Sandy on living with an incurable brain tumour

In early 2021, I had a few episodes where I felt tremors down my left-hand side. I went to my GP to try to get answers, but as there was nothing the doctor could see that was causing it, they put it down to a possible muscle spasm and referred me for an MRI scan.

Between Christmas and New Year, I felt tremors once again, but this time it was excruciating. My arm locked into an upright position and I couldn't move it. My wife, Fiona, immediately took me to A&E.

I was sent on for an MRI and CT scan, which showed a mass in my brain. It was a very worrying time for everyone. I was kept in hospital overnight, then sent home with steroids to help with pain and swelling for two weeks ahead of an operation.

I was fortunate that my consultant was one of the best surgeons in his field, and he was confident that he could operate to take most of the tumour away. I felt like I had gone in and out of surgery in no time, but the operation had actually lasted four hours. Luckily, I had no pain.

Receiving a terminal diagnosis

Two weeks later, I had my oncology meeting, where it was explained to me that I’d had very successful surgery, and 90% of the tumour had been removed.

However, the biopsy they had taken confirmed that the tumour type was glioblastoma grade 4. This was a terminal diagnosis and I was told my life expectancy would be on average 18 months. The one bit of good news was that the tumour was a methylated tumour, so this meant it would respond better to surgery.

My mother-in-law had come to the appointment with me as my wife had Covid. Fiona listened on the phone when we were told the devastating news. My mother-in-law had to leave the room, and my wife broke down in tears. She'd put her microphone on mute so that I couldn’t hear her, but I knew she was crying.

I thought, 'that’s it – everything is over'. I felt that everything I had imagined for the future for me, Fiona and our little girl, Imogen, had been pulled from under my feet. I thought I would only have a few months to live.

I am glad to say I was wrong – there were things they could do, and for that, I’m really grateful.

Life after the surgery

I came out of the surgery with 24 staples in my head and the scars to prove it. That’s the one thing I think Imogen does remember. She was only 2 at the time, but she did see me with the staples and the scars on my head, which became apparent when all of my hair fell out during radiotherapy.

I have also been left with limited use of my left leg. But Imogen just thinks her dad has ‘a bad leg’. I can do most things, and she doesn’t think anything of it.”

I received chemotherapy in tablet form after my operation, and six weeks radiotherapy. My hair started to fall out after the third week of radiotherapy and I found this very upsetting – almost as upsetting as having the tumour! But I think it was just the reality of it all setting in. I asked my wife to just shave my hair off, so I didn’t see it coming out in clumps.

Fears for the future

All that I could think of after my operation was that I had cancer and that I wouldn’t have very long to live.

I started to dwell on this and go deeper into my own thoughts. I couldn’t see a way forwards. Fiona thought I needed to speak with someone, and that’s when I finally found Maggie’s.

I spent time with Hannah, a counselling psychologist at Maggie's in Fife.

Hannah helped me to accept that I have a terminal illness but that I’m still here and I’ve still got lots to offer.

She also introduced me to the ‘Living Well with Ongoing Cancer’ group, which meets at Maggie’s in Fife every two weeks. I’ve made many friends there – it’s good to have that peer support from people who are going through similar things. We all support each other by sharing stories of how to do certain things and how to adapt to new situations. 

I used to worry in between my scans – especially if I got more headaches but, now I try to just look ahead. I was given 18 months to live in the beginning before my op. I’m now at 39 months past my diagnosis and I had a recent scan which showed no change, so I’m very happy with that. And I haven’t had any more treatment - I take anti-epileptic medicine, one co-codamol and one paracetamol every day that’s it.

I'd left my job as a security supervisor shortly before my diagnosis to look after Imogen, then 2, since my wife was the higher earner between us. I was lucky in that I had taken out critical illness insurance beforehand, and this has allowed me to future-proof my house by adding another bedroom downstairs and a wet-room for when I might need it.

Learning to live in the moment

One of the first things I asked after my operation was if I was allowed to fly. After an MRI and a CT scan, I was told I was allowed to fly anywhere up to four hours' away. After a short 'test' flight down to London, I have since been to Paris, Spain and Türkiye in the last three years, and I have a cruise to Norway planned for this Spring. I’m still up for adventure, and I’m planning to go on a 12 person-RIB boat down the Norwegian fiords to watch waterfalls. I’m looking forward to this with my family. My wife’s sister, her husband, and their two kids are also coming along.

I want to be remembered for enjoying life and being outgoing, and I am living life for the moment.

Through Maggie’s I have learned to accept my cancer and live life as well as I can.

I know I have my limitations – I am not as mobile as I was. I am now registered disabled and I have to use a walking stick and wear a splint in my sock because my foot can drop down, but I am taking every day that comes and enjoying it with my wife and daughter.

I still do the school-run two days a week, and I do the shopping and bung it all in my automatic car, and I make all the lunches and dinners. I try to do everything I can with Imogen and Fiona.

Imogen is only six now, but she remembers loads and I want to make lots of memories and go on holidays with her and Fiona and our extended family.