Caring for someone with mesothelioma
You may be reading this booklet because you are caring for someone with mesothelioma. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral, such as a counsellor or your doctor.
Many cancer support groups and cancer education programs are open to carers, as well as people with cancer. Support groups and programs can offer valuable opportunities to share experiences and ways of coping.
Support services such as Meals on Wheels, home help or visiting nurses can help you in your caring role. You can find local support services, as well as practical information and resources, through the Carer Gateway. Call 1800 422 737 or visit carergateway.gov.au.
There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Phone 1800 242 636 or visit carersaustralia.com.au for more information and resources.
Mesothelioma support organisations often place particular emphasis on the wellbeing of the carer. You can find a list of these organisations on page 72. You can also call Cancer Council 13 11 20 or visit your local Cancer Council website to find out more about carers’ services and to get a copy of the Caring for Someone with Cancer booklet.
You may find this checklist helpful when thinking about the questions you want to ask your doctor about mesothelioma and its treatment. If your doctor gives you answers that you don’t understand, ask for clarification.
- Whattype of mesothelioma do I have? How far has it spread?
- What treatment do you recommend and why?
- What is the aim of the treatment?
- Willmy treatment be given by a mesothelioma specialist?
- How do I get a second opinion?
- Are there other treatment choices for me? If not, why not?
- Arethere any clinical trials of new treatments that I could join?
- What are the risks and possible side effects of the treatment?
- Howlong will the treatment take? Will I have to stay in hospital?
- How much will treatment cost? How can the cost be reduced if I can’t afford it?
- How will I know if the treatment is working?
- Whatif I decide not to have any treatment?
- Who can I see if I’m worried between my appointments?
- Will I have pain from the mesothelioma? What will be done about this?
- I’m worriedabout what will happen to me: who can I talk to about my feelings?
- Will others in my family also be at risk of mesothelioma?
- MightI be able to claim compensation for the illness? Who do I contact about this?
Further information and support
Cancer can affect every area of your life. Support is available to help you with practical and financial issues, as well as the emotional aspects of the experience.
Practical and financial help
There are many services that can help deal with practical or financial problems caused by mesothelioma.
Benefits, pensions and programs can help pay for prescription medicines, transport costs or utility bills. Home care services, aids and appliances can also be arranged to help make life easier. Ask the hospital social worker which services are available in your local area and if you are eligible to receive them.
If you need legal or financial advice, it is important to talk to a qualified professional about your situation. Cancer Council offers free legal and financial services in some states and territories for people who can’t afford to pay – call 13 11 20
to ask if you are eligible. You can also ask for a copy of Cancer
and Your Finances for information on managing finances, superannuation and work issues.
For information and advice on applying for compensation, it is best to contact a specialist lawyer who has extensive experience with asbestos claims. See page 64 for suggestions on finding a specialist asbestos litigation lawyer. You may also want to read the rest of the Making a claim chapter (pages 62–67) for an introduction to the compensation process.
Talk to someone who’s been there
You and your carers may find it helpful to make contact with other people who have had similar experiences. You may feel supported and relieved to know that others understand what you are going through and that you are not alone.
People with mesothelioma may be able to join a telephone support group facilitated by a trained counsellor or be put in touch with someone else who has mesothelioma. There are also support groups specifically for carers. Talk to your nurse, social worker or Cancer Council 13 11 20 about what is available in your area, or contact one of the mesothelioma support organisations listed on the next page.
Another option available at any time is to visit an online forum such as the Cancer Council Online Community (see below).
Mesothelioma support in Australia
Bernie Banton Foundation 1800 031 731
New South Wales
Asbestos Diseases Foundation of Australia (ADFA)
Asbestos Diseases Research Institute (ADRI)
Asbestosis and Mesothelioma Association of Australia (AMAA)
Asbestos Disease Support Society (ADSS)
Asbestos Diseases Society of South Australia (ADSSA)
Asbestos Victims Association of South Australia (AVA)
1800 006 196
02 9767 9800
1800 017 758
1800 776 412
1800 157 540
08 8212 6008, 1800 665 395
Asbestos Free Tasmania Foundation asbestosfreetasmania.org.au
Asbestos Council of Victoria/ Gippsland Asbestos Related Diseases Support (ACV/GARDS)
03 5127 7744
Asbestoswise 03 9654 9555
Asbestos Diseases Society of Australia (ADSA)
08 9344 4077, 1800 646 690
Reflections through Reality reflections.org.au
Other useful information and support Australian
Cancer Australia canceraustralia.gov.au
1800 242 636
Department of Health health.gov.au
My Aged Care
(including how to find help in your home and ACAT assessments)
1800 022 222
1800 200 422
Palliative Care Australia palliativecare.org.au
Asbestos Safety and Eradication Agency
1300 326 148
Australian Asbestos Network australianasbestosnetwork.org.au
Australian Mesothelioma Registry
1800 378 861
Lung Foundation Australia
1800 654 301
American Cancer Society cancer.org
Cancer Research UK cancerresearchuk.org Macmillan Cancer Support (UK) macmillan.org.uk National Cancer Institute (US) cancer.gov Mesothelioma Applied
Research Foundation (US)
Mesothelioma UK mesothelioma.uk.com