Not only do we need to hear from non-smokers but more importantly we need smokers and reformed smokers to come forward and tell their stories, so they do not feel so isolated.
My name is Virginia. I was a nurse before staying home to raise my four children with my husband. I am now a grandmother to our five-month-old granddaughter.
There is a history of lung disease in my family. My mother has a complex history, having bronchiectasis from the age of 16 years. She has asthma, pseudomonas colonised, ABP aspergillus and aspergillus colonised. My grandmother died of lung cancer at 70 and my uncle from lung cancer at the age of 50.
I grew up in a time when smoking was fashionable. Everyone smoked in their homes, so for the first eighteen years of my life I was a passive smoker! I became a smoker when I started nursing. In 2012 and after a number of attempts my gift to myself, on my 46th Birthday, was the first day of a new life without cigarettes. I developed an irritating cough and some breathlessness.
I went to my doctor on a number of occasions concerned and was told I had developed asthma and needed a Ventolin puffer.
I was told I didn’t need a chest x-ray. Finally, in 2015 I demanded an x-ray which showed a tumour in my (R) upper lobe. Biopsy confirmed Adenocarcinoma. My symptoms were a persistent cough and it could be quite irritating at night. I began to become breathless walking, particularly upstairs. When I spoke on the phone my voice became hoarse. I would start coughing and would have to have a drink of water or use my Ventolin. I had also been experiencing some mild shoulder blade pain.
I don’t know how to explain the horrific emotions and physical shock to my state of mind and body when I was diagnosed. It was like my whole body was literally shaking and twitching uncontrollably and it would not shut off. At first, I completely withdrew from everyone as I needed time to process it all. Telling our children was one of the hardest things I have ever had to do. I felt as though I had let them all down because I had been a smoker in the past and hadn’t acted earlier on my intuition. I was told that the cancer I had was more common in non-smokers.
There is great stigma surrounding lung cancer due to its association with smoking. There is little empathy, compassion and understanding and many believe we deserve it. Lung cancer doesn’t discriminate, and neither should we.
When I was diagnosed there were a couple of people who said, “but you were a smoker…so?”. It made me feel sick and angry at their insensitivity and lack of empathy. From these very conversations I shut down and completely blocked people out.
One person in particular who didn’t know I had lung cancer made a comment about someone she knew who had cancer and had never smoked. She said, “it should be those who bloody smoke that have cancer instead”. This horrified me, and I felt those type of comments weakened me, and I needed to be positive and strong. I really couldn’t physically or mentally cope with people’s reactions or emotions. Mindfulness played a big part in my surgery and recovery.
I had a (R) upper lobectomy on 10 June 2015 with no other treatment. Now in November 2018, I am three and a half years cancer free. Post operatively I was hypersensitive to smells especially from cars, spray deodorants and other smells. I became super aware of my lungs and my heart beating and breathing, which caused a great deal of anxiety. When walking up hills I hyperventilated a couple of times but once I learnt to control my breathing it improved. My biggest obstacle was the change in symptoms to my anxiety.
Everything happened so quickly for me – from the time of diagnosis to my operation – that I developed post-traumatic stress disorder. The symptoms were not just mental, they became very physical.
I tried for two and a half years to overcome all this with meditation and mindfulness however it just wasn’t working, so I went on anti-anxiety medication. It has helped a lot and I am positive that I will eventually be able to come off them.
It would be so great to see more funding, support and community awareness. As anyone can get lung cancer, I feel that not only do we need to hear from non-smokers but more importantly we need smokers and reformed smokers to come forward and tell their stories, so they do not feel so isolated. For this very reason I spoke at my high tea fundraiser from a smoker’s point of view – myself.
There was still that fear of judgement, but I faced that fear and spoke.
We need to change the attitudes towards lung cancer and improve the survival outcome. Early detection is so important. Let’s help break that stigma! I want to bring awareness and help improve outcomes for all Australians who are diagnosed with lung cancer.