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Relationships and Communication with Others

Little girl whispering in grandma's ear
Credit: iStock

Living with a brain or spine tumor can be socially challenging. The side effects of your tumor and treatment may make it harder to communicate. It can affect how you understand what others are saying and how you express yourself. Changes to your body and functions can affect how you take part in your usual activities. Your friends and family may also not understand how you feel or how to support you.

Yet, maintaining healthy relationships can help you get through tough times. It’s important to talk with your health care team and your loved ones about your diagnosis and treatment and the impact it has on you. It can help your health care team provide the best treatment and allow your loved ones to provide support. Talking can also ease the burden of holding things in and feeling like your needs are not met.

Learn how to manage your relationships and communicate with those around you.

Facing Cancer with Your Loved Ones

A brain or spine tumor diagnosis can impact the connections you have with those close to you. This may include your spouse or partner, children, caretakers, and friends. Changes in these relationships may be due to symptoms you’re having, uncertainty about your illness, and the need to adapt to new roles and responsibilities.

Being prepared for relationship changes can help you and your loved ones keep your connections and adapt to your new normal.

Tips to Deal with Relationship Changes

  • Create a plan to divide responsibilities. Revisit your plan if any changes occur.
  • Create a system to check in with each other. For example, decide when and where you will meet to check in. During your check-ins, you can:
    • Talk about each other’s day or week.
    • Share something you accomplished at work or home.
    • Develop a shared goal to improve your relationship and share your progress.
    • Encourage each other.
  • Find support services like support groups or transportation services to help lighten you and your loved ones’ burdens.
  • Set aside some regular fun time with your loved one. For example, go to dinner or a festival or take a walk outdoors. Or, if this is too hard, plan some alone time together or an activity in the home, such as a game or movie. Fun activities can help you connect outside of your appointments.
  • Make time for individual self-care which can help you each recharge.
  • Ask your health care team to explain any changes you may experience.
  • Check in with each other often. Talk about life and relationship changes and how they make you feel. Discuss how you will deal with the unexpected changes.
  • Ask others for help. For example, have someone pick the kids up after school, ask older children to help do a few chores at home, and ask a friend to come be with you so your loved one can run a few errands or have time to themselves. Or you could ask a friend to take you to your appointment or take notes during it.

It’s important for your health to maintain relationships with those close to you. If you need to, talk to a therapist or counselor about any challenges you have with loved ones.

The news of my diagnosis for my parents was monumental. As my caregivers, they came with me to every appointment and procedure and provided emotional and physical support.

Darien, PXA Survivor

Resources

Communicating with Your Health Care Team

Your health care team helps guide your journey with a brain or spine tumor. They can help you learn about your diagnosis and treatment. They can also provide support resources. You should be able to talk honestly and comfortably with your health care team.

Do not assume your health care providers know what you’re going through. Every person with a brain or spine tumor is unique. It’s important to let them know about your physical and mental needs so your treatment and care can be personalized to help you.

How to Find Support and Seek a Second Opinion

Tips to Communicate with Your Health Care Team

  • Write your symptoms and side effects in a journal or cell phone app. Include when and where they happen, note what makes them better or worse, and describe how you treated them. Keeping a record will help you with your doctor at your next appointment.
  • Keep copies of your medical records and tests you have taken in a folder or place that is easy to access.
  • Bring someone to your appointments who can take notes, ask questions, and help discuss your care.
  • Make a list of questions or goals for the appointment.
  • Ask if you can record your visit.
  • Ask your provider to slow down as they are talking or to repeat something that wasn’t clear to you.
  • Be assertive when you talk to your health care team. Be:
    • Clear about what you want to say.
    • Confident in the information you want to share.
    • In Control of how you relay your message. Give yourself time to collect your thoughts. Communicate once you feel you can express yourself effectively.
3 Cs to use when communicating
  • Bring something comforting with you to your appointments that helps you feel grounded. Some examples may be your favorite music, a book, or cards with positive messages.

Your health care team should always be aware of what is going on with you. Let them know when any new or concerning symptoms or side effects arise during or between appointments. Know who you should contact if you have any concerns.

If your health care team isn’t meeting your care needs, then it could be time to seek out a different team. A cooperative health care team should respond to your needs, know about your specific diagnosis, and communicate with you effectively.

Be positive and never give up hope. It’s also important to do your research, seek a second opinion and find an expert care team so you can continue to live life to the fullest.

Lawrence, Pineal Region Tumor Survivor

Resources

Communicating with Your Loved Ones

Talking to family and friends about your brain or spine tumor journey can be hard. You may worry they won’t understand your feelings and needs. But sharing with people who support you can help you cope and may even increase your survival.

Family and friends may also want to help but aren’t sure what to do. Asking for help and telling them your needs lets them understand how they can help you. Use these tips to talk with your loved ones. Remember, they’re going through this emotional journey with you.

Tips to Communicate with Your Loved Ones

  • Decide how much information you want to share. It’s okay to not tell everyone that you have been diagnosed with cancer.
  • Consider sharing your treatment course with your loved ones so they can understand what you will go through.
  • Set up a way to keep in touch with loved ones and assign a point of contact to send updates.
  • Let your friends and family know that every conversation doesn’t need to be about your diagnosis or treatment.
  • Spend time with friends and family doing normal activities. Watch sports, go to dinner, go outside for walks, or do the activities you enjoyed before your diagnosis to help you reconnect.
  • Ask for help with physical tasks if you have weakness from symptoms or treatment.
  • Use web-based tools to ask for help with meals and tasks that you may not be able to do during treatment.
  • Tell your loved ones if any unexpected situations that occur, like seizures, so they know how to help. You may need to walk slower or sit or lay down.

A diagnosis can be life changing. You may require more help with complicated or even simple tasks. Allow your loved ones to help you—they want to because they care for you.

You can also keep people updated on social media or websites designed for patients and survivors. Journaling on these platforms can help you express your anxieties while easily providing updates to your family and friends.

Without the help of my family, friends, and military buddies, I wouldn’t have survived the diagnosis or treatment at all. Pessimism can kill you and you need support around you to keep you optimistic about life and your diagnosis and treatment.

Ken, Medulloblastoma Survivor

A positive attitude and support from friends, family, and community can have a positive impact on your health and outlook on life.

Resources

Sharing Your Story

A brain or spine tumor diagnosis can consume your everyday life. From traveling to appointments and managing treatment side effects, you may not be able to participate in normal—or what was your normal—daily life. This may make you feel like you don’t have much to share about your life now as a cancer survivor.

Sharing your story is a way that could help you see that, even though your daily life has changed, your “new normal” is just as important. Doing so is a way to help you cope with your diagnosis and allow you to accept your new normal. You are more than your diagnosis. Sharing your story may also be important to your family and friends, so they know how you’re doing and can support the changes in your life.

Sharing your story can also help you move forward in other areas of your life—relationships, returning to work, trying new hobbies—and making your life more meaningful.

Ways to Share Your Story

  • Reflect on what you want to share in your story. You can share how your life has changed since your diagnosis or what you have learned from your experiences with cancer.
  • Start to write your story in a journal by topic, timeline, or how you are most comfortable.
  • Keep it brief to help you accept the new aspects of your life. Write a short social media post, send a text message, or even try blogging.
  • Make a quick phone call to share a new activity you tried or the good or bad news your received at your latest appointment.

Using any type of communication form—whether long or short— can help you share your story. Positive feedback and engagement from your friends and family will remind you that you are important and your new normal can be as exciting and rewarding as before your diagnosis.

I am a meningioma survivor. I am also a breast cancer survivor. I am a wife and mother. I know I am a blessed soul. I am sharing my story to shed light on what it feels like to live with a rare cancer diagnosis.

Deborah, Meningioma Survivor

Have a rare CNS tumor and want to share your story? Email us at nciconnect@mail.nih.gov.

Resources

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