Living with her sister in Sydney’s fashionable Newtown, Leila is an artist and works for a stationary company. She’s very creative, loves to draw, cook and of course, like many 28 year olds, shop. Seeing live music, travelling and playing with her puppy are also high on her list of favourite past-times.
But unlike most 28 year olds Leila lives with cancer. She has a neuroendocrine tumour that has metastasized and spread to her lungs, liver and bones. Since being diagnosed in September 2015 she’s had two rounds of intravenous chemotherapy, radiation treatment and is now taking oral chemotherapy.
“Being diagnosed with cancer has had a great effect on my life – physically and emotionally. My cancer appeared with Cushings Disease and my body changed quickly with my energy and physical strength disappearing within months of being diagnosed.”
Not being as physically strong as she used to be Leila has had to step down to a part-time role at work, meaning her cancer has impacted on her financial wellbeing too. “I’m very lucky that I have a work place and colleagues that support me,” she says, “working part-time means I can rest during chemotherapy treatment.”
Leila pauses before saying, “Emotionally, it’s been hard dealing with the very real possibility that I won’t live for more than another year even with treatment. I will never experience having children, a family, growing old with my friends.”
“I would be lying if I said the physical transformation my body has undertaken hasn’t been my biggest challenge. I take great pride in my appearance so the changes Cushings caused such as weight gain, skin problems, stretch marks, swelling and muscle wastage, combined with the effects of chemotherapy like losing my hair and physical illness, have been very difficult. I often look in the mirror and do not recognise the person staring back at me.”
But Leila’s also not like other 28 year olds for another reason. Even living with her cancer and the knowledge that brings, she’s still able to see a positive side.
“It’s made me put life in perspective, I no longer sweat the small stuff. I make the effort to see my friends more often, I don’t take things for granted and actively try new things. I simply cannot let it take over every part of my life. And I’ve worked very hard to be comfortable with who I am now. I buy fun coloured wigs and new clothes to make myself feel good again.”
Leila’s relationship with Julie Hetherington, Head Clinical Nurse Consultant at the Endocrine Unit at RPA, transcends that of a normal patient/professional relationship.
“From the very start of my journey Julie has been like a mother to me, explaining things in ways I can understand and visiting me when I came into hospital even though it was outside of her care. She’s made herself available to me outside of clinic hours by phone and email and her advice and support have been second to none.”
Julie’s care has also helped Leila’s mother to deal with Leila’s situation. “She is a calming voice of reason and without her care I would not be able to juggle all that is thrown at me,” Leila said.
Julie has been Leila’s Champion on her tough journey through cancer. Not the sort of person who actively seeks support, the knowledge she has Julie as well as having access to the Chris O’Brien Lifehouse patient services, including Psychologists and Day Nurses has been a great support to Leila. “Knowing that I can reach out to services that can help me both mentally and physically has been a great relief.”
With the overwhelming amount of information that cancer patients have to process, Leila’s advice to anyone else going through cancer would be to find people they can trust, “Knowing you have someone out there who will look after your best interests will really help you navigate an often confusing and lonely world,” she says.
“The CancerAid app can offer a supportive community where you can ask questions and discover other stories, so it would really help. You can often feel confused and alone when you’re dealing with a chronic illness so relevant communication, for patients and their carers is critical.”
“Knowing you’re not alone and you have people who will help you make the right decisions is so important. It’s true when they say that unless you’ve gone through this yourself, you cannot understand what it means to be diagnosed with cancer. It is life transforming and it’s hard to talk about it to other people. I wouldn’t call myself a hero but if sharing my story helps even just one person, maybe I’d feel just a tiny bit like one,” laughs Leila.