But I didn’t know… Cancer doesn’t always look like the movies
When you picture cancer, you might imagine dramatic hospital scenes, visible weight loss, and a sudden, unmistakable decline. Alicia’s story is nothing like that. It looked like a young mum returning to work, juggling nap schedules, and clearing her throat between meetings. It looked ordinary. Until it wasn’t.
Alicia Louise Lillington is 33, indefatigable by nature, and mum to a bright, curious toddler. “Outgoing, inquisitive, and indefatigable,” she says, laughing as she explains the word. “It means you do not get tired. Although I did when I was diagnosed with cancer.” Twelve months ago she was finding her feet after maternity leave, easing back into her public service role, breastfeeding at night, and still showing up to community events because that is the kind of person she is. Today, her schedule is punctuated by hospital appointments. Life has slowed down, but her daughter has sped up. “She just wants to run, to go to the park. I am tired, but we make the most of our days. We read. We notice the small wins.”
This is a story about listening to your body, asking for help, and asking again when the first answer does not sit right. It is about partnering with clinicians while staying rooted in your own lived wisdom. And it is a reminder that cancer does not always look like the movies.
The early signs that did not fit the script
Alicia is, by her own admission, a go-getter. Even with a baby waking multiple times a night, she was “still going out, still feeling well within myself.” Then something shifted. First came the tiredness that felt unfamiliar, the kind that sent her to bed earlier and earlier. Then her voice changed.
“I have always sung from the diaphragm. I am a talker, a public speaker. Suddenly my voice just was not there. I started coughing constantly and apologising for it. I kept saying, ‘I do not have COVID,’ because I had been tested for all the strains. But it did not stop.” There was ear pain too, a strange, nagging ache that did not make sense until later. “It turned out to be referred pain from one of the tumours.”
On paper, this could be almost anything: a lingering virus, post-viral cough, asthma flaring, or the long tail of a tough year for a new mum. “Sometimes I was told I was probably just tired from being a new mum,” Alicia says. “But I felt in my gut there was something else.”
Ten appointments, one answer
Alicia went back to the GP again and again. “About ten times,” she says. “I kept feeling like something was off. Sometimes I even wondered if I should go, but I went.” Appointments with a baby can be tricky. “I would bring my daughter, we would chat, and I am very chatty so we would get a bit distracted.”
Before the appointment that changed everything, she did something different. “I wrote a list. All my symptoms, how long they had been there, what we had already tried, and the possibilities I could think of. Long COVID. Mould. Asthma. I was not sure. But I was sure it was more than being a new mum.”
Then came the Thursday call. It was her office day. “They asked me to come in that afternoon. I said I could not, and they said, ‘You are going to need to come in.’” After an X-ray and CT ordered by her GP, the words finally landed: Hodgkin lymphoma.
Hodgkin lymphoma is a type of blood cancer. Many cases today are highly treatable, but “lucky” is not how it feels when you hear the diagnosis. “People say it is a lucky cancer because it is treatable,” Alicia says. “But when you are diagnosed you do not feel lucky.” She found comfort in music, even putting on the playlist of another Australian public figure who shared the diagnosis years earlier. “Some of those songs really resonated with me.”
“You know your body better than anyone”: self-advocacy is not defiance, it is partnership
Alicia’s story is not about fighting doctors or ignoring expertise. Quite the opposite. It is about bringing her expertise to the table too. “Trust your intuition,” she says. “You know your body better than anyone else. Keep following up. Keep a log if it helps. Get things checked. Get a second opinion. Be in tune with your body.”
Self-advocacy is a skillset you can learn. It is not confrontational. It is collaborative. It helps your clinical team help you faster. Here is Alicia’s lived-wisdom toolkit, drawn from the months before and after her diagnosis.
Self-advocacy is not defiance, it is how you and your clinicians co-produce good care. As the Health Care Consumers’ Association explains, it simply means speaking up for what matters to you so you can receive care that is right for you. In practice, that can look like asking for a second opinion, asking questions about a test or procedure, and taking time to think before you decide. It becomes easier when you set clear goals, learn about your health and about how the system works. For plain-English guides and local resources, the Canberra Health Literacy website is a strong place to start.
Alicia’s self-advocacy toolkit
Quick note before we dive in: this is what worked for Alicia. It is not a step-by-step you must follow. Start where you are, borrow the parts that help, and build your own version with your care team so it fits your life and needs.
Prepare a one-page brief.
Before a GP or specialist appointment, jot down:Your top three symptoms in plain language.
When each started and how they changed.
What has already been tried and what happened.
Your three biggest questions for today.
Lead with the headline.
Open the appointment with a short statement: “I am worried because my fatigue and cough have persisted for six months despite rest and negative virus tests. I would like to understand what else this could be and what to do next.”Ask three clarifying questions.
What do you think this could be?
What should we rule out and how?
When should I come back or escalate if things do not improve?
Bring a witness.
If you are comfortable, take a support person to listen, take notes, and help you remember instructions. If you attend alone, ask the clinician if you can record a summary of the plan on your phone.Keep a symptom log.
Short, factual notes beat memory, especially when brain fog is real. Write dates, duration, and impact on daily life. Patterns help with diagnosis.Use time anchors, not vague terms.
“I wake at 2 am with coughing three times a week” is more useful than “I cough at night.”Name your concern, not just your symptom.
“I am worried this is more than sleep deprivation.” It gives the clinician the context behind the test you are asking for.Request a review plan.
Ask, “If the first plan does not work, what is plan B? What is the timeframe to reassess?” Anchoring next steps reduces the risk of drifting.Seek a second set of eyes when needed.
Second opinions are normal in healthcare. They are not an insult. They are a safety net.Protect your dignity.
Speak up about small things that matter to you. Alicia did. “They weighed me in front of a room of people. It made me uncomfortable. I wrote it down, reflected, then asked if we could do it more discreetly next time. They took it on.”
Self-advocacy is not about getting your way. It is about ensuring your experience and observations are part of the clinical picture. It keeps the partnership balanced.
A body that whispers before it shouts
Looking back, Alicia can see how her body tried to get her attention. “The tiredness that did not make sense. My voice going. The cough. That ear pain that was actually referred pain.” None of those are movie-moment symptoms. They are ordinary. But stacked together, and held over time, they told a story.
If you are nodding along and thinking, “This is me, but I am not sure,” Alicia’s advice is simple: capture the story your body is telling. You do not need medical jargon to do it well. “Write it down,” she says. “You know your body. Keep going back if you need to.”
The days that test you
There is an honesty to Alicia’s reflections that will feel like permission for many. “I wanted to be an A-plus patient,” she says. “Meditate, journal, do the inspiring things. Sometimes the helpful thing was to admit it was a bad day, have a cry in the shower, watch a sad film and let it out.” Letting go of perfectionism was not quitting. It was care.
Journalling became a quiet anchor, not just for feelings but for facts. “With chemo and cancer you can have a lot of brain fog. I have read back entries and thought, I cannot even remember that happening. Writing helped me process and it also helped me give clear feedback when something was not working.”
Music helped too. So did small moments with her daughter. One day, before she was even talking, Alicia mentioned a tissue and her little one proudly brought over her shoes, having caught the “sh” sound and matched it to what she knew. “She amazes me,” Alicia says. “It is the little things.”
What she wants you to know
“Trust your intuition. If you feel off, do not be afraid to get checked and to follow up. Keep a log. Get a second opinion. Be in tune with your body. You know it better than anyone else.” Her hope is practical and generous: “If sharing my story helps someone get diagnosed sooner, if they recognise fatigue, weight changes, headaches or a cough that lingers and think, ‘I will follow this up,’ that would mean a lot.”
Working with your medical team, not against them
Alicia is clear that clinicians are partners. “I am grateful for my GP ordering the scans and for the teams caring for me now,” she says. What made the biggest difference was showing up prepared and speaking plainly about what mattered. It helped the right tests happen sooner and it helped her care feel more humane.
If you are unsure how to start that kind of conversation, try language that honours both forms of expertise.
“From my side, these are the changes I am noticing and what worries me. From your side, what should we consider next?”
“If this plan does not change things by October, what is our next step?”
These are respectful, concrete prompts that invite partnership. They also keep momentum, which matters when time stretches.
Dignity in the details
Healthcare is made up of big decisions and small moments. The big decisions become stories. The small moments shape how we carry those stories. Alicia’s example about being weighed in a public area is a small moment that mattered. “It was about dignity,” she says. “I sat with it, wrote it down, and brought it up the next time. There was a more discreet way, and the team took it on.”
If there is something small that grates for you, it is not petty to raise it. It is a way of staying human in a system that can feel rushed. Frame it as a shared goal: you want your treatment to be as effective and as bearable as possible. Small adjustments can do a lot of work.
If this is you right now
If you are reading this with a knot in your stomach, here is a gentle, immediate plan.
Book an appointment. Put a time in the diary within the next fortnight. If you already have one booked, bring it forward if symptoms are worsening.
Write your one-page brief. Top symptoms, start dates, what you have tried, and three questions.
Decide your escalation points. If things worsen before your appointment, know where you will go and who you will call. If you are not sure, ask your GP to spell out what “worsen” means for your situation.
Enlist support. Ask one person to be your note-taker or lift-giver. Even one ally can lighten the load.
Be kind to yourself. You do not need to ace cancer, or suspected cancer. You just need to keep going.
Most symptoms have many causes, so resist self-diagnosing or jumping to worst-case conclusions while you wait. Set clear information boundaries: ask when results are due, who will contact you, and avoid unvetted Googling (seriously, don’t do that at all). Use simple daily regulation: slow breathing, guided relaxation, gentle movement, keep a basic routine, and stay connected to one or two trusted people.
If distress spikes, reach out to supports like Cancer Council 13 11 20, Lifeline 13 11 14, Beyond Blue 1300 22 4636, or healthdirect 1800 022 222; in an emergency call 000.
Your lived wisdom matters
You are the expert in your body. Your clinicians are experts in medicine. When those two forms of expertise meet, good care gets better. Alicia’s story does not hand you a diagnosis. It offers a way to be heard. Keep notes. Ask clear questions. Speak up for your dignity. And if the first answer does not fit, try again.
Cancer does not always look dramatic. Sometimes it looks like a cough that will not end, a voice that will not carry, a tiredness you cannot explain. Sometimes it looks like a young mum who knows herself well enough to keep asking until the story makes sense.
If Alicia’s story stirs something in you, let that be your prompt. Make the appointment. Write the list. Bring your lived wisdom to the room.
