Years ago I remember being shocked to learn that half of what the NHS spent on a typical patient was spent in the last six months of their life. There are obvious reasons for this. Expensive operations, a spectrum of medications and often prolonged hospital stays. When the stakes are literally life and death it is hard to even think about challenging advice for specialist doctors and consultants. However if you want to take charge of your health and your dying this is what you have to be willing to do.

Much of what I write below was discovered over a period of about nine months – in the beginning I knew very little about what I was being prescribed or why. I will describe the discovery process in the account.

My lung cancer was diagnosed when I had a CTC scan to determine whether my heart arteries were partially blocked. The heart condition was the most urgent because it was immediately life threatening. The scan showed that my arteries were indeed partially blocked. I could choose between strong medication or having stents inserted to resolve the issue. I chose stents because I anticipated that I might need procedures, even an operation, to deal with my lung cancer. I reasoned that the stents would hold the artery open during an operation whereas the medications were simply relieving the symptoms of the partial blockage. The cardiologists knew I may have lung procedures, so they used “special stents” that facilitated this.

Stents are mechanical devices that hold a section of an artery open. However because they are foreign bodies there is a chance that their presence could initiate a blood clot. A clot in the major artery supplying the heart would be fatal. To avoid this patients with stents are prescribed specific drugs. The first is aspirin, which thins the blood. The second is an anti-platelet medication that reduces the propensity to form clots. And yes, when taking an anti-platelet medication cuts take longer to heal because the blood does not clot so quickly or well.

I needed to have a biopsy to find out what type of cancer I had in my lung. There was a risk that the biopsy may cause internal bleeding. So this bleeding was not fatal I had to cease taking the anti-platelet drug for 7 days prior to the procedure. The “special stents” made it relatively safe for me to stop the medication for 7 days. I actually needed three different biopsies to find out exactly what type of cancer I had (this is explained in Stages ). Each time I ceased taking the anti-platelet drug I noticed that I felt a lot better. My coughing subsided and I was much less breathless.

In March 2024 I was regularly going without the anti-platelet medication and suddenly the heart symptoms became a lot worse. I thought I had made myself ill. The cardiologist found that the artery had started to block ahead of where the stents had been inserted – and assured me that this was perfectly normal. So I had another stent inserted. I asked for a different anti-platelet medication, hoping it would be better. It turned out to be worse. After a month on the new drug I started coughing up blood and my breathlessness became severe. I had a lung test that showed it was not due to a loss of lung capacity. So I started taking time off the new medication – aware that I was incurring a risk. Eva and I decided that the quality of life off the drug was worth the risk – even though we didn’t know what the risk was. I spoke to my GP who was very supportive and said “Look you need to research this. Find out what stents you are taking and find out the risk.”

So now with the aid of Google and PubMed ( a source of many medical publications) I began to search. I Googled “special stents” and found out that they were stents that gave out a drug as the blood flowed through them that inhibited clot formation. They were referred to as “drug eluding stents”. Next I found out that the anti-platelet medication, combined with aspirin, was called “Dual Anti Platelet Therapy” or DAPT for short. Finally I learnt that rather than stents, medical literature referred to “Percutaneous Coronary Intervention” or PCI for short. It took me few weeks to learn this language and understand what it was all about. But finally I was able to search for a paper with the title “Duration of DAPM following PCI with drug eluding stents”. The result was striking.

The first thing I discovered was that the chance of death by ceasing DAPT was very small – less than 1%. This was already an acceptable risk given the dramatic change in my quality of life by stopping it. But I also found that for a very large sample (more than 11000 people) who had stents fitted, the chance of death was only increased when the DAPT was stopped within 30 days of the stent operation. If the cessation was after 90 days there were fewer deaths in those who stopped DAPT than those who continued with it. The conclusion was that “DAPT discontinuation beyond 90 days appeared safe”. (the publication is at https://pubmed.ncbi.nlm.nih.gov/25940520/ )

I cannot tell you how overjoyed I was. I found this result 91 days after my last stent operation and have not had DAPT since. And the quality of my life since then has been far better than the previous year. I cough much less, I no longer cough up blood, my breathlessness is becoming worse, but is still better than when I was on DAPT.

The conclusion is obvious. If you notice a serious negative side effect from a prescribed drug, quiz whoever prescribed it, and your GP, to find out what alternatives (if any) are available. And if that fails do your own research to discover the risk you run by not taking it.