Monthly Archives: September 2015

Am I not pretty enough for you?

I have had a response from a commercial network show about my promotion of cancer. Now I was excited when I was phone by a lady stating she was from a certain show. She liked what was happening, but wanted to make the story more personal.

We chatted for a while I told her everything I have been through and how I am still holding on. I told her about the money problems. The problems when Chemo doesn’t work and your body reacts to it and the drama of children going through this with me.

I was getting really excited by now, thinking that yes I have a victory some one wants to listen and this will help with my pushing for more to be done with cancer for Aboriginal people. We then talked about the rate of cancer in Indigenous people and the lack of help and support and that my people don’t always understand the system and are intimidated by doctors and that I want to do more and about the advocacy that we are trying to set up.

Then my world came crashing down, she told me that really what would work would be a story about me, and how I want to look good again after everything I have been through. That the other stuff can be added in to pad out the story, but it would be a really good make over story that makes people feel good and gives hope.

Well I was thinking hell do I look that bad, that even over the phone this woman can tell I need a make over? I tried to explain again what I am doing. Yep I would like help, but I also want to help others and if I can help someone going through what I have been through, or stop them having to go through it I am happy.

But I missed the point. The story would revolve around me, and making me look better. Well I guess I could use a tummy tuck, after losing all that weight from the steriods. Yep the face is looking a bit worn, possibly a bit of botox might help. The hair needs a hair cut, but I like the grey hairs I have now so I wouldn’t want them to change the colour and anyway, I couldn’t afford the re-dying.

But what has the world of current affairs and news come to? when a television show only wants to do something light and fluffy. What happened to the days of hard nosed journalists finding good stories. Now these shows are all disease of the month, bogans speeding, shopping prices, entertainment news and light and fluffy stuff.

I am really not sure what to do, do I do the story and hope I can get my message out and enjoy the pamper treatment or do I stick to my guns and keep plodding away, trying to spread my message.

I will let you know of my decision.

Thank you


Cancer equals poor

I have spent years struggling to make ends meet. It’s hard to pay the bills and to keep up with the medical expenses. I have been blessed in that I have had some wonderful people in my life do fundraising. I have also had wonderful people donate lots of food to us. A friend regularly gives us donations of food from her church. Ironically, my own church which I am an active member only gives food hampers for about three months.

I have been lucky to keep my head afloat, trust me it’s not easy. I have also made jewelry to sell, set up at suitcase sales and sold odds and sods and donations of clothing. I did have a job, I then took a year off and was helped by my wonderful friends and family. But when I returned to work I was shown out the door rather quickly, the excuse being that I have a terminal cancer. Okay so that’s their prerogative, but it leaves me up the proverbial. I have been lucky to pick up bits and pieces of work here and there, but alas it’s not been enough.

I have the wolves at my door and I am at wit’s end as to how do I pay the bills, the rent, electricity, internet and the kids sports, I also have to keep the car running to be able to get to appointments, take the kids places and go to classes. I am doing a diploma in business and business management to help me be a bit more employable.

Yes I need to move into cheaper accommodation, I had my name down for housing commission or rather community housing, when I was at my worst, but when I returned to work I was earning two dollars over so I was dropped from the list. I have put my name down again, but I have been told I will be waiting for years. If  I am waiting for years, I won’t need a house big enough for my kids. But also I need a place that will be big enough to take a walker or eventually a wheelchair. I would have thought that this would have been in the planning of these homes. I guess I thought it would be standard to make sure the housing is disabled suitable. But then what can I say, greater minds than mine decide these things.

But back to the problem how do I get the money I need. I have had suggestions of crowd funding, well this is good, but I know myself I am wary of this as some of them have turned out to be scams. Go public like some people and then wait for the donations to come in? This I can’t do, I am happy to fund-raise for cancer, but find it hard to do it for myself. I have a jersey that I was given by the Institute of Urban Indigenous Health. I really thank those ladies and gentlemen. They have given things to be used for fund-raising and I still have one item left. I guess I better get out there and sell tickets to help me make some money before I get evicted.

You might think that I am being a bit melodramatic about this, but I am not. It is a never-ending battle. I have seen others with cancer lose just about everything as they pay for their medications, specialist visits etc. I don’t live high I live very low, using a lot of home brand, making most things instead of buying them. I use the public health system, but sometimes when there is a problem, I can’t afford to wait the long period and have to pay to see someone. My medications are the main problem, they are no PBS so I have to pay huge amounts for them, I do have a problem with this. Why should a drug be cleared to go on the PBS for some but the same drug for use on other people isn’t covered? it really makes me angry. But I will fill you in on that at another date.

So if you have any ideas on how I can make ends meet or make money please inbox me. I really really would appreciate it.

Thank you.


Let’s do something about Cancer together

I am still trying to get people to talk about better cancer health outcomes for Aboriginal and Torres Strait Islander people. While cancer doesn’t discriminate the health care does. I have been involved with Menzies Institute and they are actually listening to Aboriginal and Torres Strait Islander people about our issues.

Prevention is important, but sometimes you just cannot do anything preventative to stop cancer. We need to be doing more to help my people when we are going on our journey through the health system and dealing with cancer. The government on both levels needs to listen to our stories and listen to what we have to say about how this journey can be easier.

As I have said before we need our people in the oncology wards in professional roles to help. We need education of our Cultural needs. We need the understanding of how our families and Community function.

We need more people to spread the word to talk in the Community about cancer and how it works and what happens through the journey. We need an organisation to help us to have funding to pass on to families to help with paying the bills, the cost of accommodation and travel for those who have come from remote and regional areas. We need that assistance also for those who live around major centres but have trouble with transport. Out in the area that I live we have the Bay Islands, so if you live on the island and are dependent on public transport you are looking at least two changes of bus, over an hour travel and if you have treatment late in the day you could miss your barge or ferry over to your home. What happens then? you are stuck and have to depend on family or friends. It’s the same in many areas although it might not be islands it could be that you are travelling from the other side of Ipswich or Redcliffe, you have a long journey and when you are doing this on public transport you just feel so much worse (if that’s at all possible,cause you usually feel like crap after treatment)

There are not enough services that can come into the home to help and as one person told me when they asked an organisation to help with their house work. She was told “Aren’t their Aboriginal organisations you can use” So this sets us apart yet again it’s almost like the bad old days of segregation. It’s  a case of you won’t help us unless you get specific government funding for Aboriginal and Torres Strait Islander people. We don’t have enough services and surely if you get funded you should help everyone?

Part of this advocacy is about getting the services for our people, showing them how to access them, knowing what services are out there. I have said before and I need to keep repeating it, have some funding to help with the bills, those everyday problems that most of my people find to be a huge hurdle. Now before you start thinking I am talking about hand outs. I am talking about the fact that we have high unemployment numbers and we have lower wages. Put this together with the medical costs and it’s a very big unspoken problem. The Close The Gap incentive is great it helps with prescription drugs, but it only helps with those on the PBS. A lot of cancer drugs are not on the PBS so they cost a fortune. We do not have the access to the clinical trials, because these usually go to those who see private specialists. We on the most do not have the money for them, and if we do well we are paying a high amount for very little medicare rebate. We tend to on general go through the public health system. We have to wait for our names to come up on the list and if you need surgery or appointments urgently, well again it boils down to the money, we just don’t have it.

We have to face cancer within our Communities, which on the whole don’t talk about cancer. Cancer is seen as a one way ticket to the coffin. Yes that’s our issue, but it’s a cultural issue that has to be slowly overcome. That is part of why I am always talking about cancer. I need my people to get out their and help each other. I need my people to look at preventative health. But I need the medical profession and the governments to look out the health outcomes. We have the lowest diagnosis rates but the highest death rates. This shows something is going wrong somewhere.

I need everyone who reads this to respond, to like, to give me their comments or their stories. I need you to help me fight this battle.

Thank you

 


The results are in

Well it’s been a fun few weeks, between being ill with a viral infection and awaiting what was going to happen with my jaw. So the result is I have a cancer, but luckily it’s benign. That was great I was happy, then the doctor had to keep talking. He wants me to get it removed, because this kind of cancer will become malignant within about 5-10 years. That’s better odds than my brain tumour. But I told him no, I am not going to get it removed.

I guess you would be wondering why I won’t. Well the simple reason being that with the treatment I have had, it really knocked me around. I had cushings from the medications and Lupus. I had due to weakened bones fractures in my spine and hips with the prognosis of that being I would never walk again (but I am walking). I had a blood clot that caused a pulmonary embolism. I spent nearly a year in hospital with this. Now I am getting back to myself again. Getting healthy and regaining my strength and confidence. I am not going to put my health at risk again.

I think that if I deal with this in a few years, my body will be able to stand up to the treatment, which it honestly wouldn’t at the moment. This decision lead to the Doctor dare I say harassing me and specialist also, telling me that I should have it removed and get some therapy at the same time, at this point they are not sure if it would be Chemo or Radiotherapy. I had to stand my ground. I really felt overwhelmed with the constant non acceptance of my answer, it’s not their life, but mine. They even agreed with me that doing this would cause a huge burden on my body, yet they insisted and insisted. Constant calls for me to come in and talk. What happened to my right to decide on what happens to my body.

No medical professional should force someone into doing something they don’t want to do and that they have an option on. I went through hell previously with three rounds of Chemo that made me so ill. Years of being on strong steroids for the brain tumour that caused me to double my body weight. I followed what the doctors said, yet they were the ones who missed the blood clot in my leg, telling me that it was water retention. They missed all the indicators as to my deteriorating health caused by the medications and then the chemo.

I am not making a blind decision, I am making an informed decision, knowing what the state of my body is and ironically they agreed that it would take a very big toll on my body, but yet they still want me to have treatment. If it was a case of just cutting out the bone, I would do it. But having to do other treatment as well is not what I am up to. My right as a patient and the boss of my own body should be paramount with the medical profession. When anybody makes an informed decision it should be respected and not overlooked by a doctor who thinks they know better than you do.

After all this, when I had to get the area checked, well they found out they had actually fractured three teeth around the area. Now They removed one tooth, which I was grateful for, I don’t want to go around with big holes in my mouth. I had enough of my teeth chipping and fracturing from the chemo. So now I am going to have three extra teeth removed because the fractures are too close to the gum line and will if not removed start to fall off leaving stumps in the gums. Now I would have liked them to say well we will give you four false teeth and do that screw in the gum teeth, but off course not. I will have to come up with the money to get some teeth to fill in the gaps. Not really fair that, but even going in the public health system they will not replace those teeth unless they take out all my teeth and I will have false teeth, that is not a step I am ready for. I am glad that at 50 I still have most of my teeth. I don’t want to wake up in the morning with my teeth smiling at me from a glass at my bedside. But what’s a girl to do.

So signing off, the future gummy bear.

Thank you