Not long after I was first admitted to hospital, a friend gave me a black notebook and pen. ‘What will I do with that?’ I thought. I was never one for keeping a diary and everything now was typed up on a PC, tablet or phone – was it not? I could not walk, I had been told that I had a tumour in as central a point in my brain as you could get, and I was dealing with all the emotions that this sort of news would bring anyone in that situation. Asking myself, how do I tell my children? Will I get better? Will I walk again? Will I work again? Will I get out of hospital? Along with what felt like thousands of other questions.
I felt I had to be positive and that being positive would help my recovery. I decided diagnosis day, 21st August 2017, would be Day 1 and from then on, I would focus on my recovery. My aim would be to have more good days than bad days. But the next day, I was told that I also had a tumour in my lung. I was not doing well; I had been through just 2 days and both were bad, so I was already down on my aim!
I needed to measure my good days or bad days – and staring at me as a tool to help with that was my black notebook. I must admit, I cheated with my first notes – I changed the 21st of August to Day 0 and the 22nd (the day I was told I had lung cancer) to Day 1. Day 1 was meant to be my low point, I remember telling my wife, so I could not have Day 2 as lower than Day 1!
I used my notebook to record, two pages for each day. In it I wrote how my symptoms were, along with what my emotions were. My main symptoms were difficulty in walking, coordination and handwriting. Initially, my walking got worse – as did my handwriting – but my co-ordination was starting to get better.
Writing about my emotions helped me reflect on what had happened each day, making it easier to come to terms with what I was going through. My initial reaction of ‘how on earth did I get lung cancer?’ evolved to ‘I have lung cancer – get on with it’. Writing about what happened reminded me of what I needed to be thinking about for the next day and let me track my improvements over time. I also started from the back of the book. I was worried that if I started at the front, I would get to the end and that would be the end of me! I felt that if I started at the back of the book, I would not get to the end. This was another small step in improving my emotional wellbeing at a time when every small step counted.
If I was going through all of this again, I would start a journal again, logging symptoms and their changes, using it to help clarify my thoughts and, more practically, to tell the medical professionals of the improvements or worsening of my symptoms.