In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
In August 2009, Harry Broadbent was sailing in Cornwall when a consultant rang to tell him that a brain tumour was the cause of his epileptic seizures. Surrounded by strangers, 25-year-old Harry was suddenly faced not only with an uncertain future but with the distressing prospect of telling his partner and family. With the love and support of his wife, Harry has defied his original prognosis but the tumour casts a constant shadow over the life of his family.
“Back in Edinburgh, I noticed an NHS letter come through the letterbox and I asked Harry to open it to read the results. He hadn’t been able to tell me about that phone call yet, so when Harry sat me down and said ‘it’s not good news’, I was in complete and utter shock. Harry was so emotional…”
Here is Harry’s story, as told by his wife, Michaelagh…
When I moved from my native Boston in the US to Scotland in order to study, it was partly because I loved the city but mostly to be closer to Harry. I met him at summer camp in New Hampshire and instantly fell in love with his wit and humour – he was so confident and outgoing, a real people person.
Our relationship was long-distance for a year but then I made the decision to move closer and complete my studies at Edinburgh University. Harry moved to Edinburgh too from his home town near Huddersfield in Yorkshire.
In 2008, Harry started his first ‘proper job’ with Royal Bank of Scotland and, in hindsight, we think this is when his symptoms began. He was suffering from headaches but, being young, he just put it down to the stress of the workplace and staring at computers for prolonged periods of time. It wasn’t until January 2009 that a more serious symptom reared its head. Harry woke me up in the middle of the night and said ‘can you smell that?’ I couldn’t smell anything and over the course of the next few days this kept happening. Harry went back and forth to the GP for a few months but he was told panic attacks might be the cause. Harry knew this wasn’t the case and persisted until he was finally referred to a neurologist at the Royal Infirmary of Edinburgh.
Then the news came that Harry had epilepsy, which was a real shock to him. He was so fit and healthy and now all of a sudden, he had epilepsy? What was even harder for him was the medication he was put on; although it was a low dose, he couldn’t face taking medication every day.
While all this was happening, I was back in the US for a few weeks as I wasn’t a citizen yet. It was hard being away from him as I could tell he was struggling to come to terms with things. However, his MRI scan was booked in for August so I made sure I was back in Edinburgh for that.
The MRI came and went and Harry went down to Cornwall for a sailing trip a couple of days later. He loved sailing and was quite happy going on his own but he’ll remember that weekend for all the wrong reasons. While he was on a sailboat, surrounded by complete strangers, Harry received a call from the consultant in Edinburgh. The MRI scan found a tumour in his brain and he would need surgery a week later.
What a shock that was for him, and what a surreal place to be told: on a boat, with only strangers to talk to. Funnily enough, Harry was quite relieved to be able to talk to people who were removed from the situation before dropping the bombshell on his loved ones.
Back in Edinburgh, I noticed an NHS letter come through the letterbox and I asked Harry to open it to read the results. He hadn’t been able to tell me about that phone call yet, so when Harry sat me down and said ‘it’s not good news’, I was in complete and utter shock. Harry was so emotional and, more than anything, he was so scared to tell his mum. It was hard enough telling me but there were no words for telling his mum.
The surgery was at the Western General Hospital and 95% of the tumour was successfully removed. Harry also recovered really quickly which made the whole experience much easier. When the results of the biopsy came two weeks later, however, our world was completely shattered. Our hopes had been pinned on the tumour being grade two and low-grade, as the surgeon predicted, but it was in fact a grade three anaplastic astrocytoma, and Harry would need further treatment.
I remember sitting in the hospital with Harry and his mum, Liz, while the consultant delivered the news. Everyone seemed to be avoiding the question of a prognosis, but I was only 24 and not afraid to ask ‘what is his life expectancy?’ ‘Eight years’, came the reply.
Radiotherapy was the next step and it was easier than Harry and I had expected. It was a six-week course and Harry was strong enough to keep working throughout. The most harrowing part for Harry was losing his hair. Seeing his hair all over his pillow in the morning was a moment he’ll never forget.
It had been a traumatic year and it was make or break for our relationship. The city we lived in, and had once loved so much, was now tinged with sad memories so in 2010 we decided to move to London, start afresh, and distance ourselves from all that had happened. Harry had a few grand mal seizures around this time but the seizures settled down and were under control after that. We felt normal again and although the tumour was always in our thoughts, life was back on track.
Of course, the prognosis made us act faster and in 2011 we got engaged and started to think about kids. The wedding took place the same year in Massachusetts and one year later, in September 2012 and on our first anniversary, our son Harry Jnr was born. Harry Snr continued to have scans every six months and the tumour remained stable. His personality was undoubtedly different; his memory wasn’t what it used to be and he struggled with organisation but nevertheless, we were happy.
As Harry Jnr grew older, and I became ready for another baby, we started to yearn for Edinburgh again. With 2009 in the past, we felt ready to move back and raise our son there so in June 2014 we upped sticks and made the move.
A few months later in January 2015, we had the exciting news that I was expecting our second son but unexpected news lay just around the corner. At one of Harry’s routine check-ups, the oncologist found that the tumour was growing again and they would need to operate. Given my pregnancy and the slow rate at which the tumour was growing, Harry was told to ‘watch and wait’ until the following year. I’m so grateful that we were able to have that year; Alex was born in September and Harry and I made the most of family life.
Harry’s next surgery date came around in January 2016 and although, this time, 90% of the tumour was removed, there was a clear difference in Harry from his first operation. Seeing him barely able to speak and unable to stay awake was terrifying and I feared that he’d had a stroke. Luckily, it was just swelling on Harry’s brain and as it went down, he snapped back to himself. The tumour was still grade three and the doctors advised six courses of chemotherapy.
Whilst he had chemo, Harry had no choice but to take time off work but having two young kids meant we had no time to feel sorry for ourselves. We were in survival mode and nothing was going to stop us. Harry responded well to chemotherapy and just as we began to recover from these gruelling few months, bad news came to test us again. Harry’s mum’s ovarian cancer recurred and within a few weeks, she had died. Harry was heartbroken and the whole experience stirred a lot of emotion in both of us about what the future held for our family. Liz went from being really well to dying in a matter of weeks and I think we both started to wonder, ’oh gosh, could this happen to us?’
We had no choice but to pick up the pieces again and try to return to normality. Harry Jnr and Alex dealt with their dad’s illness so well yet I couldn’t help but worry how they would they cope if the unthinkable happened. In hard times, I’ve always turned to books and this got me thinking that I could write a children’s book on bereavement and terminal illness. While Harry returned to work, I spent 2017 developing my idea and now the book has become a reality. ‘My Daddy Is My Superhero’ is released in June 2018 and I hope that it will help other children dealing with grief or a terminally ill parent.
Harry and I don’t know what the future holds but we have to remain strong and be superheroes for the sake of our sons – even when we feel like we can’t. My wish is that a cure for brain tumours is found but this won’t happen without more research. I hope Harry’s story can raise awareness of the need for more funding into the research and that in mine or my sons’ lives we see a cure.
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.
If you have been inspired by Harry’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now leave a gift in your will via www.braintumourresearch.org/legacy.You can also find out more about My Daddy Is My Superhero.
Together we will find a cure.
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