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

Close the Gap

Today is the day to mark/help/support Close the Gap. That is to show a commitment to help the huge difference in life span between Indigenous people and white Australia.

thehttps://www.oxfam.org.au/what-we-do/indigenous-australia/close-the-gap/-gap/

This years report:

It should be so much more than a photo opportunity or a morning tea. There are ways that everyone can help to close the gap. I am going to share some simple ones that I have been trying to get happening for years.

• More Indigenous hospital liaison officers, whatever title you use, we need more people in the hospital working for us. Big hospitals often only employ two, that is not even close to being enough, when they have to help someone in hospital. They should be employed around the clock.
• Hospitals need Indigenous volunteers. They need to have a separate army of volunteers, who deal exclusively with Indigenous patients, to spend time with the person from a remote area in a city hospital. To sit with someone having a long treatment. Just a friendly face in an alien environment.
• Cultural Awareness Training (CAT) should be compulsory with all hospital staff, from the cleaner to the director. This training should address the issues and problems in health but also it needs to be localised to have the Traditional Owners from the area to share their knowledge. Truly let people understand, I am not talking a one of two-hour session a year, but a long fully formed training. Refresher courses each year.
• General Practice need to have CAT, even if they are not signed on to CTG, because they are going to be seeing Indigenous patients.
• General Practice must lose their incentive payments if they  sign on for the incentive and during that time they don’t see an Indigenous payment, they should not be entitled to the one-off payment. Again they should lose the bonus if they are signed up and do not annotate the prescriptions for patients.
• All medical and Allied Health professionals should do and be assessed on Cultural Awareness on a regular basis and this needs to be registered. It is not good enough when a health professional does one course on Indigenous People and 20 years later still think that was enough.
• Indigenous people have the right of choice. We should be able to see a private GP or the local Indigenous Medical Service, we should be able to see both if we want, but some funding seems to steer us towards the Indigenous Medical Service, this can be hard if it’s a long way from your home and you have to depend on public transport.
• Employ more Indigenous people in the health sector, not just                        doctors. It can be as simple as a receptionist, who makes a difference.
• Indigenous patients must be heard. Not just in the surgery but on national committees. Our experiences must be more than just fodder for researchers or funding applications.
• The PHN’s, Division of General Practices and other organisations, must stop handing over Indigenous units to others. You have patients that see so many doctors you have to be responsible for that. Handing it over to Indigenous Medical Services etc, is passing the buck. It takes away our free choice. It is a way of saying you are not interested in our well-being.
• Invite Elders to your hospital, clinic whatever on a regular basis, consider having an Elder in residence at your local hospital.
• Recognise and celebrate our Important dates. It smacks of racism if a hospital is decked out in green and shamrocks everywhere for St Patrick’s day and come NAIDOC, there is a morning tea, hidden away with only a few people involved. Share it. Don’t even get me started on Australia day. Okay just  a little bit. Understand that we don’t think it’s great to wave the flag or want to be in your premises when you have complete overkill of decorations and start talking about how wonderful it is.

I guess I should stop now. These are the main things I have been pushing, things that don’t cost a lot of money, but will make a difference.

Thank you

Complacency

I have fallen victim of complacency. I have been just rolling along following what the doctors tell me, while my health has been getting worse.

My doctors, have been complacent, in the fact that some tests had not been done and that I had been fine, so lets not bother. My medications probably should have been reviewed but they weren’t. I have been house bound because I faint and have blackouts, I can’t have a “normal” day, because of this. I have been asking my GP and neurologist what is going on? I have been asking since I started having this problem in November last year. I have had the medication problem associated with trying to fix this. But really the thing that has made these two wonderful doctors act is the Oral and Maxillofacial specialist.

Complacency

noun, plural complacencies.

1.

a feeling of quiet pleasure or security, often while unaware of some potential danger, defect, or the like; self-satisfaction or smug satisfaction with an existing situation, condition, etc.

2.

Archaic.

1. friendly civility; inclination to please;complaisance.
2. a civil act.

http://www.dictionary.com/browse/complacency

When this Oral and Maxillofacial specialist found the bone spur had grown, the other two had to react, it made  them take another look at my health again. They pointed out all the reasons why this other doctor couldn’t do what he wanted, my brittle bones, my general health, the impact this would have on the tumour.

This little push made them do more tests and scans, some of which I hadn’t had in a couple of years, because I wasn’t having any trouble. Really these tests should be done every 6 months, but because I seemed fine, the doctors and myself just let them slip. Maybe if these tests were done when they were supposed to be done, the growth in my jaw could have been found sooner, and I wouldn’t have to face this discussion of replacement of the bone versus the bone can’t be replaced because of the brittleness.

I guess what I am trying to say is that you can’t be complacent with your health. I of all people should know that, but sometimes it’s easy to ignore it and enjoy the good things and count your blessings.

 

When you try to help, but can’t

This is a story of someone who tried to help, but felt the racism

 

Hello my name is tiamah, I am a proud Waradjuru woman living in… I went to help at my local hospital as a volunteer. I asked if I could be a volunteer to help other koori women with cancer. I got told I couldn’t and that on the day I would be sent where I was needed and that they would take that into account. I said I would help with any cultural capability training needed for staff and volunteers and was told this was done by the health department and they were all up to date. I told them, that they might be up to date, but what they have learnt hasn’t been acted in the work place. I was asked what I mean, so I told them that I had issues while I was in the hospital, I told them I couldn’t have a male nurse doing intimate washing or things like that, but that my needs were overlooked. I was told that it must have been a busy period and that it must have been a rare incident.

So with my tail tucked between my legs, I let it go and thought, well maybe they are right. My first day on the job, I wish I could say it was a breeze but it was hard going and I had so many strange looks from other people. I had a nurse chase me out of an area and call security. The  boys and girls at security were funny, they could see the humor in my being chased out as if I was some random off the streets. I’m glad someone saw the funny side of it. I felt totally humiliated. I was reminded that no matter what I do, to some people I am just a black. A black that must drink and take drugs. A dirty no good black. That is the way some people see me. They don’t see the woman who is proud of her Aboriginalness, they don’t see the mother, wife and friend. They don’t see that I have survived in the white man world I have studied. I was employed at the local school as a teacher until I was diagnosed with breast cancer. They don’t see the woman who wants to help others. All they see is their racist hate.

 

Being a burden

Being ill means that quite often you are a burden to those you love. This leaves you feeling angry at yourself and angry at the world. In our house tempers flare when I am really unwell. The past few months have been hard on me, but they have also been particularly hard on the kids. I am a burden on them at times. I try to minimise the impact of me passing out and vagueing out has on the kids, but I can’t completely take it away.

I have had to make my kids cancel some things they want to go to and I have not been able to do somethings that I should be able to do. The kids get cranky, they get cranky at me and at the circumstances that have put them in this position. I get cranky at them, for being cranky at me and it just turns into a big mess.

Their feelings of being annoyed are perfectly normal, hey they are only human. Then they also feel guilty for being annoyed. I try to tell them that it’s alright to be angry about it and it’s alright to feel burdened, they shouldn’t feel guilty for having normal emotions. I also have to tell myself not to feel guilty for things that are outside my control and Lord knows I have no control over what the brain tumour is going to do.

I try to make sure that I spend a bit of extra quality time with each child individually. I also arrange a system of taking turns to be around mum. or I set myself up with everything I need in one area so they don’t have to worry. We did trial a system of mum phoning a child, three rings then hang up and they know everything is fine. But the system doesn’t work so well, when mum forgets to do the call, then kids get concerned and come home just to find mum was too engrossed in watching Vikings to call.

I guess the main thing is to understand that guilt and frustration are normal and they have to be treated as such, so things don’t blow out of proportion.

 

International Women’s Day

International Women’s day is a celebration of what women have achieved and how far they have come. Aboriginal women had twice as far to travel with more hurdles than you see in the Olympics. We were over looked, the white colonizers treated us worse than our men. We had to fall into the structures of a male dominated society and that completely ignored our role in the Aboriginal community and the family. We encouraged and helped our white sisters in their push for equality, the shame being that they didn’t support us. The Feminist movement did nothing to help Indigenous or Black women around the world. They used us like steps on a ladder to push their own agenda.

But Our women were always feminists. Traditionally we didn’t see women as the property of men, they were not subservient. The man wasn’t the head of the family. We had a system that recognised the importance of both male and female. We have been trying to reclaim that after the missionaries and early settlers pushed their patriarchal system and ideals on us. Having our women recognised as equal is still foreign to white Australia. It doesn’t recognise the importance of two people male and female representing us on all levels.

In the hospital system it is important to have male Aboriginal hospital liaison officers to work with our men and female ones to work with the women. The same goes for everything we do. Don’t ask a woman about men’s business, she won’t tell you, she can’t tell you. The same with men talking women’s business.

Because we value the strength and knowledge of women we have been putdown and demeaned by the wider Australian community. We were told in one period of oppression that our men had problems with alcohol and drugs because we were not in a hunter gatherer society anymore and that women do more than they used to in traditional society and usurped our men. Luckily we saw through this and know it for an attack on us, rather than look at the big picture of what is going wrong.

Our women hold together our families and communities. We need to celebrate our women and rejoice that we have so many strong young women coming up who will replace our Elders. Our women hold the spirit of our culture. Show your love and appreciation to the Strong Black women this International Women’s Day