A kind of normality is nosing its way back into our lives. We have to stop and reflect on it. But despite obvious and loud setbacks, it is quietly and rather confidently appearing.
We had a wonderful weekend. On Saturday, we packed up the car and headed off to Watlington – an upmarket and rather lovely village in Oxfordshire where we joined a large and jolly group of our friends from Tufnell Park on a campsite.
You always know things are going to be alright when you get presented with an opened bottle of beer when you step out of the car.
Henry disappeared into the field with Huck and his mates and we fell in with our friends. We all occasionally reconvened.
But the normality of the weekend struck home the most. There was rain, enormous piles of barbecued red meat, beer, and laughter. It was joyous.
Then this morning Henry was accessed. First thing, I woke him up and stuck a kind of bandage with cream squirted onto it over his port. The port sits just under his skin on the right hand-side of his chest. The cream, known as EMLA, is an anaesthetic and numbs the skin. There were no real histrionics. After a bit of pantomime grumbling from both of us, the job was done.
About an hour later, Diane, one of the lovely community nurses, came to the house and “accessed” him. That is, she put a needle into the port with a tube attached to it. Thanks to the EMLA cream, it’s a reasonably painless way of taking blood samples and giving Henry most of his medicines. Henry usually stays accessed for a few days. This week, they’ll give him two lots of chemotherapy and an anaesthetic through it. The remarkable thing about Henry is that being accessed doesn’t really bother him.
Today, he went off to school where he found out the other children were all doing a fun run to raise money for play equipment and improvements to the playground. Although Henry is on quite a strong part of his drug regimen, he insisted on taking part.
He notched up about a kilometre in the 20 minutes set aside for the run. I’ve no doubt he would have gone further if time allowed. Again, there is a normality to this that brings almost overwhelming relief.
But it’s not all a paradise of normality. The payback has been a huge heel-digging, mule-headed refusal to take his weekly antibiotics. Lately Henry’s bedtime has slipped, there hasn’t been a single night in the past three months where everyone stayed in their own bed. Our routine has collapsed. But instead of fretting and gnashing our teeth and wringing our hands, we have decided to be calm. We will get through. We are re-setting.
We are convinced that Henry links the meds he refuses with his leukaemia more than anything else. He’s been taking them almost since the day he was diagnosed. And he will have to take them until his treatment finishes in May 2016.
And while some normality returns, there is this weekly presence of the sickly Septrin that rings out Henry’s illness. Its regularity reminds us how long it’s been and gives a sense to Celia and me of how far we have yet to go. Small wonder Henry rebels. Good on him.
But he has to take the medicine because it’s saving him from a nasty pneumonia called PCP – the bacteria infects most of us; but only attacks the weakest. Notably people on chemotherapy or living with AIDS. To encourage Henry to take it, we are insisting on more normality. Henry will go to school more, we will go out to play with friends, we will go to work, we will reclaim our lives.
Then hopefully Henry will be able to overcome his weekly hurdles. Foul as they are, they have to become normal.