Living with mesothelioma

Friday 30 September, 2011

Reviewed: Dr Malcolm Feigen, Senior Radiation Oncologist, Austin Health; Dr Paul Jenkinson, GP; Mary Duffy, Lung Nurse Specialist, Peter MacCallum; Prof Bill Musk, Respiratory Physician; Kathryn Turner, Social Worker, Slater & Gordon Lawyers ; Jane McDermott, Principal, Maurice Blackburn Lawyers; Asbestos Diseases Society of Victoria

On this page: Insurance superannuation and loans | Returning to work after treatment | Unfair treatment at work | What if I can no longer work? | Support for carers

Cancer is a life-altering event. It often affects the way people see themselves, their bodies, and those around them. Priorities may change and people may seem to treat you differently. Many people say having cancer takes them on a journey involving a lot of loss and change in their life: loss and change that is often very difficult to cope with and causes grief.

You are likely to be in shock when you first hear the words ‘cancer' or ‘mesothelioma'. You may not be able to believe it at first. (‘It's not me: they've got the wrong person'). You may find it very hard to take in the information you are being given. This is normal. There is a lot to understand and many things will be so new to you that you cannot take everything on board at once.

Along with trying to deal with feelings of anxiety, fear and anger about having cancer and its treatment, you may also have to cope with practical issues such as:

  • making a compensation claim for the disease
  • other money matters
  • going back or not returning to work
  • looking after your home, children or grandchildren.

Coping with all these issues can be overwhelming. How can you possibly find the strength and time to manage? Most people need help in this situation. However, many people don't ask for it. They may feel it is a weakness to admit they need help or they don't want to bother people with their problems. Research has shown this is especially true of people with mesothelioma. They are often very stoic and find it difficult to discuss their needs, especially their psychological needs. Men generally find it more difficult to seek help during illness than women do. 

This section talks about some common problems and suggests where you may be able to seek help.

Insurance, superannuation and loans

Many people with cancer feel they want to get their ‘money matters' in order. This could mean talking with a superannuation fund, wanting to get life insurance or managing your income to provide for yourself or your family.

Getting new insurance (life, income cover or travel) may be more difficult because you have cancer. You will need to provide your medical history for many insurance policies. Generally a mortgage is associated with some kind of insurance so you're likely to have to let the financial institution know that you have cancer.

Many people don't know that they can claim disability benefits from their superannuation or insurance. If your working life is cut short, you probably won't have enough superannuation. Extra disability benefits will help you.

This is because your superannuation is designed to last for an ‘average' period of retirement, not longer.

The Superannuation and Insurance Advice Service is a free service. It has been set up to provide legal advice to people with disabilities. The advice is given by volunteer lawyers. The service is based in Melbourne. Appointments can be made by calling the Chronic Illness Alliance on 1800 180 182.

You may wish to ask lawyers who have expertise in superannuation and insurance for advice or see a financial counsellor. To find a lawyer who specialises in this area, call the Law Institute of Victoria Referral Service on 9607 9550.

Returning to work after treatment

You may have stopped work before or during your treatment. Having an advanced stage cancer is likely to make it difficult to return to work. This can be very hard to accept.

Some people may be able to return to work. This is a big commitment and may take a lot of courage and patience. Whether or not you return to work will depend on several factors such as:

  • the stage of your disease (how far advanced your cancer is)
  • which treatments you had and how effective it was
  • how well you feel
  • whether or not you have to return to work because of personal choice,
  • income and family needs
  • whether your previous employer treated you unfairly.

If you are able to return to your job, or start a new one, and people are aware that you have had cancer treatment, you may face some challenges. Often, the more relaxed and open you are about your cancer and its treatment, the more likely it will be that your co-workers respond to you in a way that feels right for you. If you are having a lot of trouble settling back into your work life it may help to talk with a counsellor. Some workplaces will have someone on site who you can talk to. If not, call the Cancer Council Helpline on 13 11 20.

Unfair treatment at work

Some people are forced to leave their jobs because of a cancer diagnosis or treatment. If you believe you have been unlawfully discriminated against because of a diagnosis of cancer you should seek legal advice immediately.

You can obtain free initial advice from the Disability Discrimination Legal Service. This is a service that specialises in disability discrimination law. Contact the Chronic Illness Alliance for further information. 

You can also contact the Equal Opportunity Commission of Victoria or the Human Rights and Equal Opportunity Commission (Commonwealth). 

What if I can no longer work?

If you can no longer work, this can be very stressful. You will probably still need a regular income to pay for bills, the mortgage or rent, and other living expenses.

It's important that you get the support and advice that you need. If you are waiting on a compensation claim this may not come through for a while. You will still need an income to live on. The Department of Human Services can help with financial and practical matters (1300 650 172). For information on Commonwealth Government disability, sickness and carers payments, call Centrelink on 13 27 17.

If you were working at the time you were diagnosed with mesothelioma your past loss of wages and future loss of earning capacity will form part of your legal claim. Starting the compensation process will allow some relief from these concerns.

Claiming compensation and sorting out other benefits and money matters can be quite complicated for someone diagnosed with mesothelioma. To be sure you get the best deal for your situation you may find it useful to see a financial adviser to discuss your financial concerns. (You may also hear them called a financial planner or consultant or sometimes a financial counsellor.) Your bank may have a financial adviser you can talk to. Or look for an independent financial adviser in the telephone book or on the Internet.

For financial counselling you may also like to visit the websites of the Commonwealth Financial Counselling Directory or the Wesley Mission financial counselling service.

Support for carers

The person caring for you may be able to get financial assistance such as a non-means-tested carer allowance or concession cards from Centrelink.

Many people caring for someone with cancer don't seek assistance, thinking they would not be eligible for help or they may be put off by the paperwork! Don't avoid finding out because you feel embarrassed about getting financial assistance. This is money that you may be entitled to and has been specifically allocated by the government to help sick people and their carers. You are saving the government money by caring for someone at home.

Carers can contact the following organisations for more information:

  • Commonwealth Carer Resource Centre: 1800 242 636
  • Centrelink: 13 27 17 (the Centrelink Multilingual Service is on 13 12 02)
  • Cancer Council Helpline: 13 11 20 for financial assistance information.
  • For further information about caring for someone with mesothelioma see page 90.

Support with childcare and home duties

You may be eligible for help with childcare costs: call the Family Assistance Office on 13 61 50.

Local councils provide a range of community and in-home services, including meals on wheels, house-keepers and respite care. Telephone your council (listed by council name in the White Pages).

For more information about practical and financial support, contact your local hospital, community health centre or the Cancer Council Helpline on 13 11 20.

 

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