Everyone’s experience coping with with a brain tumor is different – yet a similar sense of fear is felt by anyone who receives a diagnosis. Many people learn to manage the fear, insecurity and anger. If you are coping with a brain tumor, you can take actions that give you more control over the experience every step of the way. Take an empowerment approach by adopting a series of actions, behaviors, and attitudes that can help improve your quality of life.
You Are Not Alone
When confronted with a brain tumor it is common for people to feel alone, confused, and fearful of the unknown.
This time is challenging, but can be managed. No one coping with a brain tumor has to do it alone.
Regardless of your diagnosis, most people (patients and caregivers alike) find it helpful to talk about their situation and sort through information with others have a personal experience with brain tumors. You can talk to people with experience through support groups, counselors, online chat groups, or organizations that offer over-the-phone expert and practical support.
Your involvement in the choices you make with your medical team can make a big difference in your experience and your quality of life.
This includes acknowledging your physical, social, and emotional needs. Most importantly, it includes partnering with your health care team to get answers to your questions. You may feel more confident about what to do next if you take part in making plans and finding a network of people to help you.
No one coping with a brain tumor has to do it alone.
Things to Remember:
- It’s normal to feel scared, insecure, and angry about a brain tumor diagnosis– and it is possible to deal with these feelings.
- You can take an empowerment approach to gain a sense of control over this disease.
- You are not alone.
- No question is wrong to ask.
- Take time to process the information you’re given. You probably have enough time to take a deep breath and think about your next steps.
- Talking openly can become a priority for your family and with your doctors.
- Remember what’s important to you and think about your goals and values. Aim to enjoy the things that make your life special.
10 Actions to Take When Coping with a Brain Tumor
1. Take one day at a time, and make one decision at a time. Try to resolve only today’s problems. The future is always unknown – for everyone. Life with a brain tumor can feel overwhelming but taking one small step at a time can help.
2. Partner with your health care team. Having an honest relationship with your medical team can help you feel a greater sense of trust and control. Consider a second or third opinion from experts, ideally at a brain tumor center. Carry a notebook with you or ask someone to write down the things you’d like to ask your doctor. Refer back to your notebook to help you remember what your doctor said.
3. Ask your family and friends to help. Family and friends often want to help but don’t know how. Offer specific examples, such as: driving to appointments, researching financial support, making phone calls, or just talking. Reach out to your nurse or social worker to learn about available support services when you need extra help.
4. Reach out to other brain tumor survivors. It’s often comforting to talk with others who can understand what you’re experiencing, because they’ve also been there. See p. 69 to find organizations that can help you connect.
5. Acknowledge and express your feelings.Take time to listen to yourself. Find ways to express your feelings through journaling, physical activity, or creative pursuits, or consider talking to a social worker or psychologist.
6. Establish a reasonable amount of control over your life. Having a brain tumor can make it difficult to feel in charge of your life and your care. At times you may feel too exhausted or are unable to think clearly. Work with your medical team to develop a plan that gives you as much control over your life as you can comfortably handle.
7. Learn to relax. It can help to feel calm. Try relaxation or meditation programs to reduce stress. Relaxation is something that you might have to learn, or build it into your day, but it is important.
8. Make healthy lifestyle choices. It’s never too late to make changes that will improve your well-being. Every small step you take to eat better, get more exercise, and find more humor in life can make you feel better.
9. Find a new perspective. A brain tumor diagnosis is life changing. It can be difficult, but also an opportunity to reprioritize goals and reframe your self-image.
10. You can find hope in many things. When you find something that gives you hope, you may feel better equipped to handle challenges. Draw upon family connections, cultural customs, and spiritual beliefs. If a cure is unlikely, one can always hope for small things that make each new day better in some way.
When A Loved One's Personality Changes
Depression, anger, confusion and mood swings are common symptoms for individuals with brain tumors.
These symptoms can be caused by the tumor, the treatment, or may have been present before. Regardless of the source, personality changes in someone you care for can be very challenging. These changes can be subtle or drastic. Speak with your doctor if you notice these types of changes. The symptoms may be treatable.
People who care for someone with a serious illness can forget to take care of themselves and can neglect their own needs. It becomes hard to focus on work, household responsibilities and other demands, yet those pressures continue. There are many ways to build-in time for your own care, and this is essential for your physical and mental wellbeing. Take time for yourself – this is not selfish.
Aim to find a balance between caring for your loved one, caring for yourself, and caring for others in your life. The patient will benefit most from being with you when your own life is in balance–and you will be less likely to feel exhausted or resentful about caregiving.
Making Important Decisions
Many people with a brain tumor diagnosis experience changes in their ability to think clearly and process information. This may be due to the tumor, treatment or simply feeling overwhelmed by the diagnosis. Whatever the cause, a loved one is often responsible for setting the course for a patient’s care as their advocate. If you must be the treatment decision-maker, know that you can take some time to ask questions, research options, and find support. Before you can know what’s needed and what you can do to help, you must understand the situation.
1. Learn about the brain tumor including its location, grade, treatment options, anticipated treatment side effects, and expectations for recovery.
2. Try to identify the top medical centers and experts in your loved one’s (or your) area for a second opinion or additional services, as needed.
3. Research information on credible websites, like through the National Cancer Institute, and the National Brain Tumor Society.
4. Weigh the pros and cons of each treatment option with your loved one, including elements like time, where treatment will be given and cost.
5. Create a “to do” list with your loved one of immediate versus long-term needs. Decide what your loved one can address independently, what you or someone else can address from a distance (via phone or internet) and what requires hands-on support.
6. Recognize and respect the unique capabilities of your loved one and their wishes and desires, in addition to the roles played by others involved.
7. Set limits. Define what you can and can’t reasonably do for your loved one.
8. Organize a care-plan featuring coordination and open communication among all participants (who is doing what, when?). This plan will help reduce family stress and bring needed relief.
9. Remember that each stage of care requires different levels of support, and everyone’s roles will change along the way. Brain tumors are not the same as other major life events; they can be ongoing and often unpredictable. Try to think through reasonable short- and long-term expectations.
10. Secure proper authorization that allows you to gather copies of medical and treatment records (including operation reports and x-rays). By obtaining legal “Power of Attorney” you will be granted this authorization. This will help with follow-up care plans and future medical needs.
11. Utilize an oncology social worker at the cancer center or affiliated with the oncologist. They offer a wealth of information and can answer many logistical and financial questions.
12. Enjoy your relationship. Try to value the time you spend with your loved one, because every moment is special.
Evaluating Your Needs
Evaluating your Needs
If your loved one is not receiving the help you hoped for or need, it may be time to regroup. Are your expectations realistic? If you’re not sure, have an honest conversation with the medical team. If your expectations are realistic but not being met, you may need to secure a different type of support. Try to brainstorm creative ways to address each issue by breaking problems into smaller parts and tapping into additional resources.
Palliative & Respite Care
Palliative care is a service used at any point in a patient’s experience to help a caregiver with the management of pain and other symptoms. Palliative care has the goal of achieving comfort, managing symptoms, and improving a patient’s quality of life. Palliative care professionals may come to a person’s home to deliver care and to teach caregivers how to manage problems. Check with your insurance, and you can ask your hospital or doctor for a referral.
Respite care is short-term, temporary relief to caregivers who are providing full-time support to an ill loved one.Respite offers intensive care for the patient in their home so a caregiver can take a break. It often provides a positive experience for everyone involved. You can contact a respite care organization when you need time away.
To access respite care services in your area for you or another caregiver, try:
A diagnosis of advanced brain cancer can make you wonder how long your loved one has to live. It’s frightening to envision a different future than you originally planned for yourself. It can also be difficult to talk about such painful topics.
Finding ways to talk about what is happening makes most people feel relieved. The conversation often leads to hopes about living the life you have together now. Often, people want to make the most of their time together with family, as they make peace with the circumstances. Perhaps these can be uplifting conversations that give you both a sense of peace.
If you try to discuss the subject but your loved one isn’t ready, know that we all have our own timing. Finding someone else you can talk to about your concerns when you’re ready is important. Research shows that caring for someone with a brain tumor is just as stressful (but in a different way) as having the diagnosis.
As with other difficult emotional issues, you can contact a social worker or counselor skilled in working with people with a brain tumor, or talk to a spiritual leader that you trust.
Losing someone you love to cancer is one of the most difficult and profound experiences in life.
In the weeks and months after a death, people feel an enormous mixture of emotions. It is important to know that practically any emotion you experience is normal. Sadness can also involve physical symptoms, such as sleeplessness, muscle tension, and decreased energy.
Be assured that you will feel a sense of calm eventually. You must give yourself time to grieve.
Some people move quickly through grief; others move slowly. No matter how you grieve, it is important to become aware of the normal aspects of grief, feel it, then be okay to move on.
My dad was diagnosed when I was eleven and he passed when I was 14. When my dad worked, he was on the road a lot. So when he got sick, we joked that we were really lucky to have a stay-at-home dad for three years. We got to know him really well those years – and if he died any other way, that would not have been the case. -Natalie, caregiver
Finding Support & Help
Finding Support and Help
Offers information, connection, and advocacy for people affected by brain tumors. NBTS has excellent resources listed throughout their webpages.
ABTA connects patients, families, friends, and caregivers for support and inspiration.
Provides education, free online support groups, and discussion boards for people affected by cancer and their caregivers.
Those with cancer can create their own personal webpage to communicate with family and friends. Pages include online calendar tools, scheduling timelines, and information about ways friends and family can offer support.
Offers education, support (emotional and financial), advocacy and guidance to brain tumor patients. Online support groups and opportunities to participate in fundraisers for brain tumor research are also available.