A Dad with brain cancer: I was given 18 months to live, it put things into perspective
The Kerryman making the most of life with his wife and three children in Melbourne
Shane Burns with his daughter Lexie, who is now seven
Working Abroad Q&A: Shane Burns is originally from Killarney, Co Kerry, but now lives in Kallista in the mountains near Melbourne. He works as a speed camera operator for the Australian police, while dealing with terminal brain cancer. He was a maximum security prison officer in Melbourne for seven years. He is married to Kate from Croydon in Melbourne and they have three children, Fionn (13), Esme (9), and Lexie (7).
When did you leave Ireland and why?
I left Ireland in 1993. Looking back on it, I never planned to leave for good. I thought I would return to Ireland some day. I had just finished working in Dingle for two summer seasons and had returned to Killarney for the winters. I thought I needed to make headway in my hospitality career as all my friends in Killarney had moved away to attend university in Dublin, Cork and so on. But that wasn’t my path. I knew at the time that I’d always be a bartender in Killarney or Dingle if I didn’t make a move across to Britain. Don’t get me wrong, there is nothing wrong with being a bartender in Killarney or Dingle and sometimes I’m sorry I didn’t stay, but I wanted to try something new. I left to study hotel management at the Birmingham College of Food, Tourism and Creative Studies.
Tell us about your education in Ireland?
I completed my primary in the monastery all-boys school in Killarney and secondary schooling in St Brendan’s College. My school years were not the best times in my life. I have some important friendships from this time, but Killarney in the 1970s, 1980s, 1990s was a very classist town. You either came from a well-to-do family or, like me, grew up in a loving, but a fractured household. My Mam was a single mother doing her best to bring up four four kids on her own. I would probably say I was mildly dyslexic, as my spelling was - and still is - terrible and I never enjoyed reading. Dyslexia wasn’t a well-known thing back then and I was just treated like I was stupid and troublesome for not trying. Which by the end, I probably was.
I joined the FCA (Irish army reserve forces) during my final years in school and wanted to join the Irish Army. Unfortunately, languages were not an easy thing for me to learn and I failed Irish, which meant that I failed my Leaving Certificate and therefore couldn’t join the Irish forces. I was in Dublin during my final year of secondary school and saw an advertisement for a course in hospitality.
Where else have you lived?
I was 21 when I moved to Birmingham. I never planned to stay in Britain as I was a proud west of Ireland man, but I moved into a hall of residence, went to university and made two great friends. At different times we were broke - no money for food broke - and had no jobs, but something always popped up for one of us. During the second year we had to go on placement, but I couldn’t afford to go to the US like my friends, so I returned to Dingle.
I was saying goodbye to people I may never see again
After completing university I moved to London then I travelled with a Killarney friend through the US, Mexico, South America and settled in Queenstown, New Zealand for the winter season of snowboarding. Eventually I moved to Australia to be with my now-wife Kate. After two years we moved back to London. I managed bars, but five years later in 2010, after marrying and having two kids, we decided to move back to Australia (our third baby would come later).
Tell us about your career in Australia?
When we eventually settled in Australia in 2010. Kate was completing her Master’s with a four-year-old and a six month child in tow. I needed to work and quickly realised that the hospitality industry in Australia was not going to provide the same money I made in London. We'd had our third baby and Kate had just started her PhD, so I joined the prison service in Melbourne as a prison officer in a maximum security prison and worked there for six years. Eventually I left the prison service (I’ll explain why shortly). After a period of not working for health reasons, I successfully gained employment as a part-time Mobile Road Safety Camera Operator, which is what I currently do.
What does your work involve now?
My work is ultimately about reducing the fatalities on the roads. We are trained to set up camera cars compliantly and legally as defined by the police to detect cars that are travelling in excess of the speed for that section of road.
Tell us about working as a prison officer
I worked in a female maximum-security prison here in Melbourne in the units where we had to induct prisoners into prison, manage their expectations and get them ready for their time in jail - no easy task at times. I also worked in the local Emergency Response Group (ERG), which managed more volatile and non-compliant prisoners. This exposed me to some very dangerous individuals and also some very sad situations, where people were self-harming. Other times, due to mental health issues, people were unaware of what was expected of them or what was good for them and this required special managing.
Why did you change careers?
In late 2016 I stopped working as prison officer because I was diagnosed with brain cancer. However, I didn’t officially resign until March 2019. I knew I would never return to the prison service on a full-time basis, but it was my safety net while I was unwell.
When were you diagnosed and what with?
I had a series of CT scans followed by MRI’s and it transpired that I had a tumour in the right temporal lobe of my brain. After an invasive operation on September 7th, 2016, a biopsy of the tumour revealed that I had a Grade 3/4 Anaplastic Astrocytoma. This is a malignant a form of brain cancer and will eventually be terminal. I had a further surgery to have the tumor removed.
How did you notice something was changing?
For years previous to the diagnosis, I had noticed that my thinking was different. I thought that I knew people in the community that I really had never met. I would go into a coffee shop or supermarket, or even sometimes see someone on TV, and believe that I knew them and that I'd interacted with them. I thought that if I approached them and reminded them, they would remember me. Luckily, I never acted on that as my rational brain always kicked in and reminded me that I couldn’t possibly know them.
It was a confusing and pretty scary time. I was initially given a prognosis of 18 months, which was hard to get my head around
This happened sporadically for about a year. I was also becoming very paranoid at the time thinking I was being followed home from my prison role (not totally unlikely) by unsavoury characters. This would result in me driving around for long periods until I believed I'd lost them and could get home safely. These thoughts ramped up in frequency between April and August 2016, happening multiple times a week and eventually daily. After a few months of this and wondering if I was crazy, I told my wife what had been happening and she told me to go to the doctor. The doctor was understanding, but sent me to see a psychiatrist in a hospital. Initially the psychiatrist told me that I was having stress-induced psychosis. At the time, this seemed plausible. I was working 12 to 13 days a fortnight and normally a 12-hour day. The prison was located more than an hour drive from home. However, after the psychiatrist diagnosed psychosis, the doctor in the emergency department suggested that I should undergo some scans on my head to ensure that there no physical reasons for my symptoms. It was lucky the doctor ordered the scans because my symptoms were caused by the brain tumour, not psychosis.
Were you shocked?
Yes, I had a whole range of emotions. It was a confusing and pretty scary time. I was initially given a prognosis of 18 months, which was hard to get my head around. But looking back now, it was probably the best thing that could have happened to me at the time. Work in the prison was becoming unbearable and I wasn’t seeing my family. Perversely, by getting cancer it put things into perspective and gave me the time to spend with my kids.
What treatment have you had?
From the moment it was suspected that I had a brain tumour, I wasn’t allowed to leave the hospital. I was transferred from the local hospital near home to the main hospital (St Vincent’s) in the city. I had a serious examinations and MRIs to confirm the original discovery of the tumour. I had two operations, first a biopsy and the second to remove the tumour. This was followed by three months of radiation daily, and then a year of oral chemotherapy. I still have an MRI every three months, followed by neurologist and oncologist appointments.
What is the Australian healthcare system like?
My experience is that it's great, all the doctors and nurses have been great. I became an Australian citizen in 2014 so I have a Medicare card, which means I can use the public health system. As a family we have ambulance cover, which is needed here in Australia or you will be billed for calling an ambulance. So besides paying for the medication (oral chemotherapy) and the radiation treatment, which was subsidised, we managed. Otherwise, I don’t think we could have afforded it. Medicare covers everything else.
Would you go back to Ireland for treatment or for a holiday?
I don’t think I would return to Ireland for treatment. Treatment here was so hard, especially the chemotherapy - I was bedridden for months and continuously sick for the 12 months. So, the thought of going through that again is a no. Let alone going through that in Ireland alone as it would not be possible to move my kids from their home and my wife from her work here in Australia. But returning to Ireland for a holiday would be great. I would love to get home more often especially with the kids as I am the only one out of my siblings who has kids. I do feel bad that my mother doesn’t get to watch her only grandkids grow up.
We returned for the first time in 2017, but it was a very emotional holiday as I was half way through chemotherapy and it felt like I was saying goodbye to people I may never see again. But I’m still kicking and my wife has persuaded me to return home again this year. Hopefully it wont be so emotional and more like a normal holiday. But I fear this will be the last time for many years as flying to Ireland from Australia is very expensive for a family of five. I did insist that each of my kids have Irish passports when born so when they finish school and if they so wish they can go spend time in Ireland and learn more about where their dad grew up.
How has having brain cancer changed things for you and your partner?
In many ways for the better, which I know is a strange thing to say about the thing I will most likely die from. It made me take stock of what is important and that is my family. The kids are my first and foremost as the world is their oyster and the future is for them to create. My wife’s career has taken off. After completing her PhD she secured an ongoing full-time job as a lecturer and academic. So, in ways, she is still forging her future. I became more of a stay-home father, only returning to part-time work. This changed the dynamics of our relationship for the better. I like to drop the kids at school and hang around at home.
What is working part-time like?
Well, it’s a challenge in ways, but it suits where I am in life. It's not something I would recommend to anyone who needs to work for financial stability, but I do it just to keep me busy. We have worked out what we need financially to pay the mortgage, bills and give the kids what they need. So as long as that’s covered what more is there?
Are you glad to be a more hands-on dad?
Yes. It took adjusting and it's a work in progress. I didn’t have a dad when I was growing up, so I never had a role model in this area. I don’t have any comparison except for friends’ fathers I admired from a distance, namely one Mr Murphy, a postman in Killarney and the father of a my dearest friend Brian. The change was challenging for us all. The kids suddenly had different rules. But, all in all, it's going well and I’m content with the situation. I'm glad I can be present as the kids grow up.
Tell us about your children. Do they consider themselves Irish at all?
I have three kids. A boy, Fionn, and two girls, Esme, nine and Lexie, seven. I would say they probably don’t consider themselves Irish. They have Irish passports and I'm quick to tell them that they are probably Australian of Irish decent. Fionn and Esme were born in London - a fact that they lord over - and Lexie was born in Australia. Fionn likes to wind me up and refer to himself as British - a fact that I correct because where your born is not the making of who you are.
What is your prognosis?
Who knows. One thing I've learned about brain cancer is that nothing is really set in stone. On diagnosis I was told I might have three years and that sent me into a spiral of self pity and emotional decay. My immediate worry was the brain surgery, which carried risks such as death or waking up with no memory. I’m not sure which would be worse. I guess for me, maybe no memory because with death I won’t know, will I? I’ll just be asleep forever.
So I made my plans from hospital, wrote letters to my kids individually to be read when I die and a letter to my wife. It took me five days to write these and I haven’t been brave enough to reread them. I got my affairs in order, giving my wife power of attorney and putting her name on everything. I rang people from my youth who mean the world to me as I thought I may never see them again. I signed a "do not resuscitate order". I didn’t want to become a vegetated state and be a burden on anyone. But luckily treatment went well and I’m still here three year later. So I may still be here for another five or 10 years, and now we’ll wait and see.
I don’t say I’m dying of cancer because I’m not. But I am living with brain cancer
I did ask the doctors when can I use the words “I’m in remission” and was told that this is not a term used for those with the brain cancer that I have as history shows that it will return. The longest the doctor saw before the return was 10 years, but then he said that the part of the brain that I have the cancer could be operated on possibly about another five times before doing serious damage. When it returns, I think I will let it run its course and see what happens. I can’t go through that emotional rollercoaster again. So, I don’t say I’m dying of cancer because I’m not. But I am living with brain cancer.
Do the Irish fit in well there?
Yes. Like most places around the world the Irish have a good general reputaion and are welcomed. But Irish people should expect Australians to wind you up about the accent. Australians are very similar in their frankness and their humour. But moving somewhere new is always hard and it was hard to settle at first.
What is it like living in Kallista?
I couldn’t have wished for a better place to end up abroad. It is a small village nestled among the trees in the picturesque Dandenong Ranges about 36km east of Melbourne. I really like it as it’s quiet and offers a nice pace of life. When I suddenly was in hospital in 2016 the community was amazing and rallied round to support my family offering to ferry the kids to school activities and afterschool sports to try and keep their lives as uninterrupted as possible. Locals would leave meals on our doorstep for Kate and kids. Considering that at the time no one locally really knew me as I was always working, the support and offerings of help from strangers (to me) was humbling. This cemented my love for the local community and people.
Are there any other Irish people in your circles?
There are Irish everywhere here and also descendants of Irish people. I have formed a few friendships with Irish people here. I have never sought out Irish people for friends, but just people I enjoy. Friendship is a gradual process and sometimes takes time to forge. My social circle is now my local friends, and my kids and the activities they are involved in. No more nightly visits to pubs, but that’s ok.
What are the costs like compared to Ireland. Particularly for healthcare?
Australia is an expensive place. Grocery shopping and off-licences are probably on a par with Ireland, so if you drink and entertain at home it’s very manageable. But if going out for dinners and drinks is your thing, then it’s expensive. Branded clothing and general luxuries are also very expensive
How have the fires in Australia affected you?
It hasn’t really. We're very lucky here in the Dandenong Ranges that a devastating fire hasn’t broken out considering that we are surrounded by 200ft trees. But it is something that you are constantly monitoring The fires that have ravaged the country are terrible and something that is a yearly occurrence in some way or another.
Is there anything you miss about Ireland?
I miss everything about Ireland. I miss the drive to Dingle from Killarney, I miss looking out from Kruger’s bar in Ballyferriter and seeing the ocean crashing against the cliffs. I miss the people and the proximity to my family and friends. I miss walking into Killarney and going into a pub and hearing Irish accents all around, and listening to general conversations around me and feeling like I’m home. I miss walking out of my mother’s house and seeing Torc mountain, and just being in Ireland.
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