‘All I want to do is live’: The painful private battle of a wine industry legend
A shock throat cancer diagnosis rocked the world of Ang Tolley. But the support of a guardian angel and her pride in the Penfolds family dynasty salvaged her voice and her life.
Professor Simon Carney is one of Australia’s top ear, nose and throat surgeons.
On an Adelaide morning in November 2020, he took one look at a distressed Ang Tolley in his consulting room at the Flinders Medical Centre. Immediately there was only a single, dreaded word on his mind.
Tolley, a descendant of the famous Penfolds and Tolley wine family dynasties and co-founder with sister Bec of the famed Penley Estate winery in South Australia’s Coonawarra region, had been coughing terribly for weeks. She’d turned 60 that year.
“I had been having troubles and they couldn’t work out what was wrong. I finally got an appointment to see the specialist and he put a camera down my throat and immediately said ‘You have cancer’,” Tolley now whispers to me, sitting in the McLaren Vale home office of her partner David Paxton, who has nurtured the vineyards for his Paxton Wines business in the region for three decades.
Paxton, who was with Tolley – his partner of the past quarter of a century – for her visit to Carney that day, remembers the abrupt words of the specialist like it was yesterday.
“He took one look at her and said ‘You have got cancer, you are going to have to cut all this out,’ pointing to her voice box.
“He told her ‘You won’t be able to talk, you will breath through a hole in your neck, so just go away and think about it’. We stepped outside his office, looked at each other and said, ‘What are the options? Death or endless radio and chemotherapy and possibly no result?’
“So we went back in and said to him ‘We accept your advice’. We made the decision very quickly.”
Within days Tolley had her voice box removed through a complex laryngectomy procedure performed by internationally renowned robotics surgeon Dr Andrew Foreman.
“The specialist was very clear about the technology. I told him ‘All I want to do is live and I’ll talk like Stephen Hawking if you keep me on the right side of the grass’. I knew my chances were greater with surgery,” she says.
Thirty subsequently brutal sessions of radiotherapy, where she lay on a table wearing a thick mask for the treatment, left her physically and mentally scarred.
She didn’t have a voice for six months and had to communicate with pen and paper, and by computer.
In May 2021 her ENT surgeon made a puncture in her throat and installed a voice prosthesis that is now changed every six months. She can die from pneumonia if it leaks into her lungs.
She was asked to record her voice before the operation to help with her rehabilitation and now uses the vibration of her oesophagus to talk, which also requires her to put her hand to her throat.
Her situation is complicated and life changing.
But Tolley’s saviour was a year of intensive therapy after the operation with an Adelaide speech pathologist named Lee Pryor from the Royal Adelaide Hospital.
Pryor’s support has meant that despite her trials, Tolley has continued to run her award-winning vineyard. Penley Estate’s chief winemaker, Kate Goodman, was recently named by James Halliday as Australian Winemaker of the Year.
Tolley says she could not have done it without her partner, who she says has been an “amazing support”. But most importantly, Pryor.
Paxton agrees that “Lee has been the key to our sanity”.
“We could call her and her support has been second to none,” he says.
“Lee has really been the one who picked up the ball and ran with it.”
Fighting adversity
Pryor saw Tolley eight times in the year after her prosthesis was installed, counselling her patient on the simple daily acts we all take for granted: breathing, eating, drinking, and talking.
She and her colleagues were on call seven days a week.
Laryngectomy patients are particularly vulnerable because often their altered anatomy is poorly understood by the community, including the medical community.
Particularly in the early stages after surgery patients can be fearful and anxious about what happens if things go wrong once they leave hospital. Tolley was no exception.
“I was in a business selling wine, where my job was to talk. So losing that was a really big thing for me. I saw Lee so much in that first year because I was nervous,” she recalls.
“I wanted to be assured that I was doing the right thing. She was also important because we were doing it through Covid.
“The first time I spoke, I was devastated. That was the defining moment. I also lost my sense of smell and for a time wine also tasted like battery acid but I persisted. I have to concentrate when I am eating now so food doesn’t get stuck in my throat.”
Paxton has seen his wife’s frustrations all too often over the past two years.
“It is a pretty shocking thing for a female number one. But for anyone to lose their powers of speech and how to communicate, it is a huge burden for Ang,” he says.
“Even on Sunday when we were at a social event and she knew 90 per cent of the people, she struggled to communicate because they can’t understand what she is saying in a noisy environment where they are eating and drinking and having fun.”
Pryor says Tolley’s early devastation was symptomatic of a reactive depression which is common in patients after a laryngectomy.
“As well as fear and anxiety about coping at a practical level with the altered anatomy – how to clean the airway, how to clean the voice prosthesis, how to occlude the stoma to produce best speech, etc – there is a grieving process that occurs for what has been lost. For females in particular, the loss of feminine voice can be a big loss of identity,” she says.
“Head and neck cancer is very visible and you can’t hide from it. There is often also a stigma and shame attached to it (ie from smoking). Social withdrawal and isolation can be a big problem.
Ang has coped with this remarkably well, I suspect in a big part because she has continued with work and hasn’t been able to hide from it.”
She says her client has now reached a “new normal”.
“Ang is very independent and needs little support. She will just touch base via text to let me know when the valve needs changing,” she says, noting the last change was over a year ago.
Speech Pathology Australia national president Kathryn McKinley says the ability to be understood and to understand others is a life skill that is compromised for more than 4.4 million Australians with disability who may need intervention and support from a certified speech pathologist in their lifetime.
“At any age or stage of life people can experience barriers to communication – from babies to our older Australians. Research shows that one in seven Australians will experience communication difficulty in their lifetime, creating a barrier to interacting with others and participate in everyday activities,” McKinley says.
“Certified speech pathologists help these people to communicate for life, optimising their communication to achieve their communication goals.
“With the right supports, every person with communication difficulty can overcome these barriers and live a good life.”
Family strength
Ang Tolley is immensely proud of being a descendant of Mary Penfold, the driving force behind the establishment of Magill Estate in 1844 and long regarded as one of the outstanding pioneering women of South Australia.
It was a century later when Tolley’s mother, a fifth generation Penfold named Judith Anne Penfold Hyland, met Reginald Lester Tolley. He was a member of the Tolley family who were important winemakers, merchants and distillers in South Australia.
Together they conceived Penley as a business name in 1947 when they joined the surnames of their famous Australian wine families.
But it wasn’t until 1988 that Penley Estate went into business when their children Kym, Ang and Bec joined forces to buy a block of land in the Coonawarra region. Kym Tolley was the founding winemaker.
In 2015 the sisters took full ownership of the company and hired Kate Goodman. Amazingly Goodman was named Australian Winemaker of The Year in August despite her second battle with breast cancer that threatened her ability to work.
Ang says the Penley business, whose trademark varietals are cabernet sauvignon, cabernet franc and shiraz, has succeeded because of its strong team ethos, which starts with her sibling.
“I am really lucky with my sister. We are both talented at different things. She has been really supportive and I have still managed to run the business with her help,” she says.
“But we have an amazing team. We have a fabulous winemaker and we were also lucky to have placed our wines in North America and South Korea well before I got the cancer.
“We have held the business together, Bec, myself and the team. Now, like everyone in the industry, we are finding it tough. But if we can survive the next 18 months, we will be around for another 100 years.
“I feel sorry for people who don’t have strong markets like we do.”
Tolley’s mother, Judith Hyland, was long regarded as one of South Australia’s most well-dressed women and lived a fabulous life until succumbing to dementia in her twilight years.
She died peacefully on September 19 this year at a nursing home at Port Noarlunga, a picturesque seaside town 30km south of Adelaide.
“She smoked, drank all her life and lived to 93 years of age. It’s funny her sister died about two months before. Very strange. They are up there now having a fag and a drink,” her daughter jokes.
She never let her mother know of her cancer trials.
“She had dementia so she didn’t know really. She thought I had become a bit unattractive but then that was my typical mother! But seriously, I didn’t want her to know. What was the point?” Tolley says.
“When I was in surgery I didn’t want to see anyone except my husband. It is a very private journey.”
Pryor says Paxton has been fundamental to his wife’s recovery.
“Ange was quite lucky because she had David, he was a great support and was really good at kind of calling her out a little bit as well,” she says.
Tolley puts it more bluntly.
“He was really good at being the reality check. He wouldn’t let anyone feel sorry for me or me to feel sorry for myself,” she says.
“Someone once called it fisherman’s disease; I was a smoker and a drinker. So I expect no sympathy. I have always hated pity. I wrote my own script and lived with the consequences.”
Through all the turmoil Paxton has continued to run his own business. Not once has he or Tolley considered throwing in the towel.
“Sell everything? “Oh no, no no,” he declares proudly.
“It is a focus point, it something you can focus on rather than just focusing on yourself. Ang had to speak every day for her business. We just didn’t consider selling.
“There is a financial aspect to that too because it wasn’t the time to do it. It wasn’t then and it isn’t now.”
Tolley has also had a powerful personal motivation to soldiering through the toughest time of her life. So far she is winning the battle.
“I had a reason to do it. I come from a long line of women in the business that haven’t been heralded until now. The woman in my story was the woman who created Penfolds,” she says.
“I am also too competitive to quit. There are days when you want to kill everyone. But I don’t want to give up.”
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