‘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.’
‘I was diagnosed with tonsillar cancer about 18 months ago. I thought it was an earache that turned out to be the tumour pressing on my auditory nerve and went through the full degustation of cancer treatment which is radio, chemo and surgery.
‘I’m a stand-up comic and used comedy as a way of coping.
‘The funniest moment was the anal swab. An anal swab is exactly what it sounds like. For some reason, things happen in the hospital at quarter to five so I was woken one morning and a lovely many said, “It’s time for your anal swab.” He did his business and he disappeared.
‘The weird thing was I kind of woke up the next day and I was wondering and asked the nurse, “Why do you do an anal swab?” She said it’s to prevent infection spreading around the intensive care unit. Not being a medical person I thought maybe if they wanted to prevent infection spreading around the intensive care unit there wouldn’t be one bloke sticking his finger in everyone’s bum.
‘I said to the nurse the next day, “What is the deal with the anal swab?” Nurses have the best sense of humour on the planet as they see humanity at its best and worst. And she said, “We don’t do anal swabs at this hospital.”
‘I never saw him again. Nor did he call. I didn’t get any results but he did swipe right so if this was Tinder, I’d be in luck!’
‘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 was asked to be the voice of Hubert in the eBook called “I Didn’t Like Hubert”. We made the eBook to raise the funds for the Humpty Dumpty Foundation so they can buy life-saving equipment for sick babies in hospitals.
‘Hubert is full of life and full of energy. I’m not sure what age he is but he is a young child. He has the most amazing imagination ever. He uses his imagination to create incredible adventures. When I was a you ng child I would have loved to hang out with him and visit his make-believe world. But the other kids don’t seem to see just how cool and full of life he is. The other kids in the story seem to think he is weird because he dresses differently and has his crazy hat and a pet rat. But one day one of the kids notices just how much fun is Hubert is having and begins to change her mind about Hubert.
‘I feel a connection with the character Hubert and there’s a story to it. I love the fact that Hubert has big dreams because I always dreamt of being an actor. I am lucky to be living my dream. Hubert gets to play all these different, funny characters when he is playing his imaginary games. And with my acting I get to play different characters when I am acting. I feel for Hubert when the kids say unkind things to him. I have had times when people have said unkind and not very polite things to me and it has made me sad but then I remember I am living my dream of being an actor and have been involved in fabulous projects and have worked with amazing actors and directors from around the world. I am proud of my achievements and I don’t worry about the things they have said to me anyway.
‘I think the themes in this story are something that everyone can relate to – young and old. Children are very clever and I know that they will understand one of the main messages of “I Didn’t Like Hubert” that being different is OK. Don’t be afraid to go out of your comfort zone and try something new. You may surprise yourself with how much fun you have!’
‘We try to make really positive upbeat music so we can share good energy with people. We never intended it to be like that but the feedback that we started getting when we started performing goated us in to really creating a safe positive space through our music so people could express themselves openly and not worry about things that don’t really matter.
‘We just want people to feel like they’re either in love or they are loved and that they can express that love through dancing or singing along or just being a part of a group of people who are focused on the same thing.
‘In society as it is, it’s almost like built-in to be shy and to watch yourself, but the fact is that we’re all on the same planet. It sounds so cheesy and I know people have said it in more elegant ways but we’re like one consciousness and we should stop and experience that together sometimes. Music is our language of doing that but you can see that in art or theatre or anything. We just choose to bring people to that realisation through music.
‘I’m part of a 12-piece hip hop soul funk band called The Regime who get pretty active in the Inner West. If we’re not gigging, we’re busking.’
‘I used to work on breakfast radio every morning on triple j and I’d wake up at 4.30 and leave the house when it was really dark and no one was out. But there’d be an old lady that slept out the front of our apartment door. She was there every day for a year.
‘It was kind of weird as I would always ask her if she needed anything but there was always a disconnect between her and myself. I guess that comes down to communication and what I can offer someone in that situation.
‘It’s not just money – it’s a blanket or do you need a phone call, or an OPAL card? Do you need a shower or do you need to use the bathroom? It’s those things. Taking part in the Newtopian Sleepout is definitely opening my eyes up to everything.
‘I’ve learnt a lot about homelessness so far – about how prevalent it is and how difficult it is to get out of the system. So many Australians, and I have as well, get caught up in this mind-set that we have Centrelink, why don’t you just get the dole, you know? You never really understand the complexity of any issue until you place yourself within that community. Not that I’m necessarily doing that just by sleeping in Newtown Square for one night but certainly just by being a part of this program I’ve learnt a lot more about homelessness. It’s made me more aware of what I can do as an individual in everyday circumstances that I will now be more aware of.
‘The thought of homelessness is terrifying. There are so many things that life could throw at you in any situation. I guess we all have our time at being “the one” at one stage or another and for now everything is good in my life and that’s why I’ll help out while I can.’
‘It’s really important to accept that there are differences between us but those differences aren’t an obstacle; they’re actually a way of helping us connect. Just because we are different and we come from different backgrounds doesn’t mean we can’t combine our energy, skills and experiences for the benefit of everybody.
‘Everybody’s got something to contribute. You’ve just got to find a way of helping that person contribute. Be open to engaging with people. All you have to do is talk to them – just a conversation. That spark can take a person anywhere.’
‘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.’