Amber and Brett
Brain Cancer 🧠 and Burnout: Finding Hope and Healing Amidst the Chaos. Trigger⚠️Warning.
Like most people starting out in life, we had hopes and dreams. We were newlyweds, building a bright future together. Before we knew it, we were blessed with the arrival of our beautiful boy. However, what started as a dream turned into a nightmare when my husband suddenly turned blue (hypoxic) and had a tonic-clonic seizure. It was a terrifying experience, evidenced by my blood-curdling scream, which was the last thing my husband remembered before slipping into unconsciousness. I thought Brett had died that day.
After two brain surgeries, radiation, and chemotherapy, we are grateful that he is here with us now. However, we are the exception. Brain cancer has a high disability and mortality rate. For many, there is little time to adjust or adapt to the disease. People are untrained and unprepared for its catastrophic effects. Like a tsunami, reverberating into every area of life, consuming significant amounts of time, energy, and resources, leaving a trail of destruction and debris to deal with.
Living in obscurity, uncertainty, and in a constant state of flux, the pressure is on to continually adjust and adapt to the unique neurocognitive and neurobehavioural changes and challenges brain cancer brings.
The exhaustive impact on your mental, emotional, and physical well-being, along with compassion fatigue, easily leads to being stuck and burning out. There seems to be a moral obligation for people in caregiving roles to be all things to all people, even in the midst of a major crisis.
I learned the hard way that continuing on this trajectory was unsustainable and burnout was inevitable. I realised I had to draw a line in the sand and find another way or risk my own health problems. Who would take care of my boys then?
Wherever you are on your trajectory, know that even a little bit of hope goes a long way. Treat yourself with kindness, self-compassion, and tender loving care. If you need permission to put your needs first, you have mine; self-preservation is not selfish! Your time and energy are precious, so conserve and use them wisely. Balancing the heavy burden of brain cancer requires making the most of your resources. Make time for what and who matters most and create space to connect with yourself, to people, and to a presence greater than yourself. This will help you cope, find meaning, and gather the energy and courage to face and move through life with this burden on your back.
You may have to learn self-advocacy the hard way, but it's worth knowing. Ask for and accept help, and set healthy boundaries with those who get in the way of you and your well-being, whatever that looks like in the scheme of things. Try to move on from people who act like arseholes, as Einstein says, "life is like riding a bike”, to keep shaken to the core as you face financial insecurity, social isolation and your sense of safety and identity is discrimination whilst witnessing the true colours of those who claim they care for you.
Patients and families can struggle to maintain some sense of balance, quality of life, and purpose, while caregivers, who often lack support and acknowledgement, frequently find their voices unheard. There is an expectation for individuals in the care economy, as well as those in other giving roles like healthcare, education, and parenting, to give all they can to the service and care of others, regardless of the significant cost to their own health and well-being. your balance, you must keep moving". However, conversely, don't forget to stop. Take a moment to just take a breath. I know the burden can feel heavy and the pressure can grip at your heart and feel like a knot in your guts. So please remember to stop and breathe and listen to the rhythm of your heartbeat, to hear its call, and to call out. You are not alone.
Love to you x Amber Green
www.flarebird.com