Where the wind blows…

The day after my diagnosis discussion with Mr. P, I was driven over to Reading for a meeting with Dr. D to discuss the ‘radical’ chemo/radiotherapy that he has described as the way forward for me now. I realized for the first time since this had all kicked off that I was frightened - frightened of the treatment rather than just frightened of the illness / death. As a young child I can only remember two main fears; firstly a fear of skeletons. I can clearly pinpoint how that happened. I was watching a black and white ‘Saturday Matinée’ on telly when two kids were burying a dead pet rabbit. As they wept at the grave a huge human skeleton reared up out of the earth at them and it absolutely scared the shit out of me. I was very young - too young to remember what the film was about (although I would love to watch it again!) and too young to remember the title. I’ve always attributed my lifelong love of horror films to that film, it had a big impact! The second fear was of being in a nuclear war, more specifically of being a victim of the radiation fall out in a nuclear winter. Like many around my age, my childhood was during the end stages of the Cold War, and there was still a palpable feeling within our whole society that is was something that could actually happen. I was brought up watching things like the animated classic ‘where the wind blows’ (a terrifying story of a nightmare fall-out world) and being played mock-up radio broadcasts at school which dramatised the ‘3 minute warning’. I remember one time at Secondary school. The teacher put on a recording like this without telling the class it wasn’t real. He then asked us all what we wanted to do. Half the class had a nervous breakdown and other teachers had to be called to comfort everyone! I can remember desperately trying to work out if I could get home to my Mum in 3 minutes or not. I suspect the Teacher involved probably filed that idea under ‘needs more thought!’ (Great line Paul, thanks!). I digress though, the point is, that radiation and it’s truly dread inducing effects and the unknown mystery surrounding it was a fear that, unlike the skeletons, had stayed me. Radiation means to burn. To mutate cells. To corrupt the flesh. Radiation is unclean and cannot be cleaned away. Unchallenged, it was a fear comfortably entwined with the very DNA of my whole emotional make up. Whilst it hadn’t made its presence felt in years, finally now was it’s time to blossom and reveal itself. Now, I was going to have to get inside a nuclear war machine and have fall-out deliberately blasted into the centre of my brain! Fucking brilliant I thought. Absolutely fucking brilliant! Going to Reading for the treatment was odd as well. Reading was one of my stomping grounds from around my early twenties, and I’ve had much glorious and debauched fun there over the years. The irony wasn’t lost on me. The truth was that I had likely killed many brain cells in Reading, a long time before they wheeled me out the x-ray cannon, or whatever the fuck it was they were going to put me in this time around. On arrival at the cheerfully named ‘Berkshire Cancer Centre’ we didn’t have long to wait before I found myself in front on Dr. D and an oncology nurse who was a stand-in for my assigned specialist nurse, who was in turn on holiday that day. I liked Dr. D. She was a completely different animal to the other worldly Mr. P from Oxford and presented a much more down to earth persona which was less awe-inspiring, but easier to relate to. She had cool trick of being able to simultaneously project three different personality facets at the same time which I found really endearing and fascinating. All through this experience I keep drawing parallels between the way I’ve been ‘managed’ through my illness to the management techniques used in the corporate world in which I work(ed). I’ve seen a similar feats pulled off in the working environment loads of times, but previously only with two different perspectives, usually obviously coupled. A good example would be a manager having to give out some bad news to a team so then presenting simultaneously a serious / corporate front but hinting at a secret slightly anarchic undertone to make the team feel that he is actually on ‘their side’ underneath. It’s all done to manage emotions through a difficult but needed transition. Dr. D though was the first person I’d seen pull of the same thing with 3 quite different behaviours though. What I got was 1) Deadly professional, knowledgeable and medically capable, 2) Maternal (in a reassuring way) and 3) a secretive ‘mocking’ towards the cancer, like we were part of a special club that were able to laugh about it behind it’s back. This was all done in a way that didn’t feel at all patronising. Like I say, it was a cool trick. The only thing I didn’t like about her was the same as all the other medical people I’d met through this journey. They all started by stating defeat before they’d even started. All I wanted was to hear someone say “we’re going to fight this fucker so don’t give up quite yet!”, but it just wasn’t forthcoming. She started by asking me to tell my story from the beginning and the discussion went from there. We were talking for about 2 hours in the end. It was a ‘good’ meeting, in that I got everything I needed from it and walked out fully understanding what I was about to go through. It was though, about as scary as any I’d experienced up to that point. It did nothing except confirm the validity of the fear about the radiation I’d been considering on the way to the hospital. The chemo would be tough, but the radiation would be tougher. Six weeks of treatment but 3 months(!) to recover. Hair loss. Sickness. Compromised immune system. Extreme fatigue. Return of pre-surgery symptoms, in particular seizures and speech difficulties. Inability to focus and think, Change of personality. Inability to relate to those caring for you. The list went on and on, each potential symptom seemingly worse than the last. That didn’t include some more horrendous potential long term impacts which was all but dismissed on the basis that I’d likely be dead by then anyway. It sounded absolutely fucking horrible. When she had finished I said to her, almost incredulous; “look, I’m done the maths on the average survival time for those who don’t vs. those that do have the treatment. If you write off the 3 months you describe during and post treatment where I’ll essentially have no real standard of living, why does anyone bother? It’s like basically about another 3 - 4 months potential quality time?” She gave me quite a detailed answer, describing all the potential factors that might influence the total survival time against the averages that are quoted. It’s easier to summarise as follows; you make the investment in the treatment now for two main reasons. Firstly, you do in the hope that you get back more time that you invest and therefore make the difficulty of the treatment worthwhile. Secondly, it’s the only option you’ve got, literally. It’s either give the treatment a go, or give up now and await the inevitable. I’ve got to admit, fear or no fear, it was certainly a compelling argument to consider. Go here to the start of the journey. Go here for next blog entry. Go here to view previous blog entry.