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Living with advanced mesothelioma

Men and women discussing mesothelioma

This page is about living with advanced mesothelioma. There are sections about

 

A quick guide to what's on this page

Living with advanced cancer

Finding out that you have been diagnosed with an advanced cancer, or that your cancer has come back, can be devastating. Having advanced cancer means your cancer cannot be cured, but there are treatments available that can slow your cancer down. You will need to talk very carefully to your own specialist to understand what the diagnosis means for you, what treatment is available, and how treatment may help you.

It is important that you feel as well as you possibly can. If you haven't already been referred, ask your hospital doctor or GP about a specialist palliative care team. Specialist cancer nurses can help control your cancer symptoms and improve the quality of your life. If you are having any physical difficulties in coping at home your specialist nurse or a district nurse can talk to you about ways you may cope more easily.

If you are having problems with breathlessness, there is information on coping with this in the ‘living with lung cancer’ section. And the ‘death and dying’ section has information about coping with cancer symptoms, strong emotions and other difficulties that you may have during the last few months of life. There is also information for carers, friends and relatives.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with mesothelioma section.

 

Your feelings

Finding out that you have advanced cancer when you are diagnosed, or that your mesothelioma has come back can be devastating. You probably feel confused and find it difficult to take anything in that is being said to you.

At first, you are likely to experience a whirl of powerful emotions. Anger, fear, and sadness may come one on top of the other, leaving you exhausted. You may think you should be talking all this through with your partner, other family members or close friends. But you may find this impossible to do.

Give yourself time to begin to come to terms with what you have been told. You may find that it can help to talk to other people about how you are feeling. But not necessarily straight away. Some people need to begin to put their own thoughts in order before they can talk to anyone else. Some feel they need to talk straight away. Trying to talk things through helps them sort out their own thoughts and feelings. There is no right or wrong way to handle this.

 

What advanced cancer means

Having advanced cancer means that the cancer cannot be cured. But there are usually treatments available that can slow your cancer down. It may be possible to shrink it down to reduce symptoms. There will also be medicines available to help control symptoms and help you to feel as well as possible. You can talk to your own specialist to understand

  • What the diagnosis means
  • What treatment is available
  • How treatment can help you

Knowing what to expect can help to reduce anxiety. Talk to your doctor or nurse about your illness and treatment. It is important that you know all the options. You are likely to feel very anxious and uncertain about the future. And there may be days when the cancer is the only thing you can think about. But many people say that a diagnosis of advanced cancer helps them to appreciate ordinary everyday things much more than they did. You have an opportunity to work out your priorities. Think about what is important to you and what isn't. There may be things you have always wanted to do.

Having advanced cancer doesn't mean you have to abandon all your plans. You may have to adapt some and one or two may be less realistic than they were. But you may also feel it is time to get round to something you'd always wanted to do but never made the time for.

 

Coping with everyday life

It is 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 and can help you work through some of the emotions you may have.

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

Specialist cancer nurses have information about charitable funds who can provide grants for mobility aids, heating costs, help with holidays, and many other household expenses related to your illness or quality of life. They also have information about benefits available to you or to someone helping to care for you.

If you are having problems with breathlessness you can find information about coping with this symptom in the breathlessness and cancer section.

Our dying with cancer section gives information about coping with cancer symptoms, strong emotions and other difficulties that you may have during the last few months or weeks of life. There is also information to help and support carers, friends and relatives of someone who is dying.

If you would like more detailed information contact one of the organisations on our mesothelioma organisations list. They will be happy to help. They often have free factsheets and booklets they can send to you. They may also be able to put you in touch with a support group. Our counselling section gives details about how counselling can help and how to find a counsellor in your area. We also have a mesothelioma reading list with details of helpful booklets and leaflets.

You can also contact our cancer information nurses. They would be happy to help.

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Updated: 24 November 2015