How to Manage Your Disease and Maintain Your Quality of Life
People can live with polycythemia vera for many years without experiencing any symptoms. This means that for some people who have been diagnosed with PV, but who aren’t experiencing symptoms, doctors may advise against starting any kind of chemotherapy, but will initiate phlebotomy and aspirin therapy.
People living with PV can experience feelings of worry and fear about living with a chronic condition and experience concerns about whether their cancer will transform into more aggressive disease like acute leukemia or myelofibrosis. Living with this uncertainty can be stressful. It is important to bring up any concerns you have with your doctor. By talking to and working with your healthcare team, you can take charge of your life with polycythemia vera.
You will find your own path and develop your own strategies to manage your disease and maintain your quality of life, but here are some tips that can help.
• Don’t try to do everything at once. Stay in the moment, as much as possible. Focus on what is happening now, and what you need to do to address that situation.
• Ask for help. Many of your family and friends will want to be there for you. Be open about what they can do to support you. It is useful to be specific. Ask someone to bring you a meal, watch your children, give you a ride, or just be there on a tough day.
• Take someone with you to medical appointments and procedures. This is important because an extra set of eyes and ears often helps you remember and interpret the information you are given.
• Make time for yourself and the things you enjoy. It is important to continue to do what you love as much as possible. For some people, that is as simple as taking a walk or planting some flowers. For others, it may mean continuing to work. You may have to adjust your activities to fit your energy level and physical condition, but don’t lose sight of the importance of continuing to do what you like to do in your life.
• Try mind/body activities, such as yoga or meditation. These activities can be beneficial to a person’s overall well-being. Whether it’s breathing exercises to help reduce stress and anxiety, or guided imagery techniques to focus the mind away from current concerns, mind/body exercises can provide benefit in reducing stress for people living with PV.
• Get support. Although polycythemia vera is a rare condition, there are support groups that focus on people who have been diagnosed with myeloproliferative neoplasms (or MPNs) like PV. These groups offer an opportunity to meet and learn from other people who are experiencing the same feelings and worries, compare situations, and seek opinions. Since PV is a chronic condition, talking to others who are experiencing similar side effects may help a person living with PV to feel support and care. Talking is helpful in relieving concerns and any feelings of isolation and loneliness that people living with a rare disease may often experience. Whether that support is found in-person, through online support groups, or through telephone support groups, the benefits are the same: Receiving support helps lower anxiety.
People living with PV, and their caregivers, often feel isolated and are unsure where to go for help and information. It is important to talk with your healthcare team to find the correct information about living with PV, as well as support to address long-term care issues.
For more information about polycythemia vera, visit CancerSupportCommunity.org/myeloproliferative-neoplasms.
Excerpted with permission from Frankly Speaking About Cancer: Polycythemia Vera © Cancer Support Community. For more information about the Cancer Support Community, call (888) 793-9355 or visit CancerSupportCommunity.org.
This article was published in Coping® with Cancer magazine, September/October 2020.