No words

Monday 20th November arrived, the day of Livvy’s surgery, a day that’s been so long in the planning, a day that Livvy needs so much in her treatment at the moment. Full of apprehension we set off on our long drive to London, a three hour drive if we don’t hit any traffic. We left well before the sun had risen to ensure we had more than enough time to drive through the centre of London which always takes longer than it ever should in order to reach Westminster Bridge where St Thomas hospital sits towering above the River Thames.

We got less than 20 miles away from home when we found ourselves in slow moving traffic as we passed by roadworks on the M1. Having left so much extra time in our journey we were surprisingly chilled about the prospect of hitting traffic so early on in our drive to London.

Our relaxed and chilled attitude didn’t last long as shortly after we descended on a creeping pace of moving traffic my phone rang. I looked down and saw who it was, I also saw the time and knew this person wouldn’t be in work so early as the sun had barley risen above the horizon. I answered the phone fearing what I was going to hear. I hoped and prayed it was just a call to see if we were on the road yet, a friendly morning call to say hello.

The words took a while to sink in, I couldn’t believe after so many months of complex planning Livvy’s surgery would be cancelled. How? Why? I was in total disbelief, although once it started to sink in a short lived feeling of relief washed over me, relief that I wouldn’t be spending the afternoon in a trance waiting to be told my daughter was awake from her surgery. Phil who was driving simply got of at the next motorway junction just to get back on the other side and began our journey home in the opposite direction.

The reason why it was cancelled was out of everyone’s control and could not have been foreseen by anyone at the hospital. Without going into the details, a key person involved in the surgery couldn’t be there for personal reasons. I totally respect and understand this decision knowing a little more about the situation other than the generic term ‘personal reasons’.

Although I understood and respected the reasons, for us as a family and me as a mother it felt like we were taking a big step backwards, after such a long time planning the complex logistics behind the surgery we were now in a position where we didn’t even have a date. We had no idea of time scales of when this key person would be back and how quickly a new date could be organised. I just felt like as we pulled out the big guns and organised our ultimate defence against skin cancer, XP said ‘screw you!’ and snatched one of the most significant people away from us that was going to help us get ahead of the skin cancers that are plaguing Livvys face at the moment. I felt crushed, for the first day or so I didn’t really know what to think or say but as the days went by it turned to pure hurt and dismay. I found myself not able to catch my breath through my tears, I didn’t know what to feel or how long we had to wait for a new date. As a parent you want to do all you can to help your children and I felt weak and helpless.

I had prepared myself mentally for every possible outcome following her surgery, I had cleared my diary to be home with Livvy the days following surgery, even when she was due to be back at school I planned to stay close to home just in case I needed to go and sweep her up and hold her close if the pain got too much. I had run through all outcomes and possibilities that can come from having a daughter under a general anaesthetic to remove skin cancer but I had not prepared myself for cancellation, it never even entered my mind as a fleeting thought. I think this is why it hit me so hard and my tears became torrential.

Trying my hardest to hide my hurt from Eddie and Livvy, I didn’t want either of them to feel the panic I did at not having a date once again. Livvy has coped so well wanting to return to school the same morning that we were told surgery was cancelled, she walk through the school door greeted by the head master with a smile on her face, I had to keep reminding her that although it wasn’t happening that day it still had to go ahead at some point. Whether that would be this side of Christmas is anyone’s guess.

I wanted this post to be one telling all my dear readers how brave Livvy had been during her Mohs surgery, how quickly she had bounced back from her GA. I never thought I’d be writing to say it didn’t happen, we are no further on than we were in the summer. We have a possible new date of the 11th of December although this has not yet been confirmed, I’m aware that this is less than a week away, I’m hopefully that this will be the date although I’m not holding my breath.

I as a mother to a daughter that lives with xeroderma pigmentosum should know to expect the unexpected. That the unimaginable is always a true possibility. That the best laid plans can be torn up as you sit on and watch not able to do anything to stop them. I just wish XP would play nice and stop this constant merry go round of skin cancer, surgery, upset, hurt, pain and isolation. From the day Livvy got diagnosed its been a constant battle with her school, the local education authority, society and skin cancer. When is it Livvys turn for a easy ride where we don’t have to battle against XP just to exists and be a child? We will keep battling on as we have no choice, sometimes I think we must be due some good luck just as XP reminds us who we are playing against, and I’m left with no words.


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