These forums are being held around the Country, just contact the Menzies Institute for information.
Why is this so important. Well we don’t talk about Cancer, we hide it away we treat it like a shame thing. It’s not leprosy, but some people act like you can catch it from others.
We need to have an open and honest dialogue about cancer and how it affects us as a community. We have people who don’t want to talk about it, keep it hushed up until after treatment. We have those who don’t talk about a family member and they just keep it amongst the family. Some times a person needs to be pushed to interact with the rest of the world, otherwise you might as well just curl up and die.
We need to go to these forums so we can share our stories, use our words and share our grief. I am going to one and I intend to talk about the toll Cancer has had on me. It’s not just having it, coping with it, dealing with doctors, hospital medications. It’s also how it affects your family. The cost of getting to and from doctors the cost of medications that aren’t on the PBS. We need these experts to hear this. We need them to understand that we can’t afford the medications but we can’t afford the fancy doctors to advocate for us to be on trials so we often don’t take the medications because it costs too much.
Think I’m whingeing? well I have had to look at my income and decide, what is more important, rent and food, getting the kids things for school or paying for an excursion or sports, or pay over $800 for medications. That’s not just me. There are a lot of people out there.
Once you hear the word cancer you can go into automatic shutdown, it’s important to stop that, to talk to reach out to feel!!!!!! My kids have been through a living hell watching me die a numerous times, be revived and for a while with the medications etc., not knowing who the strange woman was. I was a complete stranger to my kids and an out right bitch. But how do you explain to kids that, that isn’t really mama. That she is tucked away somewhere under the stress duress and medications.
Keeping appointments is hard, because you just don’t want to. Hell its hard to go to appointments and be told that things are worse or just the same. If things get better that’s great. But the problems have already affected your family and your finances.
We need them to know this we need them to know that in our close knit communities that sometimes the Cancer word scares off people. Some get scared and can’t deal with it. Some just don’t know what to say so avoid you.
We need to know that some one is there, even if it’s just to drop off a stew to help the family, because that might be the only decent meal they have at the time, especially if some one is in hospital.
The experts and medical profession need to understand our beliefs and our ways. Our way isn’t your way, it might not seem the right way, but it is to us. Health professionals need to know that we use gumbi gumbi, or other bush medicines. They need to know we see our healers and that sometimes we follow the beliefs handed down from our parents or grand parents.
They need to know that sometimes what they offer isn’t culturally acceptable to us. I know they do a good job and have consultants. But sometimes what is up in the hierarchy doesn’t make its way down to the coal face.
We need to stand up and talk up big. in fact we have to yell to be heard. This is not just for our own benefit, but for the future generations. WE NEED TO STOP MAKING CANCER A TABOO
Talk about it, it’s only a word and it’s how you react to it that makes the difference. I certainly am not giving up my life to cancer, I have far too many people to annoy and piss off. and what with dying and all, the devil isn’t ready for me.
So my job is to make sure we talk about cancer, we share our stories of having it, surviving it, living with someone with it. loosing some one and just the over all effect it has on us.
I am not a cancer survivor. I am a conqueror.