Monthly Archives: February 2016

Crowd funding story

For two years I’ve battled Stage 3 Non Hodgkins Lymphoma bee through 18 months of chemo and then diagnosed last May with Thyroid Papillary Carcinoma. I only wish I could feel a portion like the person I was once. Although I have had the surgery a complete thyroidectomy and neck dissection last July and Radiation Ablation in October 2015, I struggle to do much of anything and crave sleep. I’m sleeping just as much as I was pre surgery and treatment but I feel there is something not right. My bloods show my levels are apparently ok and I cannot understand why I’m not feeling at least a slight improvement. The doctors and endocrinologist do not listen to me and I swear they think I’m mad. My memory is shot I can’t remember people’s names that I would never forget, even forgetting my own children names at times. My glands in my throat have been swollen for 4 weeks now, no fevers, no sore throat or cold or anything remotely close that could explain it. All they want to do is check my thyroid levels or whatever it is they claim to check in bloods but all they return showing is things are ok at the moment so I’m on a break from treatment. I have to work a full time job, I’m a high school teacher and it’s tough but I have to have an income to survive. I’m tired of being tired, exhausted and not physically being able to even make myself a light snack or dinner. I’m over it all I feel I’m going crazy and I want my old life back. I have contacted the NSW cancer council well over 8 months ago numerous times to have some type of support still waiting on a call back. I thought people who are diagnosed and registered as a cancer patients on the registers would be contacted by someone not us chasing them. It’s a long lonely journey and I’m really feeling so many different things right now. Why don’t doctors n specialist in this field listen to the patient. I feel like I’m locked out on what’s happening with everything and couldn’t tell you what their doing or plans for me as I dunno myself. I am tired, stressed and unsure I just want to be the person I once was before cancer befriended me.

https://www.gofundme.com/princesshunni-lee

This is a story that was shared on a Face Book page I run, called Aboriginal Cancer Connections.

 


These are a few of my least favorite things

Julie Andrews sang about her favorite things, and who doesn’t enjoy singing along with her when she does.

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We all know what we like and what we don’t like, but sometimes you reach that point where you have to stop and wonder why things still happen or why people still do the things they do. Why the rain doesn’t come and why do I have to suffer in the heat of an Australian summer.

I am actually going somewhere with this, so stay with me. After I posted about my pre Australia day adventures. I had it posted on the Patient Opinion site. This is a great way to share what is good and bad with medical services and practices in the country. Feed back is important if we are going to make services better.

So with some of the responses I had I was amazed to find many others had felt similar to me, even if they weren’t Aboriginal. I also found out that some services don’t want to change. An inbox I had was about Queensland Cancer Council, they still have on their website “ATSI”. I was dismayed at that because I have spoke to them about this, emailed them and I know that a lot of Aboriginal and Torres Strait Island people with cancer have spoke at forums about this and told the organisation that it is insulting.

We had a struggle to get Federal and State governments to stop using this acronym. I hate it when people refer to us as ATSI people. My way of dealing with this is to call them Non ATSI people, or NATSI (NAZI) for short, it usually shuts them up quick.

I have spoke about Queensland Cancer Council many times and in many forums. While I appreciate the work they do. I don’t like the ATSI and the fact that staff say it. I don’t like that they have no Aboriginal/Torres Strait Island person working for them. I don’t like that they don’t have a reconciliation Action Plan. I don’t like hearing about people who feel they are overlooked because they smoke or are assumed to smoke and drink. I don’t like when you talk down to my people and go on about low socio-economics and how this goes hand in hand with shorter life expectancy.

I don’t like that they overlook my people, but put up there hand for Indigenous funding, but don’t interact with the community. I don’t like that they want from Aboriginal and Torres Strait Islander people, a lot of family history and information about what we go through for research purposes, but don’t really sit down and talk with us and understand that taking this information from us, is taking another part of us. Do they understand that we do agree to do promotional campaigns to help others and that we do it for free is a blessing, not something that you should expect and demand from us, when you pay all the other people involved.

I am disappointed in the service for its lack of ethics and morality. It is the only organisation that many know of to go to, and yet I have so many first hand stories from my people about being fobbed off, assistance being ignored. Did you forget that cancer isn’t racist? Did you forget that cancer doesn’t care for the funding or the lifestyle, the age or the sex?

Did you forget that we are people too and that while we haven’t been users of your services previously doesn’t mean that we won’t be in the future.

 


Is Marco Polo guilty of Cultural Appropriation

Is Marco Polo guilty of Cultural Appropriation? He did go to China, and take noodles, bring them back to Italy, where they were changed and became the pasta that we all love and think of as an institution. We think of pasta as a traditional Italian dish. But it did start as noodles from China.

I was stumped on this question, when it was asked. I weighed up the for and against. I was still stumped. I thought of all the angles. This question was asked of me by a woman who was confused as to what was Cultural Appropriation and Cultural Appreciation. She was trying to get a handle on this question, and it lead her to ask this question.

I asked my daughter what she thought of this and she like me went through so many ideas about it. In the times that Marco Polo did this, we didn’t have the access to the internet, the world didn’t seem so big to those who lived in that time. They had no idea as to what was in other nations let alone that their were other countries.

Pasta is a changed and totally individualised form of noodle, it was changed to suit another nation’s taste. So does this mean that it was appropriating, but appreciating and changing?

Do we remember the Chinese noodles when we eat pasta? Is the overlooking of the Chinese history of this an ignorance of a blinding of views?

Is it any different to Native Americans and horses, we all think of the original Peoples of America with horses, but the horses were not part of the culture originally. Horses came with invaders and to survive the First Nations Peoples learnt to use them and perfect the art form of horsemanship.

Does food not count in Cultural Appropriation? Around the world, the hamburger has a few key ingredients but many other elements change to suit the taste of the people. Think of beetroot, there are those who say an Australian burger has to have beetroot. Other countries don’t do beetroot on the burgers so much.

Californian sushi is a perfect example. A food traditionally served one way, was changed to suit the taste bud of others and now is known everywhere. But is this Cultural Appropriation?

Do we even care about the history of our food? Should we remember the history of our food? Does the average Australian think of the slaves blackbirded to this land to cut cane to make the sugar and the rum? Do the Americans think of the African’s brought into slavery to cut cane and sugar when they put on clothes, make cakes or drink rum?

Is cultural Appropriation, just for the modern era? Is it a way to reclaim and to keep pride in your culture? Or is it like some minds think a racist tool to separate the races?

I think it is great that people are having the conversation about Cultural Appropriation, it is a step in the right direction to further understanding between all the differing Peoples. If you know that something is appropriated and that the Cultural group who lay claim to it that are upset,  you then will slowly find out other things, perhaps wonderful things about those people. If you ask if something is appropriate, you can find out so much more information.

So what do you think, is Marco Polo guilty of Cultural Appropriation?

 

 


Help Dr Adams with research on Indigenous men in cancer treatment

Hello everyone, please see the research study message below from Dr Mick Adams. Also, please pass this message onto your networks, colleagues, family and friends whom you think might be interested in responding to and possibly joining this study. All enquiries in response should be made to Dr Mick Adams, Ph: +61 8 9370 6875; Mobile: +61 409646952 and e-mail: m.adams@ecu.edu.au

Subject: A community-based mixed methods exploration identifying barriers to engaging Indigenous males in cancer treatment and supportive care

I am wondering if you could assist Dr Mick Adams with a cancer research study titled: A community-based mixed methods exploration identifying barriers to engaging Indigenous males in cancer treatment and supportive care.

The research study will investigate ways of improving cancer awareness and outcomes for males with cancer. The information collected will help us to better understand ways of the approaches used, what resources are available and the barriers to access available cancer consultation and treatment processes and support systems.

While this project is aimed at specifically identifying barriers to engaging Indigenous males in cancer treatment, I believe, however, that in order for me to develop a comprehensive understanding regarding issues impacting upon engaging with cancer related services, I would need to investigate the following issues amongst Indigenous and non-Indigenous males:

1.       General perceptions of health and wellbeing including reasons for engagement or lack of engagement with health services generally.

2.       Knowledge and perceptions regarding cancer, attitudes towards participation in screening and/or preventative activities or programs.

3.       Experiences with regard to cancer, incorporating a focus on treatment experiences, including barriers potentially impeding access to treatment

4.       Other experiences pertaining to the cancer journey, including interaction with family members, and access to supportive care services

5.       Recommendations for intervention with regard to improving cancer awareness and outcomes for others within respective Indigenous and non-Indigenous communities.

I am intending (and hoping) to recruit a range of Indigenous and non-Indigenous cancer survivors (varying in age, socio-economic background, location (rural, remote, metropolitan) to participate in focus group discussions and interviews and completion of the attached questionnaire.

I am very much aware that there are instances where men may not want to directly talk to me or about their experiences but  I would be happy (if willing) for them to complete the questionnaire and mail it back to me.

I would be available to come and talk with you and potential participants and would very much appreciate any assistance you are able to provide.

Please do not hesitate to contact me if you require any further information.

Best regards.

Mick

Dr Mick Adams

Senior Research Fellow

Australian Indigenous HealthInfoNet
Building 15, Room 320

Edith Cowan University
2 Bradford Street
Mt Lawley WA 6050

Ph: +61 8 9370 6875; Fax: +61 8 9370 6022

Mobile: +61 409646952


NACCHO #CTG10 News alerts :Why is it so hard to Close the Gap?

NACCHO Aboriginal Health News Alerts

ABC

Well, you know, I think it’s never acceptable if we don’t have a consistent policy approach and consistent funding and ministers who can stay focused and committed.The lack of progress should never be interpreted as a failure by Aboriginal and Torres Strait Islander people. It’s a failure of bureaucracy and a failure of the politicians to keep an even course and to keep the funding and the policy direction consistent.

Prof. Tom Calma discussing where things have gone wrong (and occasionally right) in the attempt to close the gap between indigenous and white Australians.

It is imperative the government provides appropriate funding for the implementation plan in the 2016 budget. Specifically, there needs to be an overall increase in resources directed towards Aboriginal and Torres Strait Islander health — in proportion to population size, service need and demand. Thisvital, given the National Partnership Agreement on…

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Your Story and then some

I had made it official, and put out the call for your story. Thank you, and please keep them coming. Here are a few, I have taken out names and locations, anything that could identify the writer.

 

I had blood every time I went to the toilet, I was too shame to talk about it. I didn’t want to say anything in case there was something wrong with me. I delayed as long as possible. I was scared about what people would say, peeing blood isn’t right and I didn’t think it was a cancer. I was taken to the local base hospital and they took me to the nearest big hospital. I had to ride in an ambulance for two hours. They ran tests I was told that I had bladder cancer, it was  transitional cell carcinoma. That was after spending a week in hospital while they did lots of tests, scans and blood samples.  I was told that it is a cancer that spreads and that I shouldn’t have waited to get medical treatment. I was sent to the capital city and had some surgery, then the treatment started. I didn’t want to be there. I was so far away from my friends and family. I was in the hospital for months. I had no friends and no one to talk with. The nurses were wonderful, they would stop and talk to me, some even spent time with me when they had knocked off work. My family were too far to come. I had a few week end visits, but its not the same. I would have preferred to be closer to home so I could see everyone. I was lonely, but I understood everyone couldn’t take time off from work to come so far to be with me. I wanted to be with people I knew and to see things I recognised. One of the nurses at the hospital actually lent me her lap top. This was so special to me, she trusted me and liked me and understood how lonely I was. I used that lap top to keep up with family. I lived on facebook and my emails were always full. I learnt how to play online games and became a champion at scrabble. One day another Koorie was in the hospital, that was exciting, we talked about everything we could. She was from the city and when she went home she would come up and visit me. This helped me to not feel so lonely. I had two friends then and that made a big difference to how I felt. I think I actually started to get better then. I wasn’t alone in a strange place. The medical staff from the ambulance up to the final hospital were so good and friendly. I felt like I was in good hands. I might not have understood everything that was going on, but everyone was so nice and friendly. I did learn medical terms and start to understand them my friend the nurse would come with me to treatment and be there when the doctor talked to me, she explained to me what I didn’t know. I am now at home again. I was so happy to be leaving the hospital, but I was also sad at leaving the people who became my family there. I returned the lap top but not my friendship. I still keep in touch with them.


NACCHO #CTG10 Press Release:Ongoing commitment required to close the gap

Today the Prime Minister released the Close The Gap Report. I could and probably will write about it, but I want to talk to others about the health impact, the patients! But I will share this and it has a link to it

NACCHO Aboriginal Health News Alerts

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“It’s good that there have been some positive gains already made in areas like child and maternal health.

“We are still a long way from Aboriginal and Torres Strait Islander people achieving the same health outcomes as other Australians,”

“That’s why it’s absolutely imperative that we continue to see commitments to programs and health care models that work – programs created by Aboriginal people, for Aboriginal people which involve them in their own health and support them to have brighter futures

NACCHO Chairperson, Matthew Cooke

Picture above Prime Minister Malcolm Turnball at the Close the Gap launch Parliament House : Photo Colin Cowell

The expansion of Aboriginal controlled primary health services and programs, the reduction of racism in the health system and investment in the Aboriginal health implementation plan are all key to improving the health outcomes of Aboriginal people now and for future generations.

NACCHO Chairperson, Matthew Cooke, marking…

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Shrove Tuesday

Today is Shrove Tuesday, which for most people means nothing but a chance to eat pancakes for free (or pay for them as a fundraiser), have stupid pancake flipping competitions and post pictures of the afore mentioned and just get on with your day.

To some it is the day to start thinking about Ash Wednesday (tomorrow) and what you are going to give up for Lent. Now being the Catholic that I am, of course I am going to give up something, and this year I have decided to give up cancer. Yep that’s right, I am giving up the horrible tumour growing in my brain. No more giving up swearing, smoking, chocolates, meat or anything else. I am going to give it up.

Now before you think that I have finally succumbed to the tumour, I think it makes perfect sense. We give up things to show repentance of our sins and self-denial to show our love of God.

Well I am willing to give up this and all the associated medical problems and the expense they cause in the name of God. I will forgo paying out for medications and will donate to the church. I will go without the pain and the sickness. I am ready to give this up.

So tonight when I have my last meal of red meat for the next forty days, I will ask God to accept this, and to understand I am not a Saint, I cannot keep on taking the pain and suffering gladly and that my faith waivers quite often. I hope that he will do it, I hope that he has time to look down at me, in between taking care of all the refugees, the victims of war, the sufferers of disease and man’s hate. Maybe he can get to me after he has taken care of all the babies, all the people with disabilities, all the aged, all those who don’t have anything, those who are lonely, those who are hurting. Those who are in genuine need of his intervention.

 

Lent (Latin: Quadragesima – English: Fortieth) is a solemn religious observance in the liturgical calendar of manyChristian denominations that begins on Ash Wednesday and covers a period of approximately six weeks beforeEaster Sunday. The traditional purpose of Lent is the preparation of the believer through prayer, penance,repentance of sins, almsgiving, atonement and self-denial. This event, along with its pious customs, is observed by Christians in the Anglican, Calvinist, Lutheran, Methodist, Roman Catholic and Eastern Orthodox traditions.[1][2][3]Today, some Anabaptist and evangelical churches also observe the Lenten season.

 

P.S. Dear God, please don’t strike me with a lightening bolt for being flippant.


Aboriginal cancer is different

Aboriginal cancer is different, this is something that I and others say. Let me explain what is meant by this, we are not demeaning any person’s struggle with cancer. Every person has a different experience with their battle with cancer. Every body has different reactions and responses to what is happening to them.

When it comes to Aboriginal people and Torres Strait Island people, we have a completely different experience and understanding of the health system. We have historically been used to not being treated the same as other people. We are also used to the medical profession doing what it wants, without explaining to us what is happening.

Put that with the english as  a second language, and lower educational standards because of this, you have a potent cocktail of fear.

To help with Aboriginal and Torres Strait Island people come out of the other end of the tunnel of cancer, we need to have a strong voice. We need people to stand up and be listened to. We need to have Cancer organisations include us. We need the hospitals to welcome us.

Many people like myself have asked hospitals if we can volunteer to be there when our mob come in for treatment. To be there to help explain the medications, treatments etc. in a form that we can understand.

The hospitals and the medical profession need to know and understand our cultural requirements. I have known many doctors and nurses who have done cultural awareness training, but when it comes to using that in the hospitals, they don’t. They will tell you that they don’t have time. That they system isn’t set up for it. If that’s so we need to change the system.

We need to have Aboriginal people in the oncology units, working or volunteering to open the door, ease the path. When you have spent your whole life being outnumbered and being the chocolate chip in the glass of milk. You do need to have another familiar face to make you feel at ease. Call it safety in numbers if you like, but when you are ill and everyone around you doesn’t speak the same, look the same or understand your cultural beliefs, it makes you not want to do anything. You get overwhelmed and you lose your voice. You feel disheartened, when you have a simple request that the powers that be do not understand.

We are often thought of as prudish or strange when we talk about how the sexes cannot be together with certain things. How we address people as Aunty or Uncle is queried and then you have to explain that you don’t actually have so many familial nieces and nephews, that it’s a title of respect. My personal favorite, is when you have to explain that, no you don’t know every Aboriginal Person in Perth, let alone the rest of the country.

We don’t all smoke, drink, take drugs or do whatever it is that was on the local current affairs program. Don’t assume that we do. Don’t look or treat us like statistics or as some primitive dying race. These are things that many Aboriginal people have dealt with every day and it’s insufferable when you are ill to face these pre-conceived ideas.

These are minor things, but when you are sick and when you have spent your whole life being different to the “norm” it becomes a big deal. A little understanding or our histories, a little knowledge of the legislation’s that ruled over us. Learning about this is no different to learning about any culture. We have translators and people that come in to the hospital to help those who come from distant lands. We don’t have that for the first people’s of this country. Why do we respect others before my people?


How to not get that job

I guess I am a bit on the slow side, but I didn’t realise that you shouldn’t say some things in a job interview. I am proud of my involvement and becoming a NICan ambassador,  I am an Indigenous cancer ambassador and I see it as a very important and wonderful role. I enjoy, hearing other people’s stories, and helping others as they go through the house of horrors that is cancer and its  treatment.

But I guess some things you need to keep to yourself. I have been asked in job interviews about this and I have no problem, telling them that I have a brain tumour. Sometimes you get strange looks, I have been asked by panel members questions that never make me raise an eyebrow. The usual stuff like have I beaten it, etc.

I know that it can be the death knell of a job, that is how I lost my job, when the place that employed me, disregarded my doctors, make me see a doctor of their choosing and then they focused on terminal, and thus I was released like a dove at a wedding.

But how can the disabled and people suffering from illness function when they can’t get a job. I found out that I shouldn’t talk about my cancer, just brush off the spinal injuries if I want to get a job. Now what I have makes no difference to if I am capable of doing the job.

I honestly do not know how someone who has a visible disability copes with this. They deal with blatant bigotry on a daily basis and continue on strong with dignity. So many jobs out there do not depend on your physical ability, but one look and you are out the door quick smart.

It seems that we just cannot deal with some one who is different and who doesn’t fit the idea of the norm, gets shunted to the side and ignored. Why are we wasting so much talent and wisdom? Why are we not utilising The disabled, chronically ill? If they want to work and have their own clearance if needed give them the job, don’t use this as a way to not employ someone.