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  • Janine
  • 30th Sep. 2021

“I didn’t realise how challenging life would be when I first got sick."

Janine’s indescribable rollercoaster had already begun before her cancer diagnosis.

“I’d spent months going to the GP after hours, physio appointments, occupational therapy, and requesting higher doses of medication, as I was often crying myself to sleep from the pain. I knew something wasn’t right and was tired of being in agony. Finally, a new GP sent me for an ultrasound and x-ray. After, he told me my bone was thinning and that I’d been immediately referred to the hospital.”

"I’ll forever be grateful for that GP, as I might not be here otherwise.”

“I had CT scans, an MRI, and a biopsy – my bone sample was even sent to specialists in Auckland, Australia and Boston, USA, as they couldn’t figure out what it was. Then, three months later, I was diagnosed with a rare type of cancer – Osteosarcoma Bone Cancer.”

“Cancer was such a scary word to hear. I only ever heard of older people getting it and I never thought I would.”

Janine was only 20 years old when she was diagnosed with cancer. It came just as she was enjoying a new adventure of living on her own and starting a new job, and suddenly her life changed.

“My whole world felt like it was crashing down on me. All I could think about was how I would tell my loved ones and if I was going to survive. I felt so hopeless about the situation.”

“Going through treatment on my own seemed impossible, so I moved back in with my family.

“I didn’t realise how challenging life would be when I first got sick. It was a rollercoaster, going back and forth to hospital, especially as I was always neutropenic once I finished chemotherapy.”

Having family and friends around is so important, but it can be hard not having support from people who understand what you’re going through, especially people your own age.

“I grew really close with my partner at the time and my aunt because they looked after me, taking me to my appointments and staying over in the hospital with me.

“But I didn’t know anyone my age that had gone through cancer. The only people I knew who would genuinely understand was my oncology team and CanTeen.

“I think it would have been hard for my friends to see me sick and not acting like myself.

“I also learnt a lot about my support network, especially people who I thought would be there for me but weren’t.”

Cancer can impact your life in many ways, including hobbies, work, socialising, and sometimes your independence.

“Even though the cancer was in my humerus, I also had to have my rotator and surrounding muscle removed, which meant I’d never lift my shoulder again. It felt like something was taken away from me. I loved going to the gym and was a ballet dancer for 10 years, so finding out that life was never going to be the same was really challenging.

“Due to treatment I had to stop working and I felt out of place a lot, I couldn’t go to social events or catch up with friends, as when I was on my ‘off weeks’ from chemo I’d always end up sick in hospital.”

“But it’s important to feel included, even if you might not make it because you’re ill, it helps you feel like yourself.”

“The biggest hurdle was getting used to the fact that I couldn’t look after myself, I needed support. I felt like my independence had been taken away from me.”

Having cancer and going through treatment can be an extremely scary and isolating time. Especially for rangatahi.

“I nearly ticked off all the side effects listed for the different types of chemo I had. At one point, when I was neutropenic, and my mucositis started to take over, I couldn’t speak at all. It would hurt to open my mouth or cough, and even breathing was a struggle. I couldn’t eat or drink and pain relief had no effect. I needed a translator when nurses and doctors were speaking with me.

“Being completely raw and honest. There were moments I thought I wasn’t going to make it out alive. I had coughed up, vomited, and sneezed out blood so many times it was unbelievable. I was sick of it. I felt like my body had had enough fighting of this silly disease. As had I. I remember crying my eyes out wanting it all to end.”

Cancer doesn’t end after treatment, for many, some of the biggest impacts of cancer happen once the treatment is over.

“Life will never be the same after treatment. You’re not the same person you were before you had cancer. After treatment, life was a lot harder. Especially for my mental health. I fell into depression and was trying to figure out what was next in my life.

“It’s all about learning your new normal and accepting what has happened and how you can love yourself and your body, as you have been through so much. I learnt to not be so hard on myself or put myself down. You’re only human and are worth it, despite all the struggles you go through.

“I also had to learn to drive again. To live life with a new shoulder. To do things with my left hand, whilst my right side was recovering from surgery.”

CanTeen was there for Janine throughout her experience, both during treatment and beyond. She wanted a support network of people who could understand what she was going through.

“CanTeen was one of my support groups during treatment. They helped me feel like I wasn’t alone on this journey and created a safe space that enabled me to learn and grow.

“I enjoyed one-on-one sessions with my Psychosocial Support Worker, who helped make me feel normal. I also felt that having a space to talk freely about my feelings, not just cancer, made me feel valued and understood. Especially on such a rough journey.

“Even after treatment, CanTeen has been such a good support network. If I’m ever feeling under the weather, my key worker is always there to support me, offering good advice that helps me keep pushing through those tough seasons.”

Janine also found support from other rangatahi who could understand what she was experiencing. Especially through CanTeen Connect, our 24/7 online service and App for rangatahi.

“At the very beginning of treatment my CanTeen key worker suggested CanTeen Connect, so I signed up to see what it was all about. I found it very interesting scrolling through discussions between young people from New Zealand and Australia, who were sharing different experiences. It also gave me a sense of all the people my age going through a similar experience.

“It gave me a space to interact with others going through a similar experience, and you can’t find that from anyone who hasn’t gone through treatment or lost a loved one. You can share tips and ways to keep yourself entertained, particularly during treatment.”

“The best thing you can do is let them know you're there for them. A text message or a quick video call, even just sitting with them in the room without saying anything can give a sense of comfort. It makes you feel like you’re not alone.”

Janine wants to share her experience to help reach other rangatahi impacted by cancer.

“Whilst going through treatment I always knew that once I finished chemo, I wanted to give back to the cancer community. Help others who are going through what I went through.”

“Be kind to one another and love those who give you their time and make you feel happy, you never know when it'll be the last time you laugh with that person. Cancer can take you just like that.”