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Tom's lung cancer story

My lung cancer experience


My name is Tom, I am 45 and a non-smoker. I have inoperable stage IV adenocarcinoma lung cancer. In July 2014 I was given an initial prognosis of surviving up to 12 months. What follows is my cancer experience:


Phase 1: Frustration

I had been suffering with niggly problems such as tiredness but – after several visits to my doctor, an X-ray that showed up nothing and pain medications that did not work – I was advised that it may be psychosomatic. Then, I got very breathless and was diagnosed with asthma. At work one day I could not breathe and went to the accident and emergency department that afternoon.

Phase 2: Relief

A pleural effusion was diagnosed and I felt relief that I had been right – I knew that I was ill! But now, although I did not know it, the cancer journey had really begun. I was kept in hospital for a week and doctors started preparing me for the worst – my symptoms were indicative of cancer that has spread. Oh dear, it sucks to be right.

Phase 3: Scared

I meet my surgeon – a lovely man – along with a Macmillan cancer nurse, and they give me the news that I have lung cancer, and that the type I have means my prognosis is less than 12 months and inoperable.

Phase 4: Information overload

It is a long, tiring 4 weeks (or one twelfth of my expected lifespan left!) before the biopsy results will be back. While I wait, I read every single negative thing on the internet about lung cancer and now think that 12 months might have been optimistic. When you don’t know what you have got, you look at the worst, and hope for the best. I spent a month worrying about work, family and money.

Phase 5: I know what I am fighting

Biopsies are back – is it good news? No, I have still got inoperable cancer, but I have a genetic mutation that works well with a drug which may pause the cancer’s progress.

Over the next 6 months, we find it is working. In spite of feeling aches and being tired, I am in better condition than the previous 2 years.

Phase 6: Staying positive and living with uncertainty
I am now learning to live with cancer. I know what information to look for about my particular cancer and am able to weed out the inaccurate scary, information and keep up-to-date.

I have also started seeking out positive stories on Inspire and have started to take things easier at work. I am ill, so working at 100% is silly. 

The only negative is that I am at the mercy of my great oncologist and the health system for what's next when my current medication is no longer effective. But that is a while off, isn't it?

Written in June 2015