10 years in credit

 

3654 consecutive days alive!

It has been 10 years since I had lifesaving brain surgery to remove the tumour from the centre of my brain. My heart stopped after haemorrhage and transfusion during surgery.

Before diagnosis, I was a mother of 4 young children. I was creative and made costumes and wedding dresses. I was an active member of some community groups and taught new skills to people. I was building websites and studying to complete my certification for web design so that my husband and I could start a website building business. Which would allow us both to work from home and spend more time with the children. I did not complete my certification as I became very ill quite suddenly.

I was diagnosed with my brain tumour in 2003 and over the course of eight years lived with a constant excruciating headache, nausea and vomiting and increasing disabling symptoms. I was on a cocktail of medication over that period which left permanent scarring on my face and neck among many other side effects.  

Even before I was told I had 6 months left to live without surgery, I knew that I was running out of time. I was physically, mentally, and emotionally exhausted from being in such extreme levels of pain for 8 years and the increasing side effects of my brain shifting, herniating, and generally being compressed. I felt I did not have much more in me to keep going. I felt incredible guilt that my children had not had a normal childhood. I felt like a burden on my husband who had taken all the parenting responsibility, providing for the family financially and having to take on the household chores. For me, going into surgery, I was not afraid. Any outcome for me would be a good one. If I died there would be no more pain, if I did not regain consciousness there would be no more pain, If I made it through the surgery and it was successful there would be no more pain. I was concerned about my family and how they would cope if things went badly.

Since then, I have worked hard at recovering physically, mentally, and psychologically. It has by no means been an easy process, but I have managed to get this far. As part of my self-guided method to improve my memory I have undertaken many courses of study. As a result, I have expanded from a 5-minute memory (which was shorter still immediately post-op), to study a Master of Global Public Health.

Study and course work I have completed since surgery.

Formal Education

·                     Hygiene for Food Handlers

·                     Provide Responsible Service of Alcohol

·                     Provide Cardiopulmonary Resuscitation

·                     Provide First Aid

·                     Psychological First Aid

·                     Conflict Resolution in the Workplace

·                     NDIS Worker Orientation

·                     First Peoples Health Yuwahn Wupin

·                     Diversity, Inclusion, and Belonging

·                     Certificate III Business

·                     Certificate III Business Administration

·                     Certificate IV Adult Tertiary Preparation

·                     Bachelor of Psychological Science

Self-directed study

·                     Learning How to Learn: Powerful mental tools to help you master tough subjects.

·                     Basic Science: Understanding Numbers

·                     Basic Science: Understanding Experiments

·                     Academic Integrity: Values, Skills, Action

·                     The Science of Medicines

·                     Medicines Adherence: Supporting Patients with their Treatment.

·                     Dysphagia: Swallowing Difficulties and Medicines

·                     Measuring and Valuing Health

·                     Medicine and the Arts: Humanising Healthcare

·                     Communicating with Empathy

·                     Improving Healthcare Through Clinical Research

·                     COVID-19: What You Need to Know (CME Eligible)

·                     The Informed Health Consumer: Making Sense of Evidence

·                     Cancer in the 21st Century: The Genomic Revolution

·                     Inside Cancer: How Genes Influence Cancer Development

·                     Good brain, bad brain: basics

·                     Good Brain, Bad Brain: Parkinson's Disease

·                     Good Brain, Bad Brain: Drug Origins

·                     The Brain and Space

·                     Values-Based Leadership

·                     Clinical Supervision with Confidence

·                     Psychology and Mental Health: Beyond Nature and Nurture

·                     Exploring Play: The Importance of Play in Everyday Life

·                     What is a Mind?

·                     Positive Psychology

·                     Epidemics, Pandemics and Outbreaks

I have been honoured to have received recognition through -

·                     Griffith Futures Scholarship

·                     Griffith Award for Academic Excellence

·                     Aspire Award - Nomination recognition Community Advocacy.

Life since surgery has not been without its challenges. I have bilateral diplopia, dysphonia, I have lost hearing on the right, hemifacial spasm, weakness on the left, seizures both epileptic and functional, and a few other challenges. For me, it is all worth it. In a way, they have been gifts. I understand other people living with disability more than I used to and have become a disability and inclusion advocate as well as a patient advocate.

At the end of the day, it is a very small price to pay to be alive to nurse my father through to the end of his life, see my children grow up and have families of their own, celebrate 25 years of marriage to my husband this year, and see the incredible changes in the world. These last 10 years and any more in front of me are in credit. This is all time I would not have had, and I feel I should use it to improve the lives of others in any way I can. Anything from love bombing my local public transport by leaving messages of encouragement for people to find, sending balloons as thanks to ED and ER departments in Australia and the USA, making blankets and beanies for remote desert communities, running, cofacilitating and moderating brain tumour support groups locally, nationally and internationally, all the way through to the research I am currently involved in and have plans to undertake in the future to improve supports for people living with a brain tumour, their families, carers and clinicians.

Life is for living. If I can make a difference to one person's life, all the struggles have been worth it.