Lived experience Video, 3 min
Caley’s story
Caley, 41, Sunshine Coast, Queensland
Caley talks about being told her cancer is terminal, finding a community of people living with MBC, and how the MBC Hub helps her and her family.
Before you watch: Caley talks about her cancer being terminal and about living with anticipatory grief.
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“You start to gather a new community where you're in this together.”
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Transcript
When you're given diagnosis like mine time is so precious
My name's Caley, I’m 41 years old and I live on the Sunshine Coast, Queensland, Australia. I'm a wife and a mum to two teenage, well, pre-teen boys, and I like to paint in my spare time.
So a year and a half ago, I was diagnosed with breast cancer. And then when we received the diagnosis that it was in fact terminal, it was, we were thrown into a world of fear, a world of questions.
At that appointment we were given some information, it was just generic things that weren't tailored to my own experience. And I can imagine there's so many more people out there around Australia and the world that would have felt similarly to what we went through. I felt extremely alone.
But I found MBC Action Australia online and that's where I started to build that community with them, was like minded people that are living with cancer the same as I am. You start to gather a new community where you're in this together. You might have different diagnoses, different types of cancer, different subgroups, different treatment plans different timeframes, but you're all on that same road together. And it's very comforting.
The MBC Hub didn't exist 18 months ago when I was diagnosed, and I really wish it had, because when we were going into appointments with our oncology team, we didn't know what to ask, what to expect. So with the MBC Hub, it is resources on what to expect, on terminology, there's links through to credible information, what to ask your oncologist. It makes you think a little bit outside of your box and go, ‘oh, okay, I didn't ask that question, that's a really good thing I need to know about.’ And it's guided step by step.
I mostly use my iPhone and it is an easy format to use. You can quickly scroll. It's up and down. And it is so simplified that when you are in a crisis where you're fighting for your life, it's so easy to navigate. When you’re brain fried from chemotherapy and treatment and living with anticipatory grief, it's so important to be user friendly.
It's been so helpful to my family because they're not medical people. They're not living this day to day. They're interstate, and it's helped them understand terminology that is now my everyday use. This is one way that can help give you back your time. By others reading it and having their own research and reading it, something that is there for them as well. It's really a gift for you to give to them, so.
Where to next
If this story brought up difficult feelings, you can talk to someone. Call the Cancer Council on 13 11 20 or the BCNA Helpline on 1800 500 258 during business hours, or Lifeline on 13 11 14 at any time, day or night.