Having spent her working life as a teacher and with her kids grown up, Jan was living life in regional Victoria with her husband Rob. It was a busy, active life, typical of a woman in her 60s - full of friends, family, the arrival of her first grandchild and punctuated by frequent overseas vacations, discovering new and exotic locations.
On a trip around Europe, Rob first noticed Jan being more tired than normal. She was unable to walk very far before she was searching for a place to sit down, and then there was the unexplained bruise on her leg.
“I think that Jan had been hiding just how unwell she had been feeling for a while. Jan had always had an aversion to doctors and hospitals. She was a hardy, stoic person, having survived breast cancer and its treatment in 2003,” explained Rob.
From fighting fatigue to a grim diagnosis
But on Rob’s first day of retirement in July 2014 Jan was unable to conceal her illness any longer.
“It suddenly became clear to me just how frighteningly unwell she was. She could barely make it from the bedroom to the kitchen. I insisted she go to the GP that day and Jan was promptly sent to hospital.”
By midnight they had discovered Jan had leukaemia. Jan was quickly transferred to a Melbourne metropolitan hospital. Further blood test results revealed the extent of her illness - chronic lymphocytic leukaemia.
Jan’s haematologist tried a light chemotherapy regime at first, but it was not effective so they had to treat her with a stronger chemotherapy agent that required them to live in Melbourne for several months. When Jan’s progress results were assessed the decision was made to stop treatment early. Despite this, her treating doctors were however hopeful that she would experience a remission of around 7 years leaving Rob and Jan feeling relatively optimistic about the future.
Unfortunately just four years later Jan received news that the leukaemia had returned. She was started on immunosuppressive therapy however the doctors were clear that there were limits to the efficacy of this treatment.
Tempering bad news with optimism
Now that the leukaemia had returned and pathology indicated concerns for her future wellbeing, Jan’s medical prognosis was not great. But as stoic as ever, Jan was still determined to live as well as possible.
“While we knew the treatment would not provide a cure, we were grateful that it could give her more time.
“We continued to travel, though less ambitiously. We had to change plans to travel to the US, following problems accessing insurance, so ended up travelling closer to home with a trip to New Zealand.”
One last adventure
Jan’s health continued to decline, yet her desire to seek new adventures did not wane. In May 2019 Rob and Jan embarked on the Indian Pacific rail journey from Melbourne to Perth – a rite of passage for many Australian “grey nomads”.
“Jan loved to travel, even as she was growing sicker. It gave her a focus and a change of scenery seemed to be a welcome distraction.
“Not far into our journey Jan’s temperature would spike a bit in the afternoon, lasting only an hour and then disappear as quickly as it started. We’d been informed by her treating doctor to go to hospital if she had a temperature above 38C but as they were not long lasting, and only rose slightly above 38C, Jan insisted she was fine to continue the journey.
“By the time we got to Perth her temperature climbed and we started her on the antibiotics that we always travelled with.
“I was wary about continuing our journey but Jan was confident that the antibiotics would make her better.”
The next day they picked up the hire car and travelled to southern Western Australia. Not long after they reached their destination, Jan collapsed and was rushed to hospital. Armed with papers, doctor’s letters and medication lists, Jan was soon admitted to a regional WA hospital.
“Jan was really sick at this stage. It took five days of exhaustive testing to discover that she had a fungal infection in her lung which had then spread to her brain. It was very serious. The hospital staff informed us that she urgently needed to be transferred to a Perth hospital for treatment, as they did not have the medications or specialist care that would be required. Jan had been unconscious for several days and could not provide any assistance in her own decision making.
“During the five days of testing, before diagnosis, I was investigating the possibility of a transfer home to Victoria so that she could potentially die at home. It was something that we had discussed. She did not want to die in a hospital and I had promised her that I would do all that I could so she wouldn’t die in a hospital. We were in conversations with a private organisation to facilitate the flight home, accompanied by medical staff.”
Making choices for Jan
Knowing Jan’s aversion to hospitals the family had a quick phone discussion and resolved that a transfer to Perth, with associated invasive treatments and a “very poor” outlook would only prolong Jan’s suffering and would be against her wishes.
“We made the decision to keep her comfortable and not transfer her to another hospital.
”Immediately our son set out to join us in Western Australia. He works in healthcare and was able to confidently advocate for Jan and importantly ask the right questions to maximise her comfort.”
Jan’s condition deteriorated rapidly. She died a few days later. Jan’s family were comforted knowing that she did not have to endure more testing and treatment that would most likely have prolonged her suffering.
“I think the hardest thing was having to make such a big decision about Jan’s care without being certain of her wishes. As Jan’s diagnosis had progressively got worse, her doctor and I had encouraged her to write an advance care directive, but she never did.
“An advance care directive would have given me more certainty that I was making the right decision for Jan as we would have been interpreting her written wishes.
“I miss her every day, but I'm grateful that Jan was able to live five years beyond the initial leukaemia diagnosis. During that time, we managed some travel and she got to see three new grandkids come into the world - that’s something to celebrate.”
Taking active control of his own future healthcare decisions
The life-changing experience motivated Rob to write his own advance care directive within a month after losing Jan.
“Making treatment decisions under these circumstances is a terrible burden for families to bear – particularly when they are already suffering.
“I now have my advance care directive in order. Having lived through this experience advance care planning is something I feel very strongly about. We need to do whatever we can to make it easier for family members who may be left to make difficult decisions for us, if we can’t. Advance care directives have the potential to lessen their grief,” explained Rob.
* Names and personal details have been changed for privacy reasons