So here it is my very first blog post!

 I’ve been thinking about starting a blog for a while but it never felt like the right time. I thought about it when we were approaching the 1st anniversary of Livvy’s diagnoses and again as the clocks changed and we gained an extra hour of safe time at night. I contemplated it as the new year approached but as the bells rung out and we entered 2016 the idea of starting a blog got left behind with the memories of 2015.

So why now? Why today? Is it a significant date that no ones told us about, is it someone’s birthday or an anniversary? No, today is just another Monday with no real significances to me. It started out much like any other day, with a coffee (yes I am giving coffee up, just not today) getting the kids sorted for school, feeding all the animals and searching for something to wear. The only difference with today is a visit to the hospital with Livvy for a routine skin check.

After dropping Eddie with a friend ahead of the school run Livvy and I set off for the hospital, less than half a mile in Chris Evans had been replaced with the sound of David Walliams reading the BFG. The day still seemed to be a normal Monday, still with no great significances. We parked with ease and took the short walk from the disabled car park into the maze that is Queens Medical Centre. As we entered the hospital I briefly looked at the sign post as we started making our way to the South Block. As I naturally negotiated the corridors and endless signs and directions I realised I didn’t need them, I knew exactly where we were heading. It occurred to me that with all our visits over the last year I knew my way around this vast hospital, something I never thought possible.

The appointment with the dermatologist went as well as we had expected. We left the hospital via Costa (no hospital visit is complete without a trip to Costa) and headed home with the sound of the BFG whizz popping.

On the drive home it occurred to me that for possibly the first time since diagnosis I wasn’t fearful of a hospital visit and I left the appointment in control of the situation. For perhaps the first time in almost 18 months I feel I have control of XP and the thought of more skin cancers no longer fills me with fear. I have trust with the medical team working to keep Livvy well and we have a working plan to treat the cancers she currently has and any more that may appear.

So today started out with no significance, just another Monday but ended at the start of a new beginning. A confident and positive beginning, I know that this feeling won’t last forever and we still have many hurdles ahead of us. But for now let’s enjoy the feeling of control and power we have over XP, this is something significant and a date to mark. Many dates may have come and gone that could have been the perfect date to start a blog but I’ve chosen today. The right time.