Monthly Archives: May 2017

Views on Death3

Stories on death and dying…

My mum died in 2014 and before she passed, she called all the family together, she knew she was going to go. All them old ones know when their time is coming, they still have a strong connection with the spirits and the land. They get the warnings and the sights that time is coming to a close.

When my mum was calling all of us together, we knew it was serious so we all made sure we got back to ….. back to country to see her off. Mums family were there, my auny and uncle, the only ones left of mums sisters and brothers. All us kids and the cousins and the grandchildren. We made the biggest mob. We all spent time up there with mum, some times the hospital would let one of us stay over night, some of them understood it was near her (mum) time and they were caring. Some wouldn’t let us stay and would get angry when we were there, it’s not like the other families weren’t doing it too. We thought it wouldn’t be a problem, lot of old people there and many white families spending time with their family. Sometimes there would be up to twenty people there to see someone before they died, the hospital let them do that.

Time was short and we had to get everyone to visit mum at least once and we wanted to have everyone there together for a visit. We talked to one of the staff and told them, she said it would be fine and that if the family was too big, she would move mum to a room alone or outside so we could all fit. That Sunday was nice and warm, it was sunny and we all went up to the hospital, biggest line of cars going through town. Me and my husband, my brother and his wife went in first. We spoke to someone and told them that we wanted to spend time with mum and that we had all the family here. She came with us to mum and she asked mum if she wanted to go to the garden, it was all fine, mum was being helped into a chair and we went out. Mum was happy to be outside, she wanted to put her feet on the ground, just to feel it, she was sick of being in a bed all the time. Before this cancer took her she was always outside walkingin the yard, going with family and friends to the bush.

We were all having a good time, mum was having a good time enjoying being around everyone again, she was kissing everyone, laughing and hugging and cuddling all the babies in the family, it was lovely watching her be happy for a while. This man starts yelling at us to get out of the garden and telling us we were ruining his hedges and roses, I swear we were no where near them. He is saying that we are trespassing, I tell him that we weren’t. My brother ….., heads to him, saying that our mum was a patient and we had permission to be in the garden. This man still yelling shouts that he is the gardener and that we weren’t allowed to be there. ( Brother) tells him again that we are allowed to be there, we are no different to the other families that come into the gardens, my husband …… goes in to get the staff member who brought mum out. This man just keeps yelling and yelling, we got the younger kids to come around mum, they didn’t need to hear this angry man. The younger ones in the family start yelling back at him, I was telling them to shut up, that just makes things bad and that we don’t want an argument,  and that we don’t want to ruin mum’s day.

….(husband) comes back with that woman, and she says that yes we are allowed to be here. No this gardener getting closer to us and he was right up in ….(brother) face telling him to get out and stay out. He tells the woman, that we had been pulling up flowers and we let the kids run around unsupervised and they had damaged the roses and had put holes in the hedging. The woman says to us, watch the kids and turns to him and says, they will watch the kids from now on and that kids probably didn’t mean any harm. No good this man then yelling at her says that we have to get out of the garden or he will put the sprinkler on us. My son …. says this is bullshit and that the man is racist, and yells at him to get off Aboriginal land. All this is happening, while my mum, is sitting there, trying to enjoy her family in her last days. That gardener then calls us a pack of coons, calls one of the men a gin jockey. Well I had enough, I said we are taking mum back inside, so with my aunty and uncle I take mum back into the building, everyone starts to follow, the woman from the hospital takes us to a family room, so we can continue spending time with mum as a family.

I was determined that this wasn’t going to spoil our time. Everyone was talking about the gardener being crazy or a racist or a crazy racist. But never mind him I was saying lets just be a family. We sang some songs that mum loved and taught us, like pearly shells. The little kids sang songs and performed for her, doing Beyonce and things like that, it was funny. My nephew …. went out to the car to get his guitar and when he came back he was fuming, he told us that a couple of small family groups and some old people were out in the gardens and the gardener wasn’t telling them off. This made everyone angry, even mum wanted to get up and have a go at the gardener. (Nephew) and (son) went to find someone to ask about this, they kept saying it was racist, they came back with the same woman and we said that was wrong, that mum couldn’t enjoy her family outside, just because she was black.

Typical white woman, she said it wasn’t racist, so the boys asked her to prove it, they said go talk to the families outside, see if they were told to go, ask other staff if he had said anything and talk to the gardener. I don’t think she wanted to, but everyone said they would tell the media and we would take them to court. When she came back she was looking shame. The boys demanded to know what she found out, they were angry, but don’t think they threatened her, they are just educated black men, who know their rights. She said the gardener didn’t tell anyone else to go and that he wasn’t around. We got her name and the gardeners name, we told her that we wanted the big bosses name and that we would be back early tomorrow to talk about this.

We complained to the manager and he said he would investigate it. We said that mum was an old woman, she shouldn’t have to put up with no respect and trouble when she was just trying to be with family. We stayed with mum all the time then, round the clock, they weren’t going to stop us or get angry at us, I don’t think they were game enough. It’s a shame that a black woman can’t even die in peace, racists have to ruin that too. Mum passed a couple of days later, its just not right.

 


Views on Death 2

Stories on death and dying…

When we go to hospital, we die that is how the medical process works. I have my own doubts about euthanasia in the hospital. Who should do it? When should it be allowed? Why should it happen? I have thought about euthanasia since my second cancer was found in my breast. The first one I had surgery chemo and radiation treatment, and I had Tamoxifen which might be why.

Having a second and it needs to be looked at differently and everything is different. I am told that it should be fine and I will be alright, but it made me wonder about life. I talked to some of the women who were at the clinic with me and I guess I am lucky I haven’t had it as bd as some of them. But I wonder sometimes and then I wondered more after you shared. I think I came up with some ideas you probably didn’t think of when you wrote it. You shouldn’t be talking to the community about killing yourself, that’s just giving people the opportunity to hurt us. Think about it, when an elder is in the hospital and you have a racist nurse or doctor, they will help that one die rather than treat them.

A lot of our people die in teh hospital and I wouldn’t be surprised if some of them were helped into the grave by medical people who gave them a bit extra sleeping pills or a bit too much morphine.  How many have died because they didn’t get the right care, they are treated badly just because they’re black. Talk of killing yourself, or assisted suicide is dangerous.


Views on Death

Stories on death and dying…

I was upset to see that you want to die. I have cancer and I don’t want to die. Euthanasia is ethically and morally wrong, the world has made great progress in treating cancer and I hope that one day no one will die from cancer. I agree that Aboriginals don’t get a fair deal with cancer, I’ve seen too many of my family die from it and that makes me angry that you think euthanasia is fine. As an Aboriginal woman you should be careful of who could be listening and might follow your lead. Watching my aunties die from cancer and some of them thought death would be better, but it’s not. I don’t see much difference between euthanasia and suicide, you just give it a fancy name and think its fine. The pain and the withering of the body and no control of the body is part of life. Life isn’t pretty, its messy and so is dying. Another thing is that if you say you are willing to die rather than suffer you are a coward, the pain is part of dying and that is part of the ritual of cleansing and passing into a better place. If you promote euthanasia we will never be able to trust a hospital it will remain a place of death to the community. 


A reader update

I posted a young woman’s story in December 2015. The person has contacted me again to give an update, that I am sharing with you.

 

Hello Colleen, I found you again and reading what has been happening I decided I would let you know how I am travelling. I have survived ovarian cancer, I think australia should celebrate that I survived, I found out that a lot of people don’t survive, especially Aboriginals, I agree the cost is way too much. How can the average australian afford it. I watched my family tear themselves apart with the cost, it’s a bitch being the reason why your brothers can’t go on school camp and the one who is more important than the boys playing football, yep I’m the one who took the money that was meant for the family holiday. I watched my parents cut all activities for my brothers so they could buy the stuff I had to take, so that they could be there with me in hospital and take me to appointments. I saw my family argue over it all the time and my brothers get angry that they couldn’t do anything, they hated me at times because their lives stopped because of me. We had no fun, no movie nights, no football grandfinals no school dance or camps. we didn’t have sleep overs or friends coming over, because all the money was spent on me or I was sick, I was always sick, anything that was going around you could be sure I would catch it. My parents fought over money all the time. I felt bad, I was responsible for all of this. I hated myself for being the one that spoilt our family. A kid from a canteen thing said we should fundraise and that her family did that and they make enough money to cover some of the stuff and take a holiday. We tried, we didn’t make much money, I don’t think a black girl needing money is as important as a white girl. Our school did a cancer fundraiser, using a photo of me, would have preferred them to not do that, but they made me feel bad when I asked them not too. I felt like I was ungrateful that they cared and wanted to raise money for research. I am a bitch because I would have liked some of that money to be given to my family to help them with the bills. I am glad I am not in that school anymore, I hated the teasing, they called me fuzzy wuzzy angel when my hair was growing back. my friends thought I had been having random sex and hook ups and that’s why I got ovarian cancer. It is all over now and I am trying to move on in my life. I have had enough of bad stuff.

 

Original post December 2015

I will tell you who I am ….. I am a student with ovarian cancer. I had no idea a girl in high school could get something like that. Who is out there talking about it and helping us. I went to the doctor and my mum was sure I was pregnant. She was wrong, I have this stupid thing in my uterus. Who thinks about this when you are trying to get good grades. I want to go to university, I want to travel. now I am looking at surgery, chemotherapy and a lot of drugs. I don’t want to go through this. I have to do it alone, because who understands what I am thinking or what this thing is? My mum got a lady at the hospital to talk to me, I think she was from the hospital? She was a lot older than me, she had kids and a job and was telling me how good life will be and to be posative but, she has done what I want to do. How do I find someone who knows what it is like when you are young? Why are all the cancer ads of women who are white, rich and middle age? Where are the other races? where are the young? the only thing I see with young people all are about lukemia. We don’t fit into the box that is out htere where is us? where do we fit in?…

 


Mothers day

Love and prayers, to all the mothers who have or had cancer, who have supported family and friends with cancer. Extra Blessings on those who because of treatment, can’t hug their kids.

Mothers day is a day to celebrate your mother, but it has mixed emotions when you have lost your mother. I lost my mother to cancer, and I miss her every day. I think I would be a better mother, if she was around. She passed away, just before my son was born, she was so excited for that birth. She couldn’t wait to meet him. Yes, she knew he was going to be a boy, while the rest of us had to wait to find out. My mum with one of her friends made so many baby clothes and one, they were so proud of was a little sailor suit.  My children have missed her, even though three of them have never met her, they know the stories and heard all about her from their pop and aunties and uncles. One of my daughters looks so much like her, it’s often commented on, she has a link with her nan because of that, she has a little Daphne face. But they have missed out on knowing a wonderful, peaceful, loving woman. The door was always open, my mum was always there to lend a helping hand. She would sit with people who just wanted to talk, or needed a shoulder to cry on.

She raised her family to be proud of their heritage, to hold their head up high. She told all the girls in the family they were as good as the boys, if not better and to not let anyone put you down. She used to say “You’re black and your female, the world already has it against you. You go out there, hold your head up and show them what a black woman can do”.  She used to tell her daughters, “you’re black, you’re beautiful, you’re you, don’t be afraid to be black and beautiful”. When I had my first child and my mums friends, were sitting around OPAL sharing advice, my mums advice was, “I don’t want to be the mum with the cleanest floors, I want to be the mum who had time and played with her kids”. She did just that. Our house was messy, it was always clean, floors mopped everything dusted, but it was messy, with kids, toys everything. She had time for her kids. Her kids, weren’t just her biological children, but the other children she raised, or who just were at our house.

She was not all profound quotes, she was a bit of a ratbag at times, especially if you were cleaning. One of her favorite tricks, was to dance, where we had just mopped, now when you’re a kid and someone does that, you just want to get angry. But my mum would dance and sing “Whistle While You Work”, this was so lame, that you would end up giggling, and that would encourage her to do more. She was a great cook, and enjoyed cooking, she didn’t enjoy preparing a meal, but enjoyed when she could just bake, or have fun with food. This experimentation wasn’t welcome to my da, who was a bit of a grump and a meat and potato kind a man. But us kids, we loved the different flavors she came up with.

My mum loved to sit down with a cuppa and have a chat, or tell stories, the funny incidents from her childhood, or the sad. She was a born storyteller, she believed that was the way to pass on our history. Stories were of our family, of her time being a domestic, how she had to go to the black window every time she was allowed to buy something. The good the bad and the very ugly. My favorite story was of my parents wedding. How hard it was for them to marry a white Irish immigrant to an Aboriginal woman. But they did it. My mum always said, “Love sees no colour”.

Happy Mothers Day Mum, I love you and miss you.


No-support Group

This is a reader story.

I have been living with cancer for 2 years. It started as a little thing I had to get a biopsy and take some tablets. I didn’t understand why people complain about it the treatment seemed so easy.

Then another spot showed up I had to start taking different tablets and they made me feel queesy but its a small price to pay. I had to get my breast removed, I thought thats alright I will still be alive and had more tablets.

I had a leaky bag instead of a breast it started to feel bad, it started to feel no good, it wasn’t just a little surgery and tablets. I started to think the women who complain had a point.

I had a counsellor and she was good I guess, I joined a suppport group and it was not good I guess I didn’t fit in. They spoke of suppliments, herbal tea, having a day spa to relax and finding “me” time during the adjustment. I spoke about gumbi, bush medicne, bush tucker and going bush, sitting under a tree on the riverbank. They insulted me when I spoke about eating roo burgers. They looked down on me when I said I couldn’t do a spa.

They had help with house work and shopping, I had nothing, I struggled to keep my place clean and it hurt. I asked them who helped them it was a cancer council they organise a lot of help. I contacted them and I got the phone numbers of the Aboriginal organizations around and told to assk them.

I did I felt taht I should have had the offered to me like the women in my support group. I thought they should help everyone equally. I paid for someone to come in to help with the housework from the Aboriginal organization, the support group women weren’t having to pay for their help. I left that no support group when they talked about Aboriginal people getting evrything and that people like me are a pimple on the face of the country.


Cancer debt

Another story from a brother that wants to share…

 

I’ve read your blog and thought I would share with you my own, don’t use my name but can you email me privately. I have Gastric adenocarcinoma to the layman that means stomach cancer. Stage III, I guess I brought on the cancer in someway, the doctor gives me that look and shakes his head.  I have been called non compliant for not taking all my mediccne, the reason I hadn’t took them was simple, I couldn’t afford the bloody things.

Let me tell you, chemotherapy, radiation therapy and surgery had me off work for a couple of months, then more chemotherapy and lots of pills and tablets some of them cost $140 dollars for a box of 21 tablets, you put that with the cost of the tablets you take while having the therapies and then you have the tablets for all the upsets that those medications cost. I was paying out $600.00 a fortnight on a good turn and $600.00 when symptoms would change. I don’t earn millions, I thought I had a good wage until this. I have medical insurance, but that doesn’t help me with the bills, and I found that the more money I paid to doctors and the hospital the less I was getting back from the company. I found that some xrays and tests cost way too much. Paying a couple of hundred for xrays and ultrasounds for my stomach every couple of weeks adds up to a couple of thousand in a short time. I took holiday leave that covered me for a short time, I applied for sickness benefits, I thought I would fit the requirements, I wasn’t working, I was unable to work, I hoped to go back to work but I didn’t get it. I wasn’t eligible, how was I to make ends meet. How do I pay for medications, tests, hospital, doctors and all the extra stuff that is on those bills, while I still had to pay off my car loan, rent, food, clothing, schooling and the other extra stuff. My wife wage pays some of it, but really no where near enough, luckily we have only one child, 10 so at least that’s a bit cheaper than a baby. But there is never enough money.

I checked with my family doctor about close the gap, I thought this might save some money, it did but only on the medications that I had already reached some threshold of buy medications, so some medications, were free. Did you know that? When you pay over a couple of hundred dollares for some medications you can get them for free for a year, I didn’t kow that until the doctor told me. Even with this it didn’t help with the medicine that costs over a hundred dollars and I had 3 lots of those. It doesn’t help with the xrays and ultrasounds that cost a lot and that the health insurance company gives you back less and less because you need so many of them. I noticed a few doctors seem to want to save the hospital money and not the patient, they tell you to get your family doctor to check on this and that, you tell your doctor and he sends you for the tests, instead of getting them in the hospital, my doctor told me that, it saves the hospital money but you have to pay for them, costing you money that you can’t afford. I had to find ways to make the medical bills smaller and this kind of things doesn’t help.

Of course we cut back on things at home, I wasn’t looking to save money by intentially cutting my treatments, if I thought of doing that my family would have stopped me. We don’t live an extravagant way, we are humble, pay our bills, don’t drink or smoke, once a month we try to do something fun as a family, maybe go to a movie and have dinner at Sizzler. We all play sport and that was the first thing that went, no more basketball, that was tough on the little guy, but he understood. We gave up the once a month family outing, we cut foxtel, we cut back, we bought mainly homebrand everything. All this and it still wasn’t enough, I still had trouble making ends meet. I had times when we had to make a choice do we buy groceries or pay off the car loan or do we buy the medication. I never once stinted on the rent, I was scared that if we go behind we would be evicted. I thought of selling the car, then I would have no more car loan to pay off, of course I couldn’t do that because it would have cost more in the end, when you weigh it up, taxi cost a lot. Yes I could take a bus to the doctor he wasn’t too far from us, the hospital I had treatment was about fifty kilometres and a four bus changes I know my limitations and I know that would be too much for me on a sick day, I am not a tough or big inner strength person, I think I lack in those areas. Other arguments in favour of keeping the car were carrying shopping home, getting my son around to friends or family. End result no selling the car. I was still a man trying to make the money spread, not enough money too many bills. I had times where I my prescription ran out and I couldn’t afford $140 for tablets. I felt embarrassed about this I didn’t want to tell anybody that I was too broke to get medicine. It took a while before the doctors caught on that I was not always having my medicine. I became sick and had an infection that just wouldn’t budge so I went into hospital for about a week, that’s when they found out that I was sometimes not taking my medicine. I told them I just forgot to take them on occasion, I didn’t want them to know the truth. Everybody in the hospital or going through treatment seem to have it together, they don’t seem to be struggling to pay the bills, they don’t seem to be scared that they could die, they don’t seem to be scared for their family, they seem to have a different reality from me, almost live in a different world. I was ashamed that I was broke. My wife made things worse, when she said that she always reminded me to take my tablets, I could have killed her, but when we were left alone, I had to tell her the truth that I wasn’t always buying the medicine, because we couldn’t afford them. I had to tell her that I didn’t want her worrying and crying anymore about it, so I didn’t tell her.

I can cope with the pain, I can cope with the overly friendly and loving people because you have cancer. I can cope with not working, not being able to do much activity because of the pain. I cannot cope with the lack of money. The uncertainty of could we be evicted, could we lose the car, could we cope with no shopping. Not having enough money to pay for the day to day things. Not having enough money to buy my child a school jumper. In my mind, going without a tablet here and there was the obvious choice. I wasn’t wanting to die, but I wasn’t wanting my family to suffer. I don’t think anyone with cancer should have to choose between medicine and other bills, surely there are enough people with cancer that the government should make all the medications on the benefits scheme or some other scheme. Reading you I have found that I am not alone, If the government really wants to help with the gap, maybe one thing it could do is to make all cancer medications cheaper for Aboriginal people. Cancer medication should be on the close the gap, I read that a lot of Aboriginal and Islander people have cancer and die from it, maybe having cheaper medicine could help that. Cancer council should be helping to get medicine cheaper. I think because cancer doesn’t make you sick for a day or a week it makes you sick and the time off work is a long period the government should automatically allow sickness benefits while you have treatment and for the recovery period. Cancer affects all the different parts of your life, it’s not a small thing, helping patients should be the gold standard. Struggling to pay medication should not be something that anyone has to face, if you can’t afford them then you are noncompliant and they think you are lazy so the doctors and nurses don’t take you seriously or they think you are trying to die or get attention, silly really but that is how the system works and you then have to waste time talking to social workers and counselors who once you explain why, then shrug their collective shoulders and tell you to contact lifeline or something like that. It really doesn’t help.

I am getting better, but I am in debt, we had to take out a loan a big loan that I would have preferred to buy a house than have to pay for medicine. I had two years away from my work, and they don’t want me back after such a long time, it’s nothing personal, but it feels like it. I am working parttime until I get completely well and I can get a fulltime job. I will be paying for my cancer for the rest of my life. I should be grateful, but I can’t when I think of the financial burden I have put on my family. Thanks for hearing me.