Individual students, parents and staff members have generously shared their stories with us. While every cancer journey is different, these personal insights enrich our understanding of how cancer can affect a school community.
Stories on this page:
- Emma’s story (secondary student)
- Genevieve’s story (parent)
- Ruby’s story (secondary student)
- Jeremy’s story (secondary student)
- Shirley’s story (secondary schoolteacher)
- Susan’s story (primary schoolteacher)
- Daniel’s story (secondary student)
- Patricia’s story (parent)
Emma’s story (secondary student)
On the diagnosis:
My mother was diagnosed with breast cancer when I was 15. It was the first day of school and she told me when I got home. I thought she was just going for a check-up. I imagined the worst, I thought she was going to die.
It’s just me and Mum, and we didn’t really have any support. I broke down in tears in front of people at school the next day. My year adviser and student welfare officer took me into an office and talked to me.
On telling friends:
I didn’t want to share my mum’s diagnosis with everyone. Mum and I are both really private. I didn’t want people to treat me differently.
I had a bit of trouble with the girls in my year. I only told three friends who I trusted, but one of them told other people. I didn’t want everyone to know. I didn’t know what was going to happen, if Mum was going to die, and I didn’t want people to gossip.
At that stage, we didn’t know how bad it was and we wouldn’t know until after the surgery. Mum ended up having a lumpectomy and radiotherapy, but didn’t need chemotherapy.
Some friends tried to support me but I pushed them away. I shut out a lot of friends and kept to myself. I didn’t have anyone who really understood. The only person I was really close to was Mum but I couldn’t tell her how I felt. One friend would ask how I was going but I’d snap at her because I didn’t want to talk about it. I didn’t want to think about it, I didn’t want to know about it.
On being a young carer:
I took on the role of Mum’s carer. I had to learn how to iron, cook, wash clothes, hoover. It was a lot of effort, but it has made me more determined and stronger. Sometimes I feel like I have taken on a more motherly role. I’m more mature now.
Because I was helping Mum at home and doing most of the cooking and cleaning, I started struggling with school. I had high expectations of myself and didn’t want to ask for help, but I couldn’t always get my work done on time.
It would have been good if school staff had regularly checked in with me to see how I was going. They helped in the beginning, but after that I had to go and ask for help.
On schoolwork:
I got in touch with CanTeen and the member liaison helped to explain to my school how caring for Mum was affecting my schoolwork. The teachers gave me more time to do my assignments. It did help me when I needed it, but then I got a little bit lazy and slacked off. So now I don’t want this year’s teachers to know about Mum’s cancer. I know I would use it as an excuse.
I kept up my attendance, but my grades dropped a lot. I couldn’t focus in class and I wasn’t engaged. I had so much going on in my head and I’d stew in my thoughts. If Mum was having a bad day, it would affect me. One of my teachers offered to tutor me at lunchtime and that helped.
On life after treatment:
Mum and I were close before, but now we are even closer. She relied on me. If she was scared, I’d have to comfort and console her. I don’t rely on her as much now. I still like getting her advice, but I’m more independent.
I’ve changed a lot, I’m more positive and motivated now. Last year was about Mum, and this year I’m focusing on my goals.
Genevieve’s story (parent)
On the diagnosis:
Leo was diagnosed with leukaemia almost two years ago, when he was four years old. He was attending preschool and was meant to start school the following year. His two-year-old sister Rose goes to the same preschool. He also has two older brothers: Jasper, who was in Year 4 at junior school, and Alastair, who was in Year 8 at high school.
As soon as Leo was diagnosed, I called my children’s schools and spoke to the principals. At that point, I was still waiting for the doctor to come in and tell me he had made a big mistake. I wasn’t ready to go into a lot of detail with the schools but I wanted them to know. Their initial response was it will be okay, we will be here to help you. As time progressed, I called them all again. The main thing I wanted was for them to be kind to my kids, and they were. Everyone just wanted to know how to help and we had a really positive experience with all the schools – maybe because we were open to help.
When you are in the haze of your child being sick, you don’t know what you need, so it really helped to have offers that were concrete. They might say, “I’m thinking of picking up your kids from soccer – is that okay?” or “I’ve baked you some biscuits. Is that okay?”
On support for siblings:
Leo never returned to preschool because he was too sick, but they were still extremely supportive. The kids sent him pictures they had drawn and photos of themselves pulling funny faces, which he loved. Rose kept going to the preschool, which I’m really glad about – it was somewhere familiar for her to go, and they provided reassurance and showed such kindness.
His brother’s illness didn’t affect Jasper’s school performance, but the principal did say he knew when I’d been spending a lot of time at the hospital because Jasper would be sent to his office a lot. The principal had a sense of humour about it and reassured me: we’ve done this before, we’ll help him through. He would call me once a month to see how we were going.
The only thing I would say is that as Jasper progressed to the next year, the teachers didn’t always know about his brother’s cancer. So it might have been good to have a bit more continuity.
Alastair’s high school made some allowances if he was a bit late to school or handed in an assignment late, but they did it discreetly, which was age-appropriate. He knew there was a safety net there, but he preferred not to have a huge deal made of it at school. Although he told some friends, others didn’t know – he wanted to be the one to decide who he told. Alastair wouldn’t go to social events because he wanted to spend his time with Leo, so I had to tell him that it was okay to go out with his friends. We tried to made it okay to have a laugh, to have fun. Alastair kept up his studies but it was difficult – often he would be studying for exams in the hospital cafeteria. He said he felt like he was drifting in and out of worlds.
On starting school:
Leo would have started school about six months after diagnosis, but he was still too sick at that stage. I met with the principal to explain the situation and then received a phone call from his kindergarten teacher, who was keen to start building a relationship with Leo. She kept in touch with me, mainly by email, until Leo was well enough to start back at school, a few months into the year.
We were involved in the Monkey in My Chair pilot program through Ronald McDonald House Charities. This worked really well for Leo’s age. A big toy monkey sat in Leo’s chair whenever he wasn’t in class. The children took photos with the monkey and sent them to Leo to introduce themselves. On his first day at school, the kids were waiting for him and holding the monkey. Since then, whenever Leo is away for treatment, the monkey sits in his chair. The kids all know what it means and it saves having to explain his absence over and over again. He couldn’t be there on school photo day, so the monkey took his place in the class photo. When Leo’s treatment ends, all the kids will wave goodbye to the monkey.
When Leo was well enough to go to school, he started off with a few hours a day. We let him set the pace. The thing is that it’s really hard to plan – the plan on paper and the reality don’t always match up. Whenever he had a round of treatment or a temperature, he couldn’t go to school.
Coming back to school after treatment takes a lot of bravery. You have been through such a traumatic experience and you look so different: no hair, no eyebrows, no eyelashes. At hospital everyone looks the same but some kids find that their friends don’t even recognise them when they return to school. Especially in those first few weeks, it would really help the student to have a “go to” person if they have a problem or feel lonely. It could be a peer or a staff member, just someone who is “safe”.
Leo’s treatment meant he was easily sunburnt and couldn’t spend too much time in the sun. The school handled this well, in an inclusive way. His teacher would pick out a few people to spend some time in the library and Leo would just happen be one of the kids picked.
On life after treatment:
The treatment for leukaemia takes two years. It’s a very long time, especially to the children, and at times it can seem like it’s never going to end.
I’m really proud of all four of my children. Despite all the hardship, there has been a lot of growth for them. They are more resilient and have developed strength and compassion. Along with all the tears, fear and heartache, there has been joy and sunshine. Leo’s siblings pulled him through and we pulled through together as a family.
Ruby’s story (secondary student)
On diagnosis and treatment:
It was very out of blue. I had been having constant headaches. When I found out it was a tumour and I had to have surgery, it was a big shock. I was so surprised. I thought it would be something simple.
After surgery to remove the tumour, I found out my treatment wouldn’t end there. Six weeks later, I started radiotherapy. I kept on going to school and had the treatment in the afternoons. Even though it made me nauseous, I pushed through. Then I had four rounds of high-dose chemotherapy and was off school from November to March.
On schoolwork and study:
I was the first person in my school who’d ever had cancer. When I was having chemo, the school didn’t realise how sick I was going to get and they kept sending me assessment tasks. After a while, they stopped doing that and just asked how I was now and then.
A lady from Back on Track met with staff at my school. There was one teacher at school who was responsible for keeping in touch with her and with me, which was really helpful.
After chemo, I went back to school and did two HSC subjects. What was I going to do at home? It would have been lots of time doing nothing. It was good to get my brain working again. Even though I didn’t end up needing any HSC results to get into uni, those subjects have really helped me with my uni work.
It’s hard to go from achieving really high marks. I still had high standards but I did have to drop them a bit so I wouldn’t be disappointed. The teachers gave up their time to give me extra tutoring at school, and I also had tutoring after school through Ronald McDonald House Charities. The teachers were economic. I had missed so much, so they narrowed it down and only told me stuff I needed to know.
Because I didn’t have an ATAR, I got into uni through a new scheme called the Schools Recommendation Scheme. The school put in an application based on my character and behaviour and my academic performance before the cancer treatment. So I was able to go straight to uni.
On returning to school:
I went back to school two weeks after the brain surgery. I just wanted to get back to life. To look at me then, you wouldn’t even know – I just had a patch of hair missing at the back and I had really long hair, so I could cover it. After radiotherapy, I lost my hair and it’s never really grown back.
Early on, we just told my year and they all wrote little messages. When I was about to start radiotherapy, the whole school was told. Because I lost my hair, I was wearing a head scarf. I think they had to know – I couldn’t really hide it and it saved me from being asked questions all the time.
My friends were supportive at the beginning, but as my treatment went on I was away for so long and I kind of lost contact. A couple of friends visited me at home between the rounds of chemo, but I wasn’t really meant to see people because of my lowered immunity. After treatment, I realised a lot of my friends’ conversations were about little things that didn’t matter, like the media and celebrities.
When I went back to school after chemotherapy, I had lost so much weight and was so weak that I had to use a wheelchair. I felt awkward and really nervous. Everyone looked really shocked. People stared a lot, especially the younger students. I hated it. I can’t blame them because it’s not every day you see someone looking so different and they were probably trying to understand what was going on. I kind of got used to it, but I still didn’t like it.
When I first went back to school, my friends helped me, but once they thought I was better, they sort of drifted away. Even once I was out of the wheelchair, I still needed help carrying my books, but I’d have to beg them to help me. Maybe they got sick of it or thought I didn’t really need help anymore. But you need help for longer than you look like you need help.
Jeremy’s story (secondary student)
On keeping in touch:
All my teachers and friends were in contact via email, so I was never out of touch with the group. They also sent me lots of cards and letters. Being given 25 letters at once was very overwhelming and made me feel very happy. People in my year also organised large cards, which they got more than 300 people to write on. They kept me entertained for hours!
On keeping up with schoolwork:
The school was fantastic. The reverend, head of senior school and counsellor came to the hospital to discuss my situation with my family. They said my health was the first priority, and they laid out the options: I could either give up on Year 11 and try next year, or I could try to keep up with the minimum curriculum requirements.
My parents encouraged me to give up Year 11 and do it next year, but I didn’t want to be left behind by my friends. I decided to try to do the minimum requirements. My parents encouraged me to stick to my decision. We established this system where I’d try to do at least a little bit of work every day, focusing on the key concepts my teachers identified. As we went on, though, there were days when I just wasn’t up to doing any schoolwork. We called those days Chemo Days. I didn’t do any schoolwork on Chemo Days.
On returning to school:
There was one administrator I went to for help when I was back at school. She was so helpful. When I was on crutches or in a wheelchair, she made sure all my classrooms were close by. That helped me get around easily.
On exam provisions:
The school’s special ed department organised someone to help me apply for special help for the HSC. I was a slow writer and had problems writing essays within the time limits. They arranged for extra time for me, and a laptop, because I type faster than I write. I sat all the exams at the same time as the other students, but I was in an area with other kids with the same considerations. All those accommodations were fantastic.
On tertiary study:
I applied for the Broadway Scheme, which allowed the University of Sydney to give me extra marks because of my special circumstances. If my ATAR was 95 and I received two extra points from admissions, I could enrol in a course that requires a 97 minimum. It’s easy to apply for, and it’s fair.
In the end, I didn’t use the scheme because I got good enough marks. But it helps if you’re disadvantaged. It makes you feel like your uni plans won’t be ruined just because you had cancer.
Shirley’s story (secondary schoolteacher)
On telling colleagues:
I waited until I could call the deputy principal without weeping. I talked to him on Saturday because I was diagnosed on a Friday and had a surgeon’s appointment on Monday, so I wouldn’t be in. I told him I had breast cancer and I was happy to talk about it, but I asked if he would tell the staff at the Monday morning meeting.
As far as my colleagues were concerned, some were comfortable enough to be openly supportive. But some were so uncomfortable that they didn’t ever talk about it. I don’t think that those people had a lack of concern, I just think they had no idea what to say.
Often people are most disturbed by what they don’t know, so I took a very up-front approach. If people are brave enough to ask questions, I don’t think there should be fog and mirrors. No mystery.
On managing workload:
Because I knew the relief teacher, I left my plans and diary on the desk and she would write in it as if it were hers. When I came back, I could look at what she’d done. We also left ourselves Post-its and called each other, so that was absolutely the ideal situation.
After my surgery, I said to students, “I’m going to be writing on the bottom of the board, so you’re going to have to cope.” One of the students asked why and I said I’d had some lymph nodes removed and I couldn’t reach up to write on the top of the board. They just adapted to that.
Susan’s story (primary schoolteacher)
On the diagnosis:
The principal was very involved. I took time off for some tests and he rang me that night. When I told him the results, he was just as devastated as I was.
On managing workload:
The hardest part is going for tests. I had constant tests – three-month tests, scans, doctor appointments. It takes it out of you. I would try to do it all in one day, so I didn’t have to take too much time off school, but it was exhausting… I made the decision to take six months off. The administration was supportive of my decision.
I absolutely couldn’t have managed if I hadn’t been able to work part-time. That was so helpful. I don’t know that the students noticed my diminished schedule, but they didn’t ask me questions. Maybe they’d been told not to. But I honestly didn’t mind.
Daniel’s story (secondary student)
On losing a parent to cancer:
We were told to say our goodbyes, but I wasn’t ready to say it. Friends and family always said that at least I had the opportunity to say goodbye because his death didn’t happen suddenly in an accident.
The truth is, it is just as bad either way, and you are not prepared for it even if you are expecting it. From the day my father was diagnosed to the last day was the hardest eight months I will ever face.
Patricia’s story (parent)
On her son’s reaction:
When my husband was sick, my son would be quite rambunctious at school. I talked to his teacher to warn her about his reaction.
On the school’s support:
When my husband died, it was after his cancer metastasised and he had a sudden stroke on our son’s seventh birthday. That was so hard.
The principal of the kids’ school attended my husband’s funeral. I truly appreciated that. It was above and beyond.
When my son returned to school, the teacher and all the kids had made a book about Joey’s dad. It was so thoughtful, and it means a lot to have a tangible keepsake like that.
