About Me – Claire Bullimore, Aunty M Brain Tumours

Hi, I’m Claire Bullimore, founder of Aunty M Brain Tumours, author, podcast host, interviewer and, most importantly, somebody who knows first-hand how completely a brain tumour can turn life upside down.

I didn’t set out to become a brain tumour advocate. In 2008, when I was 25 years old, I was diagnosed with a 10cm intraventricular meningioma and underwent emergency brain surgery. I thought surviving the operation would be the difficult part. I had no idea how much of the story would actually happen afterwards.

My Brain Tumour Story

Before my diagnosis, I was a young woman getting on with my life. Then came headaches, problems with my sight, blackouts, exhaustion and other symptoms that gradually became impossible to ignore. Eventually, doctors discovered the enormous tumour in my brain.

Brain surgery saved my life, but it didn’t simply return me to the person I had been before. I was left dealing with changes to my sight, memory, language and confidence. Even now, I can struggle to find the word I want, forget names or say a completely different word from the one I meant. Recovery wasn’t the neat before-and-after story I had imagined.

It was frustrating. It was frightening. Sometimes it was lonely. And occasionally it was so ridiculous that the only thing I could do was laugh. That combination of seriousness and humour has stayed at the heart of everything I do.

Why I Started Aunty M Brain Tumours

After my surgery, I wanted to find other people who understood what life after a brain tumour was really like. Not only the medical side. I wanted people to talk about the bits in between. What happens to relationships? How do you cope when you look well but don’t feel like the person you used to be? What happens when you can’t remember a word halfway through a sentence? How do families cope? What does recovery actually look like years later?

I started Aunty M Brain Tumours in 2011 on social media platforms as a place where we could talk openly about those things. I started fundraising for several brain tumour charities around the UK. Over the years, my own story became only a small part of it.

From My Story to Hundreds of Other Voices

In 2013, my mum Eileen and I began presenting a radio/podcast programme on a local radio station. What started as two women sitting behind microphones with cups of tea became an opportunity to speak to people affected by brain tumours from all over the world. We spoke to patients. Survivors. Parents. Partners. Carers. Charities. Campaigners. Researchers. Doctors and other healthcare professionals. The radio programme eventually came to an end, but Aunty M Brain Tumours didn’t.

I continued interviewing people through podcasts and YouTube, and today the Aunty M Brain Tumours Talk Show continues to give people the space to tell their own stories. My approach is simple:

No scripts. Just voices being heard.

I don’t want every brain tumour story turned into an inspirational story. Sometimes people are positive. Sometimes they’re angry. Sometimes they’re frightened. Sometimes they’re grieving.  Sometimes they’re laughing. Usually, they’re a mixture of all of those things.

I want people to be able to tell the truth.

Every Brain Tumour Story Matters

One of the reasons I have continued doing this for so many years is because there isn’t just one type of brain tumour experience. There are many different types of brain tumour and every diagnosis brings its own questions. That is why you’ll find stories across this site from people affected by diagnoses including meningioma, glioblastoma, astrocytoma, oligodendroglioma, acoustic neuroma, craniopharyngioma, ependymoma, medulloblastoma, schwannoma and many others.

Some people are newly diagnosed. Some are many years beyond treatment. Some live with an inoperable tumour. Some are on watch and wait. Some stories are told by parents, partners or family members. And sadly, some stories are shared in memory of somebody who is no longer here.

They all belong here.

My Book

My own brain tumour story eventually became a book:

A Brain Tumour’s Travel Tale: Cards on the Table, I Pooed Myself

Yes, that really is the title.

I wanted to write the book I would have appreciated when I was recovering — something honest about the frightening parts without pretending that every moment had to be tragic or inspirational.  It covers diagnosis, emergency brain surgery, seizures, invisible disability, relationships, identity, recovery, grief and learning how to live differently. And there is quite a lot of poo. Because real life after brain surgery isn’t particularly polished.

The book is now available as a paperback, Kindle ebook and Audible audiobook.

What You’ll Find on Aunty M Brain Tumours

If you’re new here, you can explore:

• Brain Tumour Survivor Stories – real experiences from people with many different diagnoses
• The Aunty M Brain Tumours Talk Show – long-form interviews where guests tell their stories in their own words
• Brain Tumour Experts & Charities – conversations with professionals, researchers and organisations
• Blog – my own writing about recovery and long-term effects
• My Brain Tumour Memoir – my full story in paperback, Kindle and audiobook
• The Aunty M Archive – earlier radio shows, podcasts and interviews from the history of Aunty M
• Seen In Press

Why I Still Share

People sometimes ask why I still talk about something that happened to me so many years ago. Because diagnosis wasn’t the end of my brain tumour story. And I know I’m not the only person who has discovered that. Sometimes somebody finds one of these stories at two o’clock in the morning after receiving a diagnosis. Sometimes it’s a parent desperately looking for another parent who understands. Sometimes it’s somebody years after surgery wondering why they’re still struggling. And sometimes somebody just needs to hear:

“Yes. Somebody else has experienced that too.”

If this website can provide that moment, then it is doing what I created it to do. You don’t have to turn your diagnosis into a mission. You don’t have to be inspirational. And you certainly don’t have to be positive every day. But you do deserve to be heard.

Thank you for being here.

Claire x

Aunty M Brain Tumours