If you live in rural South Australia, it’s likely you’ll need to travel to a larger city (often Adelaide) for cancer treatment. Having to travel for treatment can bring uncertainty around the costs involved, logistics of getting there and the social and emotional support available.
It’s important to consider, plan for and seek support regarding where to stay and how you’ll get there, time off work, the disruption to your normal routine and being away from family and friends.
This may be overwhelming and as a result, some people who live in rural areas consider putting off or refusing treatment that requires travel. If you’re struggling with the decision and the impact it will have, it’s very important that you have a discussion with your doctor around the decision and completely understand the costs and benefits of all treatment options available to you.
It’s also important to recognise choosing not to travel for treatment may have a significant impact on your health and chances of survival.
Whether you feel uncomfortable talking about something so personal, or you’re unsure how your family and friends will react, sharing the news of a cancer diagnosis can often be hard.
Although you may want to protect the people you care about, telling them about your diagnosis can also bring people closer together. It’s completely up to you how much detail you share and when to share it, but it is unlikely that hiding your diagnosis will work. Sooner or later, your family, friends and surrounding community will find out that you have cancer.
By telling people yourself you can prevent misunderstandings, stay in control of the information that is shared and allow people to be there and support you. At times it may feel like nobody understands what you’re going through, but you can help them understand by talking about it.
You may also find that talking about cancer is not as difficult as you first thought—and by sharing the news, you will help ensure that you don’t have to go through cancer alone.
A cancer diagnosis can be an emotional time for you, your family, friends and community. It may leave you and those around you feeling upset, frightened and overwhelmed. These feelings can sometimes make it hard to understand and remember the information provided to you by health professionals.
You may experience strong emotions from when you first hear the words “you have cancer” and at any stage of your diagnosis.
If you or a loved one are feeling distressed following a cancer diagnosis, we encourage you to contact:
· Cancer Council SA on 13 11 20 for information and support, 9.00 am – 5.00 pm Monday to Friday (excluding Public Holidays).
· The Rural and Remote Mental Health Service on 13 14 65 at any time of the day or night. This service offers trained counselling and support from mental health experts to those in rural and remote communities impacted by cancer.
· Lifeline on 13 11 14 for 24-hour mental health support
When making decisions about your treatment, it is important to remember that there are a number of support services available that can support you when deciding how to get there and where to stay. Being well prepared can help reduce some of the worry and anxiety associated with treatment.
· Information about transport services in your local area can be found here – Transport to Adelaide or treatment centre.
· Information about a range of accommodation options is available here – Where to stay, how to book and what it will cost.
Cancer Care Coordinators/Patient Liaison Nurses may be available in your region to support you with navigating the medical system. Ask your GP or local health team about whether there are Cancer Care Coordinators or Patient Liaison Nurses in your local area.
Rural Liaison Nurses are registered nurses who work within metropolitan (Adelaide) hospitals to assist you with issues, such as accommodation and transport before and during your treatment. They can also help to make arrangements for you when you return home and are available on weekdays between 8.00 am – 4.00 pm, Monday to Friday. You could also ring them if you have any questions before, during or after your visit to the following public hospitals:
Royal Adelaide Hospital: phone (08) 7074 0000
The Queen Elizabeth Hospital: phone (08) 8222 6000
Lyell McEwin Hospital: phone (08) 8182 9000
Flinders Medical Centre: phone (08) 8201 5511
Women’s and Children’s Hospital: phone (08) 8161 7000
Social workers (hyperlink to section Treatment) can help you deal with practical, financial and emotional issues, while you undergo treatment. Social work services are available to all public hospital patients and their families and friends to help them deal with the issues they face.
Depending on where you’re staying and/or receiving treatment, you may be able to access social workers by calling the numbers below:
Flinders Medical Centre: phone (08) 8204 4144.
Lyell McEwin Hospital: phone (08) 8182 9100 and ask for the Duty Social Worker
The Queen Elizabeth Hospital: phone (08) 8222 7250.
Royal Adelaide Hospital: phone (08) 7074 0000 and ask for the social work department.
Cancer Council Lodges: if you’re a guest at one of these facilities, speak to reception about organising a meeting with an onsite social worker. They will do their best to assist you with any financial, emotional or practical difficulties you are facing.
McGrath Breast Care Nurses: this service supports women and families impacted by breast cancer by providing information, clinical care, advocacy, referrals to other health professionals and advice on travel-related issues, wigs and prosthesis and referrals. In some regions, a McGrath Breast Care Nurse coordinates support groups and other activities to help promote health and wellbeing. You can find a McGrath Breast Care Nurse here.
There are a number of things that you can do before you leave home for treatment to ensure you feel well prepared:
- Ask your local GP about the Patient Assistance Transport Scheme (PATS) and get them to fill in the form for you. You will find more information about the scheme and the relevant forms to download here.
- Ask your local GP if there is a Cancer Care Coordinator at your local health service who may be able to help you.
- Speak to your doctor if you’re having trouble sleeping or are in pain.
- If necessary, make arrangements for people to keep an eye on your house, pets, garden etc. while you are away.
- Download the app Gather my Crew to organise family, friends and community support.
- Let any groups or services that you’re involved with know that you will be away for a period of time (e.g. Meals on Wheels, paper delivery, local recreational clubs).
- Consider obtaining ambulance cover if you don’t have it already. If you’re medically required to be transferred home via road or air ambulance, it can be very costly without it. Phone the SA Ambulance
- Cover Customer Service Centre on 1300 136 272 to organise cover.
- If you have children, you may consider letting their school counsellor or classroom teacher know what is happening and offering them ideas about how they can support your child in the school environment.
- As well as writing down all of the medications you’re currently taking (including both prescription, non-prescription or alternative medicines), make some notes about your medical history, including any major prior illnesses or surgeries.
- If you feel well enough, consider doing some gentle exercise, such as walking. Only do as much as you can manage physically and mentally and remember this may be less physical activity than you’re used to.
- Eat a nutritious and balanced diet.
If you are travelling to Adelaide for treatment, it’s important to remember to bring the following with you to assist your health care team:
- A list of current medications (including prescription, non-prescription or alternative medicines)
- Medication (including travel sickness pills, if necessary)
- Medicare, Pension, Health care, Veterans Affairs and Pharmaceutical Safety Net cards
- Photo identification, such as your driver’s license or passport. This is especially important if you’re travelling by bus or air
- A list of important phone numbers of your health professionals, family members and friends
- Money or debit/credit card
- Hospital admissions paperwork
- Patient Assistance Transport Scheme (PATS) form, completed by your local GP
- Private health insurance details
- Notes/letters/reports from your doctors
- Pyjamas/dressing gown/slippers
- Reading material, laptop, tablet/iPad
- Glasses and mobility aids (if required)
- Laundry powder (if you’re staying at one of the Cancer Council Lodges)
After a cancer diagnosis, many people worry about how they will manage the financial impact, especially if they have to travel to Adelaide for treatment. At the same time, a diagnosis may also mean taking time off work, or a loss of income for both you and your partner.
To help manage your financial security, we recommend exploring the following before you begin treatment:
Speak to your employer or boss about taking leave, leave entitlements and flexible working arrangements (if applicable).
Check whether you have Income Protection Insurance. This can be included in your superannuation policy. Find out whether it covers your situation and whether there is a waiting period before you can make a claim.
Contact Centrelink to discuss your eligibility for financial support by phoning 13 27 17 or visiting www.humanservices.gov.au.
Contact SA Health for information on the Patient Assistance Transport Scheme (PATS).
Discuss your situation with your utility providers (e.g. gas, water, electricity), banks and other lenders. They can make allowances for people experiencing financial hardship by extending payment periods and deferring or reducing loan repayments.
Obtain free financial advice by calling the National Debt Hotline on 1800 007 007, 9.00 am – 5.00 pm for free financial advice.
Visit the Money Smart website (LINK: www.moneysmart.gov.au) for a list of free financial counselling services.
Head to the Medicare website (LINK: www.medicareaustralia.gov.au) or phone 13 20 11 for advice on what medical expenses are covered and how much you’ll be reimbursed for.
Speak to a social worker in your treating hospital about your situation. They may be able to suggest financial assistance you may be eligible for.
If you are intending to enter the health system as a private patient, make sure you carefully examine your policy and ensure you’re covered for all aspects of your treatment. It’s important you understand all of the advantages and disadvantages of being admitted through the private system.
For more information click the below links:
· When cancer changes your financial plans – (LINK -https://www.cancersa.org.au/information/a-z-index/when-cancer-changes-your-financial-plans)
· Legal and financial assistance (LINK – https://www.cancersa.org.au/information/a-z-index/legal-and-financial-assistance)
A cancer diagnosis can raise several legal issues. For example, you may need to write or revise a Will, organise your Power of Attorney and deal with your superannuation, insurance, work and compensation. Dealing with these legal and financial issues can sometimes be overwhelming, but fortunately, support is available.
A useful place to start is to read Cancer Council SA’s Legal and Financial Assistance Guide. You can find it here. (LINK: https://www.cancersa.org.au/information/a-z-index/legal-and-financial-assistance)
You could also:
· Speak to your social worker about your legal concerns.
· Call Cancer Council SA on 13 11 20 for information about the Cancer Council SA Legal and Financial Referral Service.
· Head to the Legal Services Commission of South Australia website (LINK: www.lsc.sa.gov.au) for online information about a range legal issues or phone the Legal Helpline on 1300 366 424, 9.00 am – 4.00 pm Monday to Friday.
· Visit your local Community Legal Centres (CLCs). These are not for profit, non-government organisations that provide legal and welfare services. Offices are located in the following rural locations in or near South Australia:
Berri (also covers Loxton, Renmark and Waikerie): Riverland Community Legal Service, phone (08) 8582 2255 or visit www.scjc.com.au.
Broken Hill (also covers Wilcannia, Wentworth, Tibooburra, White Cliffs, Wanaaring and Ivanhoe): Far West Community Legal Centre, phone (08) 8088 2020 or 1800 300 036 or visit https://www.farwestclc.org.au/
Mildura: Murray Mallee Community Legal Service, phone 1800 243 002 or visit http://www.murraymalleelegal.com.au/
Mount Gambier (also covers Keith, Robe, Bordertown, Kingston, Naracoorte and Millicent): Limestone Coast Community Justice Centre, phone 1300 850 650 or visit https://www.communityjusticesa.org.au/
Port Augusta (also covers Coober Pedy, Oodnadatta, Leigh Creek and Nepabunna): Legal Services Commission of SA – Port Augusta, phone (08) 8686 2200 or visit https://lsc.sa.gov.au/ . Women’s Legal Service (SA) – Outreach Service Port Augusta, phone (08) 8221 5553 or 1800 816 349 or visit http://wlssa.org.au/
Port Pirie (also covers Clare, Kadina, Maitland, Peterborough and Port Augusta): Westside Community Lawyers Inc. phone (08) 8633 3600 or visit www.westsidelawyers.net
Link to video – https://www.youtube.com/channel/UCFsw52vCWSdxUnkCdNLNx7A
For further information and support, call 13 11 20 to speak to an experienced cancer nurse who can tailor information to meet your specific informational, emotional and practical needs.