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Coping with a Rare Brain and Spine Tumor Diagnosis

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Coping with a rare tumor diagnosis may make you feel isolated, overwhelmed, afraid or even angry. You may wonder if anyone understands your diagnosis or how you feel. You may be unsure where to find more information or you may need time to understand how your diagnosis will affect your life and loved ones.

During this time, positive coping strategies may help you get through each day so you can continue to live fully. Below are some things you can do that may help you cope in a healthy way, at your own pace.

Talk about Your Feelings and Needs

Talking with your healthcare team and your loved ones about your diagnosis and treatment is important. It can help your healthcare 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.   

Try the following tips to help you talk with others.

Healthcare team: Tell your healthcare team how your diagnosis and treatment are making you feel physically and emotionally. The more honest and open you are, the better your health needs can be managed and tailored to you.

And remember, each patient is unique so your healthcare team may not know what you’re going through. If questions arise while you’re away from your healthcare team, write them down to ask at your next visit or through secure messaging systems provided by your healthcare team. If you have serious or pressing concerns, contact your healthcare team right away.

Be sure to also:

  • Keep copies of your medical records in a folder or place that is easy to access.
  • Write down symptoms and side effects and when and where they happen to share with your healthcare team. You may also note what makes them better or worse and how you treated them.
  • Bring someone to your doctor visits who can help record information, ask questions and discuss your care.

How to Find Support and Seek a Second Opinion

Loved ones: Talking to family and friends about your diagnosis can be difficult. But sharing with people who support you can help you cope. Family and friends may want to help, but aren’t sure what to do. Talking about your needs also allows you to ask for help and move forward.

Tips for talking with family and friends include:

  • Before talking to them, think about what you want to share. Decide how much information they should know. And be honest with the information you share.
  • Tell your close loved ones your course of treatment so they can understand what you will be going through. Then they can help support your physical and emotional needs.
  • Use web-based tools to ask for help with meals and tasks that you may not be able to do during treatment. Web-based tools allow you to create lists of chores and tasks that people can sign-up to do.  
  • Set-up a way to keep in touch with loved ones and assign a point of contact to send updates. Group emails and blog posts are examples. Then everyone can easily get updates on your journey.

Set Goals

Set realistic goals for yourself. You can create short- or long-term goals for the areas of your life that you want to manage. And think about what you want to do when you feel well again. Short-term goals are things you want to achieve soon like today, this week, this month or this year. For example, plan to walk for 10 minutes three days a week, write three positive entries in your journal each month or research and plan a weekend trip. Short-term goals can help set the stage for long-term goals.

Long-term goals are things you want to achieve in the future. They’re not tasks you can do this month or even this year however, they do require time and planning. For example, research and plan a vacation, think about learning things you always meant to learn and find classes or instructors to teach you.

Whether your goal is short- or long-term, break it down. Use the SMART technique to set your goals:

  • Make your goal Specific
  • How is it going to be Measured?
  • Is it Attainable?
  • Be Realistic about being able to accomplish this goal
  • Timely - How long will you give yourself to complete your goal? 

An important lesson in goal-setting is to reward yourself through the process. If you got out of bed, walked to the mailbox or wiggled some of your fingers today, be proud. Don’t wait until you have achieved a big goal to fully celebrate your accomplishments.

Keep a Journal

Writing in a journal can help you express your thoughts and feelings. It’s also a way to release any feelings that may be building up. When you don’t express your feelings, you may release them in unexpected ways that are hurtful to your loved ones.

Your journal is also a personal record of your journey. You can note a positive event or write a positive message to yourself at the end of each day. You can set a time each day to journal your story in any way you would like. 

You can also use your journal time to think about steps you can take to resolve any concerns. Here are steps to work through a concern:

  1. Decide if you have control over your concern.
  2. Be as specific as possible on the details of your concern and the issues.
  3. List any possible solutions. No answer is right or wrong.
  4. Write the pros and cons for each solution.
  5. Pick a solution and give yourself time to follow through with it.

If the solution doesn’t help, you may pick another solution, or choose to list new solutions (following steps 3 through 5 again). 

Be Present

Your diagnosis may be overwhelming, making it hard to focus on tasks or concerns. To cope, try to experience things as they are, instead of how you want them to be. Doing so is being mindful and present. It helps reduce bad thoughts and trying to control things out of your control.  

Ways to be present include:

  • Take part in routine tasks with more awareness. Whether you’re eating a meal, talking with a friend or listening to music, pay close attention to what’s occurring around you.
  • Take a moment each day to focus on your senses: sight, hearing, touch, smell, and taste. The sense that comes first is the one you should use in that moment. 

Find Balance in Your Life

Balance is key to maintaining stability in your life. Prior to your diagnosis, you may have had a routine. You should try to continue that routine, but don’t do too much. It’s important to have a life you enjoy outside of your doctor visits and treatments.

A routine or schedule can also give you purpose. It can help push you to do what you can, when you can. It can help you deal with feelings of isolation, not knowing how to deal with your diagnosis and concerns about your future.

Also, if your faith or spirituality was an important part of your life prior to your diagnosis, be sure to maintain it.

Practice Daily Relaxation Techniques

Relaxation and stress-relieving techniques can help ease anxiety about your diagnosis or treatment. And you can use these techniques throughout your cancer journey. Techniques you can add to your daily routine include:

You can also ask a counselor or therapist to help you find additional coping techniques.

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