For the past four years, 56-year-old Jane Mumford has been battling Multiple System Atrophy Cerebellar type (MSA/C). This is a rare degenerative neurological disorder which affects the body’s automatic functions. There is currently no cure for MSA and no way of slowing down the progression.
Jane hopes her experience with palliative care at the Central Adelaide Palliative Care Service (CAPCS) at The Queen Elizabeth Hospital (QEH) will raise public awareness of how palliative care can help people in need.
“As a youngster growing up in a National Children’s Home in England, I was at my happiest being active. I loved playing outside in the garden or on a swing set, attending Girl Guides or going to church.
At the age of 18 I joined the British army and later became a Sergeant. During deployments I was in many different countries where I witnessed many moments – some good, some bad and some historical. I stood at Checkpoint Charlie as the Berlin Wall was taken down, served in the Falklands after the war, ran half-marathons and climbed mountains.
But the biggest mountain to climb that would test my strength, my humour, my endurance and my positive attitude to life, was yet to come.
In 2007 at the age of 47 I migrated to Australia with my two youngest children, Jordan and Georgie, while my eldest daughter Louise stayed behind.
I had a job I loved – as a national logistic manager for One Steel. However, my resilience started to be tested when I began to experience unusual sensations travelling down my left leg while running or gym training.
For the next six years from the age of 47 to 53, there were many tests and scans. Eventually in 2018, I was diagnosed with Multiple System Atrophy Cerebellar – a very rare neurological disease.
Generally, after a diagnosis like this, people think “Why me?” But, not me. I thought “Why not me?”. I’d sooner have it than anyone else.
I have a lot of faith in God. There’s a reason for everything and God gives you what you can carry.
But I have still questioned God because you don’t ever get respite… ever.
Living with constant pain and broken sleep is hard. When the pain strikes in the morning, it goes bang, just like a tsunami.
In the last 18 months I have had three stays of up to three weeks each in the Central Adelaide Palliative Care Service (CAPCS) which operates from The Queen Elizabeth Hospital.
My case is so rare that it is relatively unknown but Emma, my consultant and my first angel in palliative care, went above and beyond to find out more about my condition from my neurologist Professor Wilcox.
I’m also grateful for the teamwork and care of my two consultants – Dr Penny Stewart and Dr Ben Kennedy, who are new to palliative care. Thanks to them I can now take painkillers in the comfort of my home, with visits from the nurse.
Being prescribed anaesthetic medication – Dexmedtomidine and Ketamine means I now have pain relief down the left side of my body. And although I will never regain the use of my left arm, the level of pain has dropped to a 4 out of 10 instead of being off the chart.
Until recently I was taking 52 tablets a day, to take the edge off the pain, but now it’s around 20 tablets.
I try and take one day at a time. Christmas will be special as I will spend it with all my family – my one-year-old grandson Jacob who is arriving from England soon with my eldest daughter Louise, my son Jordan and daughter Georgie.
All the staff in the Palliative Care Unit are my angels. I felt their warmth, their love and their ability to understand without me even saying anything.
The whole team are my everything. They help me feel safe. I’ve never experienced anything like it. I feel protected and cared for.
Palliative care has been my safety net. They arrived in my life at the right time. Palliative care – they are my heroes. They are my angels.”
Palliative care helps people live their life as fully and as comfortable as possible when living with a life-limiting or terminal illness. The primary goal is to optimise the quality of life.
THRF Group – Palliative Care receives no government funding and relies on the generosity and support from the community. To support the continuation of essential palliative care services, education and research, we rely heavily on fundraising. All services, programs and research initiatives are funded through our philanthropic contributions and community support.
If you would like to donate, please visit www.palliative.org.au or contact us on (08) 8243 0320.