Life is complicated and hectic, with a devastating diagnosis causing seismic shifts in everything, and in everyone in my family.
My life is now dedicated to research, pushing doctors to take us in, arguing with gatekeepers of the wards, seeking second opinions and preparing for something that we are never really ready for, not matter how much we claim ‘we’re all dying anyway.’ We take on our roles in a crisis and mine is researcher and pushy bitch.
A dear friend, whose sofa I sat on for hours and cried after I learned the truth of the matter, told me that I am about to learn a lot about a horrible topic.
‘I don’t know how to do this,’ I cried to her.
‘Be the best version of you, you can be right up until the end.’
So that’s what I’m doing.
If I dip in and out of this blog, forgive me. Right now, I am working two jobs, trying to get a kid through her final year of school, trying to stay well and sane, and learning about the frailty of body and spirit, and the enormous power of love from friendship and family.
Thank you to those who know and have reached out. Thank you to everyone who reads this blog, or those who are left, and thank you for reading this, whoever you are.