In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Dad-of-three Liam Bergin was 49 and in otherwise good health when, out of the blue, he was diagnosed with an aggressive brain tumour. Married to Jen and with three teenagers, Liam’s diagnosis came as a shattering blow to a family who have already dealt with huge tragedy in their lives. In March 2019, Liam’s stepson died of suicide at the age of just 19. In April 2020, 24 hours before being diagnosed with a brain tumour, Liam’s mum passed away from leukaemia. On the day of his brain tumour diagnosis, Liam reached out to Brain Tumour Research offering to share his story and participate in some fundraising. He hopes this is the start of a long relationship with the charity.
Liam tells his story…
For all intents and purposes, I was completely asymptomatic. I didn’t have headaches, nausea or eye problems. My diagnosis came after I suffered a fit at home one day. It was Good Friday, during the UK ‘lockdown’ and I had been out for a 90k bike ride. I have a history of clinical depression and getting out on my road bike is my way of dealing with it. I’d not been back long and was in the kitchen chopping garlic for the tea I was preparing, when I must have fitted and passed out on the floor. Jen was out with the girls taking the dog for a walk. I woke up to the sound of banging on the door and Jen came in to find me lying on the floor in a pool of blood. She cleaned me up and called an ambulance. The paramedics came and took me to A&E at Manchester Royal Infirmary. They said I must have been out for 15 to 20 minutes and they kept me in overnight for observations. The following morning when the registrar came round to see me, I happened to mention that I was struggling to eat my toast. He checked my tongue and noticed it looked as if I had bitten it, which would suggest I’d had a seizure, possibly my first epileptic fit.
“I was discharged and booked in for an MRI scan 12 weeks later. The appointment was at 8am on a Sunday morning. That same afternoon my mum, an otherwise fit and healthy 72-year-old, went into hospital, with complications related to her recent diagnosis of leukaemia.”
I didn’t let on to her that I was having a brain scan, as I obviously didn’t want to worry her or anyone else in the family for that matter. We were informed that there was no further treatment that could help her and she chose to come home from hospital. All the family went to see her and she said her goodbyes on her terms and left this world with the style and elan befitting of a woman of such elegance. Most importantly, she went to sleep with my dad holding her hand in the room they’d shared for 48 of their 52 years together. It was beautiful.
The very same day that we lost Mum, I received a phone call from my GP, to say they’d found something on my brain and that a second scan was required. That scan took place at Salford Royal Hospital. The next day, having watched my mum take her final breaths the day before, I got a phone call to say that what they had found was ‘really nasty’ and I had to go in the following day to see the surgeon. I was told I had a grade 3 or 4 glioblastoma multiforme (GBM). My prognosis was two to four years. Strangely, that came as a relief, as I had almost expected them to tell me I only had days to live, having been rushed in so quickly. Speed was definitely of the essence and I was booked in for brain surgery just over a week later. The worst part was having to tell my dad, who had just lost his wife, and my children (Joe (18), Catlin (15) and Esme (13)), who were mourning the loss of their nan and were still grief-stricken having lost their stepbrother, Lewi, in such tragic circumstances.
“Being the bright young people that they are, they googled ‘glioblastoma multiforme’, which I would rather they hadn’t done.”
“My surgery was on Thursday 2 July. Strangely, I didn’t feel nervous beforehand. The worst thing was having to get rid of the beard I’d had for 15 years. I shaved it off to help the anaesthetist!”
The operation went well and I woke up after seven hours. They did a great job, managing to remove 95% of the tumour. That’s more than I expected. Thanks to the amazing care I received on ward H7 at Salford Royal, I was only in hospital for two nights and was allowed home on Saturday 4 July, the day the pubs reopened after lockdown! Happily, I didn’t feel many after effects, other than tiredness and an itchy ear. I have been recovering well and have even managed to move house from Manchester to Bollington in Cheshire. I am now on long-term sick leave from my job as Head of Catering at the University of Manchester. My employers have been brilliant but I’m not sure they know what to do with such a positive, terminally ill employee, who has been diagnosed with incurable brain cancer.
I recently had my radiology mask fitted, for my radiotherapy at The Christie in Manchester, which started on 14 August. This is being combined with chemotherapy, taken in tablet form. The mask-fitting procedure was probably one of the few moments when I have felt scared. It’s also the sorrow and sadness on people’s faces when you tell them your prognosis. Even though I am doing a good job of staying positive, there are definitely times when I reflect on how unfair this is and I occasionally feel sick with nerves. But in other ways, the fact that a brain tumour diagnosis is so random makes it easier to deal with. My depression has always been based on finding a reason for it to be my fault but with this, I can’t attribute the blame to anyone. Oddly, from a mental health perceptive, I feel in a better place than I have felt in years. Having said that, I am really not ready to die. It scares me not knowing if I’ll see my children grow up. I worry about how Jen will cope, especially after the trauma of losing her son. We know as a family what it’s like to lose a loved one ahead of their time and the last thing I want is for them to go through it again. Besides, I have aspirations to become a grandad and want to be around to enjoy my grandchildren.
“The way I have dealt with it is to stay busy and positive and to make plans to keep me going. The day I received my diagnosis, I contacted the team at Brain Tumour Research, offering to get involved and help in any way I can.”
The support I have had from friends has been unbelievable. A ‘Bergin’s Barmy Army’ WhatsApp group has been set up. Shopping has been done, dogs have been walked and pasties have been baked. I am so grateful for all of it. With all of this happening during the coronavirus pandemic, I am obviously being careful but my oncologist said I have to live my life and enjoy myself. I have definitely taken that advice on board, especially as in every other way, I am in very good health. I can’t play cricket at the moment but I recently umpired a socially-distanced cricket match and I’m still getting out on my bike as much as possible. I have to make sure I have someone with me when I go out for rides. It’s funny because I am not allowed to drive a car but I can legally ride a bike, which is a huge relief to me.
I know full well that the diffuse nature of GBM means that at least some of the tumour cells will be left behind and will continue to grow but I am determined to keep going for as long as I can. I have witnessed the trauma of a mother losing a child. There is a determination to keep going for Dad, the children and Jen. I want to be a force for good. I’m focusing on being a campaigner and an activist; I want to thrive, to chase the science and to expand knowledge and awareness as far as I can.
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.