Quick facts on living with brain tumour : Navigating everyday life

Being diagnosed with a brain tumour can feel like your world has changed from all recognition.

Everything you know and are used to is suddenly uncertain and you don’t know what to expect or who to turn to. A diagnosis of brain tumour can not only impact you directly but those around you, and can cause unexpected issues. We will deal with some of the issues which may arise here.

A life changing event to those around you

Communicating with your loved ones

Being given a diagnosis of brain tumour is a huge thing to come to terms with. It not only affects you, it also affects everyone around you from partners, parents, children, friends, neighbours, work colleagues and anyone else you interact with on a regular basis. Telling those important people about your illness can be extremely difficult. Many people worry about how family and friends will react to the news and whilst there is no easy way to tell people about the diagnosis, talking about it with others will help. They could be in a similar situation and when sharing your struggles, it can help you feel not so alone.

Unloading the burdens

Some topics such as mortality rate or hospital reports can be difficult to broach. Everyone has a different way of coping and sometimes speaking to people outside your circle can relieve your tension. Professionals such as carers, nurses or doctors or social media groups or forums can help you talk about everything/ provide an outside perspective.

There are also support groups regularly held across the country, we recommend Brain Tumour Support who share in practical tips in making the most with of your life. These tips can also be offered to those closest to you or finding new connections who can assist with household chores, help with childcare, cooking, shopping or taking you to appointments. It is sensible in this situation to accept help which is offered. This will take some of the pressure off you and stop you getting over-tired, particularly if you are recovering after surgery or going through chemotherapy or radiotherapy.

Your relationship

Living with brain tumour can put a strain on relationships where partners take the perception of a parent rather than an equal partner who care for their needs. Often for partners, the quality of personal and physical intimacy diminishes and when the personality of the individual has changed, then it’s as if they lost them.

In contrast, those with greater understanding of care have shown a strengthening of a relationship. As more time was spent together, they uncovered different aspects of their new relationships which they enjoyed. Many partners, who took care, also showed appreciation towards their partner and an increased mental strength and resilience.

Talk to your children about your cancer

An onset of brain cancer puts family members in a primary caregiver role, where they assume greater responsibilities in supporting you and your needs and taking care of the household. Macmillan have put together some points to help prepare for this difficult conversation, particularly where children are involved. You should also make sure you let your child’s teacher know about the diagnosis as they will then have a better understanding of the situation if your child is upset at school or needs additional support.

Social/ leisure pursuits

Relying on people during the initial stages of brain tumour can eventually lead them to withdraw as dependency increases. This can take a toll on your emotional and mental wellbeing due to isolation, this can be changed with exercise. Whether that’s playing sports, walking the dog or gardening, these will help you enjoy the present moment and have a positive impact on your mood. Mental exercises such as reading, playing games or figuring out the answers to puzzles can retain most of your cognitive abilities. Usually up to 50% would experience memory problems and therefore, engaging in exercises will strengthen the existing nerves to counteract areas in decline.

However, as life goes on, communication, mobility, fatigue and cognition will degenerate and this can cause struggles when participating in certain activities. To slow down this process, the right exercise and diet could help, find out more by following these tips.

Losing the license to drive

The lack of control with your life can put you in an enormous strain, however with the right support network, the burden can be lifted in multiple ways from relying on others for a lift to receiving help on chores. However this lack of independence can make you feel frustrated, especially when your driving license has been revoked. This is a common matter due to unavoidable dizziness, seizures or epilepsy. If you still have a license and you have been diagnosed, it’s necessary to notify the DVLA and the insurance company about your condition, so they can determine your legal driving status.

Career curtailed

Working requires energy, cognitive and communication abilities which a brain tumour slowly weakens. It’s important to let your employer know about your illness. You should be able to take time off to attend any hospital appointments or to work flexible hours if you are unable to continue working full time. If you are unable to continue working or have to reduce your hours, you may be entitled to various benefits including Disability Living Allowance, Employment and Support Allowance or Carer’s Allowance.

It’s important to see what financial assistance available especially when there is a greater need for managing costs of treatments to paying for childcare. There are financial aids available which your hospital can also advise on. You should have information about the benefits available, or you can check online www.direct.gov.uk for the most up to date information on benefits.

Air travel safety

Sometimes, a mental break from the struggles of brain tumour can be beneficial as one escapes to another city or country. However, finding suitable travel insurance can often be difficult when it’s been found the air pressure in flights can cause swelling. Brain Tumour Support have compiled a list of insurance companies who should be able to assist whether you want to go on holiday or need to travel abroad for treatments.

Enhanced care based on someone’s needs

When someone is undergoing treatment, they will normally plan the life they want to live when weighing treatment and lifestyle options. They will consider additional support in different areas of their lives, often asking questions such as; how do I reduce physical ailments, cognitive impacts, mental health illness, or improve my social wellbeing and so forth. We have listed the main concerns in this article; however when living with brain tumour one will need to know how to enhance their quality of life based on their dreams, needs and wants. For support and advice, contact our specialists who will help you find your best solutions.

Committed to making an impact

We at Clarke Willmott are committed to making an impact on the lives of those living with Brain Tumour; from working with our charity, to using our knowledge, experience and network to give back to the clients who experienced negligence in diagnosis, treatment or care. To find out more about the service we provide, read our brochure or visit this page. Alternatively, if you would like free advice now, you can contact us here. We have offices in Bristol, Taunton, Southampton, Manchester, Birmingham and London.

Appeal: Together we are stronger

Brain Tumour Support are a charity dedicated to providing support beyond brain tumour; from rehabilitation to support groups and carers .

Their vision is to make sure no one feels alone in their experience of dealing with brain tumour. However, during this pandemic, it has been challenging to do their work when face-to-face support is restricted and so they have set up a new appeal: Together we are stronger. Donations are a vital part of their work, to help them continue the work they do and help those experiencing this illness get through this difficult time. We support this appeal and the need to enable the charity to continue the vital work that they do.