A month or so ago I sat in the bath and all my sadness, realisation and anxiety poured out of me in a flood of tears. Phil had popped his head round the bathroom door asking if I wanted anything, like a glass of wine or a fresh towel. I had hidden myself away in the bath to have a silent cry but with Phil popping his head round the door I couldn’t hide the sadness. ‘What’s wrong’ he asked, reading me like a book, and out it all came as I tried my hardest to hide my sadness and tears.

I read a lot of blogs about cancer, mainly skin cancer but all types of cancer. Not to compare, but I guess to not feel so alone, I know their are other people with the same worries and anxiety as I have for our daughter. To know everyone has good and bad days, it’s all part of living with any type of illness but especially cancer, in some ways it helps me cope with our own bad days. Whilst reading these blogs and taking hope from others good days it never occurred to me that one day any one of the people behind those blogs could no longer be here, after all they were living with cancer.

Before I hid myself away in the bath that day, I had been reading other blogs, cancer blogs, home interior blogs all the usual ones, when it hit me, harder than being told she had skin cancer three years ago. One day I could be writing a final blog post, as I sat there reading, feeling grief for a family I didn’t know the realisation that what if one day I wasn’t reading the saddening news of a stranger losing there own battle with cancer but writing to strangers about my daughter. It was too much to bare, how had I not thought about this before I started reading all these blogs, maybe I didn’t see them as real people but characters in an ongoing story which I would dip into whenever I had a quiet moment.

I told Phil what I had read with tears pouring down my face, how can I ever write a post like that. He held me close and let me cry, ‘maybe you shouldn’t read them anymore, just concentrate on Livvy and keeping her safe and happy’ but I need to know, I need to know that they are ok and still fighting, I’ve invested so much time in their stories that I’m not ready to walk away to never know what the future holds

Livvy is doing just fine, and is so well cared for, but deep inside of me I have a worry like no other. The only way to describe how I cope with having a daughter with XP and skin cancer is to block the future out, to not look too far ahead, to get through the ‘here and now’ and enjoy it for what it is. I’ve read articles on XP when I’ve been trawling the internet, looking for any piece of information about XP that I’ve missed or any new news article that I’ve not yet read.

‘Mortality rates are low’ is a common thing to read about XP but it’s often referring to country’s without the same health care system as the UK. But Livvy has had so many skin cancers for a child living in the UK, an unprecedented number, and that’s what scares me, the unknown, working to the ‘fore front of medical knowledge’. I lock all these anxieties away as it’s the only way to make it through, but sat in the bath that day after reading the news of a stranger’s lost battle against cancer, all I could do was panic, to cry, to want the world to cut us some slack.

My heart aches for Livvy, I’ve asked myself why her, why us? I don’t have the answers. No one does. We just have to accept it and carry on in the hope that I will never write a final post, I will be here for eternity with updates on our extraordinary world living with xeroderma pigmentosum, her first day at secondary school, her first job, passing her driving test, going to university, finding a husband. And maybe one day finding a cure for XP. No one knows what the future holds but I can’t let myself believe there will ever be a final post as my daughter is much stronger than I am and much more courageous than I could ever be, she will never be defeated even if some days I feel as I have nothing left to give.