In my last post I wrote about our plans for a moonlit holiday to Cyprus. I’m sure my dear readers are keen to know how we got on taking an XP child to a hot and sunny country where the UV levels were inevitably higher than the UK. I must say sat in my kitchen writing this post whilst surrounded by a thick layer of snow outdoors makes our holiday already feel like a lifetime ago.

I won’t bore my dear readers with every detail of our holiday, I’m sure you don’t want to hear about our road trip up Troodos mountain to play in the snow, (ironic now there is so much more snow at home than there was up Troodos!) or the children’s fascination at visiting a Cypriot supermarket, or watching the sunset before eating the most divine food or our hunt on Aphrodite beach for a heart shaped pebble.

I’m sure what you want to know is how we pulled off such a holiday and what we learnt form it with regards to xeroderma pigmentosum. In the most part all went rather smoothly and issue free, the airports were a breeze with the security areas both at Gatwick and Paphos UV free, before travelling I was a little concerned about this aspect of travelling, having not taken the children on a flight since diagnosis. On our return to the UK immigration officials asked Eddie and Phil to remove their glasses and Eddie to remove his cap. I had a fear that if Livvy were to be asked to remove her mask in an unsafe area how did I try to explain in Greek that there is a real risk of developing skin cancer if she were to remove it. Luckily (as is often the case) I had over-thought the situation and in reality all was fine, apart from our 7am departure time which had us almost falling asleep by lunch time.

When we arrived at our Villa both Eddie and Livvy were opening up the suit cases looking for their wet suits before we could thank the taxi driver and close the villa door behind us! To say they were excited is playing it down just a little. Ahead of our holiday we had ordered wet suits for both children knowing that in reality most swimming would be at night time and the temperatures in Cyprus in late February are still rather chilly, therefore wearing wet suits would take the edge off the colder temperatures, we also ordered Livvy some boots and gloves just in case we ventured to the beach during the day as well as a hood a diver would wear under their diving mask. We weren’t sure if Livvy would make use of the equipment we had brought or even if the day time temperatures would be too high to venture outdoors. We had booked a large villa to give us plenty of space if we were to spend much of the day indoors. In reality Livvy and Eddie spent every morning and evening in the pool. The wet suit, boots, gloves and hood along with a spare mask we had taken in case her day to day mask were to break whilst away from home, worked amazingly in giving Livvy adequate protection from the higher levels of UV. During the hottest part of the day we would go into the villa for our lunch allowing a break from the most harmful UV rays but it went almost unnoticed and just part of a normal daily routine of gathering in the kitchen to eat.

We hired a car to explore the island, Phil had taken a roll of UV film which we have on our windows at home along with some sticky glue dots, a pen and some scissors. Eddie held the film up against each window in the car whilst Phil drew the shape required to give the car temporary UV window film. It worked like a dream and created a perfect UV safe vehicle to which we could explore the island and not worry about Livvy having to wear her protection during hot car journeys.

We overcame every problem that having XP can create with careful pre-planning, resulting in a memorable holiday that I hope both children can remember and cherish for many years to come. One key thing that I noticed for myself as Livvys mother having lived with XP for the past three years, I have become very negative towards the sun in the UK not wanting the winter to end each year for fear of what the summer months mean to my daughter but having taken the Cypriot sun in both hands and taking full control of its every move I felt empowered by it and not at all negative. We went there knowing full well the UV levels were to be higher than the UK, even though it is still winter in Cyprus, but we were prepared, meaning we could embrace it at every point. Some mornings I would take my coffee outside leaving Phil and the children in the safety of the villa behind closed curtains and feel the morning sun on my face and for the first time in three years I didn’t resent it, I know during the British summer months I may forget that feeling and resentment will creep back into my soul but for that week we were all grateful to the sun for allowing us all a break from the reality of skin cancer and a world a million miles away from surgery. I asked Livvy if she wanted to go on holiday again next year, ‘a sunny holiday or a winter holiday’, she was very definite in her answer ‘a sunny holiday!’ Having XP is never easy but sometimes we all need to leave reality behind and enjoy a week where nothing matters other than the people that share that moment with you.