So many thoughts run through your mind when you hear the words palliative care, especially when it is for your younger sister. You know it’s about keeping someone comfortable. You know it’s about how to spend the last few hours, days, weeks, or months with them. It is definitely a challenging time, especially when you are a teenager yourself and coming to terms with losing your little sister. You feel a range of different emotions – sadness, anger, helplessness, worry, lost. She won’t be able to finish school, get a job, get married or have kids. These are all things that I have achieved in my life so far, eight years after Dainere took her final breath…

But let’s take a step back in time…. Finding out the news that Dainere had a brain tumour was absolutely terrifying.

I don’t think I processed what was happening, I was in shock and could not believe it. Then comes the big C word…cancer. Treatment meant Dainere had to spend a lot of time in Sydney, away from home with my Mum. It was tough being away from them for so long. As a sibling you try your best to put on a brave face, but inside you feel scared. Why is this happening to you? How could this happen? What is going to happen to you? Will you survive?

Your head gets filled with an abundance of questions, all of which you are too afraid to ask the doctor, the nurse, even your parents. I’m not the kind of person to ask questions as I never want to sound silly. So, keeping quiet and listening is what I would do. Maybe if I don’t ask the questions people will think I’m fine and I know things. However, this is definitely not true at all. How could I know about what is happening to my little sister? Maybe I should have worked up the courage to ask the questions as I wanted to know the answers.  A short amount of time passes by.

We were living the ‘new normal’ – stable, then…palliative care.

Dainere had a relapse, the cancer spread, and she would be receiving palliative care. You don’t want to hear these words; I was losing my sister. My heart broke into a million pieces, my little sister was not going to survive. The rollercoaster of emotions come back. It’s just not fair. Why is this happening? How much time is left with my little sister? So many questions appear once again. Things were different for me now as I had finished school and was studying my Diploma in Remedial Massage. I was surrounded by so many new people who had no idea what my family and I were going through. I wished I could connect with other people who were going through similar situations.

You really feel helpless as there is nothing you can do, the disease is taking over and consuming her.

You want to help make things better. As I was studying, I could give Dainere massages to help reduce her pain. She was really appreciative. I helped by making her movements throughout the day a bit easier with reduced muscle tension and increased mobility. I only wish I could help her more, make all the pain and suffering go away, make her better again. Nothing prepared me for what came next…

The end…. This was very tough for me, when Dainere passed away.

I was only 19 at the time; an adult but still a teenager and was by her side as she took her last breath.

No words can describe the feeling as you see a loved one pass away. I struggled, and ultimately fell into depression. That time in my life was the hardest, I found talking about it all was difficult and I’d avoid it. We had a bereavement counsellor. At first, I was unsure of opening up to them, but after some time, it really helped me. It is much better to talk than keep things bottled up. I was not alone, it’s ok to not be ok, support is always there.

Eight years on. Throughout the years I have completed my studies, got a job, am happily married and now I’m a mother to my beautiful daughter -my little butterfly. I still get emotional that Dainere’s life was cut short and that she didn’t get to experience all I have. But not a day goes by when I don’t think of her, she will always be a part of me and my life.

One final note…when your sibling is receiving palliative care, making the most of the time they have left is important.

Do something together, create special memories to cherish forever. Remember all the happy times you shared.

Dainere, you will never be forgotten, you are with me always, I love you and I miss you. Your big sis. xo