Brain cancer strikes young family twice - and leaves an unexpected legacy

Less than a year after Sally Lloyd Stolzenhein had a brain tumour removed, her long-time partner and father to their five children Tom McLeod also needed urgent brain surgery – but his resulted in an unexpected side effect.

“He and I were overwhelmed before any of this,” Ms Lloyd Stolzenhein said. “Now it’s like, what just happened?

“He was my rock, my support, the one that I leant on and I needed him to get me through day-to-day life. Now I’m that one in the position that everyone is leaning on.”

The young Far South Coast family, who live outside Bega in the rural locality of Numbugga, has endured a devastating chain of events over the past few years.

First, the Yankees Gap bushfire burnt their property in 2018, then they had to evacuate when the Black Summer fires passed nearby in 2019-2020.

Later, Ms Lloyd Stolzenhein began to have “strange headaches” along with sensitivity to noise and panic attacks, saying it felt like “a busyness inside [her] head”.

Following scans in Canberra, she was told she had a cancerous astrocytoma tumour, which was removed in March 2021. But even today she sometimes struggles with her recovery.

“Simple things like making a coffee and a piece of toast can be like climbing Mount Everest sometimes,” she said.

During this period, Mr McLeod took time off from working at Bega Valley Shire Council to help her and their children, who are aged between two and 10.

But he had headaches all January 2022 and, 12 hours after an MRI scan revealed a colloid cyst in his brain he, too, had to undergo surgery in Canberra.

“I couldn’t really believe it. I didn’t have time to think,” Ms Lloyd Stolzenhein said.

She said while the cyst was non-cancerous, it could stop the flow of brain fluid and if it hadn’t been removed at some point, he would have died.

It won’t return, she said, but due to a combination of the surgery and medications, he developed an organic psychosis.

“That was pretty eye-opening,” she said, adding that as soon as she saw him post surgery she knew he wasn’t himself.

An organic psychosis can involve delusions or hallucinations after a person’s brain has been disturbed.

Mr McLeod has stabilised in the past couple of weeks and seems “pretty much back to his normal self”, Ms Lloyd Stolzenhein said, but it will be unknown for a time whether the organic psychosis will result in a permanent change. He will need six to 12 months to recover.

She isn’t sure what will happen in the near future, but said: “being together will help”.

“Seeing your partner walk away from you and being taken back into hospital where you can’t see him is more heartbreaking than you realise until you go through it,” she said.

Sadly, the end of the journey is not in sight for Ms Lloyd Stolzenhein herself in regards to her health. She said statistics say tumours like the one she had can grow back, so she has to have continual scans for years to monitor for its possible return.

“It’s just one of the things I have to block out now because it gets you down too much,” she said.

Ms Lloyd Stolzenhein spoke to Region Media because she wanted to raise awareness of organic psychosis, saying they had no idea it could happen.

“Since experiencing this with him I feel it’s so important anyone experiencing mental health issues has someone to advocate for them,” she said.

She said once their lives settle down, they want to find a way to support people going through organic psychosis, such as creating an information site or support group.

A GoFundMe page has been set up by friends of Ms Lloyd Stolzenhein and Mr McLeod to help support them and their family through the next six to 12 months while he recovers.