So often we hear the statistics behind a brain tumour diagnosis, without understanding what it’s really like to live with one. At brainstrust we believe you are a person first and a patient second. That’s why for GBM Awareness Day 2022 we’re sharing the words of the glioblastoma (GBM) community so the world can understand the impact of a GBM beyond statistics.
What is life with a GBM like for you?
In one sentence? Terrifying and exhausting.
Living with GBM is a rollercoaster; scream when you need to, hold on tight to the glimmers of joy and exhilaration that are still there to be had but which you need to BE THERE for and keep getting on for another go even when you think you might be sick!
My life feels so uncertain, so I make the most of every day.
On learning of the diagnosis of an inoperable and incurable disease, I was inconsolable, emotionally changing on a daily basis from a sense of imminent loss of my past life, with no way of controlling the inevitable, to a sense of injustice, denial and anger.
Several months on, with the help of counselling, I am now almost at a point of acceptance getting on with life but importantly open to any potentially beneficial adjuvant treatments after chemoradiotherapy, as a focus of hope instead of dread and fear.
Always try to have things you need to be alive for; both little things like sitting on the sand with the sun on your face, and bigger things like celebrating a graduation!
If you or someone you love has a glioblastoma diagnosis, we have a specially curated GBM hub that can help you navigate the choices and challenges you have to make. Click here to visit the GBM Hub.
Please don’t forget you can reach out to us at any time, we know and we are here to support you.