Anyone who has had or has a brain tumour knows it’s very difficult to let people know how you feel through your Journey or after.
I am very lucky to have an amazing family who totally understand (They have ALL read the book below). They let me take breaks when I need them, skip events and dinners if need be and are just there for me in general.
I’m going to keep this post short, because anyone in my situation knows it’s very hard sometimes for others to know how we feel inside.
We will never be the same (which can be positive in some areas). Sometimes people think that once we are done treatment, like a broken leg, we should be able to get right back to “normal”. It’s not always the case. I think my recovery has been going amazing but I still get exhausted sometimes and just need to simply go sleep for 2 hours and get away from everything.
Others I know have issues being in large groups, so they have a hard time going to events where there are a lot of people as they get overwhelmed easily (I totally get this although I’m much better now). Sometimes this can cause issues with the relationships and people can get upset with you, but you need to take care of yourself!
A book that has helped my family and me is The Brain Tumor Diaries: Impressions of the Brain Cancer Experience. It’s written by long time survivor Scott Norris – It’s written in an amazing, poetic way that makes everything make sense. There were a few “AHa” moments for my family when they read it. It’s a small book that that only takes a couple of hours to read. It’s amazing how similar Scott’s story is to mine. I couldn’t believe it! He’s now an artist and enjoying life, which is truly inspiring for me.
Scott Norris is a long-term brain cancer survivor. In this book he allows the reader a rare glimpse into the body, mind, emotions, and spirit of a brain tumor survivor as he journeys through diagnosis, treatment, recovery, survivorship, and beyond. His experience is told in a raw poetic form because, as he says, “There is no grammar or punctuation surrounding memories of brain surgery, radiation, or Gamma Knife radiosurgery; trying to think again with a new brain; laying in an MRI tube scared out of my mind; experiencing seizures; or trying to learn to fit into a whole new life. There is no grammar that can make the experience seem more elaborate or eloquent, or for that matter any more real. There is just experience. No fluff. No fancy grammar. No big words. No proper punctuation. Just experience. And the impressions left behind.”
Lots of love,