Maddy, by Analia Paino

Maddy, by Analia Paino

It 17 years of age, two weeks after graduation a tiny little lump appeared on my pelvis. Within seven days it had doubled in size. It surfaced onto the skin turning a very yellow and purple colour. My health deteriorated rapidly. I lost bowel and bladder control, kept collapsing, had shortness of breath and was constantly sleeping. It happened so fast and felt like a blur between then and sitting in the Sydney Children’s Hospital being diagnosed with Stage IV Rhabdomyosarcoma.

I was given three months to live...

I was given three months to live with a chance of 3-4% of living any longer than that. My tumour was 8cm in diameter and inoperable. I also had a metastasis on the fibular of my left leg. I started treatment three days later and with no time to process I just felt numb.

I was treated at the John Hunter Children’s Hospital in Newcastle. I was a month out from turning 18 but due to the nature of my cancer I was treated in children’s oncology. Rhabdomyosarcoma Cancer is rare, affecting only around 20 people a year in Australia, mostly young kids or infants. The older you get the lower your chances of survival become. No one knows how or why Rhabdomyosarcoma forms. I was just told my body turned on itself.

For the first three months of treatment I went to sleep every night wondering if I would wake the next day. So I heavily meditated, forgave everything and everyone and I just so badly wanted to live. It must have helped because my three month scan showed my tumour had reduced by nearly 80% from its original size, which is basically unheard of!

...life was hospital, setbacks, fevers, chemotherapy and radiation.

From then on my life was hospital, setbacks, fevers and high risk intensive chemotherapy for 9 more months with little to no breaks. I had radiation at about the six-month mark for six weeks straight. I endured third degree burns in a place that no woman should ever have burns. I practically got addicted to oxycontin and was knocked out for about 18 hours of the day for nearly three months at a time. My kidneys even began to fail at one point.

Whilst on treatment I contemplated suicide dozens of times. The hopelessness and despair took me to a very dark place. What I thought about often was wanting to be in someone else’s body even just for one day; to have the simple luxuries that most people take for granted. I wanted to go for a swim at the beach, be able to have a shower without nearly collapsing, to enjoy and finish a meal and to simply go outside and sit in the sun. These seemingly small things were everything to me.

I pushed through the despair. I felt it would be selfish to cut life short when I fought so hard initially to live for just a little while longer. I knew that one day this negative experience would be outweighed by the positive experiences it would lead to. It would ultimately guide me to a more purposeful life.

I knew that one day this negative experience would be outweighed by the positive experiences it would lead to. It would ultimately guide me to a more purposeful life.

About nine months in I was declared N.E.D (Negative Evidence of Disease) - one of the most joyous days of my life! I finished treatment on the 12th of October 2016, the exact date I was initially diagnosed in 2015. I cannot begin to even explain the feeling of knowing I didn’t have to have chemo again the next week. I could finally let my body rebuild and be free. But I did not know how to rebuild my life again and still the idea of relapse lurked heavily in the back of my mind. If relapse occurred it would most certainly mean a terminal diagnosis.

During the year after treatment I still struggled massively with daily life. I knew all I needed was time but I didn’t feel like time was on my side. I had lost 12 months of my life and I didn’t want to lose anymore. PTSD, depression and sleeping problems set in after about eight months. I had been so focused on staying strong for so long that I had ignored my other emotions. So they came crashing through all at once. Survivor’s guilt was another thing added to my list after losing some friends I fought side by side with during my treatment. I wanted to live for them - for my friends who didn’t make it - a good and purposeful life. I wanted to make a difference; change the future for young people with cancer.

I will be two years cancer free this October. I am the Face of National Bandana Day 2018 for Canteen Australia, I have spoken at charity events and in schools, and I plan to continue fueling the global conversation about research and funding for adolescent and young adult cancer. I’m living purposefully and loving it.

Maddy by Analia Paino

I don’t have any obvious scars from my Cancer. I have digestive issues, chronic fatigue and still to this day struggle with chemo brain. My biggest loss is losing my fertility. High radiation levels shrank my ovaries. It feels almost beyond comprehendible; not even the cancer was close to this feeling of loss. But there’s still a 1% chance of my ovaries ‘turning on again’ and part of me believes that they just might, given my body’s determination to defy the odds.

I will be 21 in November. I am hoping to study Midwifery in 2019 and start supporting women on their journey into motherhood. Something about bringing new life into the world is so appealing to me after coming so close to leaving it. I intend to use my ‘scars’, my fears and everything I’ve learned to empower others every day.