Aboriginal women
Going back to the day I got diagnosed in 1987, I was just stunned. I was sitting there with Hughie (my husband) thinking, 'I don't want to hear you say this is cancer. It can't be true'. Not me, you know.
The way I saw it was, 'cancer is a disease - you die from it'. I'd seen older people in the past, they'd go into hospital and not come out again. All these things were going through my mind as I was sitting in with the surgeon.
Everything moved so fast like I was on a roller coaster. I didn't really have time to think things through or even think about what a mastectomy even was. You know, I didn't know what it was really about and the doctor kept saying to us, "if you were my wife I would want you to have a mastectomy. I would make her have a mastectomy", and things like that. Instead of giving me other options, like what I know now. I wished I had had somebody who could have guided me with options. Hughie got defensive because the doctor strongly suggested that if I was his wife he would like me to have a mastectomy. Hughie was saying, "there must be some other options", "there must be other ways".
We wanted to know a little bit more but at that time we didn't know where to go to get more information. I was told to get back into hospital and have surgery the next day.
When we all came home, I was dumbfounded. I was so numb. I didn't know what was happening or what was going on. While my cousin's wife Janette was making me tea, I was talking about making my will and giving her instructions for after I leave. I came into my bedroom and started writing my eulogy, what I wanted for my funeral, how I wanted the service to be. Hughie came in and asked me what I was doing. When I told him, he said nothing and just left the room.
Then I went and lay down in my daughter's bedroom where I could see this beautiful gum tree that's on the corner of our house. At that time the wattle flowers were just coming out and I was in a world of my own, listening to the sounds of the birds, the wind, the trees, the leaves blowing. I blocked everything else out. I focused on that tree with the birds, the crows singing out, the kookaburras. That day was the turning point of my life. It just felt so good to be so close to the earth. Mother Earth. The trees.
Even so, it was still hard because I was afraid of facing my friends and going out to the community. I was really frightened of how they would feel towards me, and what they would say. I was adamant that Hughie didn't tell anyone that I had cancer, but people found out anyhow. It doesn't really surprise me.
After I came home from hospital, the house was full of people wanting to help. But I needed my own space to sit and just be myself and talk to Mother Earth. That space is important to anybody going through a survival and thinking where you are going next.
I didn't feel good about telling people that I had to be on my own because I knew they were there trying to help me. But once I told them and spoke to them about it, they understood and didn't take it to heart. They knew they could only walk so far with me and that I had to walk the rest of the path alone.
It was threatening to have people coming in helping with the housework, the cooking and the child care. Psychologically I thought, 'this cancer is not going to stop me doing things. I want to be able to get up and do my own washing and cleaning, and hold my baby' - she was only 8 weeks old by the time I got out of hospital and I wanted to hold her, kiss her, smell her.
I'm a person who likes to clean my own house, do my own washing and things like that. I didn't like people coming in and invading that area of my life, even though I knew I'd do the same if it was them. I did try and get up and do something but I went down anyway, so I thought, 'oh well, that's it, I had a go!'
I took me three months to get out of the house after I came home from hospital. I was so frightened that I wasn't going to live for very long and I was scared of what people might say about me, or to me. I thought they would all reject me. When I did go out, I was very surprised about the amount of people who did come up and give me a hug and ask, 'how are you going'. What happened was the reverse of what I had pictured in my mind. I came home on cloud nine that day.
Family
The kids didn't understand what cancer was. They were very reserved and didn't know how to approach me. I guess they were feeling, 'is my mum going to live?', you know. I did see fear in their faces and eyes because it was so unknown for all of us.
It was a bit hard at first for Mum and Dad. They took it a bit hard. After a while they did it in a cultural, spiritual way that helped them handle their grief. They took me bush straight away. We spent the weekend out there, me and my mum and my dad and the families. Mum and Dad got through it the same way I did - through the land, through Mother Earth.
Mum and Dad acted differently to the rest of my family, maybe because they were a lot older. My brothers and my sister couldn't cope, especially my oldest brother, because we're very close. The two youngest ones just couldn't believe that their sister could get cancer, that I could die.
We had never really talked about cancer, just when we knew some old people had died. We'd say, "so and so died of cancer". You wouldn't talk about much else, even ask 'what sort of cancer'!
Like me, we have the opportunity of being more educated, especially my kids. Over the past 3-4 years we've had some close relatives that have had cancer and they've got a much more positive outlook. Their cousin, who's only 22, has just come out of 18 months of chemotherapy for leukaemia. My daughter and her cousins are all the same age and they helped her a lot through the cancer. They went through it with her and they have helped their cousin by being there, telling her not to give up, to fight. They say, 'we thought Mum would die, but she's really well and doing this work'.
My work
Women from remote areas come to Brisbane for surgery and treatment for up to three months. The traditional women are not used to big hospitals like the Royal Brisbane and to seeing so many non-Aboriginal people in one place. It is mind blowing to them. They get very, very frightened.
They rarely communicate with any of the nursing staff and doctors. That's where I bridge the gap between these people - the doctors and the patients. Just by them hearing me say, "Well I have had cancer too and I have had the treatment", I can see a lot of the worry lifted off them.
After we've talked and I've got their trust up a bit, they think about it overnight and I come back the next day and we have a good talk about my experiences. It makes a big difference. It's like, 'if you're here after so many years, cancer's not a death sentence'. They can see that I'm well, looking good and going about my life as normal. I give them that encouragement to fight and a lot of them do start to think differently.
There's cultural issues to do with me being a younger woman and a lot of the patients being much older, but I haven't had any problems as yet. I explain to them, "Aunty, look, you are older than me, but I'd like to help you if I can." They've never said anything nasty and are just so grateful that I'm there for them, to help them through the system and deal with their illness.
I have seen some nurses ask some silly questions. I was visiting a new patient, an older tribal woman. She had an alcohol problem. The nurse asked this woman, "How much grog do you drink?", even though it was on her records. That just really set me back. I said, "excuse me, that is just not an appropriate question to ask this patient at this time. You're here just to look after her as a care giver". That really knocked me because ... that poor woman! She just sat there, stunned, and didn't say anything.
I take time out because the job takes so much energy. You're like a battery, you get drained till you can't work any more. I always make time for Mother Earth and now that summer's back again, we go bush quite a lot. We go to the rivers. It's a chance to sit around the fires and talk, sing songs - it's the whole feeling of belonging to something.
I'm interested in making links with other indigenous people, particularly Black Americans and Canadian Indians. It goes back to being an Aboriginal living in this country and I'm sure there are a lot of experiences we share. Before the cancer, I was a very reserved and shy person - even though no-one would believe it today! -and it had a lot to do with being aboriginal in them old days and not being treated the same as other people were. My childhood and going to school made me very frightened and shy to talk up.
I think we deal with cancer a lot differently to what non-Aboriginal people deal with it. I went straight back to Mother Earth and the Lord. That's where I've got all my strength from. My richness, my courage, everything. I think that for a lot of Aboriginal people, that is where we deal with things, spiritually, with the land and our culture, and we take it back to Mother Earth. I'm coming across more and more women who are really going back to the land and back to the Mother, spiritually. It makes a real change in the way we deal with cancer and also how non-Aboriginal people deal with cancer.
I have always said cancer was a gift to me. I don't know what context people might like to put that into, but I feel that the Lord and Mother Earth gave me that cancer for a reason, so that I could do this work and help other people with the trauma. It made me a very strong woman, a fighter. It made me stand up and be vocal for my people. Getting them through the hospital system with racism and all sorts of issues that we have to face.
It has made me a very strong Aboriginal woman, standing up for our rights and being vocal.
