Would the real EvilMarkII please stand up?
It’s been nearly 5 months since the brain tumour presented itself when I had my first seizure. Statistically that means that theoretically, I am more likely than not to die within the next ten months. I mention this not because I either want or intent to die (or indeed feel like I’m going to right now), but instead to highlight an omnipresent sense of urgency that sits within me. It compels me to try and ‘make the most’ of the time that I have available. When I finished my Chemoradiotherapy (about 5 weeks ago now), I was relieved the treatment was over. With a month off before the next round of Chemotherapy would resume, it felt really important to me to grab the precious 4 weeks and really enjoy it. I had big plans. I loved the idea of spending lots of quality time with the kids and seeing friends and family. I was even toying with the idea of arranging a party / live performance or something similar. It would be a great excuse to see some of the amazing people that have been encouraging me and supporting me through this experience. As it turns out though, the radiotherapy wasn’t going to let me have the last laugh following the treatment. Whilst I had made it through the 6 weeks treatment relatively unscathed compared to most, the ‘fallout’ (literally I suppose!) was harsh. I felt tired; very, very tired. The word ‘tired’ just doesn’t do justice for the fatigue that radiotherapy washes through you. It comes in waves. Gigantic, crushing waves which hit you like you’ve run full pelt into a solid wall. There is no ‘pushing through’ it, it is completely disabling. The only response I found I could offer was to go to bed and sleep. Usually 1 to 2 hours was enough to recover enough to carry on with the day, but it was ever present. It contaminated the days in a way that sapped will and capability to do much more than just get by. Early on I had to recognise that no matter what desire existed to squeeze the 4 weeks I had off for all these important experiences, the little energy I had should be spent with the kids. That would have to suffice. And it was an important few weeks for the kids as well. My son returned to school (starting Year 1) and my daughter started school (Reception). I was thrilled to walk my daughter to her first day at school, something I had been unable to do for my son the previous year due to work. When I was first ill and didn’t have the same understanding of what was happening to me, I did wonder if I would make it to see her in her school uniform. It made me very proud. I suspect that most parents who have shared the experience will know that the return / start of school is not always ‘roses in the garden’ though. The transition from their amazing summer holiday to the realities of the school routine was, not surprisingly, jarring. My wife had worked so hard to lay on an incredible break for them, whilst giving me the time to get through my treatment. They had enjoyed 4 separate trips away along with loads of days out / time with family and friends. Suddenly it’s all ‘rules, rules, rules’ and more rigid bedtime routines. By about the 3rd day I could literally read the expression on my daughters face and it said “I have to do this every day? Forever? Are you having a laugh?”! I really felt for her. Both the kids also picked up a cough which I soon had as well. When you’ve got cancer and have been through Chemotherapy, all these insignificant / minor ailments suddenly become a potential big deal. I was put onto antibiotics to try and clear it before the Chemotherapy resumed. The combined effects of the cough and the tablets just exacerbated the tiredness. Some days it really felt like I was swimming through glue. But it wasn’t all bad, not by a long way. An old friend did some work for me in the garden including laying a new patio which I promptly sat on to soak up the last of the summer sun. It was beautiful. I did manage to spend some time with some of my friends including catching up with a few I’ve not seen for ages. I did some work in the garden myself, I even managed to lay a little ‘hard-standing’ to put my wheelbarrow on. It may sound silly, but finding the energy to do it lifted my spirits incredibly. More importantly though, I was able to reconnect with the kids after being apart from them for much of the summer. Being able to be a father to them whilst they adjusted to the new routine of school was hugely rewarding and important. I remember doing some reading homework with my son and encountering a funny picture within the book. He looked at me, back at the picture and at me again and we both fell about laughing; tears were pouring down his face. It was a beautiful, unforgettable moment. I couldn’t help but recognise that had it not been for my illness, it’s unlikely I would have had the time to experience that moment with him. With the kids now both at school, my wife and I could also spend some time together alone. It had been the first real opportunity to do so since the illness had begun. The first week felt strange without the kids around all the time, by the second we were able to start enjoying the peace. We had some time to really talk through what was happening to us and how we were both feeling. It just reconfirmed to me what an incredible woman she is, how strong and how lucky I am to have her in my life. With the emergence of this new time, I also had more time for self-reflection and analysis. A profound and important set of realisations begun to take shape within me. I still haven’t fully understood all the detail of the new feelings that are growing within me. Certainly, my ability to write is too clumsy to do it justice. But if I at least try to express these emotions; it is something to do with beginning to understand the reality of what has happened to me physically, neurologically and emotionally. I mean as a result of the ‘damage’ that has been done to my brain. Damage done through the original tumour, the surgery to remove it and the subsequent treatment intended on extending my life as long as possible. The truth is that I am not the same Mark Willing as I was before the experience began. I have been changed (or evolved?) into something different. I can remember the original me, in every detail, every nuance, strength and flaw. The person I am now is very similar, but not the same. Of course, we are all changing, all the time. Experience and time creates a constantly evolving version of ourselves. If we could travel back in time and meet ourselves in the past, noticeable changes, personality traits, preferences and behaviours would be present. We are not static. The normal state though is that whatever the changes might be, you would be able to draw a direct line, through your own internal narrative of your life. You would be able to connect the series of events that would have led to each of the changes that exist. It’s not like that for brain damage. Imagine a train snaking along an endless twisting track of perception that suddenly, without explanation jumps onto a parallel track that slowly drifts off in a different direction. The journey has changed and it lacks the frame of reference that existed of where it came from. The process of realisation of this change within me was fascinating, but what was more incredible was the process of understanding who the ‘new’ me was. The first reality I came to see was that the changes were subtle rather than gross. It wasn’t like I’d had a major personality change or suddenly started talking with a foreign accent. The changes are there though. The most significant part is something to do with the ability to create and maintain a cohesive narrative that allows me to hold together a story of what is going on. Both within my own mind and externally in the outside world. Most of the time this is all fine. Things happen, I perceive them, I register them and I integrate them into whatever internal ‘thought-scape’ is occurring within. But my ability to maintain this consistently has been impaired. If I’m tired, under stress or even excited that process (which I certainly use to take for granted) starts to break down. I find I can no longer integrate the experience without with the dialogue within. Slowly the ‘story’ of reality starts to dissolve. I can only liken it to that horrible sensation that occurs just before you pass out from drinking too much alcohol. When it occurs, it is useless to try and fight it and the only solution in my case is to go to sleep - in fact, more like ‘disappear’ until the story reassembled itself again. What this means in practise is that the ability to ‘push through’ tiredness to stay productive (something the old me was habitually addicted to) no longer exists. There are other behavioural changes to, like me having a much shorter ‘fuse’ can I recall. It’s disarming and difficult to control. During the 2nd / 3rd week, I was honoured that my work colleagues wanted to put on a charity event in part to recognise what had happened to me. They contacted me to discuss being involved and to suggest a charity. My wife had found a charity called ‘The Headcase Trust’ who were solely dedicated to finding research into the specific cancer that I have. She gave the charity founder a ring and ended up having a long chat with him. He suggested that I should give a Prof. P a ring, him being the leader of the UK’s only brain tumour research unit. I was very lucky to get hold of him first time and he was a lovely guy. He suggested that I consider taking a drug called ‘clomipramine’ which his research indicated may extend the lives of some people with my condition. It is certainly no silver bullet, but at least something else that can be added to the short list of tools you have available to try and fight this thing. Interestingly, he had been trying to get a Phase III trial off the ground (something that would allow the drug to be recognised for the treatment of brain cancer, something at the moment it is not) for years. However, as the drug is old and out of patent, there is no money in it for the drug companies. No appetite for funding a large scale trial - capatalism at its very worst I’m afraid. I decided immediately that I would give me a go (what would I have to lose?) and my GP / oncologist were happy to support me. Unfortunately though, as I started taking it (at the lowest possible dose, something I would have to increase by a factor of 8) I found the effects to be overwhelming. It is usually used as an anti-depressant and after just the first dose I was off with the fairies and even more tired than I was already. I continued for 4 days, which intersected with me started my first round of ‘chemo only’, this being the next stage of my treatment. Within just a couple of days of combined Chemo and anti-depressants I had to take myself off to A&E as the cough had turned into a chest infection. I was at least of becoming seriously ill. Fortunately my blood levels were fine and I was put onto a stronger batch of antibiotics to combat the chest infection whilst I finished the Chemo. But the A&E doctor advised that I stop taking the anti-depressants until I was further past the radiotherapy and stronger in myself. She said “so, you’ve not long finished radiotherapy, you’re starting Chemotherapy and you’ve decided to take a new drug at the same time? You don’t like to give yourself any easy ride do you?” The Professor had also advised me to wait before I started being so near to the radiotherapy, so I only have myself to blame. It’s still an option though and maybe I’ll be able to restart them again when I’m stronger and better recovered from the radiotherapy. I was just really eager to do anything that might improve my chances of beating the 10 month window and getting some more time. Anyway - I finished the 5 day course of Chemo yesterday and have another 3 weeks before the next one starts. It’s an opportunity to try and shake the chest infection, get some more recovery after the radiotherapy and hopefully build towards a time where I’ll have a bit more energy. 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