis, it’s your loved ones’ diagnosis.

My tumour was non-cancerous but there was only one option which was surgery, so I didn’t really have to make many hard decisions about the options.

The tumour was on my eighth cranial nerve, the one that affects balance and hearing. I had a four-and-a-half-month wait from diagnosis until surgery. I was sleeping for about 22 hours a day, just getting up to make a slice of toast.”

Initially Alison mostly kept her diagnosis to herself, however she did reach out to Headway for support.

“I found Headway’s helpline number and almost immediately phoned them up because I just wanted to speak to people,” she said. “The person on the helpline was just so lovely and with that the floodgates opened, and I sobbed down the phone. And it was one of the few times that everything came out. They were just so helpful and welcoming.”

The Headway Helpline team gave Alison information, factsheets and told her about the Brain Injury I.D Card, which helps people with brain injuries explain their challenges and needs to others. “It’s really useful and really reassuring,” said Alison.

Still, following her brain tumour surgery, Alison had a hard road ahead.

“When I say I had to learn to walk again, that sounds really dramatic, but my balance went entirely, I couldn’t walk and I hadn’t expected that,” she said. “I remember sitting in the bed thinking, ‘I do hope my walking comes back.”’

Fortunately, Alison managed to get back on her feet and found a new way of living her life post-surgery.

My illness forced me to switch from a full-time to a part-time role at my university and, with that, fresh opportunities knocked,

she said.  “For the first time ever, I had space in my working week to spend away from my academic pursuits,” she said.

This scenario gave rise to ‘Goodrum & Merryweather’, Alison’s handmade millinery studio.

Alison explained: “The craft of millinery, and my development as a milliner, has been an exceptionally important part of my convalescence.  A meditative practice.  A creative act.  A silver lining.  The list goes on.  Making a hat is an absorbing, labour-intensive, process involving painstaking working by hand.”

Alison has now made many stunning hats and even created one to be auctioned off to raise funds for her local Headway charity, Headway Norfolk and Waveney.

Alison said: “My hat-making was never intended to be this big! I’d had a lot taken away from me by my tumour, and I felt this was something I was actively making rather than having taken away.”

You can see more of Alison’s handmade hats on the Goodrum & Merryweather website.

Browse the links below to explore the campaign and the issues covered in this story.