The first symptom was car sickness, which I had done many times before. I had never experienced car sickness as a child, this was very strange. Then I had what I thought was a migraine; blurred vision, profuse vomiting.
This led to constant headaches and sinus problems, and my vision gradually worsened. I felt like I was looking at the sun.
This started in December 2021, just a few months after I returned to work since the birth of my son, Jonah. He was just over a year old. I was really worried about vision problems due to my job.
I was an antiques expert in glass and ceramics for auctioneers Lyon & Turnbull in Edinburgh. Antique Promotion Tour, appearing in several episodes a year. It was really important to analyze and look carefully. I knew my view wasn’t correct.
I went to the GP, had my eyes tested, paid for a private examination. “Migraine” was one diagnosis, sinusitis was another. The painkillers did not touch the sides; I now had huge, throbbing pains in my head. In April 2022, another migraine, which I now thought was a seizure, left me in bed for weeks and I took sick leave.
Thanks to all of this, I avoided Googling my symptoms. I’ve always had health concerns and googling never leads anywhere good. But now I did and “fluid on the brain” appeared. I read that this could lead to you losing your eyesight and this is what triggered me to go to A&E at the Royal Infirmary in Edinburgh with my mother in June 2022.
We met a very young doctor who listened carefully and took me for a CT scan. He came back about 90 minutes later and I could tell from his face that the situation was not good. “We are really sorry, but we found a 5 cm mass on the right side of your brain,” he said.
I guess “Cancer?” I asked.
“Yes,” he said.
He said they had to accept me now and they could operate. I remember saying, “I’m really sorry you had to break this news to me.” He was gentle, calm and gentle. That was the only thing that came to my mind at that moment.
It was hard to take it in completely. My mother was very surprised and sad, but no one was crying. My partner Alex was at home with Jonah. I called his mother and told her that he had a cancerous tumor in his brain. “How do I tell Alex?” I asked. At one point my mother stepped in and offered to call him. It must have been a very difficult decision to make. He was absolutely miserable.
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 it was glioblastoma. He explained that the surgery would likely remove more than 90 percent of the tumor, but not all of it, making it incurable. He would return. He said I had three months left without treatment.
It’s such a confusing, contradictory, contradictory journey. Frankly, I was shocked and worried, but it was also a huge relief to be physically free of pain for the first time in months.
At the hospital I was given steroids, which very quickly reduced the pressure in my brain. I was using liquid morphine. I’ve got an appetite again. I finally got an answer. It wasn’t that no one was listening.
No one around me – not my doctor or my family – could have imagined in our worst nightmares that this would be a cancerous tumor. One of the things we did in the hospital was to get a lawyer to come and sort out our wills – so we thought we were out of time – but I was also at the beginning. I had surgery, radiotherapy and chemotherapy ahead of me.
The operation took five hours and went well. I went home four days later. Entering the house felt very different. My life had completely changed since I was last there. Alex and my mom gave the whole place a deep clean to make it as nice as possible. There were so many flowers, cards and gifts; body lotions, biscuits, cakes.
It was June, sunny and warm. Before I was diagnosed, light hurt my eyes so much that I had to wear sunglasses indoors. Now I wanted to enjoy the sun with the curtains open.
When I got home, I remember reading a bedtime story to Jonah. Oh my god, how many more of these will I buy? I cried, Alex cried, but I don’t think Jonah was distressed, he was still so little. We finished the story. Jonah is three years old now and I haven’t explained anything to him about this.
I don’t think he needs scary information, it would confuse him. How do you explain this to such a young child? We keep things as normal as possible.
I underwent radiotherapy and chemotherapy; all treatments ended in March 2023. Now screening is done only every three months. I never wanted to know my expectations from life.
I would live my life accordingly, always counting down. This would determine much of my hope. All my scans were stable except where the tumor had shrunk slightly. My last scan was in January.
I returned to work, but the fatigue was too much. I still get headaches and there are days when I feel exhausted. I work there in the morning or afternoon, but I can’t be full time. I won’t Antique Promotion Tour this summer, especially since I haven’t been touching things regularly.
The preparation would be too much. When I was diagnosed, I remember thinking: “Do I need to change anything? What do I want to do?” I realized that I was actually really happy with my life.
My priority is to spend time with my loved ones. This isn’t about to-do lists. Taking my son to soft play or the park, or walking to the beach with Alex, Jonah and the dog.
There is a kind of grief when losing things. I suffer from my old vision of my future. I was certain that I would be an old person and see my son grow up, but I don’t know what the future will be like anymore. I never make long term plans. I have things in my diary for the end of this year, but I just said: “If I’m good enough.”
I heard what my oncologist and surgeon said. I know the tumor will come back and I have accepted that it will take my life to some degree, but that doesn’t mean I’m not desperate for change, better treatments and cures.
No matter what happens, I have absolutely no doubt that Jonah will be well cared for and deeply loved. I’m not worried about anything. Alex is a very good father. He works from home as a software developer and was a great person and carried the family.
We’re currently talking about Jonah’s schools for next year, but I haven’t felt the need to write down any instructions or wishes for his future. This is partly because it’s like insulting Alex, but also because it’s like saying I’ve given up hope.
What I’m really worried about is the trauma my family will experience at some point. In some ways, getting cancer is much easier than watching someone else go through it.
Being a patron of Brain Tumor Research has given me so much purpose. Every day I talk to someone who is either living with a brain tumor or living with someone who has a brain tumor; mothers, fathers, husbands and wives, sons and daughters.
Some of my closest 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 kept going.
I’ve been lucky – my scans have been stable for 21 months – but when things go wrong and the tumor grows back, treatment options will be very limited. It will be difficult to maintain positivity but I see people doing it all the time.
I know people who have a tumor that has spread to their brain, but they still wake up every day and live their lives. Brain tumors kill more children and adults under 40 than any other type of cancer but account for only 1 percent of national spending on cancer research.
This needs to change; So I will continue to speak out on this issue as much as I can.
This year, Wear a Hat Day, supported by Novocure, falls on Thursday, March 28, the 15th anniversary of Brain Tumor Research. To learn more, visit: weararahatday.org