I apologise yet again for not posting sooner. I’ve been getting migraines since August and they have been getting worse. Through September it reached the point of more time in a dark room than out. My current specialists tell me they can see no reason for the migraines, as Charlotte is not doing anything.
I have migraines that kick off with a nose bleed, these last a couple of days and the ones that don’t last a day or two. But I the intensity has been getting worse. It’s been completely unbearable. I have been referred to a new specialist, who is a neurologist who deals with migraines. I guess that makes him a migraineologist.
Let’s hope he has the answers and can help me, because I am sick of spending days on end in my dark bedroom.
Putting out a call for help for Leonie Coghill. She was the head of the Secret Sacred in the Queensland Museum. Leonie helped a lot of people get their Ancestral remains returned to country. She got so many remains out of University of Queensland and held them in the museum where family could come at anytime to visit.
Leonie is really sick and needs help. If you have had your Ancestors returned or need information as to how your family ended up on display Leonie would have been the one helping you. Please help her now,
Sorry for the delay, but I have been having tests and its not bad but its not good so I was getting my head around the latest results and what that means to me and my kids.
Let’s get back to what I was talking about last time.
Why are we dying at a higher rate than non-Indigenous peoples? Government websites will tell you it has to do with our general health and co-morbidities or that we opt out of medical care. Really we opt out of medical care when its terrible, racism has a lot to do with us dropping out. Not understanding what the doctor says falls into racism because of the doctor knows the patient doesn’t have English as a first language they should slow down what they are saying and break it down into easy layman terms. Check the patient is understanding what is being said. Most hospitals have Indigenous Health Workers, get one to sit in on the appointment. Encourage family to come to help the patient understand what is the diagnosis and what steps are needed next.
We are not totally guilt free, we sometimes don’t follow up on appointments. The hospitals should follow up and find out why the patient isn’t coming to appointments. It could be lack of transport or need for child minding or they are scared.
I’m going to end here, as I’m in pain and have to get some pain relief
I have been erratic in posting things. I apologise if I have any regular readers left. Life and pain get in the way of blogging. I really should make a time and blog every week like I used to do. I always found it peaceful and very satisfying especially when I was sharing other people’s stories.
It is important to share your story to help others in the community but its also cathartic to just release, no judgement, just sharing your views. Let me say what I have been saying since I started to blog. We, Aboriginal and Torres Strait Islander peoples have the lowest diagnosis rates of cancer, but the highest death rates.
We have been left out of the conversation for decades and now we are slowly being encouraged to join in the conversation. We are making sure the conversation is in a language that we understand and we want to lead it for ourselves.
Cancer is the leading cause of death in Indigenous peoples. Responsible for about 23% of deaths. I remind you that the gap between deaths of Indigenous people and non Indigenous people is growing wider. How the hell can this happen in such a rich country like australia?
I will get into that next week. It will give me a reason to make sure I write again.
But I will fill you in on what has been happening with me. A lot of pain, getting the shakes and feeling ill from the pain. I still have the horrid rash on my head from medication, I don’t think the cream is working, going back to the dermatologist next week. Fingers crossed he will have a better solution. My hair is growing back. It’s not so noticeable that I have areas that are shorter than others. I need a hairdresser.
My luscious locks
In other news, I’ve had my vaccinations for covid, all my kids have had theirs. We have moved house, to a much nicer house. My youngest has turned 21
If you have anything you want to share, contact me here.
A big part of NAIDOC is seeing family and community that you don’t always see because of work. I love going to NAIDOC Friday and seeing all the Elders and getting hugs from them, its a special feeling when those old girls reaffirm your place in the community and remind you or tell you that you are doing a good job.
It’s important to reinforce those kinship bonds and find out how they are doing and what else is going on. It’s a Lubly feeling when you’re being hugged and the hugging auntie calls over another Elder and tells them who you are and whose daughter you are and where you grew up and share information. Big bonus when the other Elder knows your mum, as is usually the case with me.
The important sharing of community information from the old girls is another plus. Call it gossip if you want, but getting information from an Elder isn’t petty gossip they tell you as a warning or a nudge for you to do something to help.
COVID has changed everything including how we as a community respond to each other. I am concerned it might be another link in the chain that is pulling apart urban communities. Our urban communities are fluid and always changing, sometimes not for the best, but I won’t go into that now.
NAIDOC our week of pride of letting the wider community know we are here we are proud and deadly will never be the same again. But like everything that has been thrown at us, we will survive and adapt.
We invite you to take part in a research project to understand the needs of carers of Aboriginal and Torres Strait Islander people with cancer. This is an important study because we know very little about the needs of these carers to better support Indigenous cancer patients. We want to identify what carers’ needs are and how we can measure them to improve the assistance they receive from health professionals and support services. Helping caregivers may also improve outcomes for Aboriginal and Torres Strait Islander people with cancer.
The Supporting Our Carers study is being run by researchers at Menzies School of Health Research and other universities. Professor Gail Garvey, an Aboriginal woman, is leading the study.
How can I find out more? If you have any questions about this project, you can contact: Lorraine Bell, Project Manager supportingourcarers@menzies.edu.au PH: (07) 3169 4206
