‘I often have to deliver news of a cancer diagnosis to my patients. You have to break it to them in a way so that they understand what exactly they have. But at the same time you have to be mindful of how they would feel about the new diagnosis and be compassionate about what they would be going through psychologically.
‘The most important thing is to reassure the patient that it is a journey and that usually it is not black and white – it is usually a lot more complex and there is a lot more to it.
‘There is always hope. No matter how bad the diagnosis is there is always something that we can offer. I learnt this from Chris O’Brien – I was his intern – he told me a little bit about these things. He was saying never let your patient lose hope. At all times the patient knows there is a plan and there’s a path and we’re always with them on that path. It makes the journey a lot easier for the patient.
‘But there is so much that is unknown. I’ve seen patients that I thought would die very soon and I was surprised that they lived a lot longer. And the opposite also happens where the patient that I never expected to deteriorate, did. Medicine is not 100%.
‘You can’t predict anyone’s future. You just do the best the can and you put on a good fight. It’s usually a journey that the surgeon and the patient take together. Sometimes every now and then you lose the battle to cancer but the most important thing is that you provide the caring environment for the patient and you provide enough support so that they can at least go through this journey and be comfortable with it, not lose hope and not be scared. Fear of the unknown is the worst thing for a cancer patient – them saying, “What’s going to happen to me? How am I going to die?”
‘As surgeons we try to push the envelope as far as we can to tackle some diseases that we might think are incurable. We usually try to give it a good shot; for the suitable patient of course. You never try to shy away because you think you’re going to lose any way. You just go for it.’
‘It’s a tough place to work but a very positive place even though there is this concentration of grief. I hope to bring to someone like Maria, something that she would get in no other hospital which is that support and that love which comes in many forms – kindness, compassion, support and lot of things we take for granted – like our art programs.
‘The fact that she can just wheel herself down and play on the piano or join in on what everybody else is doing – listening to the music and the choirs. It’s like its own little world here – a world of kindness and hope if you like.
‘I think that’s what I bring because I’m a reminder of what Chris went through and what we as a family went through and so I totally understand what everyone else is going through.
‘My role as Patient Advocate is a way of supporting the vision which is patient-centred care and giving people hope.’
‘When they told me I had cancer, it was really painful – like my whole world shattered because first of all I am young; I am 29 years old.
‘I was diagnosed with Stage IV Colo-rectal Cancer. I had no idea; no idea at all. Because of my baby that’s when they figured out that I had cancer because it was really painful like I wanted to die – it was too much pain.
‘I heard the news (about my cancer) on September 12th. And then two days after she was born at just 32 weeks. They decided to take out the baby to see the real diagnosis of my sickness. When she was born, I felt really, really happy because my baby is healthy after all the antibiotics and medication.
‘I came to Sydney in April 2017 from the Philippines. I had like a training program in culinary – to be a chef. It’s like an internship. And then I got pregnant with my baby.
‘I am alone here in Sydney. My husband is here but I don’t have relatives here. My husband tries to visit every day but it depends on his schedule because he’s a pastry chef.
‘I like it here at Lifehouse. They really focus on you and give the best care that you can receive. They promised me that I will have free treatment here because we don’t have money and my husband is the only one who is working and it’s not enough. So in the Philippines it’s really expensive. Every session you go. I don’t know how much but it’s really expensive.
‘I just want my baby to grow strong. You know, like a really tough girl. Here at Lifehouse, it’s like giving me hope. The staff are really nice and kind to me. Hope is really important. It’s the only word I’ve been holding on to.
‘Sometimes I’m really losing hope. Every time I see my baby and my husband, it builds my hope again and again. So I’m thankful that they let them stay here – my baby and my husband.’
‘When I threatened to move out, she would always say to me, “If you move out you’re not part of the family anymore”. At the start she said she’d disowned me. She didn’t talk to me at first. It was really messy. There were a lot of words and anger but she also grew up in a war zone and her family wasn’t the most affectionate. So I don’t really hold that against her. I understand her reaction and I expected it. She always threatened to do that and she did it in the end.
“I moved out of home last year and in Arab, but also Iraqi families in particular, that’s a really big no-no. I went through a period where my family’s relationship, until now, became very fraught because of that. It’s seen as betrayal to the family. The culture is rooted in family and you can’t break it up until you’re married and you have your own family.
“My family’s quite conservative and I just didn’t fit there anymore. I couldn’t really see myself growing as a person. I had to sensor my thoughts a lot and I didn’t want to live like that. As soon as I saw the opportunity to move I did it.
“It’s definitely a clash of culture. I’m a writer and I guess that’s also what my writing’s about – the relationship between first generation immigrants like my mum who came here in adulthood and their kids who came up here being Australian with different values.”
‘I have Stage IV cancer – it’s under control at the moment. I value every moment. I value the time I’ve got. I value friends and just the beauty of the world around me. You don’t have to go out in to the countryside to see beauty. There’s beauty here. There’s beauty everywhere. I seem to notice it more. I notice things more now. I don’t need to do spectacular things. I get pleasure out of very simple things in life.’
‘You go on Facebook and Instagram and everyone’s like shiny and happy and that would freak me out even more thinking, I don’t know what my life looks like. I would then evaluate my career and relationship or where I lived and there was just no certainty and it totally led to these really intense panic attacks.
‘It was this pressure to kill it at everything and that is what totally triggered it for me – this fear of the unknown and wanting to have control over it. What if I do take this job, then this could happen or that could happen and it was all just what if’s. I would just spiral – I wouldn’t do anything and I would freak out – it was paralysing.
‘It was a couple of years ago anxiety came in to my life and hit me like a freight train. I never expected it. I never saw it coming.
‘At my lowest point I wrote this poem called “We’re all going to die”. It was the first time that I’d had a sense of certainty. There was this one thing that could be guaranteed in my life and that was that one day, I’m going to cark it.
‘I realised that the only guarantee is death and everything is a mystery and that’s the beauty of life. So, why not go for it and why not take a risk? I’m going to die someday anyway so I may as well be who I really am.
‘On Friday November 17th I’m hosting “We’re All Going To Die Festival”. It is an amusement park for the soul. As an audience member you choose your own adventure – art installations, a film festival, music, panel discussions around fear and death and a lot of immersive experience. There’s everything from a death meditation where you actually imagine yourself not here on Earth any more through to a dance class where you’re encouraged to dance like you do in your own safe space in your bedroom.
‘It’s really about shifting people’s perspectives to just go and live life. It’s going to be a whole lot of colour and humour and we’re delivering it in the most fun way possible, because, why not?’
‘Two weeks ago I went back to the doctor and they said they’re not going to treat me anymore. They said I’d had enough radiology and enough chemotherapy and I still had it so I don’t know…
‘I feel quite active though. My lungs are good and my kidneys are OK. And I really don’t feel like it you know – to be saying goodbye just yet.
‘I was Preschool Cook at Australia Street Infants School in Newtown. I started off in 1973 only for a week or two while I filled in for someone. At the end of the next week, the Principal came down and said I can have the job. So I stayed there as Preschool Cook for 39 and a half years. In that time, I cooked over 7,000 meals for the children and I cuddled them every day.
‘I was made redundant in Xmas in 2012 – it was really stressful. Not long after that I was diagnosed with cancer.
‘They reckon I might last until Christmas but that’s about all. And that was a “might”. They said it depends on how much it grows and how much I deteriorate. Last week was pretty tough because I really don’t want to say goodbye just yet. I find it very hard.
‘I still get kids and adults coming up to me in the street. It feels very good. It’s hard to remember them because they change so much from when they’re little but they come up and say, “Miss Fay, I gotta give you a hug!” and that feels very good.
‘I don’t expect anything in return because you do what you have to do. I was working and everything and I did it all for the kids. I just loved them so much.’