‘I actually feel quite guilty because I’m having such a great time travelling around, living in my car and meeting all these lovely people. Everybody who stops to talk to me is a nice person. Not all the nice people stop. Sometimes they don’t feel comfortable approaching someone sitting on the street and some of them are busy and that’s fine.
‘I try to make sure that people know that I’m alright. I actually make enough money selling my scarves to get by.
‘One thing that’s changed over the years is that we’ve become more of a cashless society. I’m thinking of going to Officeworks and seeing if I can get one of those portable EFTPOS machines but I have to upgrade my phone. That’s my problem. I’ve got a stupid phone – all it does is make and receive phone calls and send texts.
‘It’s alright though. One of the things I do is I’ll suss out if there is an ATM around the corner. That also gives them a bit of a cooling off time.
‘I’ve actually said no to a couple of people because I can see it in their eyes, they’re buying a scarf out of pity and I don’t want that. Their scarf will be put in a drawer and not worn and not loved. I want people to wear them and enjoy them. If they’ve got to walk 20-30 yards and go to an ATM and get money and come back that gives them thinking time and they might think, ah, I don’t want that and they can walk the other way and not have to walk past me again.’
‘I started transitioning when I was 17 – it’s been about 5 years. I grew up on the Central Coast which has a very low trans population. There was probably me and someone else that was known for it in the gay community. Even the gay scene was really low so it was pretty bad.
‘I went to a Catholic School as well. I came out as a lesbian when I was 14 at the school which was not my best choice. I dropped out of high school because I went in to hospital for mental health reasons when I was about 17. And then I decided I needed to transition to a man and start doing the right thing for myself. There were a lot of members of my family who were quite actively not alright with it.
‘It sounds really weird but I didn’t think she [my partner] knew that I was trans because it wasn’t brought up. From the very beginning, there was no issue whatsoever. We’ve never had a problem with that. But on the Coast it was always something that was raised; there were always people talking about it.
‘When we met, she just didn’t give a second thought to being eccentric which helped lessen the anxiety about how people looked at me or how I behaved. Was I feminine or masculine enough? None of her friendship group even addresses that. They’re all so confident. I think her confidence has really rubbed off on me.’
‘People often forget their manners when greeting me and others with facial differences, severe skin conditions and disability. They blurt out what they are thinking about my appearance – often rude and insensitive and often projecting their feelings of insecurities. I just want people to say hello before launching into these questions – though I’d prefer they didn’t ask me at all.
‘I’ve just written a book called “Say Hello” – a memoir and manifesto about living with a facial difference and being disabled. It has stories of my life until now, anecdotes from other people, and advice for engaging with people with facial differences, severe skin conditions and disability.
‘From reading the book, I want people to be confident in their own skin – no matter how different it might be, and to remember their manners when talking to someone people with facial differences, severe skin conditions and disability.
‘I’ve loved receiving messages from people with Ichthyosis (the rare severe skin condition I have), telling me they felt alone until they read my work.’
‘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.’
‘Working in cancer care makes it harder – I get attached to everybody because I like people. You always get that one or two that you just get attached to a little more and if anything happens to them, it just affects you that little bit more. It gets hard sometimes and you know exactly when they leave here what the next steps are going to be.
‘It’s hard and I try not to but as a human, I get attached to everybody. That could be my downfall.
‘Sometimes I would go and see patients when they get moved to palliative care but not always. I don’t go to funerals of my patients unless I’ve known them for a very, very long time. I’ve been to about 3 or 4 when I’ve been invited by the family but I don’t routinely go to them.
‘The most rewarding part is just the patient saying thank you – that is the best part of it. The reward is knowing you’ve helped that person – not just them but their family as well.
‘I always say to people to do what you want when you want because you never, never know what happens tomorrow.’
‘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.’