We recently caught up with Orbital Life client (and cancer survivor, and working professional) Alexandra (Alex) Baily, who had an important message she wanted to share about her journey. Read on for a case study from a highly resilient person. “It’s a story that I’m happy to share, because I want to help people understand the implications of having a cancer diagnosis or chronic illness and their finances. I just had no idea what to expect after my doctor said I wasn’t going to be able to work during treatment.”
What would Alex Baily have done differently?
We asked Alex what advice she would have given herself pre-cancer, and she was clear on two specific things she would have done differently.
- “The first thing is understanding what insurances I did have, what I needed and how they were structured. For example, I had a policy with a two year benefit period. Even if everything goes as smoothly as possible, two years might not be enough time for many cancer treatments. In hindsight, I would have chosen something more like five years and understood how income protection works – it’s too late to do that now but it would have been helpful.
- “The second thing is to be aware of what company policies your employer has (or doesn’t have) in place for cancer and chronic illness. I’ve done a bit of research around this, and it would be very uncommon to have any kind of long-term paid leave benefits. There are so many different types of leave now but there really isn’t any such thing as ‘cancer leave’. Anything your employer does to support you is on a case-by-case basis, it’s very individual. There is no guaranteed safety net.
“I’m thankful that it turned out that I did have income protection insurance, through my super.”
“In early 2019, I was working hard at a really good job on exciting projects, but I started to get really sick and really tired. I just thought I was burnt out with work. I took myself off to a ridiculously expensive health retreat for a week, and I felt good. But then I was sick again. My key symptoms were that I was ridiculously tired all the time, I had lost weight, I had night sweats and a tickly cough I couldn’t shake.
“This was before COVID, back when we were sick, we just kept ‘soldiering on.’ I was in and out of the GP and taking more sick leave days than I ever had in my life. After six months I had this weird, heavy feeling in my chest, so I booked another appointment with my GP. The doctor said ‘You’ve been coming in a lot, I think you should go to emergency and get the tests done now because I can’t get you booked in for another week, and I don’t want you to go home worried. I thought that was a bit extreme, but five hours later I was still in emergency. After a number of tests the doctors said: ‘we think you’ve got Hodgkin’s Lymphoma. Oh my god, I thought. What is that? Is that cancer? And they said ‘yeah, that’s cancer.’
“It was a massive shock but it was also a relief to know there was a reason behind why I was feeling so unwell. Everyone was really positive; Hodgkin’s is considered very curable and either a very young person’s disease or old person’s. They kept calling me young (I was 42 at the time), so I loved that. I had no idea at that time, that this was going to be a four-year rollercoaster.”
What about work?
“When I understood the scale of treatment involved and under the advice of my haematologist (blood cancer doctor), I was advised to stop working. I had to speak with work and see what their response was. Of course, they were very supportive, but I was surprised that there was no clear policy around extended sick leave. It was not, as one colleague said to me “like going on maternity leave”! Indeed.
“It’s important for people to know what their work policies are for extended sick leave as there are no statutory obligations for paid leave (outside your accumulated sick days and annual leave) for people with cancer. There is also no legal obligation to continue to employ you if you are on unpaid leave for more than three months within a year. I was grateful my work always said there was a job to go back to, but in the meantime, I had to figure out how I was going to pay my bills!”
An accounting angel
“Serendipitously, days after my first diagnosis, I had a meeting scheduled with my accountant that had been planned prior to my diagnosis. I was planning to review my superannuation. I had five super funds – it was time to roll them into one like a proper grown-up!
“I had just received the worst news of my life however I decided to keep the appointment. The first thing my accountant said after learning of my cancer diagnosis was, ‘Well, we need to see if you’ve got any income protection insurance in any of these superannuation funds.”
“My accountant referred me to Nick and his team at Orbital Life and with their help we discovered that I had two super funds that included income protection. I had one policy that covered me for a small amount of income until the age of 65, but it wasn’t enough money to live on. I also had another policy that covered 75% of my salary but only for two years. There was a considerable amount of paperwork and a long waiting period. I was diagnosed in June and my first payment of insurance didn’t kick in until November. Luckily, I had some savings however it was a scary time in my life. I had all these outgoings and absolutely nothing coming in. I had started undergoing escalated treatment and I was losing my hair. It was a really intense, emotional time. Having Nick and Lauren on my “team” helping me with the insurance side was really comforting.”
Nick helped to clarify the complications of having two policies.
“The maximum benefit that Alex was eligible for was 75% of her pre-disability income. As these two policies covered Alex for more than 75% of her income, neither was going to pay the full benefit. We had to run a claim with two separate super funds, with separate insurers and find a way to get them to communicate. It meant double the paperwork and getting doctors to send duplicate information to two places. All this while Alex was trying to navigate a really stressful situation.
“Alex was paying for two policies but didn’t get the full benefit of the two. She was paying for something she couldn’t use.”
“Again, it feels like a fluke and I am lucky I even had these income protection policies,” says Alex. “These were secured when superannuation companies automatically locked you in for insurances, I am not even sure if I ticked the box! If I could see into the future, I obviously would have given it more thought. It’s important for people to know, as now you have to make sure you have opted in for the insurances superannuation can provide. If I had my time again, I would have spoken to someone like Orbital Life before I went into a health and finance crisis!”
Back to work just in time for Freaky Friday
In 2020, Alex finished her treatment and went into remission. She went back to work and was able to, with the help of her income protection insurance, do a gradual return.
“Then, within a week of going back to work, it was Freaky Friday (or that’s what I’m calling it anyway) – the 13th of March 2020 when everything went haywire [due to the pandemic] and all of a sudden we were working from home. It was a weird time to go back to work. After what I’d been through in the six months prior, there was part of me that thought ‘oh well, I’ve totally been training for this’, you know, being isolated and really careful with my health.”
“In April 2021, I found out I relapsed. This was a massive blow, and the treatment was going to be much harder this time. I had an autologous (own cell) stem cell transplant in July 2021. I had to go back to my employer and say ‘Ok, guys, I’ve got cancer – again – and I’m not going to be able to work, again.’
“Fortunately, I had built up a bit of savings during the COVID year, and because I had been back at work for six months my income protection benefit period reset giving me an additional two years’ cover. Again, the message I have for people is not to rely on sheer luck. Seek appropriate advice. Speaking with Nick and Lauren at Orbital Life gave me so much clarity and support. Had I made the effort earlier, I potentially could have had a whole different solution in place, and a much clearer understanding of the role of my insurance.”
“Unfortunately, the stem cell transplant that occurred in July 2021 didn’t work. I relapsed again that October, which was honestly the most devastating news of the whole time. I had already been through a lot and there was even more, and worse, to come. In July of 2022, I had an allogenic (donor cell) bone marrow transplant (literally the cells were flown in from Germany). It always seemed like a stem cell transplant is just an infusion, which in some ways it is, but first you have to have a huge amount of chemo to clear out the system before the new cells. The nurses said ‘it’s like dying and being reborn.’ You basically regrow a whole new bone marrow and immune system, even your blood-type can change… Science is amazing! Luckily it looks like this last transplant and round of treatment has worked! I’m celebrating by giving myself two birthdays every year, my actual birthday and now my rebirth “German” birthday!
“However, this second round was also financially tougher – as far as insurance was concerned I was still getting 75% coverage, but it was 75% of my previous 12 month income. As I was only working part time during that previous 12 months my payments were significantly reduced. The financials stressed me out, and the other thing that started to worry me was my job. There is no clear legislation if you have been on unpaid leave over three months. I did have a moment where I thought, ‘what if I lose my job?’ Thankfully, my work was supportive so I did have a job to return to, but it did weigh on me.
“I’m pleased to note that as of now, I’m cancer free, and beginning my return to work process (again), working to build up some strength and stamina. I am very immune compromised and have to get all vaccinations again (polio, chickenpox, measles) which adds an extra factor to consider when returning to work. It’s been a really hard slog, but we’re getting there. I’m excited to start a new chapter.”
Find out more
If you’re an employer that wants to understand how to better support your people going through cancer or chronic disease, Alex has made the generous offer to share her experience and advice directly with you, you can email her at email@example.com.
If you’re an individual and you’re ready to take Alex’s advice and ‘beat the bad news’, the team at Orbital Life would be happy to have a free chat about your situation – contact us here.