Coping with brain tumours

Coping with a brain tumour can be difficult. You may find you have a lot of different feelings. There is help and support available. There are things you can do, people who can help and ways to cope with a diagnosis of brain tumour.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Your feelings

Finding out you have a brain tumour can feel overwhelming, as though things are out of your control. You may feel shocked and upset. You might also feel:

• 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. Everyone reacts in their own way. One day you might feel positive and able to cope but the next day feel the exact opposite. This is natural.

Sometimes it's hard to take in the fact that you have a brain tumour at all.

Experiencing different feelings is a natural part of coming to terms with the disease. All sorts of feelings are likely to come and go.

Some people find that counselling can help them cope. Counselling can help to reduce stress and improve your quality of life. It can be difficult to access a counsellor through the NHS. It's worth asking your GP or your treatment team for the services that are available in your area. 

Finding out about your prognosis

There are lots of different types of brain tumours. The likely outlook (prognosis) varies greatly, depending on the tumour type and how well you are. Some brain tumours grow quickly and are likely to come back despite treatment. But many brain tumours are curable or can be controlled for many years. 

Not everyone wants to know if their brain tumour isn't curable and how long they are likely to live (their prognosis). Reading information about survival can be difficult. You can save it to read another time when you feel ready. And it’s okay if you don’t want to read this information at all.

Survival statistics can be useful, but cannot tell you exactly what will happen to you. The best person to do this is your doctor. Talk to them or to your clinical nurse specialist if you want to know about your likely prognosis. 

Helping yourself

You are more able to cope and make decisions if you have information about your tumour type and its treatment. Information helps you to know what to expect.

Taking in information can be difficult at first, especially if you have just been diagnosed. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers.

Ask your doctors and nurses to explain things again if you need them to.

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.

Talking to other people

Talking to your friends and relatives about your brain tumour 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.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family. For example your specialist nurse, or other people in a similar situation to you. You could join a support group, or contact one of the brain tumour charities.

Cancer chat

You might find it helpful to talk to other people affected by a brain tumour. Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

Cancer Research UK nurses

Coping with personality changes

You might have personality changes caused by the tumour itself or its treatment. These can be difficult to cope with and might affect how you feel about yourself. 

Personality changes can include: 

• irritability or aggression
• confusion
• anxiety
• mood swings
• lack of interest and depression

Some people are aware of the changes happening and others aren't. Speak to your doctor or specialist nurse if you or your family notice changes in your personality. They can do some tests to find out what is causing the changes and give you some medicines to help. 

Coping practically

Practical things you and your family might need to cope with include:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare

Talk to your doctor or specialist nurse to find out who can help. They can refer you to a physiotherapist, occupational therapist or to a team of doctors and nurses who can help to make you as comfortable as possible (palliative care team). 

Getting help early with these things can mean that they don’t become a big issue later.

How to support someone with a brain tumour

Supporting or caring for someone with a brain tumour can be challenging. You might not know what to say or how to deal with your loved one's emotions. Every person with a brain tumour has a different experience so try not to assume how they might be feeling. You can ask them how they are feeling. But remember that they might not want to talk or think about their tumour all of the time.

It's also very important to take time to look after yourself, both physically and emotionally. Get some support for yourself if you are finding it hard to cope. 

Support at home

GP and nursing support

Your GP manages your healthcare when you are at home. They 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.

Community or district nurse

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 nurse

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

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.

Social workers

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.

Local support services

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.