From People Who’ve Been There
The journey through a diagnosis of a myeloproliferative neoplasm is different for each person, and there is no road map that will work for everyone. Different people need different things. Whether you are the person diagnosed with an MPN or a caregiver, we hope these ten tips that have been shared by others living with MPN will help you along the way.
1. Learn as much as you can about your diagnosis and treatment options. Be an information seeker. Read about MPN. But be careful about the Internet. If you search for MPN information online, be sure to check the date the information was published, stay with credible organizations that update their sites frequently, and, most important, talk with your healthcare team and ask questions if there is something you don’t understand.
2. Find a specialist in the treatment of MPN. Since it is a rare disease, you should see a specialist in the treatment of MPN. Talk with your doctor about clinical trials, and if one might be a treatment option for you.
3. Actively work with your healthcare team. Depending on your age, your type of MPN, your symptoms, and the stage of your disease, your doctor may recommend a variety of treatments. Once you and your healthcare team have agreed on a treatment plan, be sure to follow it. Living with MPN takes a team approach, especially when it comes to your medical care. Be sure to report any side effects or changes quickly.
4. Find others in a similar situation. People with MPN can feel isolated. Loss of hope, loneliness, and worry about the future are some of the social and emotional challenges of living with MPN. Connect with others who can understand what you are going through via the Internet or a local support group.
Living with a myeloproliferative neoplasm takes a team approach, especially when it comes to your medical care.
5. Accept help when it is offered. Coping with day-to-day tasks when you have an MPN can be hard. Don’t be afraid to ask others for the specific kind of help you want and need. Give your friends and family an opportunity to feel good by accepting their help. Use an online scheduler (such as MyLifeLine.org) to help you get the kind of help you need when you need it.
6. Learn to manage your stress. To manage stress, you can meditate, do yoga or tai chi, listen to music, visit with a friend, or take a walk. Set aside a portion of time every day to practice your stress management techniques. Even a short time can make a big difference.
7. Eat a healthy diet. Besides its many health benefits, such as providing much-needed energy and nutrients to your body, maintaining a balanced diet is something you can control.
8. Get regular exercise. Regular exercise can give you an emotional uplift, boost your energy, and reduce stress. Finding something you like to do and setting reasonable goals will help you make exercise a part of everyday living. At times when you experience fatigue, a little physical activity can help you feel energized.
9. Don’t sweat the small stuff – focus on what is important to you. Identify the sources of frustrations in your daily life. Focus on the positive aspects of your life by keeping a personal journal or forming a new habit or hobby. Direct your energy toward activities that improve your quality of life.
10. Live the best possible life every day. An MPN diagnosis should not put your life on hold. Set goals, build genuine connections, make it a priority to do something that makes you feel good every day. Accept that some days will be better than others but that doesn’t mean you can’t enjoy some small moments every day.
Want to hear from someone who understands what you’re going through? Visit CancerSupportCommunity.org/MPNs to watch videos of people sharing their experience of living well with an MPN diagnosis.
Excerpted with permission from Frankly Speaking About Cancer: 10 Tips to Living Well With Myeloproliferative Neoplasms (MPN) © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888) 793-9355.
This article was published in Coping® with Cancer magazine, July/August 2021.