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.

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. With any of these changes it can help to follow a daily routine and try to get enough sleep.

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.

If you have memory problems, you could try to:

• use a diary, mobile phone or tablet calendar to record and easily check your plans
• use pill boxes to organise your medication
• use 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 with this. 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, talk to your doctor.

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 see them when you are in hospital, as an outpatient in a clinic, or in your own home.

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 physiotherapist can help you maintain or improve your strength, balance and co-ordination. They can also 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 show you exercises to do and give you advice and equipment to help you with this.

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 support people who are living with a brain tumour and are experts in symptom control. They can give you and your family emotional support and information about other services that may help you. They can also support people who are nearing the end of life.

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.

Many people find they get anxious for a while once treatment ends. This is natural. It can help to get support from family, friends or a helpful organisation. Macmillan is also here to support you. You can:

• Call the Macmillan Support Line on 0808 808 00 00
• Chat to our specialists online
• Visit our brain cancer forum to talk with people who have been affected by brain tumours, share your experience, and ask an expert your questions.

You may also want to get support from a brain tumour charity, such as:

• Brain Tumour Action
• The Brain Tumour Charity
• Brainstrust.