Josh
I officially received my Hodgkin Lymphoma diagnosis in March 2024, after a biopsy. However, my initial doctor’s appointments began in February 2024. It all started with what seemed like a prolonged cold back in October/November 2023. Over time, this progressed into fatigue and feeling constantly tired.
At the time, I chalked it up to just being busy and working hard. I’m the kind of person who likes to keep busy, always on the go. I was working 50–60-hour weeks while also packing for a road trip from Victoria to WA in my car.
Symptoms I Ignored
The fatigue started to take a toll. I no longer enjoyed things like having a beer with my mates or hanging out for extended periods. Chest pains followed, but I assumed it was due to working hard at the gym.
I left for WA on December 27th, 2023, and came home around January 16th, 2024. During the trip, I started experiencing severe night sweats—I’d wake up drenched from head to toe like I’d just gotten out of the shower, but I wasn’t hot. I also lost a significant amount of weight. I weighed about 73kg before leaving but returned weighing just 64kg. Again, I brushed it off, thinking it was due to not eating well while constantly traveling.
After returning home, I still had the cold and had to go back to work immediately. I went to a local GP, who gave me antibiotics. As expected, they didn’t help. A few weeks later, I saw my regular GP, Dr. Michael Moon. He was immediately concerned. He suspected a chest infection but also mentioned the possibility of Hodgkin Lymphoma, which I’d never even heard of.
At first, I didn’t take it seriously—after all, I was young and fit, and that kind of thing doesn’t happen to “normal kids” like me. But after an X-ray and blood tests revealed high markers and a dark spot on my chest, further CT and PET scans confirmed it was cancer.
Treatment Challenges
I started treatment thinking I was young and invincible. But I was told I’d be getting the strongest chemo possible (ABVD and BEACOP). The reality hit hard. Each chemo session lasted 4–6 hours on IV. I had to suck on ice to prevent burns in my mouth from the toxicity of the chemo. Walking out of the hospital was a struggle, and the nausea afterward was brutal. Anti-nausea meds helped stop vomiting, but the feeling was indescribable.
For the first 24 hours after chemo, I could barely eat—only managing watermelon and grapes. Then came the mouth ulcers, as the chemo attacked the inside of my mouth and throat. The drowsiness was overwhelming; I’d sleep most of the day, feeling heavy and weak. Around days 5–8, the body aches would set in, and everything hurt. I was constantly out of breath and felt lethargic. Only on days 11–13 did I start to feel somewhat normal—just in time to start the cycle all over again on day 14.
Physical and Emotional Toll
The treatment took a major toll on my physical and mental health. I lost all my hair—eyebrows, facial hair, head, body—you name it. Looking in the mirror was tough; it felt dehumanizing. Physically, I went from playing footy and hitting the gym to struggling to climb stairs. Mentally, it was exhausting. Many of my friends didn’t know how to support me, but my family and partner were incredible throughout the journey. I think the hardest part was finishing a chemo cycle and feeling proud of getting through it, only to know I had to start all over again. You need to be mentally tough, or it’ll break you.
Support and Advocacy
Thankfully, I had access to great support. I regularly saw my doctor and a psychologist and could always reach out to the hospital’s nurse for prompt help. Work wasn’t an option during treatment—it was just too brutal. I tried to keep busy when I felt okay, like working on my car, but I had to avoid big groups due to my compromised immune system.
I didn’t directly access Lymphoma Australia’s services, but they’ve provided an incredible platform for me to spread awareness. I have a reasonable following on Instagram, and I wanted to make a social difference. I started a GoFundMe to raise money for Lymphoma Australia and the Peter MacCallum Cancer Centre, where my aunty received care before she passed away from cancer in 2018. So far, I’ve raised $13,000, and it’s still growing. I hope the funds help educate others and support patients in need.
Reflections and Insights
For the most part, I put on a brave face for everyone. By telling people I was fine, I was almost convincing myself that I was okay, which weirdly helped me push through. My immediate family—my dad, stepmum, and girlfriend—were incredible. They cooked, cleaned, emotionally supported me, and never once stopped loving me. I had a few close mates who were valuable and put heaps of time and effort into seeing me, and that was super supportive.
The hospital system was incredible. I was super lucky not to have too much financial responsibility, as my family supported me from that point of view. The hospital process was amazing. I couldn’t thank the staff from the Alfred Hospital and my GP enough. The healthcare system also bulk-billed my medical treatments with no cost to us, and all my regular doctor’s appointments were significantly cheaper due to the safety net. The nurses genuinely cared and showed so much dedication to their jobs.
Appreciation for Life
Being in remission, it sounds cliché, but I think I have a newfound appreciation for life and its value. You don’t realize how close you can come to death, and when it can come knocking. I’m one of the fortunate ones who had it out, where that’s not often the case. I now value the small things—driving half an hour to spend time with my grandparents, saying yes to having that beer with a mate and a catch-up, or going for a run not because I want to, but because I can. Life is fragile, and we can get caught up in the day-to-day of just work, eat, sleep, repeat, forgetting to do the things we love. Last year taught me that it’s so important to do the things you love because, at the end of the day, those are the memories that stay with you.
My Message
I think my main message is that Hodgkin Lymphoma can affect anyone at any time. It doesn’t discriminate. There is no prevention. Cancer isn’t just something that people who smoke experience or older people. It can affect anyone at any age, and I think that’s the key message: If something feels wrong, go get seen. I hope my story can help just one other person who has been affected and, like me at the beginning, had those “why me?” and “why now?” questions.
At 22, I went into this thinking I was invincible. In some ways, ignorance was bliss—if I’d known how tough it would be, I might have struggled to stay motivated. But I knew I’d win, and I did. It’s a mental game. If your mind breaks, your body will follow. But it’s incredible what your body can endure when your mind stays strong.
Now, I’m in remission and grateful to share my story to help others. By raising awareness and fundraising, I hope we can improve patient-centred care and support for every person navigating this disease.
This story was published with the consent of Lymphoma Australia Association