Monthly Archives: March 2015

The Cancer Stories From You

Thank you to everybody who read the stories from Cancer survivors. Why do I call them survivors because they have been to hell and back, even if they weren’t the one inflicted with this disease.

I am overwhelmed with the stories that you the readers have sent into me. Instead of just allowing them to be comments I am going to post them, I hope you don’t mind. I do this because this is what a chain reaction is like, you have seen similarities with those who have been published. Some of you raise more questions. These need to be answered.

The most overwhelming thing about it all is the lack of understanding in what families go through. No idea where to turn no idea where to get help. This is something that the medical profession and the Cancer Council and other bodies need to understand. It’s not just the illness you are battling. It’s the bills, the family, the keeping things going and sane. It’s the struggle to get the kids some normality in their lives. The picking up the pieces when you get through it, or when you just have to live with it. It’s the burden on the family left behind without answers.

So before I post the next lot of posts I give you the chance to inbox me to tell me your stories. If you already have and don’t want me to post it let me know. I will respect your wishes.

Thank you again for the overwhelming response.

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NACCHO $ funding update : #IAS Indigenous Advancement Strategy funding list revealed

NACCHO Aboriginal Health News Alerts

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“Large sporting umbrella bodies including Swimming Australia, Athletics Australia, the Australian Rugby Union and the Australian Football League have all received indigenous funds. A host of universities around the nation are also on the list.

The inclusion of major organisations, governments, shire councils and large well-funded non-government organisations has sparked anger from Aboriginal community-controlled organisations, with many driven to the wall by the new funding regime and forced to lay off staff or close their doors.”

INDIGENOUS Affairs minister Nigel Scullion has bowed to pressure to provide transparency under the contentious Indigenous Advancement Strategy, today releasing a full list of organisations that have received grant funding.

But details of the amounts of the grants have not yet been released, with the Federal government still locked in negotations with organisations.

DOWNLOAD FULL LIST HERE 2014 IAS Funding List

The tendering process under…

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The final story

A couple of years ago, my daughter had what was just put down as a boil on her face. It was treated but didn’t seem to go away. It turned out she had Orofacial cancer. I had no idea what that meant she was a kid why did God give her this cancer.

We suddenly found ourselves alone no one came near us, she was treated bad, because people would look at her in disgust and our mob, who we reckon are close were just as bad. You would think they could catch it from her.

We tried to fundraise money but that failed as we had no idea how to do it so gave it up. We struggled for money to pay bills and to go down to Brisbane all the time. Every single test needed to be done in Brisbane. I had nothing. Only her.

We had to do a lot of travel down to Brisbane for treatment and I couldn’t afford to stay at places and those places for families still cost you. I was couch surfing on peoples beds and even strangers beds.

Then it got worse, the department came in. I had in the past used drugs but now that became an issue my daughter was taken away from me. She was given into the care of a family member who managed to get help with a big company to get a new washing machine and dryer. But I was still on the outside.

Canteen took my girl on some trips. She had a about five years for surgeries and treatments to get rid of this cancer and she missed a lot of school. She was able to catch up on school with the help of the hospital.

But the big problem was she wanted to be with her mum, and her mum wanted to be with her. But we couldn’t she was with a relative who wasn’t our mob. She kept her away from a lot of her family her other sisters and brothers who were older.

I tried to get the department to give me back my daughter, but because of my old record it was hopeless, why take my daughter away, half way through everything. When I was the one who was there from the start. Because of this I found I got no help from anyone. I wanted to set up a home for her but no one came forward to help.

She is now an older teenager still has to go to the hospital al lot but now she is with me, she gets a disability pension and I get a carers pension. We are still struggling to pay the bills and I think we will be like this for a very long time. We are on a waiting list for housing and we get some food hampers from the local church, but nothing else.


Journeys and stories, again

Bowel Cancer is in my family. My dad died 12 years ago with it. We were shocked and we all had to face the fact that this hard working tough old man was going to leave us. What we weren’t prepared for is the legacy of bowel cancer.

Nobody said at the time it could be genetic and that us kids should have some kind of check up. Now My brother has bowel cancer and a doctor asked about his medical history and when he said that my dad died of bowel cancer the doctor asked him if he was checked and said there are some tests that should be done to see if the children of my dad had the gene.

Now we are all waiting appointments at the hospital to get these tests. Its too late for my brother he has it and has had part of his bowel removed. We have to get these tests and get our kids all the nieces and nephews to get them. We don’t know if its going to cost us or not.

I hate having to watch my brother die like my dad. If they knew this stuff about tests they should have made us do them or told us about them.

Do they keep these tests hidden so that its cheaper for the health system? How much is a life worth? What is the point to have all this research if its not being used to help people.

 


Journeys and stories, I still am sharing them

I’m Taylor Bond, I had to nurse my mum when she had cancer. She was fine, and then she came home from the doctors saying she had cancer. I thought it would be fine, people survive this all the time, but my mum didn’t they say it was too late and if she had of been diagnosed earlier she would have survived.

I had to sit by and watch my mum get sicker I had to help take care of her, she was shame about me helping her to shower and go to the toilet. She said it wasn’t a kid place to be doing that for her mum. I know it was a big shame for her to have me do this, it took away her privacy. But we had no other option. Some kind of nurses were going to come in and help, but that didn’t happen, even though we filled out forms and the hospital told us they would show up, they never did.

As my mum got worse she couldn’t be left alone, so some one always had to be there with her. She was on really strong medication to take the pain away and some times she just didn’t know who we were or what we were doing there. She would get upset and start yelling at us. Some times she threw things at us. But we knew that that wasn’t mum that was the drugs.

We would tell the doctors when we went to the hospital all the time telling them the medication wasn’t right, but they kept telling us it was and it was about pain management until she died.

They wanted to put her in a hospital to die, and they said this would be best for everyone, as she could get the help she needed and we wouldn’t be watching her all the time. I don’t think they understood that we wanted her with us, we didn’t want her to die with strangers. We put her into a place for respite, but they went through everything and somethings they wouldn’t let her keep. She had some stuff from when she was a kid. She had a stone and it went everywhere with her, she was it was spirit stuff. We were never allowed to touch it. But these people in the respite just picked it up and put it into a bag of things to take home. This really upset my mum. She went off her head at them for touching it. They were all like, its only a stone.. They didn’t understand it and why it meant so much to mum. Well the stone got lost and mum went not long after it. I know that losing her stone was part of her going quick. Because she always held onto it, especially when she was in bad pain. It was part of her and her upbringing. It is part of culture and they didn’t care enough to find out.

 


Continuing

I am telling my story to Colleen for her to write for me. I didn’t know that anybody would want to hear what I had to say, but I was convinced that me telling it will help.

I lost my wife to breast cancer 10 years ago. We have four children at the time the youngest was 1. My wife was full of life, she was involved in the kid’s sports, football and netball. She was known in the Community as she worked at one of the local schools.

When she went to the doctor with a lump on her breast the first thought was that it was a blocked duct as she had breast fed all the kids. She went into the hospital for a biopsy and they found that it was a cancerous tumour.

She was treated with medications while we waited for her turn to get an operation. At first they were talking about removing the lump as time went by and we waited and waited the talk became losing the breast.

This caused us a lot of problems which we didn’t know how to talk about or who to talk about. She had the breast cancer mob come talk to her about options about how she should feel but nothing to help the rest of us as to how we feel.

She had her breast removed then had radical chemo therapy. She was lucky her work place helped out with a lot of things and the football club. They ran fund raisers to help us and we needed it. I had to take time off work to care for her. It’s a shame that the bills don’t stop when you can’t afford them.

After a few months she was starting to get better and then went back to work part time. We were overwhelmed with the support we got.

Then we found out she needed more surgery she the cancer was still there she had to get her glands and her other breast removed. The kids seemed to handle it well. They still had school and sports. The sports club had set up a car pool so the kids could always be picked up. This I am happy for it gave them some normalcy in their lives.

In hindsight I would have loved any opportunity for my kids to get counselling and help as they seemed fine on the top and that was all I noticed. I was too busy taking care of their mother. Our Eldest daughter was a problem she just seemed to always argue and pick on her mother. At the time I came down hard on her. Now I realise it was her way of coping. She had always had a strong mother who was always there, no suddenly she had a sick woman who could die in the house.

Nobody could help me or point me in the right direction. There is no manual on how to deal with cancer. But I wish when someone goes in that there is somebody who can tell you the different services available and how you can pay the bills. How do you deal with it yourself? How do you help your kids? How do you help you wife, husband who ever, how do you talk to them to help them?

My wife had more surgery and more radical treatment. She became weaker and weaker. I had to take a leave without pay so I could be at home with her, she couldn’t shower or go to the toilet by herself. She only got sickness benefits I was unable to get a carers pension.

The bills kept piling up, we talked about selling the house to cover the bills, and she wouldn’t let me. She said this was the kid’s home and it’s going to remain that way. She was practical too in pointing out if I sold up I would be paying rent and might never be able to own a home again. And for her that was important, she wanted them to always have somewhere safe, which she didn’t have growing up.

She was sick and this continued for about two years. The help and assistance slowly started to dry up. People think surely she has beaten it or that the treatments should have worked and that everything is all hunky dory. But it wasn’t it was getting worse the bills kept coming we chose to not take the kids out of their sports and any activity that helps them feel normal.

But the kitchen cupboards were always just about empty, no luxuries, as some of the things we had to buy for the wife cost a lot. She couldn’t use soap so we had to buy expensive stuff. But that was the sacrifice we made.

I would like it if an organisation was there to help pay the bills, give food hampers. What I mean with the bills is to help with the medical costs. Let’s not waste money on footballers put that money into a fund for desperate families with high medical bills, so that they can get some help.

Ronald McDonald did nothing for me and I used to watch on the TV families who had home make overs, or holidays. We didn’t get that.

I guess I sound angry but I’m not anymore. My wife died. The kids and I had to keep on but I wouldn’t want any family to go through the struggle and burden we went through. It’s enough to break up a family and we had no help. No one to help us understand. Someone putting their arm around your shoulder at the hospital is nothing, I needed more I needed to understand how this worked or how that would operate. But I was left out of the loop. I know I couldn’t change the outcome but I would have been better informed.

Now my eldest is being told that she and her sisters should have been checked for the gene for some kind of breast cancer. Why is she being told this now that she is in her twenties, married and trying for kids? Shouldn’t someone have told us years ago? Now she is being told that she could pass the gene down to her children. That’s something you don’t need. Something that should have been spoken of beforehand so that she would have known in advance. So the wheel continues to turn and she is talking about doing an Angelina Jolie. What a life to pass on to your kids.

 


Cancer shouldn’t be shame

I don’t want to talk about this but I have been convinced to talk about it

I had prostate cancer, who wants to talk about that. Its big shame job. I don’t want to talk about it but my wife told me I had to tell Colleen.

I ddn’t want to go for the tests they talk about putting a finger up your bum. But my wife made me go get a check, she said its not different to what she does when she gets women’s stuff done, you know down there and when they get their susu checked.

I went to the doctor and then he called me back and said to bring someone with me. I knew that meant something was wrong. So from what I can remember from the doctor and then the specialist was that it was too far and a I had to get a radical prostatectomy. What does that mean, it meant nothing to me all I saw was my manhood was gone.

Who do you talk to about this? You can’t talk to your mates about it, you can’t talk to the wife or kids about it. They told me to get counselling, but the counselling didn’t seem to work. I would talk about bush tucker and medicines and they would just ignore it or say, don’t use that use what the doctor says. When I talk about my culture and I just wanted to go bush, they wouldn’t let me. I know now that they didn’t understand my need they didn’t understand how we think.

But this left me lost I was lost in the white mans way and no one there to talk to no one who understood what was happening to me and how this affected me.

My fight I did alone, I spoke to some old fellas but didn’t tell them what kind of cancer I had. They gave me the support in a way, they just kept telling me to hold on and to stick around for my family. So I did and I am still here, but I want someone there in the hospitals to talk our language, to talk our way to be there every step of the way to help us find the services. I had to get the kids to take me to appointments or my wife we didn’t know about the community transport stuff. We didn’t know what cancer council does except for send me constant letters wanting money or bequests. This I don’t understand they didn’t do anything for me. Maybe I am ungrateful the money goes to the research but what about the poor broke bastard trying to make ends meet