Edinburgh-based Jo Apted was diagnosed with a grade 4 astrocytoma in 2024, leaving her unable to work for long periods and impacting her mental health. Attending a laboratory tour at the Scottish Brain Tumour Research Centre of Excellence, the 49-year-old shares why she is supporting our campaigning for better access to clinical trials and treatments.
Finding out that I had a brain tumour happened quite quickly and was overwhelming. The first symptoms I experienced were severe anxiety and headaches that would not pass with pain relief. I was exhausted but struggled to sleep. I experienced a type of anxiety that was unlike anything I had before. It was a weird physical sensation, like a rush flowing over me. I assumed these were panic attacks as I was in a stressful job. Due to my age, I also thought these signs could be menopause related and was back and forth to the GP trying to get to the bottom of it.
As the headaches worsened, she suggested a CT scan, but I never made it for this appointment as I had a massive seizure in May 2024. After going to A&E, I was admitted to the Royal Infirmary in Edinburgh where I was diagnosed with a grade 4 astrocytoma. The first stage of treatment was to have surgery to remove as much of the tumour as possible. It took me a long time to accept what they were saying. I was in denial for quite a while as I kept thinking that they were going to say, “oh, sorry, we've made a mistake,” which sounds ridiculous, but I just felt like this sort of thing happens to other people.
The surgeon was concerned by how deep in my brain it was and that the tumour was fast growing. I was told that if they didn't act soon, I would become seriously ill very quickly. After the surgery, which was a success, I started a six-week course of radiotherapy in July 2024. Alongside this, I was taking a chemotherapy tablet daily. At the end of this period, I had a four-week break and then had six more weekly sessions of chemotherapy over the next six months. Throughout this time, I had several scans which all showed the tumour was stable and the treatment had 'worked'.
But the diagnosis has had a devastating effect on me and my family. I am lucky to have a very caring husband, Joseph; he has supported me through all of this. He’s been by my side since the beginning of this ordeal, doing research about therapy, and taking care of me. We have two teenage daughters, and I worried about how they would cope with this news and didn’t want them to struggle with stress. But we agreed as a family to be as open as we can about what was going on. It has been a worrying and emotional time for them, but they have coped amazingly well and know we are always here to talk to if they need it.
The terminal aspect of the diagnosis has been particularly challenging. The treatment and medications took a real toll on me, I gained weight and it took time to get back to my previous fitness levels.
Jo with Dr Gillian Morrison at The University of Edinburgh
I’ve been shocked to find out how underfunded research into brain tumours is, particularly compared to other cancers. The survival rates are horribly low – yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This drives me to raise awareness and support the Charity’s Manifesto for Scotland which urges the Scottish Government to transform outcomes for patients by investing in bridging the gap between promising laboratory data and clinical trials.
I found the lab tour of the Scottish Brain Tumour Research Centre of Excellence very interesting and informative. It’s reassuring to hear about the work going on in the labs by some very talented people. However, it was also quite a sobering experience to hear about the challenges they face in making a breakthrough, so it served as a reminder why so much more funding is urgently needed. A highlight was seeing all the names on the Wall of Hope, including my own.
Dealing with a brain tumour has had a detrimental effect on my mental health, and I feel I have been confronted with my own mortality at a young age. The other challenge we have faced is the loss of my income as I have been unable to work for long periods. I’m lucky that my husband has been able to support me, but dealing with this on top of the diagnosis has been very difficult.
Family and friends have been incredibly supportive, though I am aware not everyone has this. There are support networks out there, whether it be online or through the hospital or charities. Maggie's Centre in Edinburgh has been an amazing support to me and put me in touch with other people in a similar position to me. It's these people who really understand and help. When I was in the midst of treatment, it was just about taking it one day at a time, that was the only way I could get through it.
I still have scans; the most recent one in January showed a small spot elsewhere in my brain. Thankfully the results came back quite quickly and turned out to be scar tissue from the radiotherapy and nothing to worry about. The tumour was still stable with no growth, and this means no scans for another six months. We have even booked a family holiday abroad, the first one since all this happened as the medical team said I would be fine to travel.
Brain Tumour Research is campaigning for Scottish patients to have access to life-extending treatments. Knowing there’s a focus on outcomes for patients in Scotland gives me hope.
If Jo’s story has inspired you, please make a one-off donation or set up a regular gift by clicking here. Together we will find a cure.
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