Coping with changes after brain tumour treatment

As you recover from treatment for a brain tumour, you may have to adjust to some changes. These may be caused by the treatment you have had or the tumour. These changes will depend on:

• the type of tumour
• where the tumour is in the brain
• and what treatments you had.

Most side effects are short-term and will improve gradually when the treatment is over. Some treatments can cause side effects that do not get better. These are called long-term effects. You may also get side effects that start months or years later. These are called late effects. Your doctor or specialist nurse can tell you what you could expect.

In the video below, Jordan who has had a brain tumour, talks about life after cancer treatment. Anna, a Neuro-oncology nurse practitioner explains the side effects of cancer treatment.

Changes to thinking or behaviour do not affect everyone. If you do have this type of change, it may get better over time. Sometimes changes are permanent. Your doctor will explain more about your situation.

Some people find it hard to think clearly, concentrate or remember things. Others may react or behave in a way that can seem out of character.

Some people find they have difficulty getting started on any activity (feeling motivated). Although this type of change is not always so obvious, it can have a big effect. You may find it hard to organise your day, get things done or arrange activities like meeting friends or exercising. It can help to follow a daily routine and try to get enough sleep.

If you have memory problems, you could try to use:

• a diary, mobile phone or calendar to record and check your plans
• pill boxes to organise your medication
• checklists and alarms to organise your tasks.

If you have difficulty thinking clearly or making decisions, you may be able to have therapy to help. This is called cognitive re-training.

Always tell your healthcare team if you notice changes to your thinking, mood or personality. They can talk to you about things that may help. They may arrange for you to see an occupational therapist, neuropsychologist or psychiatrist. They can help you find ways of improving or coping with changes.

Sometimes changes are caused or made worse by the drugs you are taking. For example, steroids can affect your mood. If you think a drug is making things worse, tell your doctor or specialist nurse.

Depression or anxiety can also make it harder to cope. We have more information about coping with difficult emotions.

Your healthcare team includes professionals who can help you during and after your treatment. They may be involved in the early stages of your recovery or for a while after your treatment has finished. You may meet them when you are in hospital, in a clinic, or in your own home.

Your doctor or nurse may refer you to a neurological rehabilitation (neuro-rehab) service. This service may be able to refer you to a physiotherapist, speech and language therapist, or occupational therapist, and offer emotional support.

Who you may meet will depend on the help that you need. You may have help from 1 of the following healthcare professionals.

A physiotherapist can help you maintain or improve your strength, balance and co-ordination. They can help you adjust to living with any permanent changes and show you how to use the abilities you have as well as possible. They can give you exercises, advice and equipment to help.

A speech and language therapist (SLT) can help if you have problems speaking or communicating clearly. They can also help if you have difficulty eating, drinking, or swallowing. They will give you advice and show you exercises to do.

An occupational therapist will help you get back to doing everyday tasks. This could include washing, dressing, eating, shopping or managing your money. They can also provide equipment to help to make things easier.

A specialist nurse is often involved during and after your treatment in hospital. They are usually the main person you contact if you have problems after treatment.

If needed, a district or community nurse may visit you at home. Your GP or someone at the hospital can arrange this before you go home. The nurse can help you with things like looking after your wound or managing your medicines.

Some people have support from a specialist nurse to manage any symptoms caused by the tumour. This nurse may be called a palliative care nurse or Macmillan nurse. They are experts in symptom control and support people who are living with a brain tumour. They can give you and your family emotional support and information about other services that may help. They can also support people who are nearing the end of life.

People often have to cope with some difficult feelings after treatment. Talking to family or friends can help. Sometimes people need more support to cope with how they are feeling. If needed, your doctor, nurse or GP may be able to arrange expert help from a counsellor or psychologist.

We have more information about coping with difficult emotions.

After treatment, you are likely to feel tired and you may still have some side effects or symptoms. You may be adjusting to changes and learning new ways of coping.

It is important to take care of yourself. Give yourself time and things will gradually improve. Try to follow advice from your healthcare team. We have more information to help improve your well-being.