In addition to getting your palliative care team involved in your care, what are some of the other things that you have done since your diagnosis?
Probably one of the most important but emotionally challenging aspects for me was completing all the legal and financial paperwork that you need to think about when you are diagnosed with brain cancer.
Pretty soon after my diagnosis, one of the hardest emotionally but most important and right things for me and my partner to do was to head to a law firm to complete our “life documentation”.
This documentation included:
- A standard Will
- Enduring Power of Attorney
- Appointment of Medical Treatment Decision Maker
- Advance Care Directive
- Statement of Wishes
The Advance Care Directive was much less challenging to complete than I thought. For the version I completed, it was a set of values statements about the types of decisions that are important to me at the end of life. This document needed to be countersigned by my GP which I have just done very recently. This was a natural and healthy conversation to have and was not confronting at all.
The actual process of completing all the “life documentation” paperwork was relatively straight forward. Something important to know is that some of these documents apply while you are still alive such as deciding who you want your medical decision maker to be, and others like your will obviously apply more after you die, but this is something that your lawyer will tell you about. Something you also need to think about is who your second power of attorney and medical decision-maker might be in case your first appointed person has themselves died.
What advice would you give to other patients or carers?
Firstly, these are not nice conversations to have, they are so important to have.
The process of completing this life documentation can be emotionally difficult, I still remember the tears running down my face as I signed my copies of this paperwork as it was another reminder of the diagnosis I was so recently adjusting to mentally, and I could not have done with it without my partner beside me. So, in this task, carers and loved ones become such a big support to patients.
My other advice is to make sure your superannuation paperwork correctly nominates your beneficiary. Sometimes in life circumstances change and you need to decide who your primary beneficiary is and what proportion of your superannuation they would receive. You also need to make sure that the timeframe of your nominated beneficiary is right, in some cases the form says it is a permanent nomination and other time it lapses after a few years meaning that the money could possibly be paid out to someone else after that time. You need to make sure that you tick the right box for you and again this is something that your lawyer can advise you on. In fact, both my partner and I needed to redo our nominated beneficiary forms to get this part of it right.
Images used to illustrate this story are free stock images, not supplied by the story author.