A peaceful nights sleep?

I have always, from time to time, suffered with nightmares. I’ve become good at waking myself up to stop them from plaguing my subconscious. It’s a strange feeling, I know the thoughts and ‘dreams’ aren’t real and I somehow wake up, shake them away and try my hardest to get back to sleep before the sun appears over the horizon and my alarm starts to ring out.

I often can’t remember my nightmares, I just know I feel scared, I feel alone and the only way to stop it is to wake up. I have vague images of all kinds of places and people but no matter how hard I try to I can’t piece the images together to form a story.

These past few weeks they have got more and more intense and when I wake in the morning the memory of the previous nights dreams and still visible on my mind. I know the place and I know the people in my dreams only too well. I’m in the children’s day surgery unit, Livvy is under a GA and I’m with Phil waiting to be told she’s awake when the dermatological surgeon comes out in her scrubs to tell us that this one is different, it’s deeper, the reason it keeps bleeding is its deep, it’s reached her bone.

The skin cancers that Livvy often gets (basal cell carcinomas) don’t spread, they don’t have the capabilities to spread beyond the basal cells within her skin. I know this and understand it fully, but for some reason my sleeping subconscious doesn’t understand this, it gets carried away making up its own rules. Which leaves me waking in the night full of fear for my daughter, my rational waking conscious is able to calm me down but every night sees my subconscious fighting against my waking self culminating in a battle drawn out in the form of a nightmare.

The surgery which will hopefully go ahead within the next few weeks is to remove a total of 8 BCCs from Livvy’s face, one is a re-excision of a previous BCC not fully removed. Six are new BCCs diagnosed under clinical examination although until fully removed and a visit to pathology we won’t know what they are for sure but all appear like text book BCCs and are in keeping with previous ones that Livvy has had removed in the past.

The final one is what is causing my nightmares, it is on the side of Livvy’s nose, it first presented the same as her other BCCs although it’s grown, not overly quickly but much faster than her others. It presents as a none healing wound, although recently it has started bleeding much more often. Livvy will appear next to me with rich ruby red blood dripping down her perfect nose, sometimes she doesn’t even realise that it’s bleeding, I stem the blood with a tissue, smiling at her and making jokes about anything other than her bleeding wound.

When we were in London the team felt that it didn’t appear to be a BCC, that’s not to say that it’s not it just isn’t presenting how a BCC would normally, but what is normal for a 7 year old XP sufferer? It’s most probably an SCC (squamous cell carcinoma) but until it’s been removed and had a trip down to the pathology lab we won’t know for sure.

I think my subconscious is breeding and multiplying any negative thoughts and worries I have about this ‘spot’ I spend so much time suppressing them as not to cause worry or concern for Livvy and Eddie, but at night when my waking self is taken over by my subconscious all these thoughts and worries rush around in my head, making up their own rules to the way skin cancer works and spreads.

I feel anxious every time Livvy has surgery, it’s natural as her mother to feel this way, although you would think as this is to be her 10th surgery I would have got used to it or found a way to cope better. I can say for certain that I will never get used to it and I guess my way of coping is by letting my worries run wild at night. The weeks ahead of surgery are the longest and most worrying time of all for me and I know my nightmares will get more intense and vivid until surgery is over. All I can say is it’s another part of being a parent to an XP child, I’ve said before that I would swap places with Livvy without a second thought, but I can’t so the best I can do is take on the burden and worry that comes with living with xeroderma pigmentosum, I’d much rather I have the nightmares whilst Livvy gets a peaceful nights sleep.


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