Metastatic Lung Cancer

Gamma Knife Radiosurgery (a precise form of radiotherapy)

Twelfth Night has passed, and 2025 is well and truly here. To tell the truth, I never expected to see it. 

When I had a seizure nearly three years ago, and was told I have metastatic lung cancer, and that life expectancy can be as little as three months, it was hard to believe. There were no symptoms and I was perfectly well. In the autumn we had been walking up mountains in North Wales, and my wife bought an electric bike to keep up with me on our local hills. But no one imagined I would still be here now. 

A relative said that the trouble with these things is that the treatment is often worse than the disease. Too right it is. You go through it in the hope of a cure. 

Perhaps I should have written more. Our late friend Weaver of Grass’s open and honest account of her ageing and illness was helpful as to how these awful things can play themselves through, as was gz’s (“ook?!”) account of her partner, “Pirate”. They give a human and personal perspective beyond the purely medical. I have written a little, but it seemed impossible to write about it as a whole without ending up with something too horrific to post. Every procedure is a gruesome tale. I hope the following is informative and not too insensitive, although this is not all of it. 

Take gamma knife radiosurgery (a very precise form of radiotherapy) in which a metal cage is screwed (yes) into your skull. It holds your head absolutely immobile during treatment. They want you in Leeds at 06.30 to fix it to your head, do an MRI scan, and take measurements to plot the coordinates for treatment. You might then have to sit with the cage on your head until the afternoon, because treatment can take an hour or more per person. They feed you, but there was so little space around the cage I could hardly eat. Poking poached egg and baked beans on toast with your fingers through a small gap into your mouth is very messy.  

Or consider CT-guided lung biopsy. You lie face-down on a CT-scanner while they retreat behind a radiation screen to plot positions. The surgeon then re-enters to take a sample with a tubular needle through your back. I wondered what was the cold liquid in my throat, until I coughed rich red blood out all over the scanner. There was so much of it. You don’t think of blood in your lungs as cold. 

But Top of the Procs (or Ops) has to be chemotherapy. What a foul treatment that is! Just as you begin to feel a bit better, they give you another dose and you cannot believe it possible to feel so sick. Following close at Number 2 is brain surgery. It leaves you so confused you can’t work out how to use the phone or switch on the radio. 

Hardly making it into the charts is lung radiotherapy. Despite dire predictions, there were no adverse effects for me. The most difficult part was the 50-mile round trip to Leeds every day for a month. Very tiring. 

After all that, they said it was incurable. That was two years ago when they referred me to the hospice and issued a bag of controlled narcotics. I wished they would stop coming round and telephoning, a different person every time going over the same questions. “How far can you walk?” “Do you have any problems with bowel movements”? “Can you look after your own personal hygiene?” I was still well. 

The biopsy identified a known tumour mutation, for which there is a targeted drug that blocks its growth. I believe it costs the NHS around £60,000 p.a. (the actual figure is commercially confidential). The tumours became stable, and even shrank. But the side-effects are challenging. The worst is fluid retention. It gives you elephant arms and legs that make it tiring to move around, and your clothes too tight. It collects in and around your lungs, and you become breathless and have difficulty talking. 

Several times in December, I became seriously short of breath and unable to breathe deeply enough to get it back. It took quite an effort not to panic. The usual remedy of taking long deep breaths was impossible. A cold would have finished me off. There was nothing else but to stop the drug. Despite reservations, I stopped completely for ten days and then went on to a half dose until the end of the month. Thankfully it worked. Within a week I was no longer short of breath, tired and grumpy. The dose can probably be reduced again if needed, but there is the danger it allows the tumours back. Some patients develop new mutations. 

Most frustrating of all are the things I am no longer allowed to do: they stop you driving straight away; or cannot do such as walk more than half a mile or so. I also am unable to read fluently because of a blind spot. Thank goodness for text-to-speech. And there are also things it would be silly to try, such as riding my bike, or staying away from the familiar low-risk safety of my home environment. But I can do a bit of gardening, and jobs around the house, and write blog posts, and listen to music, and enjoy a bottle of beer. My contemplative nature means not needing constant activity. As Weaver showed us, you have to make the best of things. Otherwise, you go to bed and don’t get up again.