2) Educate yourself and prepare yourself to be your own best advocate don't be afraid to ask your doctor(s) questions or ask for second opinions.
3) You must recognize that this battle will not be easy and may affect you in many different ways (emotions, mood, fatigue, cognitive, appetite and pain).
4) You need to find an appropriate MULTIDICIPLINARY treatment facility and develop your treatment team (PCP, Neurologist, Oncologist, Ophthalmology, etc.).
5) Contact your insurance provider and ask to be assigned a "case manager" who will know you situation and be your primary point of contact for insurance issues.
6) YOU need to keep ACCURATE, FULL, ORGANIZED and EASILY ACCESSABLE health records, billing statements, and insurance statements for your reference.
7) Find as much POSITIVE information as you can about PCNSL especially treatment options, know and believe personally that there is HOPE!
8) Make and pursue positive plans for your future and don't let the uncertainties of tomorrow stop you from living today as fully as possible.
9) Know that you are NOT ALONE personally, socially, physically or spiritually. There are others out there who've been there and done that, so connect with them.|
10) Many people will offer support ACCEPT their offers. Their support will help you and they'll be rewarded by knowing they could help you through these tough times!