Something I don’t often talk about is anger. Brain tumours are different from other cancer in many ways – for starters they are more difficult to treat, because not many medicines can cross the blood brain barrier. They’re also different because of how late they are diagnosed due to symptoms often being misunderstood, but also because they can create personality changes – they are in the brain after all, the organ that controls our whole being.
And in our house, anger has been very near the top of the list of issues for two years now. You wouldn’t know it when we go smiling down the street but I suspect our neighbours have a good idea after hearing and seeing some rather “shall we call social services?” moments. It’s not something most people affected by brain tumours are comfortable talking about and it peels away at the pretty picture I sometimes paint of my family, but when your four year old is using the f word along with a whole host of other unsavoury language, you kind of have to face it. Yes, thank you to YouTube and older brothers for the diversity of language being overheard and memorised for future use, and thank you to brain tumours for taking away that filter that normally stops not just a kid but also a man who is normally old enough to know better.
Last summer it was something we laughed at. I mean your four year old opening the fridge and exclaiming “Fu**ing hell, there’s no food I like” was hilarious. Today, I spend a smaller proportion of the day than I used to explaining that that language is inappropriate, but only because the tumours has shrunk and there are less headaches and less stress on the brain. But I still go to bed every night worrying about how my child is speaking to me and that he hit, kicked and threw stuff at me. I no longer blame myself for his “bad upbringing” although it’s interesting that you only get to see this if you are very close to us – so for some part it must be controllable.
I have been told I am not allowed to use actual swear words when writing and I get it, but this really is a disease where you should be allowed to use the f word all the time. Watching your husband uncontrollably angry, through no fault of his own, and then heartbroken afterwards is bad. But watching your kids watch their father like this is just beyond cruel. I make sure we remember all the good times. The anger was big at one point and sometimes we could even laugh at the funny situations – I still think of our half snapped broom and don’t know whether to laugh or cry at the memory that one brings. I threw it out pretty quickly, though so no one else had to be reminded of that particular day.
And that’s just it – I spend (and reckon I will spend countless hours over the years) bringing up all the fun stories and showing the pictures of all the fun times we had. It’s important the boys remember that their dad was the funny one, because he was. He’d have us in stitches every single night at the dinner table and the boys luckily have inherited his sense of humour. I love it when I hear their childish jokes and them laughing out loud at themselves just like Ian always did. To me it’s beautiful and a sign of their resilience and confidence in themselves. And of course all of this overshadows the anger that’s simmering there all the time. Because who wouldn’t be uncontrollably angry about the situation we’re in? It’s so hard to push it back down and get on with life. But it’s what I do all the time, sometimes more successful than others, and it’s what drives me to focus on the charity we set up in Oscar’s name that’s more crucial than ever. As I look to get the charity back to ‘normal’ and raising money again in this new world, I’m driven by the knowledge that the money we put to research is needed more than ever.
Marie
