10 Join a support group.
Many states across the country have brain tumor support groups. The Florida Brain Tumor Association has several support groups across the state. You will find your meeting time invaluable. They provide a wonderful, safe place to share experiences, exchange information, laugh, cry and best of all, you discover you and your family are not alone.
9 Find time for yourself. We all have very busy lives. Our priorities since our diagnoses have been drastically changed and narrowed down to the few most important things in our lives. Discover where you want to spend your energy and who you want to spend your time with. If you have a place you like to go by yourself, a peaceful place, make time to visit it. Take time for you.
8 Take naps. Don’t be embarrassed to excuse yourself and get the rest you need. As we all know fatigue is a big part of the brain tumor picture; listen to your body. If it’s asking for rest, you need it. Sometimes even a “power” nap can make a difference. Give it a try.
7 Empower yourself with knowledge. Learn as much as you can about your disease, ask questions until you are satisfied with the answers. Knowledge is power. The FBTA “Sharing Hope: Tumor Talk” brain tumor conferences are a great example of where one can learn a tremendous amount information. CD’s are available if you’ve missed any sessions you might have been interested in, or you just need to be sure to have the information on hand.
6 Find a close friend or family member that does NOT have a brain tumor. He or she can help you sort out your thoughts and feelings. Someone you can trust to help you with decisions. Sometimes I need my thoughts outlined for me. You may find that your thoughts don’t flow like they used to. They may be fleeting and disorganized at times. Someone who can help at those times will be really valuable.
5 Ask for help. It’s hard to lose independence, especially if you’ve been very independent your entire life and you’re used to doing things on your own like I have. People really do want to help…if they offer, why not take them up on it? After a while, you might even enjoy it! I understand there may be times you feel like a burden and it is hard to ask, but the truth is, is you don’t ask, how will they know what you need?
4 Accept the limitations you have. Move forward, find something to replace what you used to do. Don’t look back at who you used to be. Instead, accept the challenge to find out who you are today. What is it that you can do to make you feel useful and productive again NOW?
3 Believe in yourself. Trust your body - listen to it. Your body is the best doctor you’ve got. Let it be your guide. I’ve done this for 18 years. I diagnosed my brain tumor myself, my body was telling me, through symptoms, that it was there. This was over a year before the medical community could find it.
2 Always be pro-active. Never be re-active. Seek second, third, forth opinions, whatever it takes - until you are satisfied and feel complete trust in the medical team you have chosen as a guide for your future. Never let anyone stand in your way of what you know in your heart. Be assertive. If you’re not sold on what your doctor is telling you, don’t be intimidated to make a change or at least challenge them with a list of questions. Let them know your thoughts and ideas. There is nothing more fierce than a brain tumor survivor who lives 24/7 in fight mode, is there?
1 Live life. Enjoy it’s challenges. I’ve learned sometimes you’ve got to learn how to dance in the rain. Live life like I do, every day’s my birthday.