Author Archives: proudblacksista

About proudblacksista

An Aboriginal woman. mother of 4 diagnosed with an inoperable brain tumour 7 years ago.I want to share my story to help others. I am working to help other Aboriginal people face the battles of Cancer. Email me with your stories or concerns at aboriginalcancer.com

Story of Gran

Reader Story

 

When this happened, it wasn’t a cancer story, it was a racist story. My sister rang me to come up to the hospital, our gran had fallen and was rushed there. I found them in the emergency and my gran was in pain. She was hurting and she had a suspected broken hip. I didn’t want to see her in pain and I tried to get the attention of one of the people in surgical scrubs, I had no idea who was a nurse, doctor or wardsman. I caught someones eye and he came over I said could my gran get something for the pain. He looked at her and looked, went back to the station and found her file came back over and looked at her again. He said she would have to wait until they had her in a cubicle so they could assess her. I asked my sister how long they had been waiting. She gauged it at about an hour, I asked this man how much longer would my gran have to wait, since she has been waiting a bit. He called over a woman who said that it could be a while as it was busy. I asked her if my gran could have something for the pain. She looked at the file, looked at gran and told us to just wait a minute, she found the ambos who brought nan in and asked if they had given her anything and what the situation was. They said they hadn’t given her anything and that she had a suspected broken hip. I was starting to get flustered and loudly asked why no one had given an old woman with a broken hip any help for her pain? Why was she still on the ambulance gurney?  Funny that my raising my voice changed things, another person came over, it was a regular little party around my in pain gran. This man, looked at gran and asked if she was

auntie _ _ _ _ . Yes she is. He said I know her she comes in the hospital and does those Aboriginal days. A cubicle was found, gran was given a whistle and send off for x-rays and she had a broken hip and she had something stronger for her pain. If she wasn’t known how much longer would she have waited? We found out while she was in hospital she had cancer, the break showed it up. She goes in and out of the hospital and always checks on Dr _ _ _  he makes sure she is treated good.


Brave woman, fighting too many battles

A shared story…

Year 2009 End of 2008 School Holiday’s..

  1. We were on a bus heading to the movie’s at South bank . The bus driver had trouble stopping and put his foot on the brake and when it happen my arm for some reason hit my breast I felt a lump quiet big actually and all day long I kept thinking about it so when I got home I check but couldn’t find it, The next day I thought I go to a doctor and have it check I was told not to worry cause I had a breast check six months before but when I told the principle about how big it felt she got the school child support officer to take me over to the hospital and have it check yea I went through the testing and needles and ultrasounds and told to go home and the next morning way before 7 am my doctor rings Dr …. goes …. you better come and see me it’s not good news, I knew in my own heart that I had the breast cancer and knowing I felt the size.
  2. So of I went to see him and the arrangements were made to see the Specialist  and I was put in the hospital instantly and had it cut out taking most of the breast and the breast cancer was on the back wall the doctor said it was unusual for that to come forward but I was lucky for it to come out that day I felt it. Three weeks later I started my first course of treatment of chemo and it was so hard the next day I couldn’t move I felt so sick I lost my hair with in that week and took a taxi to the hospital they looked at the dose and said they needed to do a heart check yea it wasn’t meant to be they had to change the chemo treatment as they said if I had stayed on it I go out in a bag sad part my son was there crying non stop and when he started I started.
  3. So I stayed in there for a few day’s and came home feeling a little better and thought how am I going to survive I’m 52 and got two boys 12 and 9 years of age that needed me will this chemo work or will it get the better of me I had to stop and not think of what I was going through  and work to educated my self to get in the work force when the treatment was finished. Life was hard not knowing and I had a lot going on that got the better of me and it to had to be dealt with my 9 year old who was removed from a sporting club because the coach didn’t like aboriginals no one stood up for my son and he was told to leave, that the club took the coach’s advise to remove the child my son didn’t fight nor did he have any issues the only thing he wanted was to take the field he was kick out the day I was told I had breast cancer so yea it was all to much with no support for him and the feeling of not having a friend to stand by me to get him back in the gates to play footy every one turn there backs on us when it came to racism’s in a sporting club and no one wanted there kids kicked out if they stood by us so we had to take the shit and step aside and allow them to bully my child because  he was aboriginal .
  4. Any way I went through every three weeks of treatment of chemo and took on doing Certificate 111 in Teacher Aid and Done a Certificate in Tenancy Advice and Certificate 111 in Business Administration . I really tried to improved on learning but it wasn’t meant to be because on the last cause of chemo I had lost the feelings in my fingers and went home from the hospital and tried to light the gas stove but it wasn’t lighting I was actually lighting my fingers and never felt it. Four days later I woke up crying in  pain. And of all days it was NADOIC in ……… park and no one was around that I could get in contact with so I rung the principle at my boys school and she arrange for a worker from school to race me into hospital.
  5. I was taken straight upstairs and had fingers amputated and 3 months of having a machine to keep my fingers alive and fingers sewed together than taken back up stairs for them to cut my fingers apart and also go through 26 days of radiation .
  6. I thought things were coming together I just got the pay out from …… and my boys and I had done my house out with all new furniture and the Christmas tree was up  and presents under it I was just so excited and looking forwards to Christmas. But life wasn’t meant to be while I was in the hospital someone broke into my house they destroyed it taking the presents and pouring all my food out they ripped the new lounges took all the new TV’S and ran sack my house leaving us with nothing my boys and I spent Christmas with out any thing it tore me apart and all I kept saying was why me.
  7. My sister in law and I took 3 days cleaning it up and having to pay a skip to take away the things that were destroyed I have never forgot it and neither have my boys my 12 year old had to learn to budget my money and to shop for the things we needed and the youngest learnt to mow the yard and I learnt to be a stronger person through all the things that tested me. We weren’t insured for any thing and life was shit to think of all I had done with the redress money and I didn’t end up owing any thing .
  8. My sister in law said don’t think what you have lost think of whats ahead if you don’t move forwards life will drag you down sad part she was right. And out of the chemo my fingers were left deform and I have little use of my hand I can’t write with a pen but can type with one finger and can’t hold a cup I had a habit of saying I was a re-tart left with the branding’s of chemo the doctors didn’t tell me I could loose the feelings in my fingers and toes I learn’t that the hard way. I tried to sue the hospital for not giving me any information of loosing the feelings and having my fingers amputated but that had to be done in the first twelve months I left my running to late cause I didn’t know that they had a policy in the hospital after twelve months you just can’t take them on.
  9. And through this the course of it all I learn’t to be more positive in the way I did things did I ever get work not on your nelly I was down looked upon because my hand looks deform and not to many people were interested in some one old so life is on a disability pension and life is just taking my boy to footy yes he went back to the same club and then he had another coach that tried to do the same thing well I gave them a run for there money and I took the club to the Human Rights Commission and I was prepared to stand up for my son and our rights to be treated equal yea the club has to follow the agreements  and my son gets the right to play the game he loves, Why did I take my child back it was because he hadn’t done a thing wrong and I had the right to walk in and be apart of our community with our heads up high.
  10. Did I ever regret any thing  no not really only thing I miss is all the things I bought to make my home comfortable for us to live in and the fact that someone destroyed my house and took all the things I bought. I cried for weeks  knowing I had paid all year chrisco and that was poured through the house and the meat packs taken left with out any thing but had to hold my head up high and move on we don’t have new   furniture now cause its not every day you get a pay out to do your house up so I had to settle for what I could afford still brings a tear that someone could walk in and destroy the furniture and take what they wanted and leave us to struggle with nothing.
  11. But I survived and that’s my story of my run through breast cancer and 2 days later after I left hospital I had to go back for a check up I had the lump on my head  it was a tumor and they wanted me go back into hospital for it to be cut out I refused but I agreed to knowing the damage that was done to my house and I didn’t have much left but I said give me needles to stop me feeling any thing and cut it out and I’ll talk to you when you do it so yea that’s how it was done and stitched up and I walked out they had it tested and I was lucky it wasn’t cancerous but they said had it stayed any longer it would have been so I was lucky there. Knowing I fought stage 3 breast cancer.
  12. Now I take life day by day and I stand for my kids and learn’t to be a person who knows someone above was taking care of me.  Through all this I fought Domestic Violence and the rights of my boys when everything hit it’s a wonder we made it through every thing I had my boys taken care by staff at the school while i had my visits to hospital stayed in on 6 occasions and couldn’t wait to get out each time. My sister in law passed a couple of months after Christmas that year. And life is quiet but I’m the survivor that lived through it all .
  13. I’ve been back again with the breast cancer and fought once again the struggle never once got me down, you don’t realize how much it takes out of you to keep on fighting not once did boys complain they did every thing from washing to shopping paying bills and kept there grades up.Sure all the so call friends dropped of but that didn’t bother me I knew deep down life had to go on. ….. played his footy and took on Referring and showed them all he was a far better person for the things he was dealt with and today he is well respected for who he is and shown them he can walk with his head up high. My ….(other son) stuck his head down in the books and now waiting to see what his OP Score is. And as for me I keep to my self knowing I fought all demons to be where I am, we still take each day as it comes and now have them visits with the doctor but thats life.  I look back today at all with what has happen and the only thing i can say is I still carry that anger with in me when I see the people wearing breast cancer shirts in the club because I get kick out with my son the day I was told I had breast cancer and no one stood up to help us let alone take my boy back when he was falling between the cracks and the parents on the team said we heard what happen to your house ….. sorry we can’t stand with you because we don’t want what has happen to you I was kick to the kerb because a non indigenous man didn’t want to have a murri kid on his team and to coach a murri boy and yet the president took his side sure I got my day with Human Rights and the right to have my son play footy but really they got away destroying my house stealing every thing of value and leaving me with broken shit not to selvage and a life of with nothing. The pay out from the government was to furniture my house and to live in peace. Not to live to this day with shit furniture and struggling to try and buy something on a pension. Now the club is holding a meeting to see how they can change there ways from the club from folding old demons come back to haunt knowing what they put me and my kids through. Every bit of furniture was brand new my kids hadn’t even sat on a chair let alone slept in a bed . We didn’t have an ounce of food I had to borrow a hundred dollars just to feed the kids that week. But at the end of the day my furniture came from road side clean up yes its fowl but one can’t complain at least I have 4 walls to hide the shit and  don’t invite people in to see what crap I live with only 2 people I have asked in but they came when I got out of the hospital and helped carry things into the skip because my hand was still on a machine to keep my fingers alive. As much as I have the anger and the hurt inside I have a boy who loves his footy and his friends and its his dream to do his best and stand tall for what they did deep down he hurts my big boy refuses to ever walk back he holds anger they destroyed his room and took all he had saved and his possessions he said the club did what they did to us and was not accountable for there actions so he stays home and reads and now getting ready to go to university.Its horrible in one way I have to act as if I’ve moved on yet they took away the love of my home and my possessions and wear there breast cancer shirts saying they support breast cancer but kick me out not supporting me when I was going through it because I wrote about the club and there actions to us twice they got coaches to destroy the love of footy with my boy but we got the joy of ending Racism in a footy club. I have met good people through the club and then the shit heads who think they are better people they judge one for the way they dress I don’t dress to impress I am me I put my kids first I live on a small amount of money I can’t work to bring the dollars in and yet made to feel look at her they turn there heads or pretend to acknowledge me but thats fine I know when to walk away so they can run me down whats knew may be if they knew what the club did would they understand how I feel. The club makes my boy feel good with his footy and referring thats all that counts I can come home have my tears behind close doors and they won’t know they got me when I was weak and helpless but they didn’t take my dignity away because I am here still to make them know I don’t run my race of aboriginality taught me to be strong even when I have been hit with the worse of things but the club has great lads who need the club and thats all that counts not the shit people who made life hard but the lads needs everyone support thats why I’m there to make sure no one goes through what I have. And most of all support Teenage Youth Suicide seen and been to many funerals and watched first hand how families have suffered and watched my own boys struggle with the lost of mates and knowing my own father and his sister were gone before they reached 23 years of age yes my father was gone before I turn 2 and I lived the life under the system they paid me out and thats how I bought all the new furniture destroyed by the people who felt murri’s weren’t the time to be taught footy and I can’t throw the towel in to support people who gave my life hell I am a person who stands strong and believe that my children’s dreams have to be given every opportunity in there aims and goals just like when ….. went on the week end to city v country in football with SEQ Squad he came back with new friends one in particular ……….the son of ….(Football player)  (Son)  now talks on fb with …… they played in the same team and (Son) is much happier but he doesn’t forget what he has been put through nor does he for give easy but as he says he gets nervous each year a new coach and the thought it could happen when ya least expect it but he is moving on and takes footy one day at a time.

Rent or Medications?

Do I pay rent this week or do I pay for my medications? This is the reality of many Indigenous people with cancer.  Even with the Government’s commitment to Close the Gap, it’s not doing enough when medications for cancer can cost hundreds of dollars a week. First Nations people with cancer are being let down by the system. Close the Gap, has done nothing for cancer patients, we are invisible, we are expected to die. Pump money into other areas of health but overlooking cancer is part of the crime that is killing us. Indigenous people have the lowest diagnosis rates, but the highest death rates, so it needs more than healthy deadly programs. We need to look at more screening, better services when going through treatment and support within the community.

A couple of years ago I had to make the decision to sell things to pay my bills. I was lucky I had good friends who helped me with food and money. Passing around the hat, fundraising, buying shopping. This was all so gratefully received after I got over the shame of it all. Why am I broke? Why can’t I pay the bills? Why do I need help? Why is it all so expensive?  It’s shame to have to get help from others, when you should be helping those less fortunate. So I had to start selling things. It started off with my Prada and Channel, yeah of course I was a flash black. But I had bought things cheap and kept them and intended to share them with my daughters. But I had to start selling them and I sold some paintings I had. My income was about $900 a fortnight from centrelink, my medical bill was around $2000.00 a week. The cost of cancer medications is enormous, most of them are not on the PBS (Pharmaceutical Benefits Scheme). I was on a drug that was on the PBS for prostate cancer, I was taking it for a brain tumor, I had to pay full price.

Apart from the cost of the medications there are the tests, some tests you can get once a year or every couple of years free they are covered by the government. If you needed it before that time you had to pay for it yourself, like bone density testing, which sometimes you need to get two times a year. Chemotherapy and many other drugs leach the calcium from your bones. Now I am no expert, I understand why a doctor wants a person to get some tests more often, it’s about taking care of the patient. The cost of medication and tests means some Indigenous people cannot afford the care they should be getting. Then on top of that, some face the extra hurdle of have to travel hundreds of miles for treatment.

There is also the travel, if you drive you have to pay for parking, if you’re too sick you have to pay for cabs. Not everyone lives in an area where there is community transport. Sometimes the times of the community transport don’t match up with times of hospital visits and you are just too ill to sit in the hospital for a couple of hours waiting to come home or for an appointment. You often don’t feel well enough to get a bus. The bus, where different perfumes and odors can make you feel nauseous, throwing up on a bus is not a good look.

 

While you are struggling to pay the medical bills, you still need to pay the rent/mortgage, pay the electricity and other bills, buy the food to feed the family, maybe pay for school books, excursions, sports etc.. How do you tell your kids they can’t have Christmas presents or a birthday present? As a parent you carry a big guilt when you can’t give even the simplest of things to your children, because you have to pay for your life. Yep you are paying to stay alive, yet if you had a different illness you probably wouldn’t have to pay so much.

 


Talking Cancer on Television

A couple of weeks ago, I did an interview with Barbara Miller from the ABC. Barbara contacted me a while ago and was interested in doing a story on the problems facing Aboriginal and Torres Strait Islander people with cancer.

 

http://www.abc.net.au/news/2017-03-22/the-unspoken-illness-cancer-in-aboriginal-communities/8373816


Me and Dad

Stories from you, show the strength and courage of our people

I was raised by my Aboriginal dad, I know Aboriginal dad’s having been coping some flack, but they are great. THey don’t all drink that’s only a few that get shown on telly. My dad is special he raised me and my brother, he said he had no favorites but I knew I was his favorite. My mum died of cancer when I was 8. I remember going to the hospital all the time, we moved to be close to the hospital, dads side of the family didn’t like that, my aunties wanted us to stay with them and for dad to go to the hospital and we could stay with them. But dad moved us all to be with mum. I know now why he did that, she was dying but at the time it was exciting to move and sad to leave family behind. Dad worked all day, me and my brother went to school, we got up in the morning and dad was gone to work, but their was always porridge made and warm sitting on the stove. We came home from school and did our homework, clean up the house and started something for dinner, we weren’t master chef or anything like that, it was just boiled potato and cabbage and then dad would do the meat when he got home, we had a lot of corned beef, that we could cut and thought we were deadly when he would get home and we had dinner ready. Dad would come home tired, but he would smile and we ate dinner he wouldn’t let us tellhim about our day. We would then go up to the hospital and then we would talk about our day, so that mum could hear about it. We would have fun sitting around mum talking about everything, she was always so happy to see us. The nurses always knew us by our noise as we came in. They would give us the old syringes and we would have water fights with them, filling them up and squirting each other, them and mum and dad. One of them said if we put food coloring in the syringes we could do paintings. We bugged dad for some so we could do it, but he couldn’t. I guess the nurse understood that he was struggling, working raising kids, being at the hospital all the time and that he probably couldn’t afford it. She bought some food colouringing in one night and some paper, nothing fancy just old butchers paper. We set up on the floor in the ward and squirted and giggled and made some beautiful stuff. We stuck it up all around mums bed. It really brighten up the place. We took the food coloring home and for the next few weeks we had colored potato and cabbage and cauliflower. I don’t know how my dad sat there and smiled and ate the stuff. Mum died and we moved back home and life just wasn’t the same without mum. But dad made sure that we never felt left out of things. He was so shame when we had to go shopping to buy my first bra. My aunties all wanted to do it, but he took me to the big department store and boldly asked the lady to help me, she took me aside and measured and fitted and I got my first bra. My dad talked to me about periods and took me to the chemist and got the lady to explain all the different products, so I knew what was what. After both of these events he told mum all about it. We would visit mum every week and tell her about everything. It might seem strange to you but my dad went out of his way to make life normal for his kids. I am packing up my dads stuff now, he has passed he is finally with my mum. But I found folded up neatly in the cupboard our food coloring drawings. I realized then as I was telling my kids and neices and nephews how incredible his actions were, my mum died in 1970, in those days men didn’t do the stuff he did.


You can never forget

People will forget what you said,

people will forget what you did,

but people will never forget how you made them feel. – Maya Angelou

These strong words are so true. I look at how my behaviour has changed with the brain tumour. I shudder when I think of the things I have said to my children. The horrible words I have thrown at them, the accusations the contempt the hate. I have to own that. I have to accept that and not shy away from it. Sure I had no control over what I have said, but the damage is done. My kids can’t forget that I have said I hate them, over and over again. No matter how many times I tell them I love them, those words are branded into their hearts. Yes they know that it wasn’t really mama, but it has an effect on them.

My kids are wonderful humans, they have had to live in a hell of a woman who can’t control what she says because of medications and black outs. I have told my kids some horrible things. I went through a stage of always calling one daughter a slut. What does that do to a young woman? That is just one example of the things I have said to the kids. They will never forget and with somethings have decided that it must be what mama really thinks of them.

I hope my kids can forgive me for not just making them live with a health issue that has taken over all our lives, that has meant huge adjustments, that has meant no extra money for fun things. I hope they can forgive me for being the person who says terrible horrible things to them. I hope they forgive me for saying it to them


Good News

Today I am happy, Charlotte the tumour has shrunk.

It’s only a little bit, but it shrunk.

I still have a tumour, but it shrunk.

I am not out of the woods yet, but it shrunk.

So many treatments didn’t work, but it shrunk.

It didn’t diminish with all the treatment, but it shrunk.

I have renewed hope