Getting the test results
A booklet for Aboriginal and Torres Strait Islander patients and their families
Book Two
Text & Illustrations by Simone Thomason
Cover artwork by Navada Currie
You can read this booklet below, or download it here.
Getting the Test Results, A Booklet for Aboriginal and Torres Strait Islander patients and their families, is book two in a series of five educational booklets. The booklets are primarily visual teaching tools, designed to meet the comprehension needs of Aboriginal and Torres Strait Islander patients, diagnosed with a blood cancer, and their families. This resource may also benefit all patients, including cultural and linguistically diverse people groups whose main language is not English.
Disclaimer: This booklet is not intended to provide or be a replacement for medical advice. Text and illustrations © Simone Thomason, 2020. Cover artwork © Navada Currie, 2022. ISBN:978-0-6486980-0-5
Acknowledgements: The author would like to express sincere thanks to patients and families, co-workers, colleagues, friends and family whom have supported and provided encouragement throughout the compilation of these booklets. In particular those whom took time out of their busy schedules to review, critique and provide feedback on the booklets at various stages of their development, including: Dr Ferenc Szabo; Dr Akash Kalro; Dr Tina Noutsos; Hayley Williams; Barbara Smith; Robyn Jones; Barbara Cox; Cheryl Hooper; Mary Copp; Jean Murphy; Helen Kennon; Mally McLellan; Joyce Crombie; Tania Wakefield; Myrtle Weldon; Lesley Versteegh; and my husband, Martin Thomason.
The Leukaemia Foundation uses real-life stories to provide education, inspiration and hope. If you have an experience of blood cancer you’d like to share, please email [email protected]
5
When the tests are back the doctors, blood nurse, Indigenous liaison officers and interpreters will explain the results to you and your family.
Your family and decision makers back home will be asked to come together in the community health clinic to talk over the TV link or phone.
The doctors can answer any questions you or your family may have about the results.
6
When your blood cells have changed in a certain way, it is called a blood sickness or a blood cancer.
Cancer causes cells not to work right and will make you very sick.
7
When you have a blood cancer your blood can look like this picture.
This picture shows blood inside two veins:
The top one is healthy blood:
with strong healthy blood cells and the right number of cells.
The second one is a weak blood that has a blood cancer:
The cells have changed shape and there are too many cells, which crowd the blood.
8
Some people have special lumps in their bodies caused by the blood cancer.
These lumps are swollen lymph glands, full of blood cancer cells.
To get rid of these lumps special medicine is given to you.
These lumps are different to other cancer lumps of the breast, lung or gut, which can be cut out of the body.
10
Special medicine called chemotherapy or “chemo” gets rid of the blood cancer cells and allows healthy blood cells to grow again.
Chemo can come in a bag and go into your PICC line or through a drip into your blood. Chemo can also be tablets.
Chemo is given over a few days followed by weeks off for your body to recover.
To heal you, chemo needs to be given many times over many months, this can be as long as a dry season and a wet season. Or 6 or more full moons.
11
Chemo needs to be given in the city hospital by special trained staff. You will need to be away from country for this chemo.
You may need to stay in hospital for the chemo, as you will need special water and other medicines to help you get over the chemo.
You won’t be able to go back to country in between the chemo, because if you get an infection back home, you will get sick very quickly and you will be too far from the city hospital to help you.
12
You may be able to have your chemo in the hospital day unit.
You will stay in a hostel in the city with a family member and travel into the day unit by bus.
Chemo is given over a few hours, every few weeks.
You will have chemo over 6 months or more, same time as a dry season or a wet season.
13
The hospital team will talk with you and your family – over the TV link or phone and explain about the chemo.
Chemo is the way to heal your body from this cancer.
Decision Makers: if an Elder or someone from your family are the decision makers for you, then the doctors will ask them to decide for you if you can have the chemo.
Or the doctors will ask you to decide about having chemo.
14
You will need to talk with your family about staying for the chemo.
The chemo will need to start very soon as your blood cells are changing quickly, and your body will get sick soon without the chemo.
15
If you and your family decide not to have chemo.
You and your family will need to know that this blood cancer is a strong sickness.
Without the chemo it will cause you to pass away or ‘finish up’ over the next weeks to months.
If you have no chemo, the doctors will arrange for you and your family to return back home to country.
17
If you and your family agree to have chemo you will need to sign your name on a special piece of paper, called a Consent Form.
This means you give your permission to the hospital staff to give you chemo.
A consent means, you understand what chemo is, how it can heal you and how it can also change your body for a short while, whist you are being treated for the cancer.
Please see Book Three for more information on chemo.
A family member can stay in hospital with you, or in a hostel nearby and help keep you strong, when you have chemo.
18
There will be many people who work in the hospital to help you and your family get through your chemo.
The team know it is not easy for you being away from your home and country.
Please tell us if you or your family have any worries, so we can help you best.
19
It is normal to ask “why me?”
Anyone can get a blood cancer, you have done nothing wrong, do not feel shame.
The doctors and nurses do not know why you have got this cancer.
They do want to heal you so you can get well and return back home.
20
Getting you better is a big job.
The chemo is one way to get you better and make you strong.
Having family and friends visit or talk on the phone is the other way to help you heal and keep you strong.
22
The doctors will ask you and your family to see if there is a way to excuse you from the ceremony.
Please talk to the hospital workers if this is a worry for you.
You can talk to the ILO, Church Minister, Interpreter, Blood Nurse or Social Worker.
23
The chemo will lower your white blood cells which fight germs and infection and this can make your teeth sore.
You will need to see the hospital dentist for a check-up, before starting chemo.
24
Some chemo can make it hard for you to have children in the future.
To help you with this you may need to visit a family planning or fertility doctor before chemo.
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Last updated on May 23rd, 2023
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.