Making the most of life with a terminal illness often depends a lot on having the symptoms under control. Palliative care is really important to relieve symptoms and treat any physical problems. Then you can get on with what you want or need to do.

What is palliative care?

Palliative care is aimed at improving the quality of life for you and the rest of your family by looking at your physical, practical, emotional and spiritual needs. It’s not about ending life early (this is euthanasia and is illegal in Australia) and it’s not about prolonging life at all costs.

You can usually receive palliative care:

• at home

• in hospital (there might be a specialist palliative care unit)

• in a hospice (a place that specialises in caring for terminally ill patients).

Sometimes people move between places depending on the type of care they need.

What’s involved?

Starting palliative care doesn’t necessarily mean you are going to die soon. It does mean that your cancer can’t be cured and so you are likely to die from it at some stage. Your treatment will now focus on managing pain, nausea and other side effects of your cancer and helping you cope with anxiety or depression. Palliative care is also about helping you to find meaningful ways to spend the time you have left, to find ways to connect with what is important and enable you to have a say in what that looks like.

It’s best to meet the palliative care team early so your symptoms and all your needs can be managed and you and your family can get to know the staff – it is amazing how much knowing and feeling comfortable with the team can help everyone.

Being referred to palliative care will most likely be a really tough time for you and your family. It will mean you have to think about and deal with a whole lot of stuff that is scary and at times just too hard to contemplate.

The aim of palliative care is to assist you to have the best quality of life for as long as possible. Don’t be afraid to ask questions and demand the best care and support available.

Your parents are learning to cope with your cancer diagnosis and treatment just like you are.

You might feel like your parents are treating you like a little kid again. It can be hard to deal with them being so involved in your life again, especially if you have to rely on them for practical things like cooking or help getting dressed or having a shower.

The best way to understand what they’re going through, and let them know how you feel and what you need (and when you just want to be alone!), is to talk to them.

What your parents are going through

It helps to remember that your parents are dealing with a whole heap of stuff too, including:

• Coping with their own emotional reactions to the fact you have cancer – like shock, fear, disbelief, guilt, sadness, anger.

• Worrying about you and the rest of the family.

• Feeling helpless because they can’t fix this for you or make it go away.

• Worried about the medical bills and whether they will be able to get time off work to look after you (and your siblings).

• Trying to protect you from bad news and harsh realities.

• Trying to hide their feelings and put on a brave face for you.

• Trying to keep it all together – which might make them tired, stressed and short-tempered.

Talking tips

• Think about what you want to say, and any questions you want to ask them, before you start.

• It may be really hard to start with and there may be lots of silent moments. That’s okay.

• It’s okay if you or your parent gets upset. Keep going, or try again later.

• Talking can be easier if you are doing something else at the same time – driving in the car, cooking in the kitchen.

• Try not to worry about it too much – this whole thing is strange and scary and it may take time to work out the best way to talk to each other.

• Ask a trusted family friend or close family member (brother or sister, or your favourite aunt) to join in on your conversation.

Making your own decisions

Parents are used to being able to protect their kids and fix things for them. A cancer diagnosis can make them feel helpless as they can’t fix it or make it go away.

While you can play a large part in making your own medical decisions, parents sometimes feel like they have more experience in making big decisions or that they know what’s best for you. They might want to step in on your behalf (or health professionals might expect them to make the decisions) and this can cause some friction.

Tell them if you’d prefer to go to appointments by yourself or manage your medications on your own.

Need help?

Your YCS team is there to support your parents and family as well as you. Tell someone in your team if you think your parent is not coping, or if there’s family issues you need help with. Many families find that it helps to talk to someone outside the family to get support and information. Your YCS team can recommend a counsellor for confidential, non-judgemental advice.
 

Depending on what type of treatment you need to have, how much and how often, you may have to spend a lot of time at a hospital.

Spending long periods in hospital can be really boring! So here are some tips to make your hospital stay a little easier:

• Ask friends to visit (and bring snacks).
• Bring your trackies or favourite PJs and your pillow, photos or other stuff from home to make the hospital room more comfy.
• Beg, borrow or steal as much media as you can – bring your phone, iPad, books and magazines.
• Start a journal.
• Make a visitor book or poster for visitors to sign and leave messages on.
• Turn off your phone if you’re not feeling well or don’t feel like visitors, or when you’re ready to sleep.
• Get to know the night nurses well (and offer them lollies if you have some). They’ll save you from insanity when you can’t sleep.
• Get outside if you’re well enough. Fresh air and sunshine always helps.
• If you don’t have the energy to read but would love a good story to distract you, try an audio book. Entertainment with your eyes closed – bonus!
• And remember the Youth Cancer Service team includes lots of people who can advise and help you cope with your time in hospital. Ask your cancer care coordinator or cancer nurse about the activities, groups, services and entertainment on offer.