Firstly, please tell us about the kind of work you do.
I have always had a passion for the field of public health, and I have had an interesting work or career to date. I never actually finished my undergraduate degree but then worked hard to get two postgraduate degrees and some good work experience. Somewhat ironically, my second postgraduate degree gave me skills in cancer research. For the last few years, I worked for a government agency where I was project and people managing a large health research project. It had taken me a lot of blood, sweat, and tears to build up both my research and professional skills and it was only in the last few years that I felt like I was in a space where I was in a profession or job that gave me financial stability and a sense of pride, and then along came my brain tumour diagnosis! Having to mentally pack away my career aspirations and literally pack away my professional working clothes and life has been one of the hardest mental adjustments for me following my brain cancer diagnosis.
How did you tell your manager or colleagues about your brain cancer diagnosis?
I was diagnosed with brain cancer while on holiday overseas and I returned home straight away to start my treatment. I knew I needed to tell my manger and some of the other senior managers about my diagnosis so I could extend the leave I had already taken for my holiday, so I sent them an email with the title “The Big C” telling them I found out that I have an aggressive brain cancer and that I needed some extra leave to start my treatment.
What and how did you tell your colleagues about your brain cancer prognosis?
I think there are two things here, one is telling people about your diagnosis, for example, I have brain cancer, and the second thing is about letting people know that brain cancer is a cancer with a poor prognosis. The prognosis part was probably the hardest part of my brain cancer ‘coming out’ in the workplace. When I first told my managers about my diagnosis, I asked that people be positive, and perhaps this gave my colleagues a false sense of optimism that brain cancer is curable and that I would be ok. At the time of my diagnosis, I was healthy and strong and able to go back to work and perform in my job, almost like I didn’t have cancer. But after a while, both my body and mind started saying the complete opposite.
In terms of telling people about my prognosis, the main turning point was when one of the Marvel Comic Universe movie stars died and one of the executive team at my work talked about it at one of the staff morning catch ups, so I thought it would be a safe time for me to open up about my prognosis of having brain cancer. So I started being more open with colleagues in my team as well as posting a philosophical question on my work’s internal internet page about what our professional legacies might be. This is when things at my work changed.
What became evident during this ‘coming out’ process about my brain cancer prognosis is that although there was clear concern for me, the emphasis shifted to how all the colleagues I worked with would take the news that my cancer is not one that is curable. About that time, I also had a bad seizure which made me realise that my health was so much more important than work, so it was at that point I decided to resign from my main professional job. That was a real tough mental adjustment for me.
Perhaps I was a bit naïve in how I told my colleagues about both my diagnosis and prognosis and that I had assumed people would realise that brain cancer is not one of the good cancers to have.
Do you wish you or your employer had done anything differently when you told them about your brain cancer?
Yes. I regret not being more open at an earlier point with my work about my brain cancer prognosis when I first told them I had brain cancer. This would have saved both me and them a lot of heartbreak. I also wish that my work had followed best practice and developed a return-to-work plan for me after I had finished my first round of my treatment. Although my work was very flexible in how I managed my working hours to fit with my treatment schedule, I don’t think they or I had accounted for the fact that I would not be up to doing my job at the same level of performance as before.
Have you experienced any discrimination in your workplace because of your brain cancer diagnosis?
No, I am very lucky that I have not experienced any discrimination, but I know that from being part of other brain tumour online support groups that several brain tumour patients do experience this kind of discrimination.
How has having a brain tumour impacted your ability to work now?
There are three main things for me. First is my change in vision. The loss of vision means that my brain must work so much harder to process things on a computer screen so this can really add to my fatigue and overall energy levels. I have also found that after all the treatment I have had to date as well as the growth of the tumour itself that my brain just does not function as quickly or efficiently as it used to, and my body just can’t manage to do a full day’s work these days. I am lucky that I have been able to maintain a part-time research role that keeps me both mentally stimulated as well enable me to maintain some financial security. I have had to learn to be kind to myself and patient with myself on the days where my body and mind just aren’t up to working. Some days are just doona days!
So in this, I count myself very lucky that I can at the moment still maintain some of my old normal life. I just have to adapt to this new normal.
Do you think your story applies to everyone with a brain tumour or brain cancer?
To put it simply, No.
Because the kind of work I do is mostly computer based and I can do it from home, I can still do many of the things I need to but just not at the same pace or clarity as before. I know of other people with brain tumours that have jobs that require much more physical exertion or being able to drive, these things can become less possible when you have a brain tumour.
What does being able to maintain a job mean for you in terms of household finances?
In our household, we have always tried to maintain a 50/50 split of paying for household expenses so for me giving up my main salary took a period of mental adjustment for how I can financially contribute to our household in this new ‘normal’.
What advice would you give other patients and carers?
At the time of my diagnosis and at the start of my treatment, some of the specialists said that they have patients who go back to work straight after their radiation treatment sessions or after their surgery. At the time, I did what was right for me which was to try and maintain as much of my ‘before cancer’ life as possible but after a while my body told me that I couldn’t sustain that level of busyness and stress. So, my advice is, you need to find the balance for what is right for you and that will probably change over time. Also, if you are diagnosed with a brain tumour and are starting or going through treatment, ask if you can sit down with your work to jointly develop a return-to-work policy.
Images used to illustrate this story are free stock images, not supplied by the story author.