What happens next?
We can guide you through the practical decisions that need to be made in the difficult time after diagnosis.
The time immediately after a diagnosis is often one of great anxiety, distress, uncertainty and confusion. You will probably feel like your life has been completely turned upside down.
In the midst of this, urgent decisions may need to be made regarding treatment, finances and other practicalities, and this can be very stressful.
Remember that you are not alone. The Leukaemia Foundation has highly-trained Support Services staff who can help you explore these issues and assist you with helpful information and support.
What are your treatment options?
Beginning treatment can be a confronting and confusing time and you may feel that you are being bombarded with unfamiliar medical terms and information. Your treatment options will vary depending on your particular disease, whether it needs treatment immediately or whether there is time to wait, and other factors which will be explained to you by your specialist. Often your specialist will outline a protocol for treatment which will extend over a period of time and then be reviewed at the end of that period. Depending on blood tests and other kinds of tests, the next phase of the treatment protocol will then commence. Some diagnoses require treatment that will extend over a long period of time.
Do you have to travel to another city for treatment?
People who live in regional, rural or remote areas who are diagnosed with blood cancer may have to travel immediately to a major city for specialist treatment. They can apply for financial assistance with accommodation and transport through the government scheme in their state, as follows:
- Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS), New South Wales
- Patient Transport Assistance Scheme (PTAS), Victoria
- Patient Assisted Travel Scheme (PATS), Western Australia
- Patient Assistance Transport Scheme (PATS), South Australia and Northern Territory
- Patient Travel Subsidy Scheme (PTSS), Queensland
- Patient Travel Assistance Scheme (PTAS), Tasmania
For further information about this support, contact the Patient Travel Clerk at your local hospital, or the accommodation coordinator at the Leukaemia Foundation.
Where possible, the Leukaemia Foundation provides free accommodation for people when they go to major metropolitan centres for specialist treatment, and their family. In many areas, a complimentary transport service is also available. For more information or to book the Leukaemia Foundation’s accommodation or transport, phone 1800 620 420.
How will your family be affected?
The ripple effect of a blood cancer diagnosis can be enormous for your whole family. Adapting to change and loss is hard for most of us, and not only do we need to consider the loss of the individual’s health but also the many other losses that occur as a flow-on from diagnosis. Some of the losses patients and their loved ones commonly face include loss of life as we knew it, loss of home, loss of income, loss of lifestyle as we knew it, loss of friendships, loss of routine, loss of familiar surroundings and loss of social networks for support. While many families discover an inner strength and resilience, feelings of vulnerability, fear, sadness and resentment are also common. Our Support Services staff are available to nurture and guide you through these trying times – contact us on 1800 620 420 or email us at firstname.lastname@example.org.
Are you able to continue working?
Some patients with a blood cancer cannot participate in full-time work commitments due to a range of side effects including fatigue, a compromised immune system and a general feeling of being unwell. Patients need to review their capabilities and seek appropriate support and clarity regarding their working roles.
Our first step is to take a quick “financial stocktake”. Depending upon your work history and the type of work you do, you will need to assess whether or not you are physically able to continue with that type of work, and what available sick leave, long service leave and other leave entitlements are available to you. Then, once you are able to determine what entitlements are available, you can make the appropriate application to Centrelink when you are no longer being paid by your employer or from other sources. It is possible that your superannuation fund provides you with disability benefits which you can claim if you cease work, and can offer the much needed financial support to help you focus on your health.
Last updated on June 8, 2020
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.