It’s been a while since I wrote my last blog post, 5 months for those who are counting. I guess as the years of living with xeroderma pigmentosum roll by there’s not much more to say, every summer is long and difficult, we pine for the winter, the dark evenings and the crisp cool frosty mornings.

I don’t think it gets easier, it just becomes our ‘normal’ if you do something often enough it becomes second nature, I guess that’s where we are now, sun cream application even through

the winter months are just part of our daily lives, it gets harder and harder to remember a time before.

It’s second nature to knock on our own front door before entering to give Livvy time to move to safety if she is near the entrance. It’s also second nature to wait a few minutes when we pull up somewhere in the car to give her time to pull on her mask and gloves. Even when I go out alone I find myself looking in my rear view mirror to see if Livvy has her mask on, just to remember I’m alone and I can open the door with no risk of harm coming to my daughter.

Since my last blog post Livvy has had to endure another surgery (her 12th) to remove skin cancer from her face, body and scalp. I thought about writing a blog post about it but what more can I add that I haven’t already written about? The sleepless nights leading up to surgery date, holding her close whilst we wait for her surgeon the morning of the operation, explaining to another nurse why she can’t be placed in a bed near a window. The long wait until her surgeon reappears to tell us that she’s in recovery and all went well. The pain, the tears, the questions which I don’t have the answers to which follow surgery. Then the wait for the results. It’s the same every time, I can’t put a new twist on it, I cant make it any more than what it is and so that’s why I didn’t blog about it this time.

We were recently at St. Thomas hospital in London to see the XP team, every three months Livvy has a skin check, and every three months since diagnoses 4 years ago we get told that she has a new skin cancer, or one that we were keeping a close eye on has grown too rapidly and therefore needs removing with surgery. In the early days I used to get so disappointed and upset that another skin cancer had appeared, but as the years have past us by I’ve come to expect it, I’m pretty good at spotting a skin cancer myself these days so before walking into a skin check I know what the outcome will be. 

Our recent trip however was different, we weren’t keeping an eye on any and I hadn’t noticed anything new. After a top to toe check of her skin her consultants concluded that she was clear. It’s the first time since diagnosis that we’ve walked away from an appointment with an all clear. It’s odd as you would have thought that I’d be a little more excited, but I guess over the years I’ve got my hopes up so many times that I’ve learnt not to take anything for granted, just because we’ve got the all clear now doesn’t mean something won’t appear in the next few weeks and months. Maybe after a year of no skin cancers and no surgery that’s when it will hit me that we’ve done it! We’ve got a hold of XP and the many skin cancers that have plagued my daughter for the past 4 years, until that day I will reman on high alert for any changes in Livvy’s skin, I don’t think I will ever fully relax but in time maybe I will be able to celebrate Livvy being cancer free. 

So as the days, weeks, months and years start to get a little less tense without having skin cancer and surgery constantly hanging over us you would think that I would take this time to put my feet up and give my head some space to digest what is ultimately amazing news, and a long time coming. That would be too easy! I mean what would I do without having something terrifying looming up ahead, after four years its almost like I need something to count down to, something that consumes my every waking moment!

So as living with XP starts to get a little easier I’ve agreed to run the London marathon 2019 for the XP support group! Yes my dear readers you read that right, the London marathon!!!!! Some days I cant see my end goal I can’t see myself running down the mall with Buckingham Palace behind me, I feel physically sick at the thought, I don’t even think its the distance so much as the crowds of people watching me, and don’t even get me started on getting to the start line without Phil helping me! I’m hoping someone will take pity on my as I sit on the tube in my running gear looking like a rabbit in headlights!

I felt good about the distance and the training which is about to get underway, I took part in a local half marathon in September and was a little bit smug that I was already at a half marathon standard, my plan was to maintain the half marathon distance up till Christmas and then very slowly in the new year increase my miles until the marathon in April.

If having a daughter with XP has taught me anything its that nothing goes to plan and nothing is easy! The week following the half marathon I was hit with a terrible cold which meant I didn’t run for two weeks, I was still ok and a little smug as I saw it as my body needing a little rest after my half marathon training, a two week break would do me good. I got back into my training but had a pain in the sole of my foot near to my heel, I ran a few short distances but I couldn’t put any pressure on my foot by the time I got home, I took another few weeks off running to rest my foot, I started to get a little nervous as the days went by with no training. After another good rest I pulled on my running shoes and hit the road, short distances I was fine and although my foot would niggle me, when it came to the longer distances I couldn’t put any pressure on my foot the following day. 

I’m not one to throw the towel in this early in my training, so I took my sorry little self to see a sports physio, he confirmed what I had thought, plantar fasciitis! Any runners out there reading this will know how debilitating this can be, and how it can throw a great big spanner into any training plan! I walked away from the physio with kinesiology tape round my heel, and some exercises to do. I need to reduce my miles right down but the good news is I don’t need complete rest, its not as bad as it could be but with the marathon date getting ever closer its not doing my nerves any good and my anxiety is through the roof, its not helping that my stress relief is normally running and with reduced miles and reduces frequency it feels like a double blow!

But when I’ve done feeling sorry for myself I remember why I’m running the marathon, I’m running for the XP support group, I’m running not just for my own daughter but all the children and adults that live with XP and the daily battles and challenges that brings. I have my own battle coming up and I’m fully aware that I may be running out of time if my foot doesn’t listen to me and sort its self out pretty quickly, but this isn’t for the rest of my life its simply until April when I will have somehow dragged myself around the streets of London for 26.2 miles got my medal then returned to my life.

The challenge of training for a marathon as well as the marathon itself is quite a scary prospect but when I put it into perspective with what Livvy and all her XP peers have to contend with every day that’s when I know I will drag my self around that course wether my foot is in agreement or not! The challenge of a marathon really does fall into insignificance when I think about Livvy and the life that awaits her living with XP.

If you would like to sponsor me I would be eternally grateful, as XP is so rare the charity doesn’t get as much coverage as the bigger charities, yet the help to XP families that they provide is vitally important. The following link will take you to me sponsor page –

https://uk.virginmoneygiving.com/jodie-Holden-xp

I hope to keep all my dear readers up to date on my training progress, fingers crossed my next blog post will be all about my foot being a whole lot better and that my training has really got underway, we can hope anyway, as I take on a new challenge!