"I was admitted to hospital in May 2022. This was the first time I had received medical attention for atypical pneumonia. Every doctor I saw told me I looked well, I’m young, so I do not need to be here. While being diagnosed with atypical pneumonia, I was told a CT-scan was not advisable due to radiation exposure even though my blood work was abnormal, and I was going to be sent home. Once discharged from hospital, I kept visiting my GP as I knew there was a problem. After two courses of antibiotics, two inhalers and four visits to the GP in total, I finally had enough of continuing to feel awful, so I pushed for chest x-ray." 

After the x-ray, Winnie was once again admitted to hospital in June 2022. There she had 1.8 litres of fluid drained from her lungs and was put on oxygen. It was a traumatic time dealing with an invasive procedure and not knowing what was going on. Doctors suspected tuberculosis. Fortunately, Winnie's lab results came back within days finding stage IV lung cancer.

“I was alone while being told the worst news of my life. In that moment nothing made sense. They removed my chest drain, declared me safe to be discharged and fly home independently to be closer to family. I thought enough is enough and I pushed back at the doctors. My key question was ‘is it because I am young and don’t look like I need to be here? I know my body and know that I am sick.’ These points made a huge impact on the way the doctors were doing things and their attitude from that point changed. Finally, I was booked in to be transferred via air ambulance. A few days went by, I finally arrived at another hospital in Christchurch acutely unwell on admission. It turns out I had a large segmental pulmonary embolism, bilateral pleural effusions, pericardial effusion, lymphangitis carcinomatosis, extensive central right lung consolidation, multiple liver metastases, multiple mixed lytic/sclerotic lesions in vertebrae and sternum, healing fractures right 4th and 8th ribs. I was admitted to intensive care unit due to respiratory compromise. Thankfully, we learned I have the ALK biomarker and I was started on my ALK cancer inhibitor – a targeted therapy called Alectinib at 1200 mg daily.”

After being discharged from the hospital in July 2022 and even catching Covid-19 a few days after being discharged from hospital, Winnie’s recovery has been hard, but she has gradually felt better and better each day.

"I have to stay strong for myself and my family. Some days I can’t be strong, which is okay. I have finally come to the realisation that the feeling that I need to be happy every day is unrealistic and a huge burden to carry. I distract myself by working on my small business and walking my dog. I have my down days but at the end of the day, I feel like I have been given a second chance to live. While my life has changed so much this year, I am thankful that I was otherwise fit and healthy, and my body has been able to withstand such trauma."

In the months leading up to her diagnosis, like many people her age, Winnie had been contemplating starting a family. The challenge, however, is that it’s not advised to have children while taking a targeted therapy. 

"Surprisingly, now that the option to have children has been taken away from me, I would like to have a mini me. My diagnosis has reminded me that everyone takes life for granted. So now I am working towards a purpose of living. I feel it’s so important to follow your heart and do whatever makes you happy. Don’t let this disease define who you are. You are going to have bad days and there will be waves of emotion – that’s completely normal. You are not alone. I believe in a positive mindset. You are stronger than you think."

Knowledge of ongoing research plays a part in contributing to Winnie’s positive outlook. "I look forward to hearing about new research in the future, I am also eager to start fundraising and contributing to help myself and fellow ALKies live a long prosperous life."

Published November 2022