Living with mesothelioma
You might have lots of emotions to cope with after a mesothelioma diagnosis. And mesothelioma and treatment can cause changes in your body which can affect how you feel in yourself.
There is support available to help you cope during and after treatment.
You might have a number of different feelings when you're told you have cancer.
You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:
numb
frightened and uncertain
confused
angry and resentful
guilty
sad
You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.
Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.
Visit our section about mental health and cancer
You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.
Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.
Ask your doctors and specialist nurses to explain things again if you need them to.
You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.
Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.
You can also do practical things such as:
making lists to help you
having a calendar with all appointments
having goals
planning enjoyable things around weeks that might be emotionally difficult for you
Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.
It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.
Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.
Find out ways to help manage your emotions
You might find it easier to talk to someone other than your own friends and family.
Or you may want to see a counsellor.
Read more about talking about cancer, including talking to children
Mesothelioma and its treatment might cause changes in your body. These changes can sometimes be difficult to cope with. You might have symptoms such as a cough or breathlessness.
Read about coping with breathlessness
Surgery might cause scarring and you may have pain in the area for some months afterwards. Such body changes can affect your self esteem and the way you relate to other people, especially close family and friends.
Another problem you might have to cope with is feeling very tired and lethargic a lot of the time, especially for a while after treatment.
Learn about coping with tiredness
If you are having a sexual relationship, one or all of these changes might affect your sex life.
Most cases of mesothelioma are related to exposure to asbestos. If you know you were exposed to asbestos at work, you might be able to claim compensation from your employer at the time of the exposure. It may be helpful for you and your family to have some extra funds to help you to cope with the illness and its treatment.
If you are interested in making a compensation claim, you can ask your specialist nurse or social worker for advice. Your doctor will be able to provide medical reports to support your claim. They may suggest contacting a solicitor who specialises in asbestos disease claims.
You can also get advice and information from various support organisations.
You might be able to claim Industrial Injuries Disablement Benefit (IIDB). IIDB is a benefit that you can claim if your disability was caused by your work. Or you might be able to make a claim for a one off payment under the Pneumoconiosis Etc (Workers' compensation) Act.
Learn about IIDB and the workers' compensation act
Get tips on how to support someone with cancer and how to take care of yourself
You and your family might need to cope with practical things including:
money matters
financial support, such as benefits, sick pay, prescription costs and grants
work issues
early retirement
childcare
Blue Badge applications
help with travel costs
changes to your house
Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.
Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospitals have a social worker available for people with cancer.
Read more about the practical support that is available to you
You might need some care and support at home due to mesothelioma or its treatment. A lot of practical and emotional support is available.
Your GP manages your healthcare when you are at home. Your specialist doctor will update your GP about your cancer care. Your GP can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.
These nurses work in different places in your local area and may visit you in your home. They can:
give medicines or injections
check temperature, blood pressure and breathing
clean and dress wounds
monitor or set up drips
give emotional support
teach basic caring skills to family members where needed
get special equipment such as hospital beds, special mattresses, commodes or bed pans
Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.
Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.
Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.
Read more about Marie Curie nurses
Social workers can help to support you with your situation at home. They can arrange:
home helps to help with shopping or housework
home care assistants for washing and dressing
meals on wheels
respite care
Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.
Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.
There is usually other help available but services can vary from place to place.
Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.
Good neighbour schemes offer befriending or practical help with shopping or transport.
Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.
Last reviewed: 13 Aug 2021
Next review due: 13 Aug 2024
Support is available to help you cope with emotional, practical and physical issues when you have advanced mesothelioma.
After a diagnosis of cancer, you might have a range of feelings including fear, sadness, anxiety and depression. These are normal responses to a stressful life experience.
There are several organisations, support groups, videos and books to help you cope with mesothelioma.
The treatment you have depends on the stage and type of your mesothelioma. Some people with early stage mesothelioma have surgery. Other treatments include immunotherapy, chemotherapy and radiotherapy.
Researchers around the world are looking into the diagnosis and treatment of mesothelioma. You can read about the research and how to find a clinical trial.
Mesothelioma is a cancer that most commonly starts in the sheets of skin-like tissue that cover each lung (the pleura). More rarely it starts in the sheet of tissue in the abdomen that covers the digestive system organs (the peritoneum).
About Cancer generously supported by Dangoor Education since 2010. Learn more about Dangoor Education
What to ask your doctor about clinical trials.
Meet and chat to other cancer people affected by cancer.
Questions about cancer? Call freephone 0808 800 40 40 from 9 to 5 - Monday to Friday. Alternatively, you can email us.
