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Being Benign – Callum Ewing’s story

Callum is a recent broadcast journalism graduate who used his final project to highlight his brain tumour diagnosis. Being Benign is a two part documentary where he interviews his parents, others in the brain tumour community and also a professor who works on childhood brain tumours.

Read Callum’s guest blog post below

My name is Callum Ewing, and I am a recent broadcast journalism graduate from the University of Salford. I have been asked to write this blog post because, for the last four months, I have been creating a radio documentary on the effects that benign brain tumours can have on people.

Before I go into detail about why I created a documentary on benign brain tumours, I should set the scene and go all the way back to when I was diagnosed with a benign brain tumour.

The diagnosis

It’s February or March 2003. I am just two years old, and I am about to watch an episode of Scooby-Doo. My Mum is at work, and my dad is getting ready to probably watch the same Scooby-Doo episode for the fifth time. As I am staring at the screen and watching a talking dog get once again chased by a person in a mask and munching on a digestive biscuit, my dad notices something odd. He notices that the corner of my eye is flickering rapidly up and down. You can’t see it when looking straight at me, only on my side profile.

Thank God my dad noticed and my parents took me to my local GP, and I was of course still upset that Scooby Doo had been switched off. They did some tests on me and sent me off for an MRI scan.

Flash forward a few weeks, and we are at Brighton Beach for a family day out. Mum and Dad are happy, but they have been expecting a phone call from Great Ormond Street Hospital at some point. That point in time came at Brighton Beach, and I was diagnosed with a benign brain tumour.

The Tumour

The tumour I was diagnosed with is called an optic chiasm glioma, and it sits right in the middle of my forehead. I had to undergo 18 months of aggressive chemotherapy and multiple blood transfusions; I was implanted with a port; and I had to have constant anaesthetics. Quite a lot for a two-year-old.

Due to the location of the tumour, it was very close to my optic nerves, and the reason that my eye was flickering was because the tumour had crushed the optic nerve in my right eye. I am therefore permanently blind in my right eye.

The treatment thankfully managed to work in time for my other optic nerve to be saved and for my hypothalamus to be unaffected.

I got discharged in 2019 from the University College of London, so I no longer need MRI scans, but I still need regular eye checkups, and I will need that for the rest of my life. However, in the grand scheme of things, I think that is a good outcome.

Making Being Benign

This all leads back to the documentary I mentioned at the start of the article. For my final major project for my course, we must create a 10-minute radio or TV documentary on any subject of our choice. I chose to focus on benign brain tumours and the effects they have on people, even though they are not cancerous.

As you have been reading, this was a very personal documentary for me, but I also wanted to get other people to tell their story and talk to medical professionals who can explain what exactly benign brain tumours are. I feel that benign brain tumours are misunderstood because people see the word benign and think that non-cancerous tumours must be harmless and that we have been given the ‘lucky’ and ‘better’ brain tumour diagnosis. Now, of course, my heart goes out to everyone who is suffering from malignant tumours, but just because malignant tumours are more dangerous does not mean benign tumours are something to be happily diagnosed with. I do feel that a low-grade tumour is the right phrase, rather than benign.

You can listen to the two episodes of my documentary below.

Episode One

Callum at Queen Mary University London when he met Professor Denise Sheer

The first episode goes over my story, but we also hear from a mother whose daughter is suffering from a benign tumour called a craniopharyngioma and from Professor Denise Sheer, one of the leading researchers at the Everest Centre, where special research is taking place to help with benign brain tumour treatments.

Episode Two

The second episode focuses on three case studies of people who have all been affected by benign brain tumours. The first one is with a student from Sheffield Hallam University who talks about their struggles with an epidermoid; the second interview is with comedian Miles Jupp, who talks about his tumour experience and how he turned it into a comedy show. The third interview is with a mother who wrote a death letter due to her fear of brain surgery.

Callum meeting and interviewing Miles Jupp

I loved making this documentary and talking to people who wanted to share their stories. I hope that if you listen to the episodes, it makes you feel that you are not alone, and I hope this can help raise awareness and knowledge of benign brain tumours.