Last week in hospital Felix broke his heart. He wasn’t crying because he couldn’t go to school or play football or that he was in pain. He was crying because he had been told that his levels were still too high, he couldn’t go home. All he wanted in the world was to be at home, something we all take for granted, to be with his family. This is one of the hardest parts of watching Felix being treated for cancer, knowing that he and I have absolutely no control over what happens and that I often have to be complicit in taking his control away.
When Felix is in hospital he has no control over anything. Even as basic as his bodily functions. These are dictated by the medication and IV hydration and other people’s demands, it is not on how much he eats or drinks. He is told regularly by me, that he should be drinking as much as he can, even though he is not thirsty. He is told when to eat depending on the medication he is taking. On occasions, he has to pee on request, like he is a robot undergoing testing. He is constantly being told what to do and these actions are closely monitored.
A time I remember vividly was when he was having bloods taken. He had been in hospital a while; he was tired and fed up, he didn’t have the answer to the only question he had, “when am I going home?”. There were a number of medical staff for the procedure and he was being told to sit up, sit back, roll over, put your arm up, put your arm down, it was heartbreaking. Within minutes of this he was then directed for go for a wee. My heart went out to him, I saw this vague look of destitution in his eyes, a look to me for help but I could do nothing. When you know that your son is receiving life saving treatment, you have to let them do what is best. He looked broken.
When Felix broke his heart last week, each time he was told he still couldn’t go home, I had to find something positive from it. That is, he is still fighting, he still has passion and he still feels life. It would be easy for him to surrender and allow apathy to take root but he doesn’t. I am so very proud of him for this. So when he refuses to eat the hospital food I condone it because I know that this is one of the few things he has control over, so off I trot to Marks and Spencer for whatever he fancies that day. When he flicks me with water each time he wees in the cardboard urinal, I always laugh because I know he is displaying his total frustration and lack of control. When he asks the nurses to wait before taking blood or putting up his chemo, again, I understand it is all about control.
It is known that lack of control leads to fear. When we feel as though we have no power or say so over what is going on, it can make us feel vulnerable and exposed. This is how Felix feels for the majority of time he is an inpatient. The team around him do all they can to empower and distract him but the nature of the treatment means that a lot of things just have to be done and cannot be avoided. He is powerless. I am powerless.
As they say, home is where the heart is for Felix right now. Home is where he has an element of control. He can eat when he wants, go to the toilet when he wants, go to bed when he wants. He can be himself, with people he loves and who love him. Home is safe. Home is secure. Home is love.