Four Christmases ago, I was diagnosed with an incurable brain tumour and given just 18 months to live.
My symptoms started in early 2021 when I felt tremors – like a strange vibrating sensation – in my stomach before the feeling moved to under my arm.
I knew this wasn’t normal, so, each time it happened, I went to my GP for help. I went back and forth a couple of times over the next few months, but he just put it down as a possible muscle spasm and referred me for an MRI scan.
That MRI sadly never happened until I became an emergent case.
Between Christmas and New Year, I felt the tremors again. I’d been cooking dinner for the family on 27 December when my arm suddenly locked in an upright position and I couldn’t move it for a full five minutes.
This time, the vibrating was strong and excruciatingly painful, so my wife Fiona took me to A&E but I was only sent home with painkillers.
Then, on 3 January 2022, the same thing happened again. My arm locked and I couldn’t move it at all for 15 minutes.
Once again I went to A&E and fortunately saw the same doctor who immediately sent me for an MRI and CT scan. That’s when I learned of the frightening mass in my brain.
No one could tell us what it was at this point, why it had appeared or when. All I could do was take the steroids I’d been prescribed to help with the pain and swelling in my arm and wait for an operation on my brain.
Immediately after my operation, my consultant said he was confident that he had managed to take most of the tumour away but that we would need to wait for the results of the biopsy to know exactly what we were dealing with.
Sadly, at my oncology meeting two weeks later, it was confirmed that the tumour type was glioblastoma grade 4.
It was a terminal diagnosis, and I was told my life expectancy would be around 18 months.
My mother-in-law, who had come to the appointment with me as my wife had Covid, had to leave the room. Fiona, who had been listening in on the phone, had put her microphone on mute so that I couldn’t hear her crying.
As for me, I thought, ‘That’s it. Everything is over’. Everything I had imagined for the future for me, Fiona and our little girl, Imogen – holidays and Christmases together, seeing her grow up – was pulled from under my feet.
While I didn’t have any more operations – the remaining 10% of the tumour could not be removed surgically because of where it was located – I did begin having chemotherapy in tablet form, and six weeks of radiotherapy. I was also prescribed anti-seizure medication and steroids to take the swelling down on my brain.
My hair started to fall out which I found very upsetting, partly because the scars on my head became more apparent, but mainly because it made the whole ordeal a reality.
And when that was all finished, all that was left to think about was that I didn’t have very long to live.
By the time December 2022 rolled around, I was feeling deeply sad about what I thought could be my last Christmas, yet I still wanted to make the most of it.
We tried to keep things fairly normal by having our close family members around like we always do and, thankfully, no one made too much of a fuss as I didn’t want to be the centre of attention. But I’d be lying if I said I hadn’t started to dwell on the fact I may never experience an occasion like that again.
I went deeper into my own thoughts, often crying when I was home alone and wondering why this had happened to me. Frankly, I couldn’t see a way forward and was treating my life like it was already over.
Concerned, Fiona suggested I found someone professional to talk to, and a few months later in June 2023, I found Maggie’s – a UK-wide cancer charity providing free, professional emotional, practical, and social support for anyone affected by cancer.
The charity put me in touch with a counselling psychologist who helped me to accept that, even though I have a terminal illness, I’m still here and I still have lots to offer.
Maggie's Cancer Care
Maggie’s Cancer Centres are drop-in support centres for individuals affected by cancer. They provide support to those living with cancer and their families.
The centres offer a range of services, including workshops, nutrition and exercise sessions, psychological support, and a welcoming environment for patients, families, and carers.
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She also introduced me to the ‘Living Well with Ongoing Cancer’ group where I was able to make many friends who were going through similar things. And it made all the difference.
I decided I had to live for every minute, even the small things – like going to the chippy and playing with my little girl, or going for afternoon tea with Fiona – and, before I knew it, 18 months had passed since the diagnosis.
December 25 soon rolled around again which we spent on a cruise. Then we celebrated Christmas 2024 in Turkey. I knew I was lucky to have made it past the 18 months mark, let alone two more Christmases, and I couldn’t be more grateful.
This year, after being given the all-clear to fly long distances, my family and I are gearing up to spend the festive period in Florida, where we’ll swim with dolphins on Christmas Day. I’m so excited and know we are going to have an amazing time.
Of course, I still have my limitations – I am now registered disabled and I have to use a walking stick as I have been left with limited use of my left leg – but I haven’t needed any more treatment.
I take anti-epileptic medicine, one co-codamol and one paracetamol every day, but that’s it. And though I used to worry in between my scans, especially if I got more headaches, now I try to just look ahead.
Because while I may not know how many more Christmases I’ll see, one thing I know for sure is that life truly is for living and I want to enjoy every single moment of it.
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