‘I’m 37 and have terminal cancer – I’m mourning the future I’ll never have’

“It’s such a confusing, contradictory, contradictory journey,” says Theo

The first symptom was motion sickness on a trip I had made before. I’d never had motion sickness as a kid, so that was strange. Then I got what I thought was a migraine: visual disturbances, lots of vomiting.

That evolved into constant headaches and sinus problems, with my vision getting worse and worse. It felt like I was staring at the sun.

This started in December 2021, just a few months after returning to work since having my son Jonah. He was just over a year old. The vision problems were a major concern for me because of my work.

I was an antiques specialist in glass and ceramics for the auctioneers Lyon & Turnbull in Edinburgh, and also for Antique Roadshow, which appear in a few of their episodes each year. Analyzing and looking carefully was very important. I knew my vision was just wrong.

I went to my GP, I had my eyes tested, I paid for a private medical check-up. Migraine was one diagnosis, sinusitis another. Painkillers weren’t hitting the sides – I was now in massive, pulsating pain in my head. In April 2022, another migraine – which I now think was an attack – left me in bed for weeks and I was declared ill.

Through all of this, I had avoided Googling my symptoms. I’ve always had concerns about my health and Googling never turns up anything good. But now I did that and ‘fluid on the brain’ came up. I read that this could lead to vision loss and that was why I went to the emergency department at the Royal Infirmary in Edinburgh with my mother in June 2022.

Theo BurrellTheo Burrell

Theo Burrell’s priority is to ‘spend time with her loved ones’

We saw a fairly young doctor who listened attentively and had me undergo a CT scan. About 90 minutes later he came back and I could tell by his face that it wasn’t good. He said: “I’m really sorry, but we found a 5cm mass on the right side of your brain.”

I think I asked, “Is it cancer?”

“Yes,” he said.

He told me that they had to admit me now and that they could operate. I remember saying, “I really feel sorry for you because I have to break this news.” He was gentle, calm, kind. That’s all I could think about at that moment.

It was difficult to fully absorb it. My mother was very shocked and upset, but no one cried. My partner Alex was at home with Jonah. I called his mother and told her I had a cancerous brain tumor. I asked, “How do I tell Alex?” At one point my mother intervened and offered to call him. It must have been a very difficult decision. He was absolutely devastated.

The next day I had an MRI scan of my whole body, and then the neurosurgeon came and told me he was pretty sure this was a glioblastoma. He explained that the surgery would likely remove more than 90 percent of the tumor, but not all of it, and that this was incurable. It would come back. Without treatment he said I had three months to live.

It’s such a confusing, contradictory, conflicting journey. Obviously I was shocked and worried, but it was also a huge relief to not be in physical pain for the first time in months.

In the hospital I was given steroids which reduced the pressure in my brain very quickly. I used liquid morphine. I was hungry again. I finally had an answer too. It wasn’t like no one had listened.

It’s just that no one around me – my doctor or my family – could have imagined in our worst nightmares that this would become a cancerous tumor. One of the things we did in the hospital was to have a lawyer come and arrange our will – so we were thinking that time was running out – but at the same time I was also at the beginning. I had surgery, radiotherapy and chemotherapy ahead of me.

The operation took five hours and went well. Four days later I went home. Walking into the house felt so different. My life had completely changed since I was last there. Alex and my mother had thoroughly cleaned everything to make it as nice as possible. There were so many flowers, cards and gifts – body lotions, cookies, brownies.

Theo BurrellTheo Burrell

Theo Burrell (center) with her parents Ian (left) and Marion (right)

It was June, sunny and warm. Before my diagnosis, the light hurt my eyes so much that I had to wear sunglasses indoors. Now I just wanted to enjoy the sun with the curtains open.

At home, I remember reading Jonah a bedtime story when it dawned on me. Oh my god, how much more of this am I going to get? I cried, Alex cried, but I don’t think Jonah was upset, he was still little. We have completed the story. Jonah is three now and I’ve never explained any of this to him.

I don’t think he needs frightening information, that would confuse him. How do you explain this to such a young child? We’re just keeping things as normal as possible.

I had radiotherapy and chemotherapy – the whole treatment ended in March 2023. Now it’s just scans every three months. I never wanted to know my life expectancy.

I would have lived my life by that, always counting down. It would have dictated a lot of my hopes. All my scans were stable – except one where the tumor had shrunk slightly. My last scan was in January.

I did go back to work, but the fatigue was too great. I still have headaches and days when I’m wiped out. I work a morning here or an afternoon there, but I can’t be full time. I will not do it Antique Roadshow this summer, mainly because I don’t get to work with objects regularly.

The preparation would be too much. When I was diagnosed, I remember thinking, ‘Should I change anything? What do I want to do?” Actually, I realized that I was very happy with my life.

My priority is to spend time with my loved ones. It’s not about bucket lists. I take my son to soft play, or to the park, or walk to the beach with Alex, Jonah and the dog.

There is a kind of sadness when you lose things. I grieve for my old vision of my future. I had taken it for granted that I would grow old and see my son grow up, but I no longer know what the future looks like. I never plan for the long term. I have things on my calendar for later this year, but I just said, “If I’m okay.”

I heard what my oncologist and surgeon said. I know the tumor will come back and to some extent I have accepted that it will cost my life, but that doesn’t mean I’m not desperate for change, for better treatments and a cure.

Whatever happens, I have absolutely no doubt that Jonah will be well cared for and loved. I have no concerns about that. Alex is such a good father. He works from home as a software developer and he was great and carried the family.

Theo BurrellTheo Burrell

Theo Burrell with her partner Alex on holiday in Palma in July 2023

Right now we’re talking about schools for Jonah next year, but I haven’t felt the need to write down any instructions or wishes for his future. That’s partly because it would be insulting to Alex and also because it would be tantamount to saying I’ve given up hope.

What I do worry about is the trauma my family will go through at some point. In some ways, having cancer is much easier than watching someone else go through it.

Becoming a patron of Brain Tumor Research has made me so excited. Every day I speak to someone who is either living with a brain tumor or living with someone who has one – mothers and fathers, husbands and wives, sons and daughters.

Some of my best friends now are people with brain tumors, so I don’t feel lonely at all. I also learned that I am more resilient than I thought. For a long time I worried about getting sick and underestimated my ability to deal with bad news, but now that it’s happened I’ve just gotten on with it.

I’ve been lucky – I’m 21 months with stable scans – but if something goes wrong and the tumor grows again, there will be very limited treatment options. It will be hard to maintain the positivity, but I see people doing it all the time.

I know people who have a tumor that has spread throughout their brain, but they still get up every day and live their lives. Brain tumors kill more children and adults under 40 than any other form of cancer, yet brain tumors receive only 1 percent of national cancer research spending.

That needs to change, so I’ll keep making noise about it as long as I can.

Wear A Hat Day, supported this year by Novocure, falls on Thursday, March 28, during the 15th anniversary year of Brain Tumor Research. Visit for more information wearahatday.org

Leave a Comment