In 2010, after 35 years of puffing away, Wendy finally managed to quit smoking. Wendy’s mother died of lung cancer when she was 47, and she rarely smoked, so Wendy knew she was high risk of the disease.
In May of 2016, I asked my general practitioner (GP) to send me for a chest x ray. I thought this would be accurate. He told me the results were clear.
I noticed I was getting very light headed when standing after sitting down a while. I had been thinking I should mention it to my GP, when I fainted in my office at work, causing a nose bleed.
The following week, my GP sent me for an MRI of my brain. I was looking at the scans on the train home, and in a few of the scans I could see a large white patch. Wow, that shouldn’t be there, but what do I know?
The MRI showed three malignant metastatic brain tumours, and my GP booked me to see a neurosurgeon two days later. I was in deep shock, a strong sense of unreality.
From that day on, I couldn’t possibly work – my job was to focus on others as a Mental Health Peer Support Worker. I couldn’t even think straight. The following week, the primary cancer was found in my lungs. It was also in the lymph nodes in my chest, one tumour in my neck, and one on my adrenal gland. 10 days later I was on the operating table to remove the largest one – they sure didn’t muck around.
After the surgery, my medical oncologist said my remaining cancer was incurable and inoperable. Treatment would be to relieve symptoms and try to prolong life. I was shocked and in denial for two months.
I began treatment – first radiotherapy, then chemotherapy. I was fortunate to experience minimal side effects from the chemotherapy and for five months, the tumours didn’t grow. I was lucky enough to qualify for a clinical trial of an immunotherapy drug.
I kept pushing the whole dying thing to the back of my mind, but I was profoundly affected. I wasn’t sad – if a friend had tears in her eyes, I felt baffled. What I did experience was upset, wound up, irritable, intolerant of kids, angry on the phone, sometimes frightened.
I had good support from a small group including my siblings. It was so nice, and so different to when I was mentally ill and left alone. Apparently, cancer is acceptable.
Early in 2017 the tumours started to grow again, slowly and steadily.
My breathing was bad. When I walked on the street, especially up an incline, I’d get really puffed and have to sit down. I felt I was straining both my heart and lungs. Still, I didn’t know if I’d been on the immunotherapy drug. I had three cats at home, and was very worried about them. Luckily a good friend offered them a home. It was very hard to re-home my cats, and one had to return three months later. I was happy to have him back.
In June of 2017, I had a swollen face and neck. My GP thought it was an allergy and said to buy anti histamines. For some unknown reason, I saw a different GP the next week and he suspected a venous occlusion. A CT scan confirmed it and with radiotherapy, the swelling slowly went down.
Shortly after, I found out I had been receiving the placebo during the trial but was then placed on the immunotherapy drug. My platelets in my blood went from 40 to about 176 in the first two weeks. I was delighted and so relieved, and feeling optimistic.
Around that time, I hired a companion – the isolation was driving me nuts. When Sandra first turned up, I was using a walking stick for balance. She did all my shopping as I’d get way too puffed. Just walking beside her to the shop and back, I’d have to rest in the gutter. Sandra would sit with me, she was great.
As time went on, I was feeling better and better. I put my walking stick away.
Finally, I had a CT scan to see if the immunotherapy was working. I wasn’t anxious, but I was just blank. The registrar saw me, and she talked of amazing figures of shrinkage – the large lung tumour had been 4.5cm, now it was 2.6. All the tumours had similar shrinkage, some by two-thirds.
There had been nodules in my lungs, which had now disappeared. No lesions in my brain.
Apparently there had been a blood clot in the main vein in my chest, it was nearly all gone.
I was thrilled, but the news was going to take time to sink in. After all, I’d been preparing for death for a year. To celebrate the good news, I took off my medical emergency bracelet.
Since then, I continued to feel better and more able to do things. I get waves of happiness, but the strongest emotion is profound relief. I walk a lot easier, don’t get puffed so easily. I am doing at least half my housework. The first time I cleaned my bathroom, it was very exciting as I hadn’t done it for 14 months.
Sandra still visits.
After 14 months of wearing trackie pants and t-shirts, I wore a nice dress to visit my old work colleagues. I even put on some make up. The staff were so happy for me, and we had a great time celebrating my miracle turnaround.
Sharing your personal experience with lung disease is a compelling and inspiring way for others to learn about and cope with their diagnosis. Your story may also encourage people to identify and act on symptoms they are experiencing, which may otherwise have been ignored.