Living well with brain cancer can mean different things to different people. However, there are things that can be done to improve the quality of life of all brain cancer survivors.
General
There are a few things that can be helpful for anyone living with a brain tumour: [1]
- Take it one day at a time – Anxiety about the future is natural, but try to focus on today.
- Use a device to provide you with automatic reminders for appointments and meetings.
- Create checklists of what you have accomplished and what still needs to be done.
- Use visual and auditory tools, such as color-coding or a timer, to help you complete tasks.
- Get your family and friends involved – Keep yourself open to accepting support and assistance from those who are close to you.
- Complement your treatment with exercise and a healthy diet – A sensible exercise program combined with a healthy diet can help you with treatment-related fatigue, improve strength and mobility, and help you deal with anxiety and depression.
- Seek out a support community – It’s often helpful to talk with other people going through their own brain tumour journeys. Find a support group in your area or ask your health care team for a recommendation.
Follow-up care
Follow-up care exists to check for recurrence, as well as to provide your health professional with information regarding your general health and symptoms. There may be blood tests or imaging done in the context of regular follow-up care, but this will depend on your original diagnosis and treatments.
Brain tumours are unfortunately very likely to recur, so routine monitoring can be very helpful. Your healthcare team can help you decide on the frequency of your follow-up visits.
Follow-up tests can create a lot of stress and anxiety, or “scan-xiety”. Learn to cope with it here. [2]
Managing long-term side effects
Side effects of treatment can persist after it has finished, or they may even develop long after treatment has been completed. These side effects can be both physical and emotional. Your doctor can talk to you about your risk of side effects based on your specific case, and you may have physical exams or scans to help find and manage them.
It is also important for your healthcare team to evaluate your overall well-being, as well as your cognitive and functional abilities (typically assessed by a neuropsychologist). If needed, there are many rehabilitation therapies which can be helpful, including: [2]
- Speech therapy
- Occupational therapy
- Counselling
- Medications to reduce fatigue or enhance memory
Diet & nutrition
A healthy diet can combat fatigue, improve your mood and feelings, and keep your body strong so you are more prepared to cope with side effects. It can also help you recover more easily. In the case of a brain tumour, some people may continue to enjoy eating and maintain a healthy appetite, while others may want to eat but are unable to do so due to nausea or vomiting. If you feel sick between meals, it can be helpful to eat several small meals throughout the day, rather than just a few big ones. Try to avoid foods that are sweet, greasy, fried, or have a strong odor.
Just as with anything else, be sure to talk to your doctor. They may be able to suggest medications or dietary changes that can help. [1]
Emotional impact
Many people with brain tumours report going through the same six phases. These include: [1]
- Shock
- You will probably be unprepared for your diagnosis, and may feel numb or confused.
- Denial
- You may try to deny that anything is wrong, or act as if nothing has happened.
- Anger
- You may not be ready to accept the news, and strike out at those who love you most. One way to deal with anger can be to communicate your feelings, so that you can address them and get through them with the help of others.
- Guilt
- You may be looking for “reasons” that you were diagnosed. It’s vital to remember that you did not do anything to cause your brain tumour.
- Anxiety & depression
- As discussed in Mental Wellness.
- Acceptance
- With time, you will come to terms with your diagnosis and understand it more clearly. At this point, it can be helpful to join a support group to cope and hear about others with similar experiences.
Returning to work
Many brain cancer survivors choose to return to work, while others choose to focus on recovery or spend more time with family. You have the power to decide what the right choice is for you. If you do return to work, here are some strategies to make the return go smoothly: [1]
- Communicate openly
- Talking to your coworkers and employer about your diagnosis can help them understand why you may have changed, despite seeming the same.
- Develop strategies
- Create realistic timelines, and ensure that your return to work is gradual. You cannot rush your recovery, be it emotional or physical.
- Optimize your environment
- Know your limits, and schedule your most challenging tasks during the time of day that you have the most energy.
- Develop flexible solutions, such as flexible hours, assistive technology, or a temporary job coach.
[1] American Brain Tumor Association, “Living with a Brain Tumour”, https://www.abta.org/about-brain-tumors/living-with-a-brain-tumor/
[2] Cancer.net, “Brain Tumor: Follow-Up Care”, https://www.cancer.net/cancer-types/brain-tumor/follow-care