In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Sean didn’t let his diagnosis of an aggressive brain tumour in August 2016 define his life. Sean’s strength and positive attitude has shone throughout three brain surgeries, chemotherapy and radiotherapy. In June 2018 he married Laura, and is now gearing up to participate in a world record attempt on his guitar.
“As if two rounds of brain surgery a week apart wasn’t enough, what followed was six weeks of radiotherapy and then six months of chemotherapy. I won’t call this a battle, because that means there’s a chance the disease can win. It won’t. I’m positive about the future – there’s definitely a plan going forward, even if it is another long road ahead – I’m not done with life yet.”
Here is Sean’s story…
My tumour is sitting somewhere in the right-hand side of my brain, just biding its time. It was in August 2016 that it came crashing into my life – like a wrecking ball leaving a trail of destruction behind. It touched every single part of my life, and still does. It touched the lives of my wife, family and friends.
I can remember the day I found out about my tumour as if it was this morning. After weeks of crippling headaches, I went to the doctor who ordered MRI scans and other tests. I dutifully obliged, and three weeks later I was sitting in a doctor’s office being told I had a brain tumour.
I asked the doctor more about the diagnosis – it was described as “life-limiting” and that I would be here for, at best, five years. I couldn’t quite wrap my head around what I was being told. How could something so small, something I couldn’t see, cause so much destruction? It didn’t make sense. It wasn’t fair. What gave it the right to show up unannounced?
A week after my diagnosis, I had surgery to reduce the pressure in my brain. Unfortunately, a bleed in surgery meant that only 50% of the tumour could be removed. So, I had another round of surgery just eight days later.
As if two rounds of brain surgery in just over a week wasn’t enough, what followed was six weeks of radiotherapy and a further six months of chemotherapy. Fortunately, there was no sign of the tumour after this and, although I was warned it would come back, I enjoyed this sense of normality for as long as it lasted.
At the end of February 2018, I had my routine three-month scan. A week later, I was gutted to discover that another brain tumour had grown back in the same place – meaning my cancer had most definitely returned. Not only was it smaller, it had grown on top of the existing cavity and not further down into the brain. This potentially made it inoperable.
I spoke at length with my surgeon, Mr Plaha, at the John Radcliffe Hospital and it was decided the best way forward was to have a seven-hour awake craniotomy. This meant he could not only remove the tumour but also cut deeper into my brain, into healthy brain tissue, where some cancerous cells would be living.
Just four days after finding out the tumour was back, in February 2018, I was anaesthetised while they re-opened my existing surgery scar – I jokingly asked them to put a zip in it this time. I was woken up as Mr Plaha began to gently remove the tumour.
As he started cutting into my brain, I was talking to a neuroscientist; moving my arms and legs, describing sensations. As he got closer to my optical nerves, I started seeing different flashes of light, which allowed Mr Plaha to tell if he was cutting too far into my brain.
The next thing I knew, I was in the recovery room being pumped full of morphine. In no time I was back on the ward and reunited with my family.
Not long after the surgery, I met with Mr Plaha, who was very happy with how the operation had gone. It was a sterling team effort from all those involved. I saw a scan which showed just how much brain he had removed. I still can’t believe I was able to casually write about my tumour in hospital less than a week later.
Now, I am having a fresh batch of chemotherapy to “mop up” any leftover cancer cells, which aren’t visible to the naked eye. Recovery has been tough – I’ve had a lot of swelling which is painful, and my fine motor skills we’re a little rough round the edges at first. However, I’m slowly returning to normal day by day! I’m still in a lot of pain, but I am hoping a few weeks solid rest will see me right.
I was so pleased to get married in June 2018. Laura has supported me wholeheartedly through the inevitable ups-and-downs of my illness. It’s great to be able to prove that a brain tumour diagnosis doesn’t have to dictate the way I live my life. I am also very excited to participate in The Great Guitar Challenge – a world record attempt, which will raise money to help fund vital research into brain tumours – on 22nd July 2018.
I won’t call this a battle, because that means there’s a chance the disease can win. It won’t.
I’m positive about the future – there’s definitely a plan going forward, even if it is another long road ahead – I’m not done with life yet.
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.
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.