Anxiety when you receive a brain tumor diagnosis is a very normal thing. You are not alone if you are struggling with anxious thoughts. Please remember it is good to get help, whatever form that takes. Reach out to peers who understand what you are going through, find a good counselor, talk to your doctor about medication. Seek the tools to help you walk a difficult path.
I think just about everyone worries they are going to die when they learn they have a brain tumor or are facing a brain surgery. It is a real and visceral reaction. I feel like you can somewhat reason yourself out of this fear, citing statistics that risk of death during brain surgery is comparable to that of a gall bladder removal (extremely low). But even knowing these facts in your head may not help you feel differently. It is legitimately scary, and it is totally normal to feel anxious.
I believe while undergoing treatment and recovery there can be a lot of moments where you are waiting for the shoe to drop. Where even if things are going well it can be hard to feel optimistic. You already lost at long odds once with a rare brain tumor diagnosis, of course you feel as if more things will go wrong. If things are rocky you can feel like the hits just keep coming, and there is no end in sight.
After treatment, it can be really hard to switch gears from surviving to thriving. Having spent so much time in emergency mode, normal life can feel alien. It is easy to feel anxious that something new may go wrong, whether that is regrowth, NF2, or a whole new medical battle. It can be hard not to feel like every sniffle is a CSF leak, or each time you get tinnitus in your hearing ear it may mean a new tumor.
This is a really normal part of the process that everyone needs to work through at their own speed. I was surprised by how hard it hit me about 6-9 months after treatment. I was so scared to go out and do life because what if something else terrible cropped up. I was having thoughts like, how could I consider having another child when I was such a health risk? I think everyone finds their own path and way to work through this anxiety and tension. For me it was a totally different crisis affecting a loved one that helped me move on. It reminded me that I could waste all my time bracing for a bad thing that I am guessing will happen- wasting the possibly joyous moments- and life will still surprise me.
After going through treatment you may find medical experiences very triggering. I know I can still tense up and struggle around doctors visits and procedures. Each MRI and follow up can be proceeded by sleepless nights and stressed out days. Even when seeing doctors for completely unrelated issues, we can worry that we are going to experience another medical crisis. We all face those struggles. We have undergone a severe medical trauma. It leaves its mark.
All of this is to say, anxiety is a real part of this process no matter what stage you are in. You are normal, and not alone. There are so many different tools that can be helpful: meditation, yoga, getting outside, recreation time, connecting to friends and other loved ones, exercise, eating well, staying on a sleep schedule, journaling, keeping gratitude lists, connecting to spirituality, etc. Please work to find the ones that help and strengthen you- as you will need them. Please also be brave and reach out to professionals. There is no fault or failure in that. Take care of yourself- it’s a long hard journey.
Some resources:
The "Lucky" Brain Tumor 
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