Sarah Holden has had a tumultuous year, and it’s only September.
The 35-year-old mother of four who lives in Arcadia Vale on the west side of Lake Macquarie was diagnosed with a rare pineal cystic brain tumour early in 2018, and has been suffering increasingly worse medical symptoms while attempting to get a medical solution.
She has suffered random blackouts, which consequently limited her ability to drive a vehicle for a period.
She suffers from headache without relief, and the vision from her left eye is impaired.
“I am so tired, I am exhausted,” she says. “I get flare-ups now and then. An attack in the brain. I can’t get out of bed, I can’t move, can’t talk. I had a TIA stroke in the last month and a half, due to compression of the cystic tumour. [TIA is transient ischaemic attack that occurs when the blood supply to the brain is blocked temporarily.]
“I feel very ill most of the time.
“I’m nauseated. I don’t really eat.”
Her weight has shrunk to 48 kilos – food often doesn’t stay down and Holden has little appetite while feeling ill so much of the time.
Tumours near or in the pineal gland in the brain may grow to block the flow of cerebrospinal fluid, which can cause a buildup of fluid that puts pressure on the brain (hydrocephalus), which may cause dysfunction like vision loss or even death.
The brain tumour diagnosis came after a two-year battle with pre-cancerous cells in the cervix and uterus for Holden. She and her family were previously living in Nelson Bay, but moved to Lake Macquarie to be closer to a better support network.
The children’s paternal grandmother has been her biggest supporter. And, she adds, “My daughters’ father is great support. Without his support it would be impossible.”
The hardest part for Holden has been the inability to take care of her children. The girls are ages 15, 9, 7 and 4. The two oldest girls, Tayla and Kira, are currently living with relatives, while the younger two, Larna and Tara, are still at home.
The most satisfying aspect of obtaining a solution for the brain tumour would be a return to “just being the mum I’m meant to be,” Holden says.
“Right now, I’m bloody useless.”
Holden has been unable to obtain surgery for the brain tumour, which is about the size of a grape, through the public health system, so has ended up in the hands of the brilliant – and controversial – neurosurgeon Dr Charlie Teo of Sydney.
She has been actively fund-raising since June to come up with the $100,000 needed in advance for an operation on the brain tumour by Dr Teo.
He’s different to others,” Holden says of Dr Teo. “He gave me hope. He’s way different. I felt like he was the person who really even knew what he was talking about.”
The surgery is scheduled for October 3 at Prince of Wales Private Hospital. She will go to Sydney two days before that for an MRI, which help guide Dr Teo’s surgical procedure.
No question, this is the way. I either get it done and it’s a success, or I don’t get it done and lose quality of life and live in pain, or possibly death at the click of the fingers.- Sarah Holden on having brain surgery
Holden says Dr Teo estimates he has a 95 per cent success rate with this type of brain tumour surgery. The recovery process entails a few days in the Intensive Care Unit and another four days or so in a ward. It could take up to a year for her to regain full health.
Of course, there are surgical risks as well. She could lose all or part of her vision or movement, become paralysed, or die.
But the decision is simple for Holden.
“No question, this is the way,” she says of the surgery option with Dr Teo. “I either get it done and it’s a success, or I don’t get it done and lose quality of life and live in pain, or possibly death at the click of the fingers. I’m certainly not going to roll over for 5 per cent [risk].”
It will not be until 10 days after surgery when Holden finds out the results of a biopsy on the removed tumour, and really knows what’s in store next.
She isn’t spiritual and places no blame for the brain tumour – “I just think it’s potluck”.
“I’m not spiritual at all,” she says. “I just want it out, just want it out. I don’t wish it on anyone.”
If the surgery is successful, she will be looking forward to Christmas with all of her daughters under one roof.
And a good meal she can enjoy. “A good big massive chicken parmy and big fat chips and salad. A wine would go down lovely,” she says.
Holden has been raising funds for surgery through a gofundme campaign online (Sarah's fight 4 brain surgery) and events.
Sign up for our newsletter to stay up to date.