Life in the Twilight Zone

Brilliant! It's Saturday morning and we're at home. Today started early for Natasha - hockey match away - but slowly for the rest of us. Kay & I soaked ourselves in the bath to get rid of the hospital smell and now we're sitting on the sofa, Kay watching TV (not normally allowed during the day!) and me with my laptop. Marion's heading out to do some shopping. I have a bunch of things to do but my personal battery is flat. Soaking in the bath is a good way of measuring how much residual energy one has and I failed to register on the scale this morning. How Marion keeps on going I have no idea.

Marion & I spent our first night in the same bed for more than 2 weeks last night. It was almost like sleeping with a stranger and on that basis could have been quite fun if we hadn't both fallen into unconsciousness. Kay woke four times during the night, three times to go to the toilet and once because her food supply needed changing. It seemed that she always woke when I was deeply asleep because I felt like a complete automaton when I had to get out of bed. The broken night has not helped my tiredness.

Still, it's great to be home and even better that Kay is so lively. The difference between her state today and when she last came home is huge. And let's hope that it stays that way.

I'm using the backspace key quite a lot, writing this text. I keep wanting to make relativistic remarks like, "things feel nearly normal" or "Kay is much better", or futuristic remarks like, "Tomorrow I'm going mountain biking" or "hopefully the worst is behind us". I just spoke to my sister-in-law and she said, "I hear that Kay is better". These relativistic or futuristic concepts have no meaning in the world in which we now live.  We live from hour to hour, knowing that at any moment our plans can change dramatically. And the only thing that we can be sure of is that, sooner or later, our plans will change dramatically again. It is highly likely that Kay will get infections and that we will have to hurry her to hospital. Each time this happens she will have to stay in hospital for four days after her fever has gone. If the problem is a fungal infection it can take days before the fever passes. And some fungal infections are very dangerous...

So to say relativistic things like "Kay is better" or "things are normal" is to make a grave error of perspective. We live with a child who has cancer in her bone marrow. Her immune system is practically non-existant. The bacteria and funguses that she normally carries with her can become dangerous to her at any moment. Next week her system will yet again be blasted with three different chemo agents and marrow will again be sucked out of her bones. There's nothing in normal life to which this can be related. And our future remains entirely unpredictable. Welcome to the Twilight Zone.

I guess that we have made the short term adjustment to living in the Twilight Zone. I have ceased to make solid plans for anything or, in my mind, to commit myself to anything. I don't ask questions about the future and I don't make predictions. This is totally and utterly against my nature, but completely necessary.

But I find it very difficult to swallow the medium to long term consequences. I already miss our house in France and I have absolutely no idea when we will get to see it again. The rules of this situation seem to be that we will have to remain within 60 minutes of a (known?) hospital for the next 2 years. A 12 hour drive down to the south of France would require us to first map out all the hospitals along the route and a dramatic improvement in our French, especially medical terminology. We've already cancelled our ski holiday for this reason, at least. But to be honest I can't bear the thought of being restricted to The Netherlands for all our holidays in the coming years. Nightmare. The only way to deal with it is not to think about it right now and wait and see what happens, ie completely accept the rules of the Twilight Zone...