Introducing Pui

My name is Pui. I have been living in France since 2006 and am originally from Thailand. My journey with cancer started in December 2017. At that time, I was 34 years old. It was a very busy year for me, working as a sales adviser for a prominent French brand.

I started to experience some worrying symptoms, including a cough that would not go away, so I saw a doctor and he thought that I had contracted Tuberculosis. I was given a CT-scan of my lungs and the results showed a large mass in the left lung. At the time I did not believe that the images were really of my lung! I ignored the results because I thought it couldn't be correct. I was healthy and I hadn't smoked in my life, I was in utter shock.

I continued to work for a few months until my symptoms worsened to the point where I was unable to speak and breathe comfortably, at which time my supervisor at work told me to go home. When my husband picked me up from work he drove me straight to the nearest hospital. Their tests once again confirmed that I had a mass in my lung measuring 5cm.

I had a lung biopsy, a PET scan and an MRI to determine what type of lung cancer I had and to which parts of my body it had spread. The results showed that I had stage IV, ALK -positive non-small cell lung cancer. It had already spread to my brain, bones and liver. 

In December 2017, I was prescribed my first targeted therapy, Lorlatinib. At that time, Lorlatinib was still in clinical trials in France and I entered the trial. It worked really well, but not without side effects including neuropathy that still affects me to this day. So, my doctor moved me to another targeted therapy called Ceritinib. Unfortunately, the side effects were unbearable: nausea, diarrhoea, headaches, to name a few. This led me to another targeted therapy called Alectinib; this worked well for me for two years until June 2021.

When Covid-19 came to France, I moved from Paris to Vichy where I could have a slower life and live closer to nature. I had five rounds of radiotherapy on my brain. For the most part it worked very well, but unfortunately the cerebral metastases recurred and came with side effects such as edema and haemorrhaging, causing me to fall a lot and even lose consciousness. It was then my doctor decided that chemotherapy would be a good option.

Before my cancer diagnosis, I had always been an active and hard-working person. I love to work and connect with people. I had worked in the hotel industry for a long time and then became a sales adviser for a famous French brand in Paris. I worked a lot, but it made me happy to meet international clients and make new friends. I used to have a big city lifestyle: working, going out with friends and having a drink from time-to-time. My other hobbies include going to the cinema once a week with my husband; we have a passion for Disney, Marvel and Star Wars movies. We have an annual pass to go to Disneyland Paris once or twice a month - which we love. We also like to go to see art expositions and visit museums. 

Living day-to-day

Honestly, at first I really didn't cope very well with my diagnosis. I could not believe that I had a tumour being so healthy and young. Then once I started to realise how ill I was, I thought I would die very quickly - I was very underweight and I looked sick. But with treatment, the support of my doctors, nurses, family and friends, I was able to get through the worst moments in my life. Once I was over the shock, I was able to accept what was happening. I went to speak with a psychologist specifically for cancer patients; she helped me to see things differently and made me think positively. She told me simply that I have to stay in the present and live mindfully. Also to think day-to-day and not too much in the future. I should live in the present and appreciate the simple things round me, such as the leaves falling on the ground, the birds singing, nature, the presence and love of my family and friends. A friend also told me that I should not live for myself, but for the ones who love me like my parents, sister and nephew, nieces, husband and friends. This way of thinking enlightened me and made me stronger and motivates me to live and keep on fighting every day. 

Now that I’m in treatment, my life is quite different. Sometimes I break down and cry. I wrestle with certain aspects. For example, I thought the cerebral metastases were gone, but they keep coming back. The other tumours decreased, so I wonder why do the cerebral metastases always come back? Since I can’t find the answer to this or other questions, I find a better way of thinking for me is to accept it and live with it like a chronic disease, such as diabetes. 

I think about other people who have lung or other cancers who might be having a worse time of things. Some people also face other problems along with their cancer – whether personal, working, living in a war zone. Everyone is suffering in some way and I try to feel grateful and appreciate this chance that I have been given; the chance to have multiple treatments, technology and research that could help me. Thinking positively is like a cure for me!

At present I am on a combination Avastin-Taxol chemotherapy. I have just finished the first three rounds. My hair is gone, I am a bit tired, but it's a bearable side effect for now. I hope that the results of my next scan will be good and encouraging for me. On days that I feel strong, I like to walk for about an hour twice a week or so. I live my life as I can when I feel ok. On days that I don’t feel well, I stay at home and sleep and rest as much as I can. I like to share my story on social media in case it can somehow inspire and help others. I want to show others that cancer is not that bad if you have a positive mindset and want to live for others. 

The empathy of others is most unexpected positive thing to happen. I received so many unexpected support from friends and colleagues. It provoked me to move from Paris to Vichy for better air and to be surrounded by nature. 

I am glad that we live in a time when cancer research is on the precipice of something amazing. I consider myself lucky that targeted therapy and clinical trials are available to so many. My message to pharma, oncologists and researchers is thank you for your hard work and efforts and not giving up on ALK-positive. 

For anyone newly diagnosed person, I’d like to say that you are not alone. It’s understandable to be upset and wonder why this has happened to you. It’s not your fault and there are always solutions and treatments. It’s fine to cry and be upset for a while. In fact, be sure to take your time to accept this, but then get up and be strong and fight for others that love you. Follow your oncologist’s advice; eat and sleep well, do exercise or things you do to relax, and if your health conditions allow it, work. If you need to talk to someone about cancer, you could talk to a cancer counsellor at the hospital or the cancer associations. I find it is important to get rid of things that you find hard to share with others. Lastly, be positive and be present and do your best every day for yourself and your loved ones. Stay in the present and live mindfully.

Follow Pul on Instagram via @mightypui