Collecting information can help you and your loved one better understand, cope and manage the condition. As early as possible following the diagnosis, it is helpful to start collecting and organizing key information such as:
- Name and contact information for members of the healthcare team
- Dates and the reason/purpose of all appointments
- Copies of lab results
- Record of energy and pain levels at different times during the day
Consider preparing a chart with treatment schedules, prescriptions and lab results, and keep it where their medications are stored.
You can also use electronic or online tools such as the Myeloma Monitor, an application (app) designed specifically for people living with multiple myeloma and their caregivers. It is designed to help store and track information related to the disease, over time, in a centralized location. The secure (ie, password protected) program can run on computers and mobile devices (ie, smart phones and tablets), where all of the data is encrypted to protect your information. All of the information entered is confidential and belongs to you. Under no circumstances will your information be shared with anyone.