The decision to stop working ended up being much easier to make than I thought it would be.
I had devoted the past 20 years of my life to my work and career. It had always been my priority so I was unsure what effect it would have on me if I stopped working.
When I was first diagnosed in 2015, I was determined to keep working because I wanted to keep life as normal as possible. The plan was that this would just be a little blip in my life, something to deal with, and then it would be over and life would continue as it had been. I also had bills to pay and only me to support myself so I still needed an income!
I was very lucky to be able to continue working during my initial treatment for a number of reasons.
- I had built up about six weeks of sick leave and six weeks of annual leave so I knew I had leave I could take for treatments, surgery and when I felt unwell.
- I had a supportive and flexible workplace that was happy to support me continuing work. I had given them three years of hard work, putting in the extra hours and going the extra mile. I had built up a bank of goodwill with my employer, which I could now draw upon.
- I was able to work from home on some days when I was well enough to work, but did not feel like leaving the house and going into the office. Technology is a great thing.
- My CEO gave up her carpark at the office so I could use it instead of travelling to work on a crowded train filled with germs that could compromise my low immune system.
- I had a great team of employees who I had confidence in and trusted to take up more responsibility when I was not able to be in the office.
- The chemotherapy and radiotherapy did not make me very sick. There was the occasional day of feeling a little bit like I had the flu, but it never made me nauseous or throw up. I didn’t get ‘chemo brain’ and become forgetful or confused. I could have chemo on a Thursday or a Friday, recover over the weekend, and be feeling pretty normal for work by Monday.
I wouldn’t say that this time was the most productive period of work in my career. Sometimes I did feel like I was just treading water trying to keep on top of things. It wasn’t a time where I felt like I wanted to be innovative and start on new and exciting projects. A lot of the time, my priority was just maintaining the work and projects we already had in place, rather than looking at new things to do.
Going through treatment was distracting to work. Sometimes it was hard to concentrate on work when you were thinking about some new chemotherapy side effect that had just started and ‘is this normal?’ There were probably times when I spent a little too much time googling breast cancer information in my office.
But work was also distracting from the treatment. It meant I wasn’t sitting at home all day just thinking about when my next appointment was, what this particular twinge means, what’s my prognosis, what am I doing with my life? Having a routine helped me to try to keep life as normal as possible. It also meant I had other things to talk about with people other than my treatment.
When I found out in October 2016 that my cancer had spread to my lungs and was now incurable, I went from my appointment to the office and had to tell people the results. Everyone knew I was waiting to find out. I texted a few people from the hospital that it wasn’t good news, but I went to work anyway. What was I going to do at home?
I thought I would just continue working as I had been. I felt no different so I may as well just keep doing what I had been doing. I also didn’t want to make any hasty decisions that I might regret later. So I thought it best to just continue with the status quo. I had a couple of holidays planned in October and November – holidays I had planned as a post-treatment treat! My medical oncologist was supportive of me taking the holidays and said she would just be flexible around my treatment schedule so I could take my holidays. She also offered to write me off for sick leave for an indefinite period, but I told her I wanted to keep working.
I went to Hong Kong and visited my brother for a week in October and then when I returned I started back on chemotherapy – Eribulin. I had one round of it and then had a two-week break before round two and went to Western Australia for a holiday with friends, taking in Wave Rock, Esperance, Cape Le Grand National Park, Bremer Bay, Albany, Denmark, Augusta and Margaret River for the Gourmet Escape Food and Wine Festival.
By that time, I had started thinking that it might be time to consider moving back to Brisbane and seeing if I could find work there. I had been having a great time in Sydney, loved my medical team, was well supported at work and had made good friends. However, most of my close friends and family were in Brisbane or the Sunshine Coast. While I felt well, I knew that this may not last and it would be good to have the people I loved and trusted close by to look after me. Also, if my days were now numbered, now was the time to spend more time with friends and family.
When I returned from the Western Australia trip, I saw my medical oncologist and told her that I was considering moving back to Brisbane if I could find work there, but at the same time I liked the medical team I had around me in Sydney. She looked at me sympathetically and told me she could find good doctors for me in Brisbane.
‘I want to be realistic with you, Marnie, and this might not be easy to hear,’ she said. ‘This type of cancer you have can send you downhill very quickly, in just a matter of weeks. What you need to ask yourself is if you were very sick, where would you want to be? Here in Sydney or in Brisbane with your family and friends?’
‘I would want to be in Brisbane with my family and friends,’ I replied.
‘Then I think you know what you should do,’ my doctor said. ‘I’m not trying to get rid of you as a patient, but you need to have people around you supporting you. I will do everything you need to make this happen.’
I went off to my chemo appointment for the start of round two of my Eribulin treatment and then I went into the office for my first day back at work after my Western Australian holiday.
As I sat in my office and thought about my recent holiday, my conversation with my doctor, and looked at the same work that had been there two weeks ago before I went on leave, I began to think, ‘What am I doing here at work? If my time is limited, is this how I want to spend my time? I want to travel, I want to spend more time with family and friends. I want to be on the beach walking my dogs right now, not sitting in this office. I have worked hard. For many years. I might be fine for a long time and I might not. Do I want to regret continuing to work when I could have been doing other things that make me happier?’
From there, it was pretty easy to make the decision to leave and move back to Brisbane. There were a few things I needed to put in place first. I decided to access my superannuation and death benefit, which I was entitled to do because I had been diagnosed with a terminal illness. My superannuation company made this very easy and straightforward, but there was paperwork that needed to be signed by doctors, which took a little while to organise. I met with a financial planner to make sure what I was planning to do was achievable. I started the process of cleaning up, making repairs and packing my rental property in Sydney and giving notice to leave. I gave notice to my tenants in my house in Brisbane so I could move back in there when I returned to Brisbane. I began the process of transferring my care to a new medical oncologist in Brisbane and setting up appointments there.
Everything took time. I finished work on 13 January, took a week’s holiday in Eden on the far South Coast of New South Wales where I walked on the beach with the dogs every day and then returned to Sydney to get the move back to Brisbane all organised. By early February, I was on the Sunshine Coast staying with my Dad while I waited for my tenants to vacate my property in Brisbane. I was walking the dogs on the beach every day, swimming and spending time with friends and family. I had no regrets about my decision and I’ve had no regrets since.
Occasionally, I will see a job on Seek and think to myself, ‘I’d really love to do that. I think I’d be perfect for the role so maybe I should apply.’ Then reality sets in and I think, ‘Do you really have the energy to start a new job where it will be full-on as you have to learn all about a new organisation and role?’ Would a new workplace be ok with you saying, ‘So I have chemo on Tuesdays so can we work around that?’ Shouldn’t you be concentrating on your health and getting better?
When I decided to give up work earlier this year, I called it taking an ‘adult gap year’. I thought maybe I would just give myself a year to do all the things I want to do and find a treatment that controls the breast cancer so I can consider going back to work in the future. When I have to fill in forms about my employment status, I don’t know whether to say I’m unemployed or retired. There doesn’t seem to be quite the right category for me!
I’ve had a few recent setbacks that make me think working next year will probably be unrealistic. I was not expecting my cancer to spread to my brain so quickly and treating my brain has been a little more challenging, and has also interfered with being able to continue chemotherapy. We haven’t found the magic chemotherapy regime yet that stops my tumours growing.
All of these treatments are taking up more of my time than I thought they would. It is actually hard to find the time to get away to travel and do fun things. There’s always some appointment to get to or working out how long it will take to recover from certain treatments before I can travel. It has become my new full-time job.
I know I am lucky that I have my superannuation and death benefit to live on. I pay myself a nice fortnightly salary and I’ve taken some lovely mini-breaks this year. But it is hard to look at your bank balance only going in one direction. I do miss a good salary being deposited in my bank account. I do think about how long my money is going to last. I don’t want to be so miserly that I regret not spending it when I had the opportunity. I also don’t want to have to run out of money in the future. When I feel a little anxious about this, I just tell myself that everything will work out in the end and if I have to go back to work or sell my house to live on, things will work out the way they are meant to.
A while ago I watched a film called Five, which is an anthology of five stories about women affected by breast cancer. My favourite story in the movie, which also felt like a cautionary tale, was about a woman who was given a stage four diagnosis and deals with it by throwing a funeral for herself and telling everyone attending what she really thinks of them, fritters all of her savings away, and drinks a bottle of expensive champagne every day because each day might be her last. Then, miraculously, the cancer disappears and she survives. But she has no money, she’s damaged all these relationships and she has to start her life over again. That idea makes me very fearful, yet it’s positive!
So while I am trying to be cautious, but not too cautious with my finances, I tell myself that if the worst case scenario is that if I miraculously get better and have no money, then I need to concentrate on the fact that I am alive. Ok, I might not have any superannuation to support me in my old age, but at least I might make it to retirement age! That’s a better outcome than dying, surely?
So spend the money. Eat the desserts. Live. You never know what’s around the corner.