In honour of Blood Cancer Awareness Month this September, Teen Breathe caught up with 18-year-old Ainsley Scott-Lee, who is now in remission after being diagnosed with blood cancer when she was 13. She shares with us her past experiences, present thoughts, and future dreams.
Thank you for sharing your story of strength and resilience with us here at Teen Breathe, Ainsley. Can you tell us a bit about what you went through?
I was diagnosed with rare form of childhood blood cancer, Non-Hodgkin lymphoma, at 13 years old. Numerous cycles of high dose intense chemotherapy were prescribed as the only option to save my life. I couldn’t attend school and I lost all my hair everywhere, eyebrows and all. I was administered a concoction of drugs including steroids that made my body bloat significantly. I could not fit my clothes. It was a drastic change that my body had to cope with both internally and externally.
During this time, my mind had to make sense of everything, and my moods were affected by the medications and the many side effects that came with treatment. It felt like my world was turned upside down.
What are the best forms of support you received while going through treatment?
My parents and I received enormous practical help from our grandparents, uncles, and aunties. Our friends, school and church community were also wonderful in providing emotional support. My principal was amazing and assuring of the academic support I would receive when I returned to school.
People generously dropped off meals, donated money, and gave me gorgeous gifts to cheer me up and also helped with transportation and daily prayers. My close friends visited me regularly and spent time with me even though I was often too affected by medication to welcome them properly. It warmed my heart to the core to know I was so cared for during treatment.
How did your experience change your perspective on life?
There’s an expectation that when you come through so much adversity that you must want to live life to the fullest, have a positive outlook and be completely fearless. Well, I have bad days still and I feel scared. It’s an unrealistic societal expectation of someone who survived a trauma like cancer to be a superhero. The physical scars remain, the long-term side effects persist, and your body and mind are no longer the same.
I am however proud that I endured and overcame so much. It was a big team effort though and the medical experts, my loving parents, and my friends made me feel loved and supported and for that I am very grateful.
I am now learning to be more present and live one day at a time so to speak. I am learning to not sweat the small stuff, to let go more, and to enjoy simple. Life is not a race but a journey to live many meaningful and enriching days.
You recently participated in the World’s Greatest Shave – how did it make you feel and what does the Leukaemia Foundation mean to you?
I had mixed feelings at first about losing my hair again, but it was totally empowering doing it on my terms.
My participation arose from my hope to engage fellow students and raise awareness of blood cancer in young people. Little did I realise that in the process I would inspire others to and participate alongside me. I am so thankful for the opportunity that as a school community, we could stand in solidarity with the thousands of others affected by blood cancer and help contribute to the life-changing work of the Leukaemia Foundation.
I was very touched by so many people’s donations, there are many kind and generous people out there. The Leukaemia Foundation has been so helpful in giving my mum emotional support and they were only a phone call away. They also do an amazing job supporting regional patients with practical help such as accommodation close to hospital while they go through treatment. The team at the Leukaemia Foundation are very special people and the organisation is passionate about their goal of ‘zero lives lost to blood cancer by 2035’. What a great motto!
How do you show yourself self-love and self-care?
My old life is over and now there’s a new life to navigate. I try to not be too harsh on myself, to take time out, to have me-time and not to worry about small, insignificant stuff. I also try to eat well. I often sing and dance to my favourite music – I find music nourishing and healing.
What can we do better to take care of one another?
We can learn to listen more, and not to assume we know what’s better for others. We all have 24 hours in a day – we should all try to be less hurried, and more willing to help others.
Do you have any words of wisdom for other teens going through serious illnesses?
Just take one day at a time. Surround yourself with people who have made positive impact in your lives. It will make your hospital stays much more bearable knowing you have someone, even if it’s just one person who’s with you at every step. No matter what, one day at a time.
What are your dreams and goals for the future?
I want to be an actor and make people smile doing what I love. I hope to inspire others to hold on to their dreams. Even though it can be tough and the road ahead is sometimes rough, don’t lose sight of your dreams.
What are three things that make you smile?
Bubble tea, capybaras, and my parents and friends! Sorry that’s four things!
September is Blood Cancer Month. If you or someone you love is diagnosed with a blood cancer, please contact the Leukaemia Foundation’s dedicated blood cancer support line on 1800 620 420 or visit leukaemia.org.au.
Join the thousands of Australians impacted by blood cancer by participating in this year’s Light the Night event on Friday 30 September. For more information and to register visit lightthenight.org.au.
