One of the most important things you can do is surround yourself with positive stories of survivorship and successful treatment. Keep statistics in perspective. Though there are median survival rates, there are also people who have beat those odds and live years after diagnosis. Don't fixate on the numbers, think about what will help you feel the best you can feel.
"You are going to instantly want to go back to 'before my brain tumor diagnosis.' There is no going back, and it is better to concentrate on getting well, healing, and moving forward. There are more and more people everyday who beat brain cancer, and you can be one of them too."
Have a trusted friend or family member go with you to meetings with doctors. Stress and fear are memory inhibitors, and you may not always feel comfortable asking questions. Both you and your supporter should always take notes and ask questions.
The number of friends and family that want to have updates on your journey will likely be overwhelming. Find web tools and communities that are easily updated, such as social media or private websites that can be personalized. Consider web tools such as CaringBridge, Facebook Groups, and Google Groups.
When friends and family want to help, it can be useful to put together a wish list of tasks that are easy to delegate. Be specific about what you need: a ride, help with shopping or help making phone calls. A great help in this area is a meal scheduling website like Meal Train or Take Them A Meal. Think of it like a registry — people want to support you, and there are ways to empower them to give that help.
Other sources for support can be:
- Nurse advocates can help you understand your treatment, coordinate your healthcare, deal with your health insurance, help you find clinical trials, and more.
- Consider looking into support groups, both in-person and online, but keep in mind that you are not obligated to stay if the group doesn't suit your needs.
- Even if you have a lot of people in your life you can talk to, personal counseling can allow you to talk to someone who is outside of your situation.
Your sense of calm, comfort and wellbeing is paramount to your treatment. Make sure that key people in your life know what your beliefs and wishes are. This will be critical for people to respect your beliefs.
"Not to sound at all trite or cliché, it is true that we need to remind ourselves a lot that all of our cancers and other ailments are not what define us, and we can live with our disease."
Many people find joy in helping others who are going through the disease, or in raising money for brain cancer research. ABC2 offers opportunities to get involved by joining an event, organizing an event, or personal fundraising.