Once out of hospital, a microscopically thin veneer of normality settled over life. I focussed my worry on mundane things like how to get all the necessary school uniform, new shoes etc for the kids when I couldn’t drive and was pretty much too scared to go out in case I keeled over. Not knowing what the future might hold in terms of further diagnosis and treatment, I was keen for A not to take any time off work and use up favours we’d need later. On the other hand, it still being the school summer holidays, nor did I want the kids to be the only ones around to have to deal with another possible seizure. In short, I wanted and needed babysitting. The more time passed since the last seizure, the more reassured I was that the Keppra was working and I wouldn’t have another, but so did the awareness that at some point the tumour would outgrow the dosage, and time was moving me both away from and towards a seizure. For the rest of the week, A dropped the kids and I off at my parents’ house on his way to work. I sat there in a daze while everyone else got on with life as best they could.
9 year old L went in to town with her best friend’s family, and bought a necklace with her own money. Although perhaps not the most aesthetically pleasing thing in the world, her thoughtfulness bowled me over. The necklace splits in to three – one for her, one for E and one for me. “The big sister and little sister sides fit together even if the Mum bit isn’t there” she said, “but it looks like something is missing.” I don’t know if she realised the double meaning of what she was saying, I wasn’t able to look her in the eye.
On the second or third day out of hospital, 13 year old E and I walked the 5 minutes from my parents’ to the corner shop for a cold drink. It seemed so daring, and so new to feel fresh air again. The world seemed big – exciting, but also scary, like being allowed to walk to school by yourself for the first time. We returned without any mishap, and it felt like a major victory. That evening we all stopped by the supermarket on the way home to pick up some food for tea. The noise, lights, and number of people was just too much for me, and I tired very quickly, needing to sit down. When did the world get so busy and I so weak?
Over the week, I tried to ascertain how the kids felt about all of this, answer any questions that could be answered, and generally help navigate them through a land none of us have a map for. Both wanted to know what had caused the tumour. E suspected work stress, L blamed it on me playing too much Candy Crush. Both had a fair point, but in truth, no one knows what causes brain tumours. Would it help to know? Even in cases where there is a clear link, such as that between smoking and lung cancer, or sun exposure and skin cancer, we all know an inveterate smoker or sun worshipper who died peacefully of old age, and an abstemious shut in who got cancer anyway. It’s just not that simple.
It turned out that they had already divided up the jobs if I had another seizure. Who would watch over me, who would call the doctor. Understandably, both wanted the phone job, so they had agreed to take turns. They were frightened, but prepared. So much maturity and responsibility. Both were due to start new schools at the beginning of September, and agreed to let me email the schools to alert them to the change in family circumstances and possible need for extra support, so long as not everyone knew and no one treated them differently from their friends.
A strange feature of this time, gradually easing myself back in to real life, was that absolutely everyone looked slightly familiar. Not familiar enough that I’d know their name, but you both catch the same bus every day familiar, or they work at your local supermarket familiar. Brains are weird, man. I must have looked insane, sort of half smiling/raising an eyebrow at everyone that passed, waiting to see if they recognised me too. It took A to point out that I don’t get a bus every day, and nor do I know anyone who works at the local supermarket, before I stopped doing it. That side effect is wearing off now, but I still do double takes several times a day, thinking I recognise someone I’ve never seen before. Hopefully it’ll fully wear off before I get arrested for harassment or something.
The day before the MDT meeting at which my MRI scan would be reviewed by a specialist team, the Neurosurgeon’s secretary called to arrange an appointment to discuss the results the following Tuesday. As soon as the call finished, I googled his name, Mr Damian Holliman. Every mention I found underlined how much his patients loved and respected him, both for saving their lives and for his honest, straightforward approach, being neither overly optimistic nor pessimistic, just treating them as an individual. It was a huge relief to know I’d be in good hands whatever the outcome. I thought about worrying about the MDT meeting, but realised there was no point. The die was cast. Whatever was growing in my head was not going to be changed by worry or hope.
This seems like a downbeat post, but during this time my overriding emotion was still gratitude. To be alive, to spend time with my family, for the kindness they and friends were showing me and each other in all sorts of ways. In amongst the fatigue and confusion, that’s still a very special gift.
During this time, I also thought a lot about dying, and much as I very much didn’t and don’t want to, if I had absolutely no choice, then it seemed to me that doing it this way offered the opportunity, the absolute privilege even, of doing it right. Many people die suddenly from a heart attack or in a car crash for example. Others live to an advanced age, and by the time they die have lost their minds or virtually everyone they once cared about. Knowing you have a finite, possibly short amount of time left on this Earth means you can say all the things that need to be said to those you love, and they can say them to you. The things we all think but forget to properly express regularly, if ever. You have time and the focus to prepare a legacy, or at least the mementoes you see fit. However sad the situation may be, there won’t be the what if’s, the if only’s and missed opportunities that come with other types of death. You also have time to hire professional wailing mourners, dancing horses and self flagellators for the funeral, and make sure it’s the wake to end all wakes. I’ll be damned if I’m not going out in style.