With just over 10 weeks to go until I run the London marathon for the XP support group, I thought a little update on my blog is well overdue. I hit 12 miles last week, it felt comfortable, I wouldn’t go as far as to say easy but it didn’t break me mentally or physically. Don’t get me wrong I’ve had some hellish runs, battling the demons in my head telling me to stop, telling me I won’t make it, at times they are so loud and almost convincing. It takes all I have to push on through these doubts, pushing past my tears and my negative thoughts.

If you read my last blog post you may remember that I was suffering with plantar fasciitis, I would like to say that I’m no longer in pain however that’s not the truth, the truth is the pain isn’t as debilitating but its still there from time to time. I’m still seeing a local sports physio every few weeks who is keeping me moving. I often think if I had gone to my GP and had a referral to a NHS physio I would have been told to stop running, I would have been told a marathon wasn’t in my reach.

I confessed to my physio last week that I didn’t think I would be ‘better’ before race day, he was honest and said I wouldn’t be totally 100% but he did say he would get me to the start line, he would help he manage the injury to allow me to get my miles in over the next few months. I’m glad to have found someone who has the same target as I do, completing the London Marathon 2019 and not fixing me! Fixing is going to have to wait until I have my medal!

I also wrote about Livvy being cancer free in my last blog post, I would like to say that this has continued but to be honest I’m not sure if it has. She’s developed some possible cancers on her face, they don’t look typical of a cancer however this is nothing new for Livvy, she’s had some text book basal cell carcinomas, as well as ones that everyone was convinced wouldn’t be carcinomas of any type yet have come back as BCCs, I guess nothing is normal with such a young girl in this unique situation that she has found herself in.

The bottom line is whatever these ‘maybe cancers’ are we need to know, biopsies are the only way to truly find out what’s going on. However to have a general anaesthetic for two biopsies is a little over the top, in the past when she has needed a biopsy we’ve been able to wait until she has needed a few as well as requiring a full excision of confirmed cancers. With 12 surgeries over a four year period you can see we’ve never had to wait long for another necessary surgery where we’ve been able to get biopsies of anything questionable at the same time. 

It is clear that the time in-between new cancers appearing has dramatically reduced since diagnosis and we started taking a zero tolerance to UV exposure. However we’ve been left in a situation where Livvy has two possible cancers that we need to find out for sure what they are without the luxury of an upcoming surgery (can I even call surgery a luxury? It feels like one when you hear the alternative!)

The alternative to a general aesthetic is a local aesthetic, this would mean Livvy being fully awake whilst a surgeon takes the two biopsies. I should also point out that both are on the bridge of her nose so there is no escaping. I’m not sure I as an adult and knowing all the facts would be able to endure such a procedure. Livvy, as always, has shown her resilience to XP and after being told step by step by her surgeon in some detail what would happen she has agreed to having the procedure.

Livvy never fails to amaze me, if I’m honest it’s weighing on my shoulders and I’m counting down the days down until we have to get on the train once again and head to London for her biopsies. The marathon training has taken a back seat, that’s not to say I’m not out there every other day running the local streets to the point where I know the distances between each local street and towards the end of my long runs even the lamp post distances. The training is not consuming me any longer as it can’t, Livvy needs me possibly more so than any surgery before, I need to remain upbeat and not let her see how much fear I have, not only for the biopsies but the results that will follow. I need to stay focused and I’m not sure I have the mental capacity for both marathon training and new cancers on my baby girl, the new scars the new fears, the same sleepless nights and unanswerable questions. My training has taken a back seat yet everything I do at the moment all comes back to my training, the food I eat, the rest I allow myself between runs, the discipline it takes to say no when I get invited out.

It’s ok getting to the start line but if I’m also going to get to the finish line it’s going to take all I’ve got and more. When I decided that I would run the marathon for the XP support group I think I had thought that Livvy’s health was in a better place than it had been over the previous 4 years since diagnosis and I could redirect all that focus into my training. As it turns out I need to find some more focus and drive from somewhere deep inside that I didn’t know I had.

You read things about the London marathon like, ‘it will change you’ and ‘you learn more about yourself during those 26.2 miles’ I’m quickly learning these things to be true and we are still 10 weeks away from race day.

My sponsorship page is linked below, please pop over to read a little more about why I’m running the London marathon for the XP support group and if you can spare any money I will be so grateful for any donations. 

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