Your feelings after a brain tumour diagnosis

Managing your feelings

It is important to note that it is difficult to measure the impact that a brain tumour diagnosis may have on people as everyone deals with things differently. It can be a shock and life-changing, physically, mentally and emotionally and it may also take time to come to terms with the situation. Equally, it may also take time to accept that you may need to make adjustments to your life to enable you to continue doing the things that you enjoy.

Feeling they have lost their independence

• You may not be well enough to drive yourself and have to rely on others. In this case, there are other means of transport to explore: community transport/community taxis, busses, trains, and lifts from family and friends. You may also be entitled to a free bus pass.
• Some people lose their driving licence.  Find out more in our travel section.

Feeling that their life has or will come to a full stop

This will only happen if you let it. The alternative is to make adjustments in order to continue doing the things that make you feel good. Your GP and oncology team will be able to advise you. Making plans for the future is a good thing to do and acts as a strong motivator.

Worrying about the impact their diagnosis will have on family and friends

This is understandable but remember that this is something that you haven’t chosen to happen. Those who care about you will want to support you as best as they can. Find them a task that needs doing around the house, accept a lift when offered and make them aware when you need their support as they are not mind readers!

Feeling a loss of control

While you may not have control over your diagnosis, you do have some control over how you manage the impact. Continue to make plans and do the things that make you feel good, albeit with adjustments. Control can be a state of mind.

Feelings of low mood and depression

There may be times when you are not feeling at your best but these are often ‘moments in time’ and tomorrow will be the start of a new day. Where the periods of low mood outweigh the days when you feel good, it may be a sign of depression. If this is the case, your GP will be able to support you referring you to a counsellor, therapist or support worker, or suggesting a course of anti-depressants. Accepting these is a strength as it shows you are taking positive action.

Brain Tumour Support offers specialist counselling, one-to-one support as well as monthly online support sessions that enable you to meet with others, share information and access reciprocal support.

Feelings of loss for the person you were before the diagnosis

Regardless of the grade or type, being diagnosed with a brain tumour is life-changing. It is common to mourn the loss of the person that you feel you used to be and the tasks that you were able to complete with ease. However, you ARE the same person you were before the diagnosis, even if you need to make adjustments so that you can do the things you enjoy. Tasks may take longer to complete and it may take you longer to get out of bed. With determination and support, you CAN continue to do them.

Worrying about finances and employment

• The majority of employers are supportive. Talk to your manager and make sure you are aware of disability discrimination and your rights. They have a duty to offer reasonable adjustments to enable you to work. Citizens Advice has useful information about what is classed as a disability.
• Visit the Citizens Advice website for further information about discrimination at work and the Equality Act.
• If you are concerned about your finances or/and employment it would be wise to talk to someone in the field.

Brain Tumour Support has a dedicated advisor. Speak to your Brain Tumour Support Professional for a referral, or alternatively call the Support Line on 01454 422 701. In addition, support is also available through the Citizens Advice Bureau in your area and Macmillan Cancer Support.