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When I look back, I would never have thought that I would be writing this blog almost ten years later, still living a very active lifestyle at 72 years of age.

An unforgettable start, because the morning following my diagnosis was my wife’s 60th birthday and the start of a planned long weekend of family celebrations, but I was still in hospital!

After being given the diagnosis, my wife and I both sat there in disbelief, trying to comprehend how I could have lung cancer. I had never smoked, and I had been going to a gym two to three times a week for an hour workout followed by 30 minutes of lane swimming. I had no symptoms, so how could it be that I had lung cancer?

Little did we know that we were at the start of a rollercoaster journey. Over the past 9 and a half years we have had a few setbacks but have remained resilient and positive, largely due to being able to live an ordinary lifestyle for 95% of the time. 

Click here to learn more about the challenges Paul has faced and how he has overcome them
Diagram titled "Challenges Paul has faced" branching into three categories. Brain metastases: Around two years after his diagnosis, Paul was told his cancer had spread to his brain (brain metastases). Fortunately, he has not had any symptoms because of this. Paul's biggest challenge from this has been having to surrender his driving licence. He has had to do this twice. Once when the brain metastases were diagnosed and five years later when they progressed. The first time around, it was a big shock to the system. This meant that he could not continue with his number one hobby of driving his track prepared sports car at organised track days. He immediately spoke with the DVLA (Driver and Vehicle Licensing Agency) who initially told him that he couldn't drive for 2 years, but eventually they relaxed this to one year. The second time he had to surrender his licence, Paul decided that he couldn't put his wife through 12 months of driving him around. So, he purchased an e-Bike and realised that he could cope with 25 mile trips on it. Negative experience with healthcare professionals: After a reaction to a new targeted therapy, Paul had an overnight stay in hospital. It was just after being admitted that he encountered a situation with a healthcare professional. After looking at his notes, the first thing he said to Paul and his wife was, "Has anyone talked to you about end-of-life care?", to which they responded, "No, why?" He then told Paul that, since he had lung cancer, he must be given a 'Do Not Resuscitate Order' (DNR) as he wouldn't cope with CPR. This left Paul and his wife stunned. He wrote out the order and gave it to Paul. On discharge, Paul immediately made a formal complaint, and eventually a hearing for the complaint was arranged where it was determined that the healthcare professional was wrong to give Paul a DNR order, and it was removed from his medical records. Travel insurance: Paul has often faced challenges when it comes to booking travel insurance. He has found that there is often a lack of understanding around different types of cancer, with premiums that he does not believe reflect how well managed a cancer diagnosis can be. To help navigate this, Paul now looks to book options that can be cancelled wherever possible and often chooses to organise holidays independently rather than booking package deals.

What do you wish more people understood about living with ALK-positive lung cancer or cancer in general? 

I wish that more people understood that there are different forms of lung cancer and that not everyone who has lung cancer has been a smoker. This can be particularly true within the NHS where I have encountered numerous times nurses asking me, “Have you now given up smoking?”.

Paul stood in front of an ice rink

 

My message to those who are newly diagnosed with ALK-positive lung cancer

My message is do not give up hope, and do not, under any circumstances, try looking at what the internet has to say. Once you are over the initial shock, try to seek out and join the support groups. You will find a multitude of people like yourself, with plenty of stories that will give you hope. When I started out 9 and a half years ago, there was no support like there is now. If there had been, I would have been much more informed and relaxed than I was.

Another piece of advice that I would give is to try to form a good relationship with your oncologist. Your oncologist should be one of your new friends, and, hopefully, they will be open and approachable, so make sure that you talk openly with them.

Finally, make sure that you learn as much as you can about the cancer. Do not be afraid to ask lots of questions.

 

The stories shared on this website are personal experiences, written in the patients’ own words. They reflect individual journeys and should not be considered medical advice or representative of all patient experiences.

Any images featured have been shared by the individuals themselves and are used with their explicit permission.