In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
GP Huw McCandless was struck down with a seizure whilst driving his family to a local beauty spot for a Boxing Day walk. He underwent surgery to remove a glioblastoma multiforme (GBM) brain tumour and now, less than four months later, he’s planning to celebrate his 33rd birthday with a 5K run to mark the end of radiotherapy and chemotherapy. He is also keen to get back to his job helping patients.
Huw tells his story…
It was Boxing Day 2019 and I was driving my mum Jackie, my wife Laura, and our dog Dexter, to meet up with other relatives for a walk at Goyt Valley Reservoir which is about 20 minutes from our home in Disley, Cheshire.
Ironically we were just going past the medical practice where I worked when I had a global seizure and lost control of the car. It’s a miracle we didn’t crash; Laura was in the front seat and she managed to push the car into neutral and pull on the handbrake while, from the back seat, my mum managed to hold me upright. It had been briefly preceded by a strange smell of toast and a sense that I couldn’t understand the conversation going on around me.
The next thing I was aware of was waking up in an ambulance with blood around my mouth where I had bitten myself. I was taken to hospital which, being a Bank Holiday, was very busy but I was seen in a couple of hours and had a CT scan.
“As a doctor, I knew that the main cause of seizures in someone my age was a brain tumour but of course my family tried to reassure me that it wasn’t necessarily the case.”
I understand how hard it can be to deliver bad news; now I know how hard it can be to receive it too. I was told there was a mass which, at 10cm, was considered large, on my brain and it could be an abscess, an infection or a tumour. It was a pretty bleak time but there was worse to come when I was told on 27 December, that the tumour was a glioblastoma multiforme (GBM), probably stage two, but more would be known after surgery.
The seven-hour operation to remove the tumour took place ten days later at Salford Hospital. The tumour was on my left temporal lobe which is the part of the brain which affects speech and language. I was awake for around five hours of the surgery with a neuro-physiologist testing me throughout this time asking me questions to check my speech and language function to let my surgeon Mr D’Urso know how deep he could go without affecting healthy tissue which would leave me impaired.
Unbelievably I was back home in 48 hours and delighted to hear that 90% of the tumour had been taken away and my neurosurgeon wouldn’t need to see me for 12 months. But less positive news followed: whilst the tumour was originally thought to be stage two but unfortunately they found evidence it was a higher grade. My oncology team wanted me to start concurrent radiotherapy and chemotherapy within a month.
“Throughout all of this I have tried to stay positive and I see it as a minor silver lining that, because I had a seizure and was admitted through A&E, I was diagnosed quickly.”
I find it hard to talk about my prognosis because, for some patients that can be months while for others it can be more than a decade and my doctors are very happy with my progress so far.
On Wednesday 8 April 2020 I’m planning to mark my 33rd birthday and the end of six weeks of radiotherapy and chemotherapy by doing a 5k run – socially distancing of course – and with Laura and Dexter alongside me. Running has been fantastic for my mental health and I have been building up by half a km at a time over the last few weeks.
I have managed to get through the treatment OK. My diagnosis means I can no longer drive and I managed to get a rota of helpers including aunts, uncles, my mum, my stepdad and Laura to drive me to Manchester each day. Laura’s job as a speech and language specialist has changed significantly during the coronavirus pandemic lockdown and has been around to help me more.
“As a brain tumour patient on chemotherapy I am classed as high-risk should I contract Covid-19 but my fervent hope is that everyone will continue to heed the quarantine rules and to stay at home so that people like me are at least able to get to hospital for the treatment they need.”
The plan for me now is to have four weeks off before treatment starts again and this time I will be on high dose oral chemotherapy which will be five days on then three weeks off for the next six months.
As a doctor I owe it to myself to listen to the advice I would give other people and that is to stay positive, to take exercise, connect with family and friends if that makes you happy, and to do the things you enjoy which, for me, are cooking – Laura and I are both self-isolating to protect me but people have kindly being dropping groceries off for us - and enjoying walks with Laura and Dexter.
Last month my step-dad Andrew Russell took part in the Liverpool half marathon to raise money for Brain Tumour Research and taking part in another half marathon with him is now one of my goals.
My other goal is to get back to work – as a GP I am extremely frustrated that I am unable to help patients and am keen to explore ways I can do this. I have been employed by the NHS for eight years and it is very difficult that now, of all times, I am unable to use my training and experience to help in the fight against coronavirus.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
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