Growing Up with Cancer (GUWC) is a project funded by the Australian Research Council that brings together researchers, artists, advocates and clinicians from Sydney Health Ethics (University of Sydney), University of Newcastle, Children’s Hospital at Westmead, and CanTeen – the Australian organisation for young people living with cancer.
The project used research and creative practice to understand the experience of having cancer during adolescence and young adulthood. Between 2010-2011, 27 young people participated in interviews about the nature and extent of the impact of cancer on the transition from adolescence to adulthood. Of these, 19 collaborated with an artist or worked on their own to produce a self-portrait that represented their experience of growing up with cancer.
Between 2012-2013, an exhibition of these works toured Australia across hospitals, communities, art and education spaces. The works are now on permanent loan to the Peter MacCallum Cancer Centre art collection.
We conducted interviews with 15 women and 12 men aged 16–29 years who, between the ages of 10 and 22, had been diagnosed with a variety of cancers and haematological malignancies. The interview was about life before cancer and the impact of having cancer on their psychological, emotional, and social lives.
Our major finding from the interviews was that cancer has an enormous impact on young people – transforming who they are. It is also immensely disruptive to young people’s lives and relationships. It is a mistake to see cancer simply as a ‘focal’, specific disruption to linear, progressive transitions from childhood to adulthood. Cancer is a complex social, relational, interpersonal, and continuing influence that creates both difference and the necessity for accommodation. Because the changes associated with cancer illness, treatment, and survival may persist for months or years, or be life-long, young people and their parents, peers, and romantic partners must negotiate together how to accommodate the ongoing effects of cancer into their daily lives.
Read more about the Growing Up with Cancer project:
At the start of the whole ordeal I started reading about how to keep my mind strong. Your attitude and how you approach it mentally is so much a part of it. Staying strong and determined is vital. But I’m also fighting myself; it’s a constant battle to keep positive. You’ve got to constantly pick yourself up.
I spent six weeks in bed after my liver resection. It was so painful. Not many people appreciate what it’s like just to be able to get up and walk around. I wanted to take advantage of the time I was able to do things. Kickboxing probably isn’t the best rehab after an operation, but it just did me a world of good. To prove I can still do things. I’m not a sick person. This cancer that was in me...it’s just picked the wrong body. I’m not going to let it beat me.
This picture is symbolic of me triumphing over my negative side. I believe your attitude affects your body so much. I gave myself strength through kickboxing. The message of the self-portrait is, to draw strength from everything around you, like all your friends and family. You’ve got to keep positive and keep negative thoughts away. That’s how you overcome it. I think that with a positive attitude, you can overcome most obstacles in this life.
I didn’t think there was anything to be gained from doing a picture of myself. You could take a photo of me and stick it on the wall but that doesn’t say anything about me.
I experience the world in colour and these are my colours: purples and pinks, very vibrant warm passionate colours. My colours change through time as I do. But in my image, you can see darkness as well. The darkness is swirling, moving through all the brightness and the lightness of the colours. A bit like rainbow patterns reflected off an oil slick: chaotic but beautiful.
That is all underneath the surface of the protective inclusive coating that keeps it all together. Some people can peel it back, but most people just see the outside. No matter what, inside of me there’s a place that can’t be touched and it’s strong. I know that no matter what happens in my life, I have an impenetrable core that just makes me so resilient to anything that happens. Even if the rest of the construction gets blown apart, this impenetrable core will still be complete and absolute and untouched.
I don’t have many memories from when I had cancer. I have blanks in my mental idea of the time. During the chemo I didn’t really get too involved in what they were doing; I was like, “Yeah, whatever, do it, you know, get it over and done with.” The blanks in the image represent feeling like I wasn’t there. I know it happened but I wasn’t there. I’ve heard other people talk about blurs but I have a blank. I felt sort of out-of-body during the whole thing, not really attached to reality. I went to school during chemo but I didn’t really retain any of it. I just went in to see my friends and try to get back to reality. At least going to school I had people around me and I was able to pretend that I wasn’t feeling horrible. My hospital identification label is one of the only things I have left of the experience. That’s basically what I have left of the cancer.
I don’t really think about it much now. I just try to get back into how I was before and try to focus and motivate myself a bit more. It’s happened, it’s gone, move on. There are a lot of people who had it worse than me. Now I don’t really relate cancer to death as much. It’s not the end of everything, it’s just something disrupting.
My sister gave me the bear as a little companion for when I was having chemo in ICU. That was very, very thoughtful of her. I’ve still got that down in my bedroom.
The collection of photos is from my last two CanTeen camps; they’ve been very significant in my life. Mixing with those people who are a part of CanTeen it’s made me realise that I’m not alone in the world; people have been through very similar situations to me.
In the image there are degrees of shading from light to dark. Where it’s lightest, that’s my experiences with CanTeen and the picture of the Survival Squad CD that I was involved in making. I’m looking into the darkness, looking back at what I’ve been through and what I’ve had to conquer in my life. It’s signifying that I’ve got these positive things in my life and I can look upon them instead of looking at me battling cancer.
It was very, very hard for me to bring back these memories because I was just so sick.
I like my self-portraits because I'm glaring at the camera. So to describe it in an arty-farty way, I'd say that it's more or less "hit me with your best shot". Defiant, smug, yeah!
After chemo and cancer and all that, I went a little bit overboard with just being wild. I wanted to show that side of me in the self-portrait.
That was then; I'm now down the track: things have happened; people and places have been and gone. It's been some time, and I've forgotten why I did these.
Thinking back to all that's happened, I do want to strike back!
After the tree split and lost its branch the tree became a sort of symbol for my cancer experience; the more the old branch died, the more my cancer disappeared. After my cancer had gone, I went back to visit the tree and I saw that a new little sapling was growing from where the big side of the tree had been. It felt like that was symbolic of my new life. After cancer you really do have to start over; you have to start from the roots up, the whole branch you grew that was your life is gone. It took me years to develop my new little sapling into a stable tree. The last time I went to visit it the sapling had become a big tree and I thought that was quite reflective of where I am in my life now. The tree sort of represents my old life, my history, where I’ve come from and also this new part of me that is growing out from the roots of the old tree; it’s all about new beginnings and starting over.
I’ve done a lot more thinking about who I am. Looking closely at what’s important to me in terms of cancer, I do feel quite strongly about my past and that is a pivotal part of my personality and identity. My cancer experience is more of a foundation, a ground mixture; my roots. Cancer was a brilliant learning experience that forced me to see life in a new perspective, I accept that a lot of things are out of my control, and always live life to the fullest. Something I’ve grown from and that changed my life.
It took me ages to find all the photos and scan them so I could muck around with them. I decided to cut bits and pieces out of the photos that I thought were important and add them all into one photo, so, like the bits and pieces of me that I thought were important. Each element is a time where I developed things. My ears at certain ages, when I learned to listen better. So listening to others is my left ear, my right ear was listening to myself. My nose, just sticking out of other people’s business and keeping to myself. Learning to smile, because that was when I first started properly smiling, because before I didn’t really like to smile at all. I had my chin from when I copped everything on the chin.
I tried to think of emotional things. So I pulled out my three photo albums of hospital photos. All the things I realised that I’d forgotten about. In this process I had control over what I want to show people, rather than just splaying my emotions across the screen. I chose what I wanted to show and how I wanted to show it. The meaning behind them is stronger because of this.
I made things physically and scanned them.
The infinity symbol is important. Since being sick and having a near death experience, I’ve just had a feeling like no matter, even if I do pass, I’m going to live on forever.
The inside of the tunnel shows my ideas about my future; having a baby. One picture either side of a staircase. All the stuff inside meant something then. The outside of the tunnel is all the stuff that I had to deal with when I was sick. They are hospital stairs. I used a barefoot to show that I was unprepared. There was definitely light at the end of the tunnel for me: getting better; having my daughter, which I was told couldn’t happen. I am positive there are other things, good things that will be brought into my future life.
I photographed my Hickman scar to show how I felt about it from the time of having it to the feelings I have now. My hand is covering it completely because I didn’t accept it but now my hand has slowly moved away from it. The scar is in colour to show that it’s not ugly any more. This is the site where my new cells entered my body.
When the time came I exchanged my long hair for a light blue beanie, security was everything for me.
Numbers played a huge part during my transplant. 25% chance of survival. 99% donor match. 100% success.
The first panel is me, but it’s quite blurry as you can see and that’s meant to represent me when I had Leukaemia. Everything was blurry and topsy-turvy. I didn’t know what was going on; the picture for me didn’t look too bright. The next image is an in-between, it’s mid-blur where you’re still frightened. You’re going through problems; you still haven’t made your way through yet but you’re getting there. The end one I call the optimistic panel because you’ve actually left the blurriness behind and life seems to be a lot better. You can see I made the transition; I’m standing up much more straight. I made the picture much clearer to show me having come through all these problems and being quite happy and being in remission and seeing that there is something for me to do and have a bright future hopefully.
My smile in the last image represents optimism. I’ve got a second chance of life. There are not many people that get to have a second chance and I think that in itself is enough to be happy about. I’m getting to achieve my life goals now and that’s due to me having my health.
You can see that I am so far away from it all, that there may never be an ending to this journey that it will just keep going on and on. You feel so out of touch with everything, but lucky I have the fence supporting me and holding me up, telling me to not give up or let go. My support has been never ending throughout my cancer journey, but having the support and people not actually understanding was the hardest thing for me. People would always say: “stay positive”, “look on the bright side”,” you’re so strong”, but these words of ‘support’ never bought a smile to my face because they never actually knew what it felt like and still feels like today. People think because you look better physically that inside you are too, but that’s not always the case.
Dance has always been a huge part of my life and when cancer stole my limelight I thought that I would never be able to dance again, that I would never feel strong enough physically to get back up on stage and perform like I used too. But my passion was stronger than my body, it told me to get back out there and do what you love. So that’s why all my pieces are back together when it comes to dance.
You have to learn everything in life step-by-step to get the final piece. As each day goes on for me I learn how to cope with the everyday troubles cancer has given me, step-by-step.
It’s a very lonely time in your life and just having myself in the portrait represents that. It’s a very lonely journey. I wanted it to be plain. If it’s not overly happy or overly sad it gets them thinking, what is the expression then?
I wanted to do a simple self-portrait, but dramatize the shadow and then make the other side more colourful. It starts off really light and then gets darker as it goes. It’s a contrast, the two sides of me. There’s always the cancer side that’s always going to be there. But there’s all the other stuff that I get involved in, the more colourful side of life. That’s just my regular life. I guess that colourful side also represents hope. The darker side is when cancer happened. You’re kind of coming out of that experience of having cancer but it’s still there.
I didn’t want too much clutter in the picture. I just wanted it plain and simple, because lately anything that I do has just been like that, just simple.
I wanted to do something that showed different sides of me. I wanted it to be me in duplicates, I don’t think you can show all of one’s self in just one photo.
In the first image (‘This is me, like it or not’) I wanted to merge three images of me, using dramatic lighting and playing with shadows to set a dark and serious mood. The one to the right is the more reserved side; keeping my feelings to myself. The left one is the more confident one; it’s more, posey! I don’t know about the middle. I just wanted to stare down the barrel of the camera. It was confronting, because I’m not used to being the model. I really wanted to show myself: my vulnerability along with a high degree of confidence and acceptance of self. The second image (‘Sunshine’) is more carefree and flamboyant. A coloured background compared to the ‘This is me’ black background, and my whole body, without the strong shadows. On the right-hand side of each image I’m looking away from the camera. Sometimes when you look away from the camera it portrays stronger emotions.
In life, the more depressing moments are more inset in your mind. You don’t always remember all the great moments compared to all the shitty moments. So, that’s also what is shown in the portrait, there’s two duller emotions compared to the one brighter one.
(First image) Cancer’s always been a big part of my life. It’s always going to be there in the background, just floating around. Sometimes it gets in the way and it’s a bit annoying. It’s a bit like a balloon, hovering around me all the time. A light thing, but it’s still around.
The balloon is purple because I associate it with chemo; purple is the toxic – cytotoxic drug colour. The balloon dominates the confined space of the elevator, just as it used to dominate and consume my life. The next step is when the hair starts growing back and you can slightly let go of the balloon (being ‘different’, isolated, fears, pain). In the last image my hair is long, and I’m healthy. The balloon is still hovering around, but it’s not in my way. I can get on with my life and move up the escalator.
(Second image) This image depicts much of how I felt in 2009. Since the time of my relapse, I always liked to use lots of red in my paintings. Red is a really strong, energetic and powerful colour. It’s also the colour of blood, and given that I had Leukaemia, there is a bit of a symbolic nature to its use. I’ve painted it as my background, or as my past. And have filtered it into the foreground image of my face, the present.
This image shows the transitioning state of how I have come to terms with my past, it’s challenges, losses, ‘unknowns’ and pain, to embracing it’s great lifelong lessons. I believe cancer has provided me with a challenging, yet richer quality of life and I would not alter my experiences for anything else.
The self-portrait is about what I’m doing at university. I’m 100% focused on science as a career and the lab coat is a symbol of that.
I’m standing in front of a door, which symbolises two things. A locked door can be leaving things behind, like my past. Or I could be reaching into my pocket with keys for the future and walking through a door. The glass is opaque so, you don’t really know what that door holds, future or past. The image works in those two different ways. I’d rather be optimistic and think about what’s in front of me.
Thinking about my experience doesn’t bother me and I don’t mind talking about it. But I don’t really share it as an opening. I don’t say “Oh hi, I’m a cancer survivor”. It’s important that I have control over who I share my experience with.
I like the beach in summer, and I picked the cliffs because it was a good setting. There wasn’t anywhere else really that I had such a strong connection to.
I called the portrait Supersam. That is what I get called. It’s about conviction, a positive image. That’s what I wanted from the start, because my cancer hasn’t been all negative for me. There are a lot of positive things that came out of my cancer journey. I’ve got the darkness in there to show that there is a bit of dark but it is still very positive. It looks like a “Super Sam” pose. I’m looking off into the distance, which is my future. I like how the picture is kind of edgy, because there have been bumps along my journey. It’s been rough, but it’s not like I have been through this all alone.
It was such a strong image, we just added a bit of darkness to the shadow, and brightened up some of the colours in the skulls. Which represented my fear of death. It’s a really powerful image. I love it.
My self-portrait represents the contentment that I was hoping to achieve once I had put the most difficult aspects of my treatment behind me. This was a process that I believed would take at least three-and-half years: a long haul, during which time I was told not to expect too much.
The images fading into the background are people, objects and experiences that were significant to me at that very emotional time. I have included photographs of my 21st birthday, as it was an important celebration, not only for me, but also for my parents. I have a good relationship with my brother, and he is also represented in the self-portrait.
I have used an overlay of green simply because it is one of my favourite colours. I like the way my portrait emerges from this wash of colour and transparent images.
This portrait was done in early 2011 when I was recovering from surgery and another period of illness. I was waiting for my life to return to normal, so I still viewed cancer as a negative and sometimes ominous force but one that was temporary. I chose the location and colour scheme to set a disconcerting or uncomfortable mood that would represent the fear of cancer. At the time I had a fascination with bones because of the connection they have with my cancer (osteosarcoma) and also the way in which they can be symbolic of death.
It has been almost two years and I haven’t recovered to full health like I thought I would. My view now is that the long-term effects of cancer, both physical and emotional, will always be a part of my life. I look at cancer as less of a negative thing and instead as an experience that has changed my life profoundly and in a permanent way. My focus now, as an 18 year old finishing high school and still living with chronic pain and health issues related to cancer, is how to shape my life and future in a way that will allow me to do all of the things I’d like to do within the constraints of the long term effects of growing up with cancer.
The first image is of me being in a secluded corner, being alone and looking up at this big, terrible diagnosis of cancer that is a big burden on me.
The second image is my support system. I had brought in photos of my friends and I also wanted to try and fit CanTeen in there somehow. I’m looking up at cancer in the same way as the first image but now I’ve got all the supports surrounding me.
I tried to get the perspective in the first two images of this thing looming above me, this thing that was controlling my life and there every single second. In the third image my back’s facing towards the camera as if to say: “That’s it, I’m done with this thing, that burden”. I’ve come out a new, strong individual.
I had named my tumour Bert. I decided to write Bert on the footpath in water because I’m an Aquarius. It’s me walking into my future, walking away from this dark thing. I’ve survived it, I’ve gotten through it and now I’m heading towards a bright future.
Sadly, Kahlia relapsed in January 2011 and passed away in December 2011.
She is deeply missed.
‘Bedlam’ was about all the things I had to go through in hospital. There were all these tests and my amputation and all the times I had to go through operations for my biopsy and everything. It got a bit crazy. I put piano just going, “di di di di di di” like that, kind of like the life monitor thingy how it goes beep, beep. The bass drum is a deep sound to show the heartbeats. I had a picture in my mind of all these surgeries being done on me and then I just wrote that and so I put the little motifs to try and show it. It was just one little synth note but the layers kept coming on and on. It recreates the crazy, hectic time.
For ‘Apollo’ I thought of how looking back on the whole journey it doesn’t seem real, it’s out of this world, hard to comprehend. That’s why the track sounds like outer space. Sometimes during treatment I felt a bit isolated and I wanted to convey isolation and space. The synths are a bit sinister, because it was a bad experience. Cancer was bad to go through but it has a lot of positive aspects to it.
‘Midnight’: I watched a lot of horror movies in hospital and I wanted to make a sound track that reminded me of when I had cancer. In hospital at night it gets pretty creepy because it’s all dark, pitch black and then you just hear beeping of different people’s drips and everything. Those sounds created a crappy mood, freaky. I wanted to create a mood of not wanting to be there, wanting to be somewhere else. The whole cancer thing was really daunting and overwhelming. The sounds are a bit mysterious to show that feeling of being scared of the unknown.
When I made ‘Au Revoir’ I was thinking about how, for me, growing up with cancer was about beating it, which is why the music is dramatic and triumphant. But it’s also bittersweet, a sort of happy melancholy. There is the joy of finishing all the treatment and stuff, but you have had to put up with all the hardship along the way. There’s happiness, but it’s also kind of like ‘why me?’ I wrote it as a way of saying goodbye and moving on.
The Growing Up with Cancer project was supported under the Australian Research Council's Linkage Projects funding scheme (project number LP0883632). The Growing Up with Cancer project was conducted by Sydney Health Ethics at the University of Sydney, the Children’s Hospital at Westmead and the University of Newcastle, with CanTeen as the Linkage partner.
Professor Ian Kerridge (Chief Investigator), Associate Professor Christopher Jordens (Chief investigator), Kris Smith (Artist and Chief Investigator), Professor David Bennett (Partner Investigator), Dr Pandora Patterson (Partner Investigator), Dr Julie Mooney-Somers (Project Co-ordinator), Peter Lewis (PhD Candidate & Researcher), Sandy Bliim (Exhibition & Catalogue Co-ordinator), Dr Fiona McDonald (CanTeen Liaison)