Addenbrooke’s Hospital, Cambridge

30th of December 2021

(4 minute read)

I’m sitting in the waiting room of our local hospital with my girlfriend Liesbeth next to me. We talk quietly, wondering what awaits us inside the respiratory consultant’s room. I have my laptop with me – one of the start-ups where I am on the board as an investor director is going through a rocky time and needs my support. Liesbeth, always more ‘in the moment’ than me, is looking around at the other people waiting – what could be wrong with them? – at the receptionist behind her plastic screen checking people in, the pin board on the wall, already decorated with some tinsel. I look through some figures and check in by email with the CEO of the start-up in choppy waters.

The previous three weeks had been, by turns, confusing and frightening as we moved back and forth between appointments with a GP and various neurologists, and now we are waiting for the big reveal. We are waiting to find out the results of my latest test and we have absolutely no idea what to expect.

From about October, I had started to notice problems with my balance, which I had mentioned to my GP when I was there for something else. He did some tests and said I should see a neurologist, sooner rather than later. He made some phone calls and managed to find a neurologist in our local private hospital who could fit me in just a few days later. Looking back, his sense of urgency should have worried me, but I hadn’t grasped how seriously he was taking the situation.

When I went to see the neurologist, he did further tests and then told me he was flummoxed. Flummoxed. A strange word for a highly-trained and experienced neurologist to use, direct but not exactly encouraging. Still, we didn’t panic. He said I needed an MRI scan and they could fit me in on Friday, a week or so before Christmas.

Around seven o’clock on the evening of that scan, Liesbeth and I were just about to go out when the phone rang. It was the neurologist, who asked me if I had someone with me. He went on to tell me I had four tumours in my brain, the largest of which measured 17 mm across and was pressing on my cerebellum, causing the balance problem. We were completely stunned. All the pieces from the previous week very quickly fell into place as we realised how the GP and the neurologists had been protecting me while trying to get a quick diagnosis, a diagnosis that they had clearly foreseen and feared all along.

The scales fell well and truly from our eyes at that moment, as we stood in the kitchen with our coats on, while he went on to explain gently that they thought these tumours in the brain were secondary tumours. He wanted me to start taking steroids straightaway, in order to buy some time until they could find the primary cancer. What did this mean? What would lie ahead of me now? All I thought was: my life is in danger and, meanwhile, my quality of life will be heavily compromised. What can be done? What can I do?

The phone call ended, and we were left trying to digest everything he had said. What would they find? How would we tell my children what was happening? When would the GP get the steroid prescription to us? Where could we get hold of a pharmacy over the weekend? Are we still going out this evening?

At the same time, we didn’t panic. Instead, we became very practical, started to look up where we could get the much-needed steroids and try to understand what these tumours could mean. I also did what everyone around me and my own common sense told me not to do - I started to google. I am not good with uncertainty, and I was trying to find out as much as possible.

We went into Christmas in a daze. My next appointment was scheduled for the 30th of December and so I was looking at a very long week of waiting. I spent some time with my son Alan and his wife’s family in a house full of children and dogs and great food, which was a good distraction.

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So here we are, on the eve of New Year’s Eve, in the waiting room at our hospital. This is the moment we have been waiting for all week. Facts, information, answers of some sort. I trained as a computer scientist in the early days of computing, and data are my stock in trade. The first company I ever founded, and which has been the source of so much of the knowledge and experience that I now share, lecture and publish on all over the world, is based around data. Now I was going to be given some of the most important data I would ever receive about the state of my body.

When we go in and sit down, the specialist explains he will talk us through the CT scan results and then discuss options. We are seated in such a way that we can see the screen for ourselves. The first screen shows a shadow on the right lung. Long thin arms are streaking out from that tumour to other bits of my lung. Then he pulls up the next screen. “This is a shadow on the liver - can you see over here?” We could. Then he pulls up the next screen. “There are also tumours in your ribs, this white area here.” Another screen. “I’m afraid we have also found these.” He points at an adrenal gland, which clearly shows the same ugly shadow. Then the next screen comes up. “These are the lymph nodes, there are some tumours there.” By this time, we are reduced to stunned silence. What we are seeing is my upper body positively riddled with tumours. So many, in so many places. Stage IV lung cancer, which means it is very advanced.

How can anyone survive this for long? I am shell-shocked. As I sit there, reeling, the consultant continues to talk, as clearly and as kindly as he can, but I struggle to take in what he is saying.

We leave the room in shock. The cancer nurse takes us to another room, offering to make cups of tea and answer any more questions, but really, we just want to leave, to be by ourselves and try to digest what has just happened – and, more importantly, decide what we are going to do with that information. It has been only thirteen days since the preliminary diagnosis. It feels like a lifetime.