I say knowledge is power, because through learning you can discover hope! We chose to educate ourselves about Mike's specific tumor and brain cancer as well as the symptoms he was experiencing. The way we always viewed how we were going to handle Mike's diagnosis was by being active participants. We put aside our own fears of what we might read, or see. We both knew what could happen because he had cancer, but we wanted to learn what also could happen when we fought, what tools we could use to equip ourselves to fight and how to combat cancer. That's why we viewed knowledge as power. It gave us the hope to fight, together. For example, we researched new treatments and even brought them to his appointments and had discussions with his doctors if Mike was a candidate for the treatments we found. We found this to be empowering and the doctors could see that we had a vested interest in Mike's health.
It can be frightening to learn about your tumor. I realize not everyone is comfortable learning about their disease like we were. If you are not, I would encourage finding a relative or friend who will stay on top of the latest treatments and read up on your tumor for you. The patient and caregiver should communicate how much he/she is comfortable being involved in the educational process and determine how they will handle this. For example, Mike wasn’t always comfortable reading books about brain cancer himself, so I acted as his "filter". I first read the books and told him things I found/learned and he was comfortable with this method. I believe this is very important to communicate and set these boundaries. No one should be forced to read, or view something they are not ready to. But realize, understanding some of the medical lingo and jargon really helped Mike and I during the appointments. It further helped us communicate what was happening with family members, friends and to answer their questions about his disease.
There are many resources available if you would like to learn and educate yourself about brain tumors and brain cancer. Many I have provided links to on the resources pages.
Start small so you do not feel overwhelmed and ask for some help from your caregiver, family or friends.
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