Over the coming weeks, prior to my initial neuro-surgical consultation, I occupied my new found spare time with a select group of activities. I joined a gym, I walked, I researched, and I started a campaign. I was about to undergo an operation which could drastically change my life. Maybe better (in light of the previous months), maybe worse. No-one could pre-judge which way it would go. Having studied many aspects of the human body during my degree, I knew that the fitter I was, the better and speedier my recovery would be. I joined the gym close to my house, negotiating a contract that meant I could exit my contract in the event of operation disaster, and set about improving my blood pressure and overall fitness. I researched exactly what the tumour was, how it interacted with the rest of my brain, and what it meant. I had been told that the headaches and symptoms were probably a result of the added mass in my brain. Aside from reducing blood pressure, I couldn't do anything about that...that was for the surgeons to worry about.
I researched the DVLA website to give me clues as to how long I might be off the road, how I had to inform them, and how best to deal with it so I could get back on the road at the earliest opportunity. I learnt that if I surrendered my licence, they were obliged to give me it back at the end of my enforced period. If they revoked it, I would have to wait for one of the most over-burdened government agencies to complete their medical enquiries before I could have it back. "Err...no thanks", I thought. I completed the documents, and waved goodbye to my automotive independence...my beloved automotive independence.
By this point in time, I had become incredibly protective of my head. I hadn't realised it, but I had become more reluctant when getting into scrapes at work. I was shirking challenges in football which had once characterised my play. I considered getting my bike out to get about, but didn't trust myself. It felt strange as I was a confident cyclist, and had previously been fearless...now, I was weary of the road. So, In my feet I would trust. I cancelled my insurance policy on the vintage BMW (old banger), and used the proceeds to buy a shiny new pair of trainers. There were going to be a serious number of miles put in over the coming months. The car itself went on eBay, where it had once been found.
Over the days that followed my absence from work, I realised how quickly the story of my tumour had travelled, and was bombarded with polite queries about my welfare. The messages were heart-warming, and I was incredibly grateful, but I was tired, and words were not coming easily to me. How could I tell those who didn't know, and keep those who did up to date? Easy...Facebook.
The idea of a Facebook group about a brain tumour seemed morose, dark, and unpleasant. It was also too good to be true. As a member of Facebook, I had a large number of contacts, and a way of communicating with everyone who cared. I was also connected to a number of people who wouldn't care, so thought a group gave people the choice to decide whether or not they wanted to know about my progress, without ramming it in everyone's face. But what to call it? Jokingly, I had referred to my tumour as 'Ivan' on account of everyone referring to my news as 'terrible'. I had intended the group to be informative, and upbeat, as I was tackling this thing, not suffering it or submitting to it. Something defiant...'Get Ivan Out: Help me get the benign meningioma out of my brain'. Jackpot. I won't dwell too much on the Facebook capers, but people took it in the spirit it had been intended. People fed off my chirpy updates, and sensed the humour within, replying with banter, support, and ideas (both serious and nonsense). It gave me pleasure, it gave me laughs, and it gave me the opportunity to communicate in writing, where speech had become ever more difficult. In hindsight, I feel that this group helped me retain my sanity. I craved human contact, needed people's help to stay upbeat, but couldn't repeat the gory details to everyone who wanted or needed to know. Nor did I want to have to be reminded of the grave nature of the situation through the look in people's eyes when they learned of the diagnosis, and what I was about to endure. I was connected, and this way I had an element of control about how people were able to respond - I needed to feel like I was winning this battle, not wading through a mire of self-pity.
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