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MyPART - My Pediatric and Adult Rare Tumor Network
 

Support for Patients and Caregivers

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How can I take care of myself and my family before, during, and after cancer treatment?

Cancer and its treatment can impact your quality of life and overall wellbeing. It is important to take care of yourself, though it can be hard to know what to do or where to start.

Ways to Cope

Be Mindful

Mindfulness is paying attention to the present moment with an open mind. Mindfulness does not make the hard parts of life go away. Instead, it can help people notice more positive things, and become more aware of what is most important. This may make it easier to cope or handle difficult situations.  Springboard Beyond Cancer has more information on ways to practice mindfulness

Being mindful of your and your child’s mental health is very important. You or your child may have feelings of shock, fear, helplessness, or horror. All of these feelings may lead to cancer-related post-traumatic stress (PTS), which is like post-traumatic stress disorder. Learn more about cancer-related post-traumatic stress and how to take care of your and your child’s mental health here. We also have a Behavioral Health Team to support you, your child, and your family. 

Do Things That You Enjoy

One of the best ways to cope with stress is to stay involved in activities that are fun and meaningful to you. While it may be hard to keep up with all of the activities that you did before your diagnosis, think about things that are doable and do them! If you are not sure where to start, think about what is most important to you in your life (family, friends, community, and hobbies such as art or sports) and create a list of things you can do that better fits your life now. 

Notice When Things Feel Hard

When we feel stressed, sad, or worried, we often want to get rid of those feelings. We may try to push tough feelings out of the way or pretend they don’t exist. While this is a normal reaction, trying to avoid difficult feelings can actually make the stress worse or last longer.  Instead, when hard feelings come up, spend a minute to notice them. Remind yourself that it is okay to feel worried, unsure, sad or angry sometimes. Talk to a friend or family member or write things down in a journal. These strategies can make it easier to cope. 

Develop your Sense of Self-Compassion

Self-compassion is being kind toward yourself when you are going through a hard time. Doing simple things like taking a break when you’re feeling tired or saying helpful, kind words to yourself are examples of self-compassion. This can be hard to do when you are worn out by treatments, but these simple practices can make a difference in your well-being. You can also develop your sense of self-compassion by listening to guided meditations or doing written or mental exercises

Connect with Others Who Have Been Touched by Cancer

Many people living with cancer find it helpful to connect with others who are going through the same thing. This can help you feel less alone and better understood. In some cases, it can also be helpful to learn from each other and share resources.

Search Social Media and Online Cancer Organizations

You can find others going through what you’re going through by searching social media, like Facebook. You can join groups of your peers who are going through a journey like yours to find support and share your experiences. Not all of the resources you find will be accurate or helpful. Some groups may focus on things that are stressful to you, so take time to find the type of support that is most helpful to you.

Online cancer organizations also can help connect patients and families with others who have been touched by cancer. They let you to request support from others, become a mentor, or simply connect to people who have shared experiences. 

Reach Out to Advocacy Organizations

You can connect with other patients and families through advocacy groups. Advocacy groups may have patient listservs, local organizations, or events and conferences that can help you meet others with rare cancers. 

Use eHealth tools to Help Learn More about Cancer and Its Treatment

Having information about your cancer and its treatment can help lessen feelings of worry and being unsure. Yet, it can be hard to find helpful and accurate information when you need it. Cancer.gov has information on how to find trusted online sources for information.

There are several apps for your  phone or tablet can be useful. 

  • Pocket Cancer Care Guide from the National Coalition for Cancer Survivorship was created for patients and includes a list of hundreds of questions to ask your doctor. It can also record and play back your doctor’s answers to questions and can link doctor visits to your calendar. (Available for Apple devices) 
  • The Understanding Medical Scans app, made by the NIH, explains different types of scans for patients. (Available for Apple and Android devices) 
  • The Purple Drug Guide has information about FDA approved drugs, experimental drugs and supplements. It also has information about drug interactions, dosages, and costs. (Available for Apple devices)