I remember being asked, a few weeks in, what I was spending my time doing when I wasn’t with him at the hospital. The honest answer was: not very much.

If I was at home, I would wake up in a panic, covered in sweat. I would pace up and down until I received the first update of the day about how the night had gone. Then I would sit by the phone waiting for the update following the first ward round. 

There was so much information to process, and the updates were rarely reassuring. But I needed all the information. However bad things were, it was much better to know exactly what was happening than to imagine. I found not knowing almost unbearable.

It was much easier to be there with him, where I could monitor every change in real time, and felt able to help.

But there was still the anxiety that comes with waiting. Waiting for new numbers, waiting for pain relief, waiting in an empty bedspace for a surgeon to come to tell me how a procedure had gone. 

For much of the last 2 years, his situation has occupied most of my thoughts. Everything else that used to feel important has seemed trivial by comparison. 

I’ve neglected friendships and relationships. My work became difficult to care about in the same way. I know that I can’t have been very good company. 

The effect was physical on me too. I lost more than two stone in weight, which prompted an unhelpful and unnecessary health scare of my own. 

Now, the urgency of the crisis has eased, but it is still the main thing I’m thinking about and worrying about every day.