“I have become more reflective on life and have hope and trust in the people who research, study, treat and support those of us living with lung cancer.”
My name is Frances. My main role over the years has been as a wife and mother to my four children and now a grandmother to five grand-children. I have worked part-time on and off, as a pathology courier, cleaner and in marketing. I am retired now and widowed, so family means a lot to me.
In 2012, my husband, Paul, passed away from lung cancer, Adenocarcinoma Non-Small Cell Lung Cancer (NSCLC) Stage III. He was diagnosed 10 months prior, but after surgery and chemotherapy was unsuccessful, he lost his battle. He was 58 years of age and, like me, was a never-smoker.
I suffered with chronic asthma all my life. Growing up in the days before Ventolin was introduced, I suffered badly. I was first prescribed Ventolin by the general practitioner (GP) in my mid-twenties, and it made such a big difference to my life.
In November 2016, aged 65, I was diagnosed with Stage 4 Adenocarcinoma NSCLC lung cancer EGFR L858R with metastases to my bones. I have never smoked. It was a year when I was not feeling as well as usual. I had quite a scary episode in April which my GP put down to kidney stones. A couple of months later I was feeling breathless and coughing, and my GP treated me for asthma.
But the breathlessness and coughing returned and then I started vomiting. Again, the GP treated me for asthma. I was not improving, even with steroids, when a chest x-ray reported pneumonia.
Eventually a CT scan showed two suspicious masses, one in each lung. Further tests, including a bronchoscopy and a needle core lung biopsy showed lung cancer, and a PET scan showed bone metastases. One mass in the top right lung was a tumour while the mass in the lower left lung was a mass of muck which had to be cleared by medication over time.
I was really shocked and could not believe that this disease had got both Paul and me. I worried about my children’s chances of getting lung cancer too, growing up in the same house and environment as my husband and I. Everybody, including the Oncologist, Respiratory Physician, other doctors and nurses, were shocked and surprised that both husband and wife suffered the same cancer, but nobody could explain it to me. I kept thinking that this must be a big mistake but it has turned out not so. I was numb at first that this cancer had reared its ugly head again, and then anger and disbelief and grief all at once. My family found it hard to believe and to cope with again, and grieved too.
I just wanted to have surgery and take the tumour out and then be better.
When the Oncologist showed me the spread to the bone on the PET scan, I knew things were grave. I had tests for mutations and started on targeted therapy which helped me feel a lot better. But after 7 months is showed signs of not working so well. After some complications, a blood biopsy confirmed another mutation and I was prescribed another targeted therapy on compassionate grounds. I began to improve and feel much better again – breathing better, standing straighter, and able to do more things again. In November 2018, I have been on the treatment for 10 months now and going well.
I believe there is stigma attached to lung cancer and lung disease. Whenever I talked to anyone outside of family about Paul’s lung cancer, I felt one of the first things I had to say was that he never smoked. They would assume he had done something in his life to start this off. The same occurred when I told people about my lung cancer, and I questioned to myself whether they believed me.
Lung cancer impacts my day-to-day life and it’s rarely not on my mind. I used to be quite physically active but this has changed my life somewhat. Although I feel quite well now under this new drug, I still have some breathlessness and tiredness and down times. I manage these by pacing myself and keeping occupied each day. There are a lot of other side effects that impact on day-to-day life too. I have become more reflective on life and have hope and trust in the people who research, study, treat and support those of us living with lung cancer.
Increased community awareness is needed to educate people about the effects of lung disease, break the stigma, and increase public donations for research and support for patients and their families.
Early detection should be a top priority for research. A diagnosis at an advanced stage is much too late. It may be inoperable, incurable and terminal, and that leaves the patient and their family feeling devastated, hopeless and lost. If diagnosed in the early stages, the chances of a good outcome and a return to normal life are much better.
Lung Foundation Australia has been supportive, informative and important to me throughout my journey. I received help to understand my diagnosis and its mutations, speak for myself at doctor’s appointments, and learned about new breakthroughs and research from other patients. Listening to their stories and journeys at support groups helps me feel acknowledged and not alone. The staff work so hard to keep us informed and supported through webinars and seminars and events. They are so friendly and welcoming.