Yesterday we visited the XP clinic in London which can be found within St Thomas’s hospital, I think the best way to sum up my feelings of our visit is through the words of the late and great Freddie Mercury,
Sometimes I feel I’m gonna break down and cry, so lonely
Nowhere to go, nothing to do with my time
I get lonely, so lonely, living in my own
Sometimes I feel I’m always walking too fast, so lonely
And everything is coming down on me, down on me, I go crazy
Oh so crazy, living on my own
Sometimes I feel nobody gives me no warning
Find my head is always up in the clouds in a dreamworld
It’s not easy, living on my own
And that’s it, that sums it up, although I’m not living on my own but we, as a family, are living on our own, it feels like no one else understands how we live. With a constant fear, a constant guilt and a pain in our hearts that I can not even try to describe to you.
I want to cry but the tears won’t come, I can feel it behind my eyes, a longing to cry but I can’t let my tears fall as I know they won’t stop.
I knew Livvy needed more surgery, after three years of living as we do in a constant higher state of alert for skin cancer I’ve become pretty good at knowing the difference between a skin cancer and a non skin cancer on Livvy’s perfect little face. I’m also in constant contact with the team in London, emailing and phoning weekly with updates on changes to any suspected skin cancers, so I knew in my heart that surgery was on the horizon. I guess I’d dreamt of turning up at clinic and after taking a closer look at everything on her perfect face the dermatologist would turn and say, ‘nothing to worry about, no skin cancer here’. No matter how many times or how hard I dream with no warning I’m back in reality planning my daughters next surgery.
We’ve had a real hard week at school this week, without going into too much detail I have been left feeling that Livvy is not safe at times when in school. We’ve had meetings and difficult conversations with the head teacher and although we walked away feeling reassured dealing with these issues the day before arriving in London to be told surgery is definitely going ahead it feels like we are being emotional pulled in every direction, as Freddie Mercury said ‘everything is coming down on me, I go crazy, living on my own’ my head is so full of thoughts all pouring down on me I can’t organise them I can’t control them, it’s all going so fast from every side, crazy is the only word to explain what it’s like living in a family with xeroderma pigmentosum hanging over us. A crazy, lonely world that only a handful of people can relate to. The loneliness of living with a rare condition like XP sometimes is the hardest and most difficult part of all.