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I found out I’m terminally ill. What’s next?

Discussing terminal cancer with children can be difficult. This video can help.

Have you recently discovered you are terminally ill? Undoubtedly, on top of feeling unwell, there are a lot of emotions overcoming you and many thoughts on your mind. Some of the common concerns the terminally ill have expressed to me are things like: How do I tell my family? How will my partner or family cope? What will happen to me? Will I be supported? How can I maintain my dignity?

All of these questions are totally natural when you are terminally ill.

To make things easier for you we’ve put together a step-by-step guide and a script for starting the conversation with those who need to know.

Step 1 Coming to grips with being terminally ill

It’s a time full of shock, fear maybe even regret. So, take your time to sit with the news and your emotions.
Health Direct has a thoughtful resource on how to cope with the news that you have a life limiting illness.
Reading through it can help you understand what you will go through including anticipatory grief.

The NSW government resource ‘Planning for end of life’ and ‘If you have a life limiting illness’ are tools to help you understand what you will need to think about and what steps lay ahead.

Step 2 Telling my family I have a terminal illness

How do I tell my family I’m dying? Palliative Care Australia have developed some tools for discussion starters. Working through the tools can help you to gather your thoughts. There’s no right way to tell friends and family and there’s no right time. But there are some things you can do to make it simpler.

The best-case scenario would be to choose who you want to tell first. This may not be who you might think would be first. Rather than gathering your family together you may choose one or two trusted members and let them know first. Choose a place that is quiet and provides enough peace and quiet for them to feel free to have their own reactions. Also choose a place that will also allow you to remove yourself, if needed from the pain of their reactions. For example, if you tell them at home you could retreat to your bedroom. Try and be factual and give as much or as little information as you are willing to give.

Here’s a suggested script to tell your family you are terminally ill:

Thank you for coming. I have something to tell you so please take a seat. I’m going to share some information with you and it is important to me to share this when I want and with whom I wish. But I wanted to let you know first. As you know I haven’t been feeling well. I went to the doctor/specialist on (insert day) and they told me I have (insert life limiting illness name). The treatment options are (insert the options).
I understand this is a shock.

Step 3 How do I get support now I have a terminal illness?

Lean in. While it is certainly a unique experience, you needn’t feel unsupported. And while it may be difficult to ask for help you deserve it. So, use it. Everybody’s illness, circumstances and support systems are different so it’s a matter of learning the options and taking it from there. Palliative Care Australia is the peak body for palliative care and has state by state help too.

Advanced care planning is another invaluable resource for getting your thoughts and things in order.

Now is the time to lean on your family, your friends, your medical and allied health professionals and the organisations that exist to support you.

The Australian Cancer Council has a list of some practical and financial end of life assistance.

Step 4 How do I maintain control and my dignity?

Probably the first thing you need to do is discuss your illness further with your GP.
If you find it helpful make a list of questions beforehand. Even though you are feeling unwell, it’s important to feel in control or be supported by someone who can help you along the way – and advocate for you. With some time and help under your belt, if you haven’t yet taken steps to do some advance planning, now is certainly the time.
Advance Care Planning Australia have the information and tools ready for you to make the task easy.
By taking control and letting your family know your wishes you will feel more at ease.

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