Now I’ve finished week four, I’m excited that it’s only two weeks to go.
One of the things that makes treatment good is having my own treatment playlist going. I didn’t realise that I could share Spotify playlist, until starting the treatment.
My list is shared on the hospital media, so I don’t have to worry about forgetting my phone. It makes it easier and less stressful to have my own smooth music playing.
I’m sharing it here with you, I hope you enjoy it as much as I do.
I’m alarmed at this. The number of Aboriginal and Torres Strait Islander peoples dying from cancer, should not being increasing.
Something is seriously wrong in the medical system when the number of deaths from cancer is on the rise. We need to fix this quick, to stop these deaths.
In a country like australia with so many advances in medicine, why are my people still dying. I’m glad that Menzies is looking into what has gone wrong, so it can be rectified.
So now I am halfway through my treatment. 3 weeks down, and three more weeks to go. I am pleased to report that I have had no major side effects, just really tired, but that’s minor compared to what could be happening.
It’s a bit tiring when the travel time is longer than the treatment. It takes me about 30 minutes to get into the hospital for a treatment that takes 10 to 20 minutes. But it’s getting to the end stages and that is exciting.
The waiting room is decorated by some lovely artwork from a school, and it makes me smile
I have my mask at the ready and I’m pleased to say that I haven’t felt ill during treatment. One of my fears had been that I end up vomiting in the mask as I spin around.
I’m looking forward to decorating my mask at the end of treatment, It will look like a warrior woman’s mask
I arrived with my appointment card in hand, and was told to report to the nurses as this was my first time. They checked and double checked all my details and showed me the rooms that I would be getting my treatment, and the designated waiting rooms for each. I had my playlist for treatment and the staff seemed to like my playlist. It was over and done with in a very short time
The next time, my playlist was playing as I entered the room, yep, they did like my playlist. But not all days were easy. I had on one particular day a nurse ask me what she, as a white woman with privilege can do to help in these troubled times. The wording is strange as she doesn’t mention what the troubled times and come to think of it, what are these troubled times? She has the luxury of only being concerned because of George Floyds murder. She doesn’t have to think about Black Deaths in Custody. Nor does she have to worry about a black son who could be killed by a police officer
I answered her question by encouraging her to read, recommending some websites and books. But really should I have had to do that? I’m the patient and I have to spend my treatment and healing time helping someone, who could have just googled to find information.
This is one of the problems that Aboriginal women face, the constant educating of the white woman. We do it because we want our kids to have a better healthcare system. We do it to protect our kids, to break down the barriers of racism.
I can’t see a white woman calmly helping me if I asked about white issues. She would tell me that she was the patient and the number one priority. Yet we don’t get the same respect
Not many days until I start treatment. This week I’ve had the dental appointment to check on how my teeth are and the discussion with the doctors as to removing a tooth or not.
I had a fun package from Look Good Feel Better, a confidence package that has makeup and such like in it.
I think this is a wonderful idea, because you really feel like shit when you go through treatment, and having some nice makeup to make you feel pretty is a really nice thing
The brands are good ones
The colours are nice, but a bit concerned that the foundation is Classic Beige. I don’t know if my colour is fading or they don’t worry about the Dark Complexion tick. Oh well, maybe I can go out in white face.
I’m preparing for radiation treatment. I know I had said I wasn’t going through that again, but have been convinced by how targeted treatment works with less drama.
So now I’m in preparation stages, I have bought extra toothbrushes, all extra soft, mouthwash (in case) and toothpaste. Have stocked up on sorbolene cream, have tinnea cream, and honey. I like honey for the cracks in the side of the lips. I have plenty of salt for rinsing my mouth and helping to keep it healthy. A gentle body wash, that doesn’t cost a fortune, nothing scented.
Have started on my playlist, music to play during treatment, enough for the 6 weeks. Have got some extra music, thanks to Karen Wyld from Twitter, she gave me some really great suggestions. I also have organised my playlist of meditation sounds. I love the sound of rain on the roof, so I play that a lot when I’m wound up. I have some audio books lined up, in case I am not able to read without a headache.
This week I intend to make lots of soup to freeze and store in the freezer for me, so that I can have healthy food, and not depend on my rats, who might just decide that maccas is the go. I am going to make some pea and ham. Curry soups are a definite must have for me, so some cauliflower and potato curry soup. Of course the old standbys like tomato and vegetable soup.
I have to get the baby shampoo, I’m a bit annoyed that my hair is still growing after having it shaved off last year, so I’m going to have a bald patch at the front, where the treatment is going to target Charlotte (the tumour). It’s just not fair that my hair seems to suffer all the time from this, but I guess it’s just one of those things.
I keep wondering if I am leaving things off my list, but I hope I have got everything that I need. I hope that others will help me and tell me what I might have forgot to put on my list.
Today was my three monthly check in. Show up at the hospital at 6:45 for a 7 O’clock MRI. I was first in a line up to get in the hospital. Temperature checked, questions asked about my health and if I had been overseas or interstate in the last 14 days. I was concerned with the line up, because it seemed like some people didn’t understand social distancing or realise that the X on the ground were to mark where we should stand.
The elevators were a bit tricky, its fine if you work at the hospital, but for those of us who don’t we didn’t know that it was two per car. Maybe a sign out the front would have warned us. I got into an elevator car and walked to the back corner, two hospital staff jumped in and said that we had too many. I was there first so I thought one of them would get out, but no. So I huddled in my corner saying something about I was here first and am not going to be moved around. Maybe that was a bit petty of me, but sheesh, they could of stopped their conversation and split up or even let another person in. So the three of us rode up, luckily I was only going up one floor.
The reception at the MRI area was lovely, no handing her the letter, just show it and take it back. Stand on the X and wait. No paper work given to me, apparently that was for other staff to print off and give to me. This is just making more work for other staff, but I guess in these COVID19 days you just follow the rules.
My name was called and I went in for my MRI, It was quick, but it usually is when I go in so early. No staff had on masks, which I found comforting as they can look bloody scary when you have to deal with strange people with masks.
I had my cannula put in so that I can have contrast, again staff were so lovely and nice, filled out my questionnaire and away I went.
The machine is my friend, I have been in this thing so many times over the years. Every time I go, I choose the music to play. I usually want something that I know so that I can keep focus when the noise builds up. Today it was Wagner, just to put me in the right frame of mind for the rest of the day
This is an update on the Queensland Aboriginal and Torres Strait Islander Cancer Strategy Forums.
Thank you to Professor Gail Garvey and Dr Lisa Whop for this information. I have copied and pasted the PDF that was sent o
This is a summary of the key discussions across both forums, that will be used to inform and shape the strategy
Queensland Aboriginal and Torres Strait Islander Cancer Strategy: Summary of Consultation Workshops The Menzies School of Health Research project team thanks all participants who attended consultation workshops for the development of the Queensland Aboriginal and Torres Strait Islander Cancer Strategy in Brisbane on 28th November and Cairns on 9th December 2019. We appreciate your generous contribution of knowledge, innovative ideas and time. This document provides a summary of the rich feedback we received from over fifty participants. The people who took part represented diverse perspectives and organisations and came from urban, regional and remote parts of Queensland. They included cancer survivors and carers and people working in Aboriginal and Torres Strait Islander Controlled Health Organisations, Aboriginal and Torres Strait Islander community organisations, primary health care services, Hospital and Health Services, palliative care services, universities, cancer control peak bodies, Cancer Australia and Queensland Health. Project overview The aim of this project is to develop a Cancer Strategy for Aboriginal and Torres Strait Islander peoples in Queensland. The long-term goal of the Strategy is to reduce cancer incidence and mortality rates, and improve survival rates and quality of life for Aboriginal and Torres Strait Islander people in Queensland. In developing the Strategy, we will:
Set out a high-level roadmap to achieve the goal of improved cancer outcomes for Aboriginal and Torres Strait Islander people in Queensland
Build a shared understanding of the current landscape of cancer for Aboriginal and Torres Strait Islander people in Queensland
Identify priorities for action, including timeframes and areas of responsibility. Purpose of the consultation forums The project team consulted with stakeholders to identify the priority issues and gaps across the cancer continuum that impact Aboriginal and Torres Strait Islander people in Queensland, and gathered ideas about solutions to address these. This information will shape the Strategy. What we heard We overwhelmingly heard that there is great diversity in Aboriginal and Torres Strait Islander communities across Queensland and in the issues facing people around cancer. The Strategy must recognise this diversity and be relevant to local Hospital and Health Services and other local health care services. We also heard that improving cultural safety in health care services and addressing institutional and individual racism is a top priority. The most important barriers to overcome Participants at the consultation forums identified the following barriers as the most important to overcome: • Lack of easily accessible and culturally appropriate information about cancer for consumers and carers, including about how to reduce risks, symptoms to look out for, what happens during diagnosis and treatment, and what is palliative care. • Racism, discrimination and a lack of culturally safe health care providers and other staff in mainstream health care services. • Many Aboriginal and Torres Strait Islander people don’t feel confident to ask health professionals questions and demand their health rights.
• There is stigma and a lack of understanding about cancer in the Aboriginal and Torres Strait Islander community. • Cultural needs and beliefs are often not respected or taken into consideration, and there is a need to better support the social and emotional wellbeing of people with cancer and their families and carers. • Aboriginal and Torres Strait Islander people living in isolated and remote areas have poor access to services across the cancer continuum. • Significant practical barriers to accessing services including financial barriers, distance from home and family supports, transport challenges, unsuitable accommodation, limited support to return to country, lack of practical information about where and how to get services and equipment. • Data sets do not link up and are not always complete and accurate, and data systems are designed around needs of service providers rather than consumers. Potential solutions – what you told us Forum participants shared many excellent suggestions to address the major barriers. Below is a summary of the most commonly raised suggestions. • Improving the knowledge and understanding of people working in the health system about meeting the needs of Aboriginal and Torres Strait Islander people, families and communities. • Providing person and family-centered care that facilitates cultural and spiritual needs; improving the cultural safety and sensitivity of all staff; not tolerating racism in health care services. • Improving health literacy using diverse community education and engagement methods, for example engaging with local community champions such as cancer survivors; promoting and facilitating self-care such as pamper days combined with screening education; busting cancer myths and misconceptions; developing locally tailored resources and kits such as video story telling; conducting routine health checks and awareness-raising; encouraging yarning groups, and establishing art programs for people to tell their story. • Increasing the number of Aboriginal and Torres Strait Islander people working in mainstream health services and building cancer knowledge within the health workforce, e.g. Aboriginal Health Workers could be utilised much more in the cancer space, by having cancer-specific positions. • Providing greater financial and other practical support to ensure consumers and carers can access appropriate transport, accommodation, equipment, allied health and financial and social supports. • Creating service models that reduce the need for patients to travel and manage multiple appointments, such as telehealth consultations, one-stop-shop services and increasing access to specialist services in rural and remote areas. • Improving data sharing and reporting back to local communities and services to support local control of health care priorities and solutions. • Improving coordination of care and information sharing. For example: a comprehensive and timely discharge plan provided by the treating doctor to the GP; regular communication between GPs, hospitals, specialists and pharmacists in order to best support their patient; provision of an easily accessible point for information and assistance to navigate the system and understand medical jargon, such as a nurse navigator; planning ahead to ensure an Aboriginal and/or Torres Strait Islander Liaison Officer or other appropriate support person is available during discussions with patients and carers about diagnosis and treatment; ensuring patients have good follow-up and awareness about risks of remission; and, providing the patient with clear documentation of their healthcare journey. Next Steps • Feedback gathered through the consultation forums will be used to develop the Cancer Strategy for Aboriginal and Torres Strait Islanders in Queensland. The draft Strategy will be reviewed by the members of the Aboriginal and Torres Strait Islander-majority Project Advisory Group. • The consultation forums clearly identified that stakeholders in every part of Queensland’s cancer control sector will have an important role to play in implementing the Strategy. If you have any additional feedback or ideas about potential solutions please contact Lisa Whop or Kate Wilkinson on the contact details below. We welcome your ongoing contribution to this important project. Lisa Whop, phone (07) 3169 4221 or email lisa.whop@menzies.edu.au Kate Wilkinson, phone 0404 161 232 email kwilkins@vcs.org.au
Menzies is looking for carers of Indigenous people with cancer from western regions of Queensland to help them look out how carers cope and what is needed to help carers take care of their family or friend with cancer.
This is important, my kids have been my main carers for the past ten years, we have done the take care of mama, then go off to school, rush home to take care of mama. This has put a strain on my kids but they have soldiered on through it.
Last year my youngest was my responsible adult, she had to go every where with me and make sure I didn’t mindah too much. Being a carer is so important. My son took a year of university to care for me. We need to make sure our carers are taken care of and that they are not suffering under the strain of taking care of others.
So please if you or anyone you know fits the category of caring for an Indigenous person with cancer and they live from about Toowoomba going west, or anywhere west in Queensland contact Brian, this study could change how carers are able to get help for themselves and find out what they need.
Contact Brian on 0422763882
There will be a Woolies voucher given for your time
Cancer Australia is inviting the public to have their say about the Lung Cancer Screening enquiry through
On 1 August 2019, the Minister for Health, the Hon Greg Hunt MP invited Cancer Australia to conduct an enquiry into the prospects, process and delivery of a national lung cancer screening program in Australia.
The enquiry is being held to investigate the feasibility for a national lung cancer screening program for people at high risk of lung cancer. This will include a review of national and international evidence on the benefits and harms of lung cancer screening, target population groups, and the design and effective delivery of a national lung cancer screening program in the Australian setting.
Early diagnosis of lung cancer is critical to improving outcomes, with more than 50% of lung cancer cases being diagnosed at an advanced stage. Advanced stage at diagnosis is associated with poorer survival. Lung cancer is the leading cause of cancer death in Australia, accounting for nearly 1 in 5 of all cancer deaths.
Cancer Australia will provide a report on the Lung Cancer Screening enquiry to the Minister by October 2020.
