Living with advanced mesothelioma

Unfortunately mesothelioma can be difficult to treat. It is often diagnosed at an advanced stage. Or it can come back or start to grow again after treatment.

Treatment aims to control the cancer for as long as possible and keep your symptoms under control.

How you might feel

Finding out that you can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal to not be able to think about anything else.

Lots of information and support is available to you, your family and friends. Some people find it helpful to find out more about their cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

what your diagnosis means
what is likely to happen
what treatment is available
how treatment can help you
what the side effects of the treatment are

Who can help?

You can get emotional and practical support through your hospital, local hospice and GP surgery. You can also get help from charities and support groups.

Palliative care

It‘s important that you feel as well as you possibly can. You can ask your hospital doctor or GP to refer you to a specialist palliative care team. They can help to control your cancer symptoms and improve the quality of your life physically. Many members of these teams have counselling training. So they can help you work through some of the emotions you may have.

Support at home

Your specialist nurse or a district nurse can talk to you about ways you may cope more easily if you have physical difficulties in coping at home. They can help you to get simple mobility aids, such as a seat to help you get in and out of the bath. They can also tell you how to get changes made to your home, such as safety rails fitted in your bathroom.

Help with breathlessness

There are breathing exercises you can do and other ways of coping with breathlessness.

Support organisations and publications

Mesothelioma and cancer support organisations can give you good information and help you connect with other people with advanced mesothelioma. Books and free factsheets are also available.

Talking about advanced cancer

Your friends and relatives might be able to support you and talk to you about your cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family.

Counselling might help you find ways of coping with your feelings and emotions. You can call the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Planning

Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.

Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.

You can talk to your doctor about managing your treatment around your plans. Or if you can have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.

Coping financially

You might have extra expenses due to the cancer. Your specialist nurse or GP can help you get grants for heating costs, holidays or household expenses related to your illness.

Ask to see a social worker. They can let you know which benefits or grants you can claim and help with the claiming process.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.

You can call the Cancer Research UK information nurses if you have questions or want to talk about coping with advanced cancer. Call free on 0808 800 4040, from 9am to 5pm, Monday to Friday.