From home alone to living the dream: recovery from the impacts of brain surgery
After a difficult decade following brain tumour surgery in 2006, Carol Mitchell is relishing her independence again thanks to support from Feros Care and the National Disability Insurance Scheme (NDIS).
“Since receiving my NDIS funding in August 2017 I now feel fully supported in my quest to improve as much as I can so that I don’t decline rapidly as I age,” the Canberra resident says.
Until her cancer diagnosis Carol, now 60, had lived a full life, working in Brisbane in administration and customer service roles and raising her two children with husband Stuart.
“Then I started getting headaches and after two quite severe episodes I finally convinced my GP to book me in for a brain scan, which led to my diagnosis,” she says.
Carol was referred to a number of specialists, including one who suggested “I go home and enjoy what was left of my life”, before finally seeing renowned Sydney neurosurgeon Dr Charlie Teo who agreed to operate.
“The surgery successfully removed the tumour, but when I woke up I was fully paralysed down my left side and suffering from ‘hominous hemianopia’, which means 50 per cent loss of vision in both eyes and total loss of my left peripheral vision,” she says.
Carol completed her rehab in Brisbane and then made the momentous decision to move to Canberra in January 2017 to be closer to family, especially her twin sister.
“At the time my son was 12 and my daughter was nine and we were suddenly a single income family,” Carol reflects.
“Back then the only government support available in the ACT for people like me was one year of physiotherapy, then we were on our own,” she reflects. “My long-suffering husband had to do pretty much everything, including all the driving, washing and cleaning while still working full time.
“We had a small kitchen so I was able to cook by leaning on the benchtop, plus the kids were at school just across the road, but if I needed to do anything outside the home during the day it meant waiting for hours for the local community transport service.
“I’d go to the shops on my cane and felt very vulnerable, and as a consequence I only managed to attend four of the physio sessions. Most of the time I was stuck at home and felt very alone.”
Fast forward to 2021 and Carol is supported by a team of support workers and her Feros Care Local Area Coordinator Deb Hayes. She has regained movement on her left side and her mobility has improved.
“My NDIS plan allows me to hire support workers to take me to appointments and community activities, and it also funds the therapies and other supports I need to keep active and maintain my mobility,” Carol says.
“My LAC Deb is really responsive and very helpful whenever I need advice on using my plan.”
Carol has an NDIS-funded neurological physiotherapist, a podiatrist and attends regular hydrotherapy sessions. Carol also uses her funding to hire a domestic cleaner as needed, and she has been able to buy an electric bed to help with her body alignment and the pain she experiences from bulging discs in her spine.
On the recommendation of her physio she now has a Saebo glove to stretch out her left hand – which normally stays clenched due to paralysis – and most recently she has used her NDIS plan to purchase a special ankle brace to safeguard her from rolling over on her left ankle.
“I can now walk for longer periods and don’t require special shoes anymore, and often I leave my cane at home,” Carol says. “It’s just really nice to feel normal again when I’m out and about.”
With her children grown up and having time to enjoy life with husband Stuart, Carol describes her life now as “a dream”.
“It’s truly amazing, my husband and kids are really happy for me,” she says. “I am so, so grateful to Feros Care and the NDIS for their support and for giving me a quality of life and hope for a future that has a lot less pain and isolation.”
