Lily’s Story: Living with Follicular Lymphoma
Diagnosis
Lily first noticed something wasn’t right in December 2022 when she began experiencing extreme fatigue and enlarged lymph nodes.
“My lymph nodes under my neck and armpit were like golf balls and I was feeling extreme fatigue. But I just brushed it off and thought I was going through menopause.”
At first, blood tests didn’t reveal anything unusual. But as symptoms continued, further investigations were arranged.
Her GP initially referred her to a gastroenterologist due to low iron levels, but a follow-up phone call changed the direction of her care.
“My GP rang out of the blue and said she thought it would be better for me to see a haematologist instead. I still thought I was just going through menopause.”
Lily underwent a series of tests including blood work, ultrasound, biopsy and a PET scan. A month later, she returned for her follow-up appointment still expecting a routine explanation.
“At the appointment, the haematologist said, ‘you have what we thought you have.’ I was confused because I didn’t even realise they suspected anything. Then I heard her say, ‘you have non Hodgkin’s lymphoma.’ I didn’t really understand what that meant. I knew Delta had lymphoma but that was about it. She explained it was a form of blood cancer and in that moment I just went numb. After that, I couldn’t really take anything else in.”
“It was like the words were there but they weren’t registering. Everything just felt blurred and hard to process.”
A second opinion confirmed the diagnosis. Lily later returned to her original haematologist who she says she appreciated for her honesty and clarity.
“I really liked my first haematologist. She was so straightforward and honest and I appreciated that.”
Impact and Support
Lily describes the impact of lymphoma as profound, particularly in how it affected her family.
“Telling my children was the most difficult part. They carried the burden with me and rode the same wave that I was riding. It was heartbreaking.”
She was supported throughout treatment by family and friends who helped in both practical and emotional ways.
“I had lots of love and support around me. Family and friends were so lovely, dropping off food. It was very humbling.”
There were also unexpected challenges in how others perceived her illness.
“I told my son’s teachers and some of the kids accused him of lying because I hadn’t lost my hair. That was difficult.”
During this time, Lily found comfort in Lymphoma Australia’s support services which helped her feel less alone.
“It was nice to have Lymphoma Australia there to help you feel that you’re not alone. It was a beacon of hope.”
She accessed a range of resources including the patient pack, webinars, face-to-face events in Sydney, support groups and the online Facebook community.
Advice for Others
Lily encourages others to prepare for appointments and advocate for themselves throughout their treatment journey.
She found that writing questions down beforehand and taking notes during consultations made a significant difference.
“Write down ANY questions that you have before your appointment. Take notes and ask your team to write down the medical jargon because my mind would go blank during consultations.”
Life in Treatment and Rebuilding Strength
Treatment required Lily to completely rethink her relationship with her body and learn to work with it in a new way.
“I tried to really respect my body during treatment. You rely on your body so much and when it couldn’t do what it used to I thought oh no.”
She shifted her focus to small, achievable goals that helped her stay grounded and moving forward.
“I set small goals like walking from the bed to the couch then from the bed to the balcony. As long as I was moving it all counted.”
Simple, everyday experiences became important anchors during treatment.
“I had a goal to get to the beach once or twice a month. I needed to see the ocean, smell the ocean and hear the waves.”
“My new goal was to find the beauty of every moment irrespective of what I was going through.”
Before her diagnosis, Lily was highly active. During treatment, even small movement became meaningful progress.
“When I did Legs Out for Lymphoma in 2024, I could only do 5,000 steps a day. That was massive for me.”
Now, she is rebuilding her strength at a pace that feels sustainable.
“It has taken me two years to get back to the gym. I go two days a week now and I am content with that. I fit in walks every other day and Pilates.”
“I just want to survive the hard days so going back two days is good for me now.”
Her perspective has shifted, with a stronger focus on balance, presence and listening to her body.
“I’m more present with my kids now. I make sure I’m active but not overcommitting or adding more stress.”
She continues to focus on small wins and taking things one step at a time.
“One drip at a time, one month at a time, one step today. Tomorrow I’ll try and do two and be grateful that I can.”
Final Reflection
Lily’s story reflects the reality of living with lymphoma and the strength found in small moments of progress, connection and self-compassion.
“As long as I’m moving it all counts.”
