Firstly, tell us about your attitude to your brain cancer diagnosis.
My attitude at the time of diagnosis and continues to be that, ok this has happened, there is nothing I have done to cause it, or go back in time and reverse whatever process made the tumour start growing in the first place. So, having a brain tumour is out of my control, including how and where it grows, but what I can control is making sure that I keep myself as positive as I can and to have the best quality and quantity of life as possible.
So, what does ‘Supportive Care’ mean to you and how does ‘Palliative Care’ fit in?
For me, supportive care is all about the things that are in my control that impact on my quality and length of life. This includes everything from exercising, to having a healthy diet, to continuing to see and speak to friends and family, as well as more of the simple things in life like just going out to a café and enjoying a coffee.
As confronting as it was at the time, I knew that early engagement with my local palliative care team would not only benefit my quality and length of life but also help my partner look after me at different points in time in my disease expedition.
At what point in your brain tumour expedition did you engage with your Palliative care team?
About two years after my diagnosis, I was about to head to a neuro oncology appointment at my cancer treatment centre when I had a very bad seizure which saw me being in hospital for a few days. Until then, I didn’t realise how unwell I was or could get and so I agreed with my carer that in addition to my specialist team at the hospital that we needed some extra community support from the palliative care team at our local hospital.
How did you go about getting palliative care? Is it expensive or is it covered under Medicare?
The care coordinator in my treatment team helped make the referral to the palliative care service that was closest to where we live as this would make it so much easier logistically when they need to do home visits at any point during my treatment.
There is no cost to me or my carer in receiving this palliative care service and to my understanding it is covered by Medicare. To my understanding the palliative care service can also provide free access to supplies that I might need as my disease does progress.
What were some of the unexpected and positive aspects of the first palliative care home visit?
Here are 5 of some of the great things about that home visit from the palliative care team.
- The palliative care team worked directly with my GP to get a prescription for a set of emergency medicine that they or my partner can use at home if I have another seizure or emergency that doesn’t require an immediate hospital visit. That medicine pack now goes with us anytime we go out.
- The palliative care team allocated me a client number so that anytime my partner or I ring their 24/7 number they can easily bring up my file.
- The palliative care nurse that visited us did a walk around our house to see what improvement could be made to consider my disease progression. They also talked about the equipment and home supplies for caring for me that they can supply to us as my disease progresses over time.
- They talked through with us that even things like the height of my bed can make a real important difference now and later as my body potentially becomes less strong or mobile due to the symptom trajectory of my brain cancer.
- As part of my treatment, I am on steroids which I know can have side effects, but no one had told me that you can get oral thrush from regular use. The palliative care nurse spotted straight away that this is what had happened to me and gave me and my partner the name of a medicine that will easily fix it and an easy way of preventing it in the future. Even that simple advice showed me how holistic the care from my palliative team can be.
The palliative care team are continuing to follow up with both me and my partner to see how we are going and what support they can provide.
Has your attitude to palliative care changed over time?
My attitude to palliative care has shifted from “I will only need this towards end of life” to “this is something that is going to benefit me now and my carer now, and in the future”.
I think a lot of people share your original assumption that palliative care is only for the last few days/weeks of life, or think if a doctor recommends it then they have ‘given up’. Do you have any tips or advice for other patients or carers who might be hesitant to try palliative care earlier on in their brain cancer expedition?
The first thing is to make a huge mindset jump that this is not about giving up, it is about taking a proactive step in knowing that there are people available in your local community that are there to help you either as a patient or carer. It is also clear from all the research done to date that early engagement with a palliative care team can extend survival time and improve quality of life so by no means is getting palliative care involved early about giving up.
None of having a brain tumour or brain cancer diagnosis is easy but having icky conversations is part of what we need to face into. Also have an open mind and heart about what to expect when you get your palliative care team involved. I was expecting some heavy conversations around how I would be cared for in the last days of life, but it was totally not like that. I know those conversations will come, but not right now, and early engagement with my local palliative care team means that I can focus on quantity and quality of life right now.
Image supplied by S.Bray from the BT Online team to illustrate MJ’s story.