Adapting to the news of a brain tumour diagnosis can be hard, what was your experience like?
Being diagnosed with brain cancer, or probably any type of brain tumour, forces you to instantly adapt. There is no choice in that. What you have control over is your own mental adaptation and adjustment. That is the rough part. Emotionally and mentally adapting to this change is what takes time and resilience. Initially all I wanted to do was to get through my initial rounds of treatment, which I did, and then return to my old normal life. What I took me some time to adjust to (and I am still adjusting) is that the old life won’t come back and that I must learn to live with this ‘new normal’. Hoping that things would return to normal was not mentally healthy and I have had to learn to find gratitude and happiness in what I have today. For example, I know that other patients with high grade brain tumours can be impacted by loss of speech, mobility and memory and I am grateful that at this point in my brain cancer expedition that those things are not yet impacting me.
Showing resilience to other areas of life has become more pronounced since my diagnosis as well – in my motivation, mental health and physical health, juggling my work and personal and social life. It has also introduced new challenges such as dealing with secondary physical health issues, administering and coordinating support to live my life, and finding adaptive ways to participate in conventional activities – from getting up in the morning to working, catching public transport, exercising, finding leisure activities and driving.
All of these things have been flipped around but, the good news is, with the right support, attitude and perseverance – all of these things are possible. Two years on from the initial shock and uncertainty of my diagnosis I find myself writing this. An incredible amount has changed. I’m still the same person, but I express myself and live a bit differently. I’m thankful, proud and happy for everything I’ve learnt as a result of having lived experience a brain tumour.
What role do you think platforms like BT Online have in adapting to a brain tumour diagnosis?
It is time, perspective, resilience, a shifting mental attitude and immediate informal support circles that got me through the hardest and darkest times. However, I cannot understate the support that I’ve received from others in the brain tumour community.
What I’ve learned from other people with brain tumours that I’ve met online has helped piece my life back together and to shape my identity again after my diagnosis.
Has religion or spirituality played any role in adapting to your brain tumour expedition?
I have never had a particular faith or religion that I have followed. But since my diagnosis I have become more engaged in spirituality. One of my life goals has been to visit Tibet to see the Potala Palace as there has always been something about that place that has struck a chord with me. However, with the global pandemic, I don’t think getting there is going to be possible anytime soon. Nevertheless, since my brain cancer diagnosis I have been reading and learning a bit more about Buddhism including how some of those principles apply to both living and dying. On a practical level, this has made me understand a bit more about the practice of meditation which has helped me when my mind is full of negative thoughts about my brain cancer diagnosis.
It sounds like you have done well in mentally adapting to your diagnosis and your new normal, are some days better than others?
Definitely, it would be a lie to say that I am doing mentally ok about my cancer diagnosis every day of the week. But now that some time has passed from the initial shock of my diagnosis, the bad or sad days come less often. On those days, one strategy I try to do is set myself a little internal alarm clock to say, ok today is a ‘doona’ day because I am either feeling just unwell or my mood is down, so on those days I try to set myself a time of the day to get up and do something, whether it is get up and hang out in another part of our house or get up and do some light exercise, some days this is easier said than done but it is one of the strategies I have used to get myself through.
Being diagnosed with a brain tumour will bring with it lots of new and different emotions, what about things that have happened in the past?
One thing I have found to be particularly true for me has been emotional healing and what I mean by that is learning to find a way of becoming at peace with or letting go things that may have happened in the past that made me hurt or angry. While we all know the term ‘let it go’ it is easier said than done and I am not perfect at it yet but being mostly at peace with those things has helped me focusing on my health and quality of life. It is also amazing how much less I worry about the ‘small stuff’.
For many carers and families who have lost a loved one to a brain tumour there will be immense grief. Do you think brain tumour patients also experience grief?
Absolutely yes, and I think this is something that is not talked about enough. For me, that grief includes all sorts of things such as having to pack away mentally or physically so many of the things I have wanted to achieve across the many different parts of my life, as well a sense of grief for the physical capability that I had before my diagnosis, as well as having to deal with the grief of the eventual disease progression when you have a high-grade glioma. This kind of grief also includes seeing how difficult it can be to see your family and friends struggle with how much you have changed and continue to change through the progression of this disease.
Did you seek out mental health support when you were first diagnosed?
Yes, I went to my GP to get a mental health plan which allowed me to get psychological support. I tried a couple of different mental health support providers but a bit like Goldilocks and the three bears, I didn’t find one that was the right fit for me, but when the time is right for me, I will try again as there is so much change to adjust to.
Finally, what advice would you like to give to other people who are diagnosed with a brain tumour?
The most important thing is that going through that mental adjustment period takes time. Lots of different parts of your life will be flipped around but, the good news is, with the right support, attitude and perseverance, establishing a new normal is possible.
I would also encourage newly diagnosed patients with brain tumours or their carers and family to reach out for mental health support if they need it as this is a tough expedition for everyone.