My phone rings, I look down and see it’s a Nottingham number, my heart stops for a second as I know who it is, it’s the hospital telling me the date of Livvy’s surgery. I answer it to hear the same question I’ve heard a thousand times before ‘Hello, is that Olivia’s mum?’
Livvy is having surgery on Thursday. As I took down the information, the guy that was informing me probably thought I was a little crazy at the sound of joy in my voice. I’ve been waiting for this phone call for a month and it felt like such a relief to finally have a date.
I hung up and phoned Phil straight away to let him know. I emailed Livvy’s head teacher to let her know she won’t be in school on Thursday or Friday. It’s like I go into auto pilot, ringing, texting and emailing, making arrangements for Eddie as we have to leave our home at 6.30am therefore we need someone to take care of Eddie in the morning and get him to school. I also have no idea how long we will be there for, although this will be her tenth surgery each one is so different it is impossible to tell how well she will wake up and how long they want us to stay before being discharged.
I make arrangements for Eddie to be picked up by a close friend who I know Eddie will be comfortable staying with until we return. I’m always so aware of Eddie’s feelings on surgery day, we are such a close family and Eddie is very much involved in Livvy’s day to day care due to the nature of her condition, he also attends most hospital appointments with us but on surgery day it is impossible for him to be there nor would I want him to be, so this is one part of Livvy’s XP world which he is not included in. I don’t want Eddie to feel left out, forgotten or like he’s been dumped with someone until we return. He is still just a child himself, trying to work out his place in a family living with xeroderma pigmentosum.
Once all arrangements are made, that’s when my head ache starts. I look at the clock and see it’s only 36 hours until we have to be at hospital, this only intensifies my head ache. I do like having short notice for Livvy’s surgery times as it’s less time to worry, less time to get stressed and over think things, although I’ve know for some time that surgery is needed I think I push it so far out of my mind until we have a date. When we have a date and time that’s when it becomes real.
I woke this morning still with a headache but more from lack of sleep than anything else, I watched hour after hour drift by as I lay in my bed wide awake going over everything in my head unable to settle, unable to think of anything but surgery, skin cancer and our reality.
This morning as Livvy was getting ready for school she stumbled upon a lost teddy, one of her favourites that we have not been able to find for a few weeks. He was lying in her basket where her neck scarfs are kept, how we have not found him before now I do not know as she wears a clean neck scarf everyday. She hugged him in amazement believing that she would never see him again. A little miracle when she needs one most, her favourite teddy found just in time to travel to hospital by her side, to hold onto with her tiny hands as she enters the theatre. Breathing in his familiar scent, the smell of home and safety as she drifts to sleep with the help of the anaesthetist.
Tomorrow is going to be a long, tiring day for all involved, I wish with all my heart and strength that she didn’t have to go through with it, but unfortunately she does and I know we will be back again. Phil keeps saying ‘hopefully this will be the last one, the last lot of skin cancers from before we protected her from UV exposure’ but I don’t have the strength to think like that, false hopes and dreams. I’ve been there before believing we were at the end of surgeries, yet somehow I always find myself back in that busy waiting area, with nurses, doctors and other patients hurrying about their business, yet the silence is deafening until I hear her cry.
My heart breaks every time I believe we are over the worst just to be told we have to go back, thats why I can’t think it will be the last, I pray and hope, but I never let myself believe.