by It was the first sign of car sickness on a trip I had done many times before. I never got car sick as a kid and that was weird. Then I had what I thought was a migraine – visual disturbances, a lot of vomiting.
This progressed to constant headaches and sinus problems, with my vision gradually deteriorating. It felt like I was staring at the sun.
This started in December 2021, just a few months after I returned to work from having my son Jonah. He was just over a year old. The vision problems really worried me because of my job.
I was an antiques specialist in glass and ceramics for auctioneers Lyon & Turnbull in Edinburgh, and also for Antiques Roadshow, appearing in a few episodes of theirs a year. It was really important to analyze and look carefully. I knew my vision wasn’t right.
I went to my GP, had an eye test, paid for a private medical checkup. “Migraines” was one diagnosis, sinusitis was another. Painkillers didn’t touch the sides – by this time, I had massive, pulsating pains in my head. In April 2022, another migraine – which I now think was a seizure – put me in bed for weeks and I was signed off sick.
Through it all, Googling avoided my symptoms. I’ve always been concerned about health and Googling is nowhere good. Now, however, I did and “fluid on the brain” came up. I read that it could lead to sight loss and that prompted me to go to the A&E at the Royal Infirmary in Edinburgh with my mum in June 2022.
We saw a junior doctor who listened carefully and put me through a CT scan. About 90 minutes later, he came back and I could tell by his face that he was not well. He said: “I’m very sorry, but we’ve found a 5cm mass on the right side of your brain.”
I think I asked, “Is it cancer?”
“Yes,” he said.
He told me they had to let me in now and they could work. I remember saying, “I’m so sorry for you, that I have to give you this news.” He was gentle, calm, kind. That was all I could think about in that moment.
It was hard to take in completely. My mother was very upset and upset, but no one was crying. 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 some point, my mom stepped in and offered to call him. It must be a very difficult call to make. It was completely destroyed.
The next day, I had a full body MRI scan, and that’s when the neurosurgeon came in and told me he was pretty sure this was glioblastoma. He explained that the operation would probably remove more than 90 percent of the tumor but not all of it and that this was incurable. He would come back. Without treatment, he said I had three months to live.
It is a confusing, contradictory, contradictory journey. Obviously I was shocked, I was worried, but it was also a great relief to physically feel the pain for the first time in months.
In hospital I was given steroids which reduced the pressure in my brain very quickly. I was on liquid morphine. I had an appetite again. I also finally got an answer. Not that no one was listening.
It was just that no one around me – my GP or my family – could have imagined in our worst nightmares that this was going to be a cancerous tumour. One of the things we did, in the hospital, was to get a solicitor to come in and sort out our wills – so we were thinking about quitting time – but at the same time, I was also at the beginning . I faced surgery, radiotherapy and chemotherapy.
The operation took five hours and went well. I went home four days later. Walking into the house it felt so different. My life had completely changed since the last time I was there. Alex and my mother had deep cleaned everywhere to make it as nice as possible. There were so many flowers, cards and gifts – body lotions, biscuits, brownies.
It was June, sunny and warm. Before my diagnosis, the light hurt my eyes so much, I had to wear sunglasses indoors. Now I just wanted to enjoy the sunshine with the curtains open.
Back home, I remember reading a bedtime story to Jonah when he hit me. Oh my God, how many more of these will I get? I cried, says Alex, but I don’t think Jonah was distressed, he was still tiny. We finished the story. Jonah is three now and I have never explained anything about this to him.
I don’t think he needs scary information, it would confuse him. How do you explain this to such a young child? We’re just keeping things as normal as possible.
I’ve had radiotherapy and chemotherapy – all treatment finished in March 2023. Now it’s just scans every three months. I didn’t want to know my life expectancy.
I would live my life accordingly, always counting down. It would put so much of my hope into action. All my scans were stable – apart from one where the tumor had shrunk slightly. My last scan was in January.
I went back to work but the fatigue was too much. I still have headaches and the days I’m wiped out. I work in the morning here or in the evening there but I can’t be full time. I will not do Antiques Roadshow this summer, especially since I’m not handling things regularly.
The prep would be too much. When I was diagnosed, I remember thinking, “Do I need to change anything? What do I want to do?” Actually, I realized that I was very happy with my life.
My priority is spending time with my family. It’s not about bucket lists. He’s taking my son to play softball, or to the park, or walks to the beach with Alex, Jonah and the dog.
There is a kind of sadness when you lose things. I am sorry about my old vision of my future. I accepted that I was going to be an old man and see my son grow up, but I don’t know what the future holds now. I never plan for the long term. There are things in my diary later this year, but I just said: “If I’m fine.”
I have heard what my oncologist and surgeon said. I know that the tumor will come back and to some extent, I have accepted that it will take my life, but that does not mean that I am not desperate for change, for better treatments and a cure.
Whatever happens, I have no doubt that Jonah will be well taken care of and loved. I’m not worried about that. Alex is a good father. He works from home as a software developer and was great and carried the family.
Right now, we’re talking about schools for Jonah next year, but I didn’t feel the need to write any directions or wishes for his future. Partly because it would be offensive to Alex and also because it would be like saying I’ve given up hope.
What worries me is the trauma my family will go through at some point. In some ways, it is much easier to have cancer than to watch someone else go through it.
Being a patron of Brain Tumor Research has given me so many purposes. Every day, I talk to someone living with or having a brain tumor – mothers and fathers, husbands and wives, sons and daughters.
Some of my closest friends are now 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 the bad news, but now that it has happened, I have moved on.
I’ve been lucky – I’m 21 months with stable scans – but when things go wrong and the tumor grows back, treatment options will be very limited. It will be hard to maintain positivity but I see people do it all the time.
I know people who have it spreading across 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 cancer but receives only 1 percent of national spending on cancer research.
That has to change – so I’ll be making as much noise as I can.
Wear A Hat Day, supported this year by Novocure, will take place on Thursday 28 March, during the 15th anniversary of Brain Tumor Research. To find out more, visit wearhatday.org
