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"The doctors have been telling me I have 12 months to live for the last 20 years!"

By Samuel Johnson & Hilde Hinton 5 min read
Thursday, December 10, 2020

Alex was 18 when she fell pregnant, and the father of the child wanted nothing to do with them once he heard the news.

Alex has always had a deep-throated cackle and a twinkle in her eye. She was stoic, even when she was young, so she packed up and moved to Queensland to be near her mum. She delighted in the responsibilities that come with being a young mum and got on with life. She found love again, got married and bought a home.

When her son, Daniel, was three, her knee began to ache. The doctor told her it couldn’t be serious because sarcoma tumours only occur in young girls or older women. Alex knew something was wrong, though, so she insisted on a referral to a specialist to try to get to the bottom of her bothersome knee. One day the pain was so bad she took herself off to hospital. Her knee was so hot her husband could barely touch it, and still the doctor inferred that the pain couldn’t be as bad as she was claiming.

Three months later, after knocking on more doors, she underwent exploratory surgery to hopefully solve the knee mystery. It was osteosarcoma; and treatment needed to begin immediately. When she arrived for her first chemo session, the new doctor was surprised to see her walking on her leg at all. Alex explained she was keeping up her prescribed exercises to regain strength in the knee. As it turned out, she shouldn’t have been exercising at all.

There was so much damage to her knee that her leg was being held together by a splinter of bone.

A replacement was ordered posthaste.

The next 14 months involved a whole lot of chemo sessions, a failed knee replacement, a case of gangrene and a dropped foot. Alex walked through all this, carting her largely useless leg around behind her. It felt dead. There were other stresses during this time. She had to give up work; Alex and her husband needed to sell the house as they couldn’t make the repayments and he crumbled under the pressure of it all. He couldn’t do the things they needed to do as a couple because he was crippled by the weight of their circumstance. She packed for herself and Daniel and went to stay at her mum’s house, to give him some relief from the day-to-day cancer drudgery.

The relationship didn’t survive—sometimes love isn’t enough. So Alex got on with it. She took charge and moved on; dead leg in tow. These times weren’t all hard. She felt loved and supported, and she made a swag of new friends who she met in her support groups. Her throaty cackle got many work-outs between hospital visits.

At the conclusion of her chemo, the doctors suggested an amputation. Alex thought, Thank God, because she was sick of carting that leg around. Next St Patrick’s Day, her leg was amputated. She had an electric wheelchair and was looking forward to getting her prosthetic leg, when she was told she was going to have to wait. The Adriamycin in her chemo regime had left her heart muscles so damaged she was given just 12 months to live.

Read: Finding hope after breast cancer

Again, Alex got on with things. Off she went to see a lawyer and Daniel was placed in her mother’s custody. She needed to know he was going to be safe after she died. This period saw her strangely calm. She started a range of medications for her "heart thing", she went on a trip to Sydney to see The Phantom of the Opera with her mum (thanks to Make a Wish), and she continued her regular appointments.

At one of these appointments, she found a perplexed cardiologist. Her health was improving. The cardiologist was more surprised than she was, and he informed her she just might make 40. She got that prosthetic leg, packed Daniel and herself up and moved back to Melbourne to spend time with the rest of her family.

Alex found another love, remarried and embraced life. Perhaps a little too much. There was binge drinking and partying. She would get so drunk that she would get angry, break things and contemplate suicide. This was the hard period for Daniel. When she had been going through treatment when he was young, he didn’t go to the hospital often. He went to day care and school and socialised and did kid things. This next period, now that he was a little older, was not so idyllic, but they got through it together.

Alex says she went a "bit nutty" for 10 years. She came to realise she wasn’t well mentally. She took herself off for counselling and gave up the grog. She worked hard and now she knows what to do with her feelings. She can see the warning signs, she knows when to take herself out of things for a day or two and no longer suffers psychotic episodes. The unexpected milestone of turning 40 was celebrated with a big, binge-drinking-free affair. Alex felt the worst was behind her.

When Daniel was 21, he was a passenger in a horrendous car accident.

He was airlifted to hospital and underwent months of rehabilitation. Alex’s second husband couldn’t deal with the stress and said he couldn’t support her. So she left him and sat by her son’s side. Her health took a turn from the worry. She believes the stress caused her diabetes, so she took charge. By hook or by crook she was going to be there for her son, despite her heart function now being down to 20 per cent. She took really good care of herself so she could take really good care of Daniel, who now had a new hip. The dynamic duo.

Daniel, like his mother, had married young and his wife’s family lived back in Queensland. After his recovery, the young couple wanted to move to her homeland to raise their future babies. Alex was not going to be left behind. She packed herself, Daniel and his wife up and off they went. Daniel had a daughter, and Alex relaxed into her new family life.

After a while, Alex’s arm would go numb and she would wake in the night with a sore neck. Off to the doctor again. Her neck was clear, but the scans showed tumours in her right breast and right lung. After a lumpectomy and some radiation, it was decided her heart was too weak for chemo. She couldn’t have medical oxygen due to her weak heart, so the usual surgical options were not available for Alex. It also meant that when they had to cut her amputated leg down further and place a new muscle flap on her stump, an epidural was the best they could offer for the duration of the operation. Doctors told her she may make her 45th birthday.

None of this has deterred Alex from enjoying her life, her family and sunny Queensland. She knows the cancer or the heart will get her, and that’s just how it is. She’s getting on with it.

"Well I’m 49 now and I’m going to make 50," she said, with a throaty cackle. "They’ve been telling me I have 12 months to live for the last 20 years!" The cancers haven’t diminished her laughter. "And then I’m going to set my sights on seeing my new grandson on his first day of school in four and-a-half years."

Well, Alex, we fervently hope you are there to see the young fella walk through those gates. God speed.


Heroes next door book cover

This is an extract from Heroes Next Door by Samuel Johnson and Hilde Hinton. Published by Hachette Australia, RRP $24.99.

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Sam and his older sister Hilde, travelled around the country to spread the message of the Love Your Sister Foundation. In the process, they connected and listened to people who shared their own stories. The book Heroes Next Door was born.