Monthly Archives: October 2015

School Sux

My youngest is coming to the end of year 10,this means the usual rounds of nights to go to learn of the different subjects, what is OP eligible and what is Vocational. Nights of sitting and listening to teachers some times drone on when really it would be more fun to stab your eye with a pen. But then the fun starts of going around the booths to talk to teachers individually, speak to older students etc.

After this is the interviews where the school discuss your selection. For us it was a disaster and heart wrenching as a parent watching my daughter think her dreams of going to University and becoming a PE teacher disappear. I had to convince her that it wasn’t over.

The teacher who did our selection said she couldn’t do OP as she had a D for English. I had previously wanted to talk to the English teacher about this but Daughter wouldn’t let me. He assignments and tests were all B’s and B plus, so how did she get such a low-grade?

The interviewing teacher then proceeded to speak about the advantage of her doing Vocational and doing a cert 3 in PT (personal Trainer). I said no she wants to be a PE teacher and by not doing OP how can she get into a university? We discussed the options, my daughter is sitting by me crying. What do you do? I strongly argued her case, I said if she does English next year she will lift her game. Teacher turns to her, tells her that he knew what she was capable of as he had her for one subject and didn’t want her to give it up. He said how when she was focused her work was wonderful, but sometimes she didn’t give it her all. He asked her why? She mumbled something about not always paying attention. He tells her that she can leave school at the end of the year and just go on the dole if she wants. This made my blood start to boil. I reminded him that we don’t have a society that does that any more, nowdays its learning or earning and she can’t do that, and that he is giving the impression that she is not worthwhile teaching.

He then corrected himself by telling me that the school policy is if they think they won’t get a good OP, they prefer them to do Vocational. I asked why? The response was that it upsets the students and they can feel like their studying life has all been in vain and that they feel like a failure. I said, Well welcome to the real world, so instead of standing by the kids helping them pushing them you want to kill their dreams at an earlier age?

He told me that is not the intention and that it is so that they can choice a path more suited to them. REALLY? Blood boiling a bit higher now, feeling the heat. I told him there is a different between the school policy which is about making it look good and the legislation in the state.

So we talked more and more and more. We called in on of the Principals who likewise told me that it would be better for her to do Vocational, I again said no, she doesn’t want to. I was told again about doing a Cert 3 and I went over it again. I was then told that as an Aboriginal, she could look for other opportunities towards getting into University if she really wants to. She said from her experience a lot of Aboriginal kid did Vocational. So the kettle started whistling. I said to both of these educators that we have fought hard to get into University, we have been excluded because of stupid idea’s in schools that our kids aren’t going to make it. I said that at the moment we seem to have a lot of kids doing Vocational, and that from my experience, I have seen too many Aboriginal kids think they are not capable and that they are dumb, because a school had put them in Vocational. I also said that when these kids realise that, this isn’t the case many of them get into the Universities and do well.

So it was decided that my daughter would work harder on her English and then it will be reviewed at the end of the year. I said I was happy with that and that if she isn’t going into OP, I would just put her in a different school.

The story doesn’t end with that. The next day, my daughter sent me a text asking if she could go home as she felt sick. I told her yes, I thought it was still from the interview the day before. That afternoon, I asked her about it, as she didn’t come home ill. She told me that a Teacher Aid had said to her, in front of her friends that its better for her to do Vocational English, because that’s where all the dumb and the waggers and uncontrollable kids go. She told my daughter that Aboriginal people don’t like coming to school and learning. They don’t want to do anything and they don’t understand things and that’s why it’s best she go there. Now this person was not asked to join in the conversation with my daughter and her friends. She was upset and so was another friend of her’s who is Aboriginal as well. When my daughter walked away. This adult said I am not sorry for what I said, it’s the truth. (this then made the other Aboriginal student leave in tears). This was why my daughter wanted to come home. She wagged English, as she was upset and then went to all her other classes.

Who are these people who are casting judgement on my child? These people who are seeing only her race and not her? I am going to follow this up. My other children were upset for her. My son is going to speak to the school, why him? Well if I get too upset or stressed I can pass out. But I have agreed with him that he will talk first then I will go and speak to the School Principal about it. The other reason my son is doing it, is that my daughter is scared of repercussions from teachers. She let out in a flood of tears how some of the comments of other teachers have upset her, how when the Indigenous Aides go to the class door some teachers make comments to students about “Here comes the babysitter”, when they hand in assignments they (all the Aboriginal and Torres Strait Islander Students) get asked did you do this yourself or did someone else do it.

My 15-year-old child has been racially vilified and insulted by an adult in a position of power over her. She feels lost and alone. She obviously has no trust in the majority of teachers. How can this happen when we are supposed to be the lucky country? Lucky for some.

I will keep you informed as to how this goes, keep your fingers crossed that this will end well


How Do You Stop Yourself From Killing a Teenager

It’s another day and another argument in the house. What is it with teenagers? Everything you do as a parent is wrong, and really everything they do to a parent is wrong on some days.

One of my girls is very feisty, she is ready to take on an argument at anytime. We usually have the standard arguments, you know the pick up your clothes, do the dishes, clean up after yourself. But other times we have worse arguments. Like all families arguments are not fun, but when you combine a single parent with terminal cancer it’s unbearable. I have to be mum and dad, I can’t take a rest and I cop all the crap from the kids.

My kids really are great kids, they have been to hell and back in a speedboat with me. But sometimes what they have been through and are still going through intensify the issues. I have not always been there for them. I had to work to pay the bills and then when I got sick, I had to give up a lot of the things we did. I was incapable of taking the kids to their sports and a lot of school events. I was so ill with Chemo and working at the same time I let down my kids. Then when the after effects of the chemo made me have to take a year off I was again unable to do for my kids. As my son got older and got his licence he was able to drive his sisters to places and he also gave up University for a year to take care of me and his sisters.

But I was a bit shocked when arguing with the feisty one, she said “You don’t know us and you don’t get us. You are no better than a dead beat dad. You’re just not there”. This was harsh, and I lost my cool and ranted and raved about all I had done for them. She pointed out all they had done for me and all the horrible things I put them through, when I was unable to control myself.

Now I have cooled off, I can see what she means. Since I was diagnosed so many things cut back and the Chemo was hell for all of us and then I spent a year in an out of hospital and sometimes I was so out of it that I had no idea what I was saying or doing. I called my kids some horrendous names and said shocking things to them. Sure I wasn’t in control. But you can’t take back the damage of those incidents. You can’t undo the hurt. You can’t repair the psychological impact on those kids as they watched their mother turn into a harridan and then next thing you know she is on deaths bed.

So yes I was an absent parent for a while and my kids got into some bad habits while I was unable to play the role of parent, I was not able to be there and I was just not what they needed. I can’t change the past, but I can try to change the future and try harder to be a better mum. I know this is going to cause a lot more fussing and fighting as I bring them back into line of doing the jobs they have to do, cleaning the shower, doing their share of the house work and making sure homework is done. I know we can do it, because underneath all the carry on, we do love each other and we are one. We travel in a pack and do everything together. We always make decisions together, and support each other.

My kids have been through a lot and probably need a lot of help as they grow to get over all the drama and trauma they have been through, but they with the grace of God will make it.


Breast Cancer handbook for Aboriginal Health Workers

I think this is an important step, we need to have more booklets for health workers black and white to help them deal with Aboriginal and Torres Strait Islander clients.

NACCHO Aboriginal Health News Alerts

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As part of Breast Cancer Awareness Month, Cancer Australia is proud to release
This handbook provides evidence-based information for Indigenous health workers to start the conversation with Indigenous women and promote increased breast cancer awareness, prevention activities, screening, early detection and quality of life after diagnosis.
Breast cancer is the most commonly diagnosed cancer, and the second most common cause of cancer death in Aboriginal and Torres Strait Islander women. Compared with non-Indigenous women, Aboriginal and Torres Strait Islander women are 14% less likely to survive 5 years after a breast cancer diagnosis.
The handbook is a valuable resource for all Aboriginal and Torres Strait Islander health professionals.

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Be careful what you ask for

I was at an event and I was talking about my cancer journey and what it is like, now when I do these I tend to joke a bit and encourage people to ask questions as I go along and not wait until the end. This particular day I was talking to a group of teenagers. I was talking that women’s cancer is important and to do what you can to minimise having a cancer and that a brain tumour is a women’ s cancer, especially as the numbers of women with brain tumours is increasing.

I spoke about the changes that happened, especially when I was first diagnosed and I was put on high doses or steroids. I said I used to joke that I was on the same drugs as Lance Armstrong (turns out I just about was). I spoke about the effect this had on my body, how I just bulked up and doubled my weight, telling them that not all cancer medications make people emaciated. I spoke about the swelling in my brain and how this affected me.

Then the questions, first one and then the flood gates opened. The first question was quite tame, “Did the course of steroids, cause you to grow lots of  hair?”. Yes it did, I started to get a mustache and side burns, and for the first time in my life I had to wax my face, while at the same time this hair is growing the hair on my head was thinning and falling out. Next we had “Did your periods stop and what happened with that?”  Yes it affected my periods I suddenly stopped having them and over the years I don’t know if I went through menopause as the drugs gave me hot and cold flushes but it meant one less expense. The came the whammy, “Did you have sex and if you did what happened to your head?”. Well this made me laugh, I said that I was in a relationship at the time I was diagnosed and the gentleman in question, thought we should marry. I thought me having a brain tumour really is not a good reason to marry and broke it off. I then went on to tell them that when the swelling was happening I had to be careful not to get too stressed as I blacked out and did things that I didn’t know. I honestly told them that I was glad I was not in a relationship, because I thought if I had an orgasm when my brain was swelling I might die. This brought laughter and a lot of, well you’d go happy. Not satisfied with that, the questioning on this area continued, now I don’t know if it’s because they were teenage women or if they were just a fun and twisted group. They started joking about buying me a vibrator to try to then get back to them as to how I go, and if I die they will attend my funeral.

This also led to questions about can you have sex if you have an ovarian cancer, the answer is yes when you are well enough you can. “Can you have sex with breast cancer or if you have one removed?” Yes of course you can, you just need to be well enough and in the right space and be able to talk openly and honestly with your partner about these things.

Why am I telling this? It’s simple, if these girls were asking this of me, how many other questions are there that don’t get asked of the medical profession because of the shame factor or Aboriginal people. I am blessed that I can help others and answer what might seem strange or funny questions, but these are really serious questions. We need to have someone to be able to talk to our people to ask these questions on behalf of those who feel shame to ask them and we need somebody to answer these questions.


Psychological insight into Coll

Let me tell you about my experiences talking to counselors and psychologists. So when I was considered terminal by the medical profession, I was sent off to talk to people about dealing with this and all other sorts of things.

We talked about how to deal with my feelings, and how to cope with the overwhelming problem of constant pain and my impending death. When talking about terminal, I said my usual line of “I am terminal, but I don’t look like a bus stop”. So I was told that I was in denial. I disagree with this, I just have to deal with it as a joke. I know I am going to die, I know it could be at any time. I have made my peace with that. I have had years of doing that. I have had many horrid hospital visits when it didn’t look like I would survive. So I know all of this I have my will I have my beliefs and I have prepared myself and my children for this. I am not scared of death, we are all going to die at some point.

The other problem with these wonderful people is that they all seem to have done a unit on Aboriginal and Torres Strait Islander people. But this doesn’t prepare them for the differences between all the different nations. I have my customs, they don’t understand them, as they didn’t learn about it, so they deflect their inadequacy and lack of knowledge on me as if I didn’t read the text-book and fit in the mold they have on what I should be. They find it strange that how my people deal with death is different to my joking about it. No room for individuality there.

I have had to explain to them about why I kept my head covered long after hair grew back (this is my culture that I have to protect my head from evil spirits, and have to wait till all my hair came back). They didn’t understand why I won’t have some males deal with me alone. They don’t understand when I talk about my Aunties and Uncles, nieces and nephews, I had to explain the whole extended family to them.

They were perplexed at the fact that my kids have different shades, yet have the same father, I had to explain genetics to them. Oh my what a world of fun that was.

They get confused that I speak so well (insert rolled eyes), yet I am not a full on english speaker. I am a person with two degrees have had jobs in the media Public Service, Health and in Community, this doesn’t sit well with their idea’s on what I should be. It just does not compute. I have been told that I am not a real Aboriginal, I guess I am just a card board cut out, because I live in the urban environment and know a bit about a lot of things.

I have recommended that these people speak to one of the Aboriginal counselling services to learn that we are really all very different. We can still have our culture while living in a brick veneer. We are still Aboriginal even if we have an education (which I might add a lot of us have). They are set in their idea that we all live in missions or something. Yes I have trouble navigating the health system, yes I have problems with the constant racism in society. What I don’t need is some highly educated white person telling me how I should feel and how I don’t fit in with their idea of what I should be.

So I have organised for when I have appointments that I take one of the mental health workers in with me so that person can translate for me. Oh how the wheels just keep turning around and around.


Aboriginal and Torres Strait Islander Cancer Statistics

Aboriginal and Torres Strait Islander Cancer Statistics

Australia’s record of cancer survival is one of the best in the world, yet Aboriginal and Torres Strait Islander people continue to experience disparities in cancer outcomes. (Cancer Australia, 2015. National Aboriginal and Torres Strait Islander Cancer Framework, Cancer Australia, Surry Hills, NSW.)

Cancer is the second most common cause of death for Indigenous Australians (20%), after cardiovascular disease. (Australian Institute of Health and Welfare. 2015. The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2015. Cat. no. IHW 147. Canberra: AIHW.)

Aboriginal and Torres Strait Islander people:

Finding Reference
·         have a different pattern of cancer incidence, with some cancers occurring more commonly than amongst non-Indigenous Australians (lung, liver, cervical cancers), while other cancers occur at lower incidence rates (prostate, bowel, breast cancer among women) Australian Institute of Health and Welfare. 2014. Cancer in Australia: an overview 2014. Cancer series, No 90. Cat. no. CAN 88. Canberra: AIHW.
·         have high incidence of cancers that are preventable but are also more likely to be fatal (lung cancer, liver cancer) Australian Institute of Health and Welfare. 2014. Cancer in Australia: an overview 2014. Cancer series, No 90. Cat. no. CAN 88. Canberra: AIHW.
·         have higher levels of modifiable risk factors relevant to cancer including smoking, risky alcohol consumption, poor diet, low levels of physical activity and high levels of infection such as Hepatitis B Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         are less likely to participate in cancer screening programs Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         are more likely than other Australians to be diagnosed when cancer is at an advanced stage of development Diaz A, Whop L, Valery P, et al. 2014. Cancer outcomes for Aboriginal and Torres Strait Islander Australians in rural and remote areas. Australian Journal of Rural Health. 23 (1):4-18.
·         are less likely to receive adequate treatment or be hospitalised for cancer Australian Institute of Health and Welfare. 2015. The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2015. Cat. no. IHW 147. Canberra: AIHW.
·         have higher levels of modifiable risk factors relevant to cancer including smoking, risky alcohol consumption, poor diet, low levels of physical activity and high levels of infection such as Hepatitis B Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         have a slightly lower rate of cancer diagnosis but a 30% higher mortality rate than non-Indigenous Australians (221 and 172 per 100,000 respectively, age standardised mortality) Australian Institute of Health and Welfare. 2014. Cancer in Australia: an overview 2014. Cancer series, No 90. Cat. no. CAN 88. Canberra: AIHW.
·         have had a significant increase in the mortality rate due to cancer (16% between 1998 and 2012) while the cancer mortality rate for non-Indigenous people has fallen significantly (10% over the same period). Australian Institute of Health and Welfare. 2015. The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2015. Cat. no. IHW 147. Canberra: AIHW.
·         have high incidence of cancers that are preventable but are also more likely to be fatal (lung cancer, liver cancer)

 

Australian Institute of Health and Welfare. 2014. Cancer in Australia: an overview 2014. Cancer series, No 90. Cat. no. CAN 88. Canberra: AIHW.
·         are much less likely to survive five years after a diagnosis of cancer than non-Indigenous Australians. This difference is greatest within the first year following diagnosis. On average, 74% of non-Indigenous Australians will survive for one year beyond a cancer diagnosis, but only 61% of Aboriginal and Torres Strait Islander people will survive for the same length of time

 

Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         face significant burden of disease, with cancer being the second leading cause of fatal burden of disease for Indigenous Australians.

 

Australian Institute of Health and Welfare. 2015. Australian Burden of Disease Study: fatal burden of disease in Aboriginal and Torres Strait Islander people 2010. Australian Burden of Disease Study series no. 2. Cat. no. BOD 2. Canberra: AIHW.
·         Smoking rates amongst Aboriginal and Torres Strait Islander people, although improving, remain higher than in the broader Australian population, and smoking remains a major cause of cancer Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         Lung cancer remains the major cause of death from cancer for Aboriginal and Torres Strait Islander and, along with other smoking related cancers, makes up a large proportion of the cancer burden. Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         Aboriginal and Torres Strait Islander people also have high levels of a number of other risk factors for cancer, including obesity, lack of exercise, risky levels of alcohol consumption and hepatitis infections. Australian Institute of Health and Welfare & Cancer Australia. 2013. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. Cancer series no.78. Cat. no. CAN 75. Canberra: AIHW
·         The most common cancers among Aboriginal and Torres Strait Islander people after lung cancer are breast cancer (among women), bowel cancer and prostate cancer. Australian Institute of Health and Welfare. 2014. Cancer in Australia: an overview 2014. Cancer series, No 90. Cat. no. CAN 88. Canberra: AIHW.

 

 


Survivor Guilt

Survivor guilt is not something that one would associate with cancer, but it happens. I can only speak for myself but I feel bad when some one dies of a brain tumour. They get diagnosed and they are dead within a couple of months. When I was diagnosed I was told I could go in a second or I could go in 20 years. So I feel sometimes like a fraud that I am still going while others pass.

I do feel blessed that I am still here, I have children to raise, but so do others. So why am I still here and others are taken? I do believe I have a reason as to why I have survived especially all the trauma I went through with chemo, but it still seems unfair. I know of a young mum with a baby and a toddler, she passed within a month of being diagnosed. Why was I spared? Is my purpose to promote the better health for my people? Get better and more appropriate help for us?

I did have many times when I was in great pain, where I thought the doctors were right and that I would die, but I always came back. Even when I did cross over, I was brought back with defibrillator and CPR. Is it true only the good die young? No that can’t be the case because my parents lived for quite a while and they both passed away with cancer. Nelson Mandela, Ghandi both incredible men were good, and lived to a ripe old age.

So why do some of us stay and others go? I get annoyed when I see people who have been given another chance just continue in the same old way, do they not realise they were saved for a reason?

This is survivor guilt and I am sure that I am not the only person who has cancer and feels this way. I was at first considered inoperable now medically speaking I am terminal, but I don’t intend to die anytime soon. I want to live. I want to get a job again, I want to watch my children complete university and the youngest to complete high school and go to university. I want to nurse my first grandchild and many more. I know this is very selfish, but I want to live. I am at peace with myself as to my death. I do not fear it.

But I do wonder why I haven’t died yet and why I still keep going when others don’t make it. They say Cancer is a journey, well it’s not a nice journey, it’s not a peaceful trip down the stream, its white water rapids and waterfalls. Yep it’s one hell of a ride. But why do some survive, are cured and others live with it for years? Why do some pass so quick?

Medical science has a lot to do with it, a will to live also has a lot to do with it. I know some people see cancer as a death sentence. This is common with my people, cancer is a dirty word. But we need to move on from that and talk and share and help each other to get through it to have more survivors and conquerors.

But back to the question, why am I still here? What is the reason? What should I do. I know that these things will be revealed in good time and hey I am not knocking the fact that I am still standing. I just get tired and I just don’t see the justice in how some keep going when others who are no different, who have more to live for just fade away. This is survivor guilt and I am sure that I can’t be the only person who feels this way. I know there has to be others out there who question why they are still here. Maybe I should talk to someone about it, but I find that the psych’s who deal with me and my cancer and pain don’t really get it or me. ( I will write my next blog on my experiences with this)

So I guess I will just keep pondering this, keep promoting Cancer Advocacy and working for my people and raising my children.

Thank you