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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

James Hinnigan

New dad James Hinnigan was enjoying life with his partner and their son in Australia when he was diagnosed with a low-grade glioma brain tumour. The family moved back to Greater Manchester just before Christmas 2015 to be near friends and family as they faced the uncertain journey ahead. James mobilised thousands of people across the region to sign an e-petition calling for more funding for research into the disease which is the biggest cancer killer of the under 40s. He has been accepted for a clinical trial and is waiting for a date for surgery and looking forward to the birth of his second child in May.

“I do have bad days of course where I feel down and panic about what might happen but, on the whole, I am positive and always try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.”

Wendi and I had always liked the idea of travelling and so, when I was finding it increasingly difficult to find work as a plumber, we brought our plans forward and set off in 2009 on what was supposed to be a 12 month trip.

We worked our way across south east Asia and saw countries including Japan, China, Hong Kong, Vietnam, Cambodia, Laos, Thailand, Malaysia, Indonesia and Singapore. We settled in Australia living in Sydney, Melbourne and finally the Margaret River region of Western Australia, where our son Cameron was born on 8th August 2014. We were loving life as a new family.

In the end, we were away for six years. We had always intended to come home for a three-month break in September 2015 when we planned to get married. We did come home not long after that but for another reason entirely.

It was three months before our planned trip back to the UK when I was taken ill. We were at home when I felt a tingling sensation in my feet and lower legs. It was like pins and needles travelling up and down my body in waves. I lost my co-ordination and was also drained of strength in my arms and legs. My speech seemed to come and go as we drove the 30 minutes to hospital. I thought I was having a stroke and was very frightened. I was 36 and life was good, how could this be happening?

Once we arrived at the hospital I was hooked up to all sorts of monitors. I was also asked to draw a diagram of a clock but could only place the numbers on one side. I stared down in disbelief, how was it that I was unable to do something so basic which I wouldn’t even have given a second thought to just hours earlier?

The thinking was that I had indeed had a stroke. I was transferred to another hospital for an MRI scan and it was soon after that I was told I had a brain tumour. The news left me in pieces; I was on the floor and crying my eyes out. Wendi was deeply shocked and I asked to speak to the doctor in private. If there was more bad news, I wanted to be the one to break it to her. The nightmarish situation was made worse by the fact that they couldn’t tell me any more. We went home and waited for an appointment with a neurosurgeon. I was so desperate to find out what I could about the disease and what type of tumour I might have that I started searching the internet. Of course, that was a bad thing to do and left me feeling as if I would be dead within a week.

We drove the four hours to Perth to meet neurosurgeon Sharon Lee who told us things weren’t as bad as they could be. My tumour was most likely to be a low-grade glioma and would be operable. There were concerns that surgery could leave me with a speech deficit and so I underwent more tests. Our life had been shattered and the circumstances in which we found ourselves left us feeling isolated, a long way from our family and with a limited support network. Of course we had made friends in Australia but it was time to come home.

As soon as they heard I was in hospital with a suspected stroke, my parents were on a plane. By the time they landed we had to break the news that I had a brain tumour and that is a terrible thing to have to tell your mum and dad.

We cancelled the wedding but my stag do went ahead. I couldn’t make it of course but ten or so of my friends decided to go ahead and “celebrate” in Ibiza wearing masks of my face. It’s lucky I’ve kept my sense of humour as it was all a bit annoying; there I was thousands of miles away from home, newly-diagnosed with a brain tumour and back at work emptying bins at a holiday resort while they were living it up on the beach.
It was disappointing that when Wendi, Cameron and I left Australia it was not on our terms. Hopefully one day we’ll be able to go back.

We moved in with my parents in Ashton-in-Makerfield where I grew up. My sister is just around the corner and, while it’s great to be back, it has taken a bit of getting used to after having our own place for so long.

There is no doubt that coming back was the right decision for us. My care was transferred from Australia to The Walton Centre in Liverpool where everyone has been utterly fantastic and have worked with us to make everything as good as it can be, even before we arrived in the UK.

Around the time I was diagnosed, there was a story on the BBC about a pioneering treatment which had been used on a brain tumour patient for the first time in Europe. My family told me about it and I got my GP in Australia, who had also seen the report, to refer me to Charing Cross Hospital where the trial, using the iknife and laser which both make delicate brain tumour surgery faster and more accurate, was taking place.
I have been accepted for the trial and, all being well, I will be in surgery this spring with Babar Vaqas, the trial chief investigator, and neurosurgeon Kevin O’Neill who leads the Brain Tumour Research Centre of Excellence at Imperial College.

If we are to advance treatments for patients then people like me need to step forward. Although I am anxious about the operation, I consider myself lucky enough to be eligible and hope it will help people further down the line. The iknife can identify healthy and diseased tissue in real time without the need for sending biopsies for analysis during the operation. I will be woken up during the procedure and, by talking to me, the surgeons can assess how much tissue they can remove without risking damage to my speech. 

I’ve had surgery many times before to mend bones broken on the rugby pitch so I am trying to think of it just like that although I know of course that having an operation on your brain is about as serious as it can get.

The day can’t come soon enough for me and, all being well, I will eventually be 100% again and able to get back to work and get on with my life. Our new baby is due at the beginning of May so I have a lot to look forward to and it’s going to be a busy and interesting time.

I was very touched that so many people responded when I campaigned to get more signatures on the e-petition calling for more government investment into research for brain tumours. I have been told that more people in the two constituencies of Wigan and Makerfield signed the petition than any other area in the country and it is a great feeling to know that we made the difference.

I do have bad days of course where I feel down and panic about what might happen but, on the whole, I am positive and always try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.

James Hinnigan
February 2016
James Hinnigan In Hope resized

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