Remain or Exit? (Being alive btw, not Europe…)
The truth is, overall I’ve been lucky. Not lucky to get brain cancer - that sucks. I mean lucky within the realm of having brain cancer. I’ve encountered a lot of others on the same journey. Without using them as a way of explaining my reality, humour me and just take it on board. Compared to many with GBM, my route so far has been a walk in the park. One of the perks of my experience is that I’ve been alive long enough to realise a lot of stuff about myself. The sort of stuff that I either didn’t know, didn’t want to know or sort of knew but preferred denial rather than confrontation. One of these many ‘self realisations’ has been the fact that within my character, I’m basically an optimist. Sounds like an obvious thing to know, but that was actually a bit of a shock to me. Superficially, my outward behaviour is really easy to read as the exact opposite. Faced with any potential difficulty, my basic tendency is to firstly be hugely dramatic about it. Secondly I will run around trying to work out how to reduce and remove any perception of risk. Lastly, I’ll worry about everything openly - often pouring out the concern to anyone foolish enough to be around me at the time. I’ve always thought “you’re a pessimist mate, stop getting so stressed out about everything”. In going through my brain cancer journey though (and ‘woah!’, I certainly did all that drama, running around and screaming at people thing), I realised a strange reality of where I was coming from. Despite all the outward behaviour of expression of concern for the worst, my inner core was actually expecting the best. Reality was, I deliberately created inner conflict for a reason that I can only really describe as ‘superstition’. I came to understand that in an effort to justify the core expectation that everything was going to be OK, I had to demonstrate that I can the capacity to expect that everything would not be OK. On some level, I believed that a failure to demonstrate ‘an open mind’ about potential outcomes, I’d be living in a dream world. I was also afraid. Not so much afraid of the actual outcome (although separately these themselves were full on ‘shit your own pants’ scary), it was fear of one emotional desire being crushed by the exact opposite outcome you wanted. I’m spent most of my life often sitting on an emotional fence. Or at least, trying to believe that’s where I am. Don’t commit to any expectation because if it doesn’t arrive, it’ll hurt. Sounds pretty messed up doesn’t it? Actually, another realisation was that it was even worse than that. I only saw the world as being a reality made of singular and bi-polar outcomes. Either good or bad. What you hope for or what you fear. It’s all bullshit. Life is very rarely built around opposites. Trying to protect yourself from emotional responses by denying to yourself any form of expectation - well, it’s futile. This realisation about my character dawned on me as I encountered a series of difficult experiences which in brutal honesty (to myself I mean), really hurt. The last time I got ‘good news’ in an appointment with my medical team was back in October 2015. My MRI was clear (again), and it felt great. I hadn’t got to where I am now, so as I had always done, I secretly hid the relief and pleasure to everyone (especially myself). I nodded somberly to myself in recognition that yes, this is good news and yes, that’s nice for me, BUT, I didn’t expect that. I didn’t expect anything. I looked at all the potential outcomes, especially the bad ones and I was ready. Didn’t matter but the outcome was, I wouldn’t be either happy or sad, I would just accept it. Then though, I started getting bad news. Next MRI wasn’t clear, something was changing. MRI after that was worse - going to have to have surgery. Surgery complete and initial report was bad, it’s another tumour. Tumour path lab analysis shit also - genetic profile aggressive. Additional lab tests even worse; tumour unlikely to respond to Chemo effectively. It just carried on. Every time I went for an appointment, I went through my normal routine. Do loads of research. Understand all the potential outcomes. Accept the likelihood of negative results. Comprehend the reality of mortality. Be at peace and prepare for death. Don’t set your expectations. But every appointment just really hurt. The updates were horrible and scary. Death was starting to loom over me and I didn’t want him (or her!) too. I felt embarrassed and ashamed at my response. Why was I getting so upset? I already knew it was likely to be bad, so why was I feeling so bad about it? That’s how I started realising that I was an optimist at heart. The reality was, the continual inner hope and expectation for good news was having the shit kicked out of it by the reality of the bad news. I needed to stop it. It all came to a head when I went to see my oncologist after the results from the brain surgery had arrived and a decision had been made to put me back onto Chemo. She said a lot of things, but she said something that felt deeply profound and important. It wasn’t nice and it wasn’t warm, but it was reality. She said; “we’ll start the Chemo. We’ll set-up a scan in 3 months and see what happens. The scan is important. If the scan is clear, you might have another bit of time. If it isn’t clear, it will likely mean it’s the beginning of your death. You might not make it to the scan. You could be gone in less than 6 weeks. We’ll just have to see what happens. We don’t know what it will be. It’s about as close to 50/50 as we can see it”. I walked out feeling cold and empty, but also somehow more centered. The optimist within was for the first time able to confront the reality of what was happening. In fact, the façade of not having any expectation one way or another was now as real life as it could ever get. It’s 50/50 over whether I get to remain alive for some time, or exit life via cancer. I might have less than 6 weeks to live. I might last 3 months and find out it was time to die. It was all tough, weird, scary and liberating at the same time. Back on Chemo again was weird as well. Same cycle as before - 5 days on, 23 days off. Incapacitated for about 7 days, feel shit for 5 extra days, feeling better for 5 days and feeling really good for 11 days, then it all starts again. I felt a kind of calmness that I’ve never experienced as I went through the treatment. I actually really didn’t have an expectation and accepted that I might die and that was OK. Every cycle in the first 3 felt like a benefit and I let myself feel good about that. The MRI date arrived and I did it, wasn’t worried about that either. I actually fell asleep during the scan which made me laugh. It’s about the least relaxing thing I’ve ever had done to me (apart from having a tooth pulled out), but I was actually relaxed. Two weeks later and the scan results were ready and I went to see the oncologist again. I was as ready as I could have been, and I was afraid. I was very grateful that I’d made it this far but I knew this could well be bad news. Maybe it was time to die now. I didn’t bother trying to pretend I was cool with this because I wasn’t. I really wanted to get good news and that was OK as well. When the appointment came I got into the meeting room for the Oncologist really quick, but she took a long time to come in and see me. I could hear her and my Neuro nurse talking in the room next door, but I couldn’t hear what they were saying. Their deep and earnest conversation rang alarm bells and I braced myself - I felt certain this was it, time for death. She came in and look at me and said “Mark, you’re shaking… are you OK?”. I hadn’t even noticed it myself but I turned and saw my arm wobbling about all on its own. “Erm, yeah” I said, “I’m just a bit scared”. “You poor thing” she said “you’re absolutely fine. The MRI results are completely clear, nothing to worry about yet”. It was incredible. The first good news I’d had in over 8 months. Somehow I’d made it and had got another 3 months of life to look forward to. I can have summer with my kids and even have another anniversary with my wife. It felt so good. I started making jokes and had my Oncologist laughing out lo-ud. I came out and literally punched the air in excitement. It was beautiful. So I’ve got 3 months and we’ll see what happens. The Chemo still sucks but for now it’s doing something. I’ve recovering well from the rounds and the time I’m up and about I’m enjoying my life. I’m gonna vote tomorrow for the EU referendum as well. It’s pretty cool to be alive and able to do that as well. Go here to the start of the journey. 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