My name is Jeanette and I have advanced lung cancer.
My story starts like many others diagnosed with lung cancer, it was discovered by chance. It was autumn 2012, I had just turned 49 years old and I had started training for a half marathon with my personal trainer.
I was reasonably fit and otherwise healthy, but on that day I knew something wasn’t right. Interval training exercises I typically didn’t struggle to complete, left me out of breath and physically drained.
Knowing something wasn’t quite right, I went to see my GP the next day, who initially thought I might have had blood clots in my lungs and promptly sent me in for a chest x-ray and blood tests. I was cleared of blood clots but the x-ray revealed scarring on my lung, resulting in my GP questioning whether I had Tuberculosis, an infection, or scarring from a past episode of pneumonia.
Following this initial evaluation, I was referred to a respiratory physician who started me on a course of antibiotics and embarked on a month of tests including CT scans, bronchoscopy and a PET scan. It didn’t become apparent that there was a solid mass on my right lung until a second CT scan revealed a mass amongst the scar tissue – confirming that I had lung cancer.
The start of my treatment journey
I was first referred to a brilliant surgeon who performed my surgery by video-assisted thoracoscopic surgery (VATS). After a month recovery post-surgery, I commenced three months of chemotherapy to essentially mop up any stray cancer cells. I found the chemotherapy treatment tough – both physically and mentally. I know that everyone is unique in their experience of treatment and for me, the fatigue and nausea was so debilitating that it meant I was reliant on others to care for me.
I wasn’t prepared for the mental hurdles and there were days when I felt so ill, that I couldn’t get off the couch – I just wanted to stop the gruelling treatment regimen. I had to really dig deep within myself to find my strength and remind myself not to accept defeat; many people have undergone this treatment and come through the other side. I believed I could too. In my mind I thought “it’s only three months and then I get my life back”. Thinking back to that period, the chemotherapy has been the toughest battle I have ever had to face in my lifetime.
On a positive note, I did come out the other side of the chemotherapy. I recovered relatively well and returned to work in 2013. Unfortunately, by November that year, I developed a cough while on holiday.
I was swiftly booked in for a CT scan and I nervously awaited the results. I got the phone call at work the next day and received the news I didn’t want to hear – the cancer had returned. This time I was told it was incurable and I was looking at a median life expectancy of 8 months. This news devastated me. While I heard those words, the reality of them felt surreal. I felt like my entire life was disintegrating around me and it was out of my control – cancer had won the battle and I was expected to surrender.
My support system
The cancer journey would be impossible without a supportive group of friends and family to lift you up during the most difficult times. I have two beautiful, loving and caring daughters.
At the time my cancer returned, my eldest daughter Sarah (24 at the time) came with me to the oncologist and prepared herself to hear the prognosis. She did agonise as to whether she should be there as it was hard to hear the news but she decided to.
My other daughter Laura (20 years old at the time) was on holiday in Asia with a group of her good friends, so it took a few days to make contact with her as they were travelling in a remote area. I eventually made contact with her a couple of weeks before Christmas. It was hard for Laura as she was so far away from us here. Laura cut her holiday short and made plans to come home early for Christmas – the last Christmas we thought we would spend together.
In the meantime, I commenced maintenance chemotherapy. The second time around, I didn’t find it as mentally and physically challenging as I had remembered. I had prepared for the worst but I could tolerate this drug better than the first time, but I still had some bad days each cycle.
The Well talk about all things food and whether we can consider it our friend or foe. Post continues below.
In the ensuing months, I made a list of things I needed to do including my legal affairs, simplifying my life and removing whatever stress from all other elements of my life that I could. I had a big clean-out and documented all of my essential details and information in one book so that my girls had all the information they would need in one place at the appropriate time… it actually felt quite satisfying being so organised and living a simpler life!
2014 was also the year I went on a special trip with my sister to Paris. I also had a special trip with my eldest daughter to the Barossa and I did some further mini getaways within Australia and New Zealand. I was really trying to pack as much into life between chemotherapy cycles and that short life expectancy clock ticking away.
I remained on the chemotherapy for 16 months, bypassing the predicted life expectancy but then my body said enough! I developed an allergic response and was no longer able to continue with the treatment.
My cancer physician arranged for a PET scan and then discussed with me the possibility of having my entire right lung removed (pneumonectomy) as it appeared the cancer was contained within that lung and I was otherwise fit and healthy. My surgeon reviewed my scans and agreed to perform the surgery again by VATS in April 2015.
A new hope in immunotherapy treatment
Over the next 14 months, I started on the road to recovery, learning to live with one lung and a “new normal”. I commenced pulmonary rehabilitation twice a week. Over this time, I have slowly built up my fitness – aerobic, physical and emotional strength.
Disappointingly in June this year, a routine CT scan showed that 4 small tumours had appeared in my left lung. My heart sank, it never gets easier hearing that cancer has returned and all those fears and uncertainties all bubble to the surface once again.
I was bracing myself for more rounds of chemotherapy but my oncologist recommended an option that is relatively new to advanced non-small cell lung cancer patients – immunotherapy.
He explained how immunotherapy essentially stimulates my body’s own immune system to recognise and fight the cancer. Initially, I was apprehensive about commencing such a new treatment, but I did a lot of reading about it and it really seemed like a ground-breaking approach to fighting cancer.
I started my immunotherapy treatment, nivolumab, 20 weeks ago. I am feeling confident in my treatment and positive about the future. All in all, I am living a better quality of life on immunotherapy and because I feel so well, I am motivated to look after the other key elements of my health such as exercise, diet, my emotional and spiritual wellbeing. My response to the immunotherapy treatment, my refocus on lifestyle changes to improve the quality of my life and my family, have given me the best chance to throw all I have at the cancer.
This treatment offers me tremendous hope – not just for my own cancer journey, but for others living with cancer or who may be diagnosed with cancer in future. Every treatment works differently on each cancer patient, and while immunotherapy has given me improvement, it may not be for everyone. Immunotherapy is showing real promise in the testimonials I have read from other
patients, and while I wish I didn’t have cancer, it’s an exciting time to be part of a new treatment regimen.
It’s time to change the conversation and re-think lung cancer
Before I was diagnosed with lung cancer, I didn’t know of anyone that had it. It seems like an unspoken disease and yet it is Australia’s biggest cancer killer. One in three women diagnosed with lung cancer has never smoked (Lung Foundation Australia, 2016), yet I continually see there is a real stigma associated with lung cancer and its link to smoking.
If you have lungs, you can get lung cancer and every cancer patient deserves equitable access to treatment and care, as well as a supportive community. Given the grim statistics on life expectancy, lung cancer research deserves a greater share of the research dollars to facilitate earlier detection and tolerable treatment options.
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It can be difficult to let your guard down living from one CT scan to the next. The build-up is an emotionally draining time. Waiting for the results, it feels like your life is in limbo and living with this uncertainty can make it hard to make plans for the short and longer term. However, there are some positive aspects to living with advanced cancer. It has strengthened my relationships with family and friends who have been so inspiring and supportive and with me for all the ups and downs on this rollercoaster ride. Initially, the cancer diagnosis hijacked my life – but over time, I have learned to pay attention to my overall holistic wellbeing, connect with nature and just appreciate each day and how precious life is.
I now embrace life’s opportunities and if an opportunity arises and I can and want to do it – then I do it with no hesitation. I now know time is precious. Despite the significant role cancer has played in my life, just weeks ago I celebrated my fourth Christmas
since my incurable cancer diagnosis. I couldn’t really ask for a better gift.