Operation Cavernoma Removal Day 0 - 1

Tomorrow is the big day. Operation Cavernoma Removal.  I was up early this morning, doing the last bits of packing for my (at least 6) days ahead 'down south', taking the dog for a walk, though she wasn't that interested today in truth, too many scarecrow bangs going off in the fields, they freak her out; feeding next door's cat, getting the house ready for Dan's return home with his friend Garry, etc etc etc.  I was unsure whether to take a handbag or not. I know, it seems trivial. But to be honest it's the trivial stuff that gives me something to focus on so that I don't think too hard about the big stuff.  So, there was me, having a very lengthy discussion about whether to just stick to my wheelie carry-on, or take a rucksack as well, or my backpack handbag and decided I would stick with just the wheelie. Then I changed my mind, and changed it back again. I think what I'm trying to say is that I was a bit all over the place this morning. My lack of decision-making ability is definitely testament to that.

I was partly influenced by the fact that I get nervous around Kings Cross with my mobile phone, mainly because Dan had his phone whipped out of his hand a few months ago, while he was walking between Euston and Kings Cross, and it is, apparently, a fairly common occurrence. Be aware people, keep your phones away while walking in these areas, and probably other areas. These thieves go out in gangs, spend an hour nicking loads of phones and then disappear into thin air, totally uncatchable. Buggers!

Anyway, there was me, faffing about this morning and when Dan came home I knew it wouldn't be long before I headed to the station. It was, of course, lovely to see him, especially as today is Valentine's day, but that was very much playing a minor part in the proceedings this year.  He took me to the station and we said our goodbyes and I waited in the sunshine for the train. 

I don't know what it is about Hull Trains. Lovely as they are,  Every time I get on one, someone is sitting in my allotted seat. Usually I just mumble something and point to the seat number and the seat stealer moves, but today, of all days, I had a bit of a battle. It was a whole family, taking over the table where my seat was meant to be.  I put my very heavy carry-on on the overhead shelf and waited until they moved, which they did, to another table on the other side of the carriage. I wonder where they were meant to be sitting. Hey ho.  I settled into my seat and started thinking. This, of course, was a very dangerous thing to do. I suddenly was completely overwhelmed by the situation and what was about to happen. And, as has happened quite a few times over the last few weeks, I started to think of all the things that could go wrong tomorrow. My biggest mistake was taking a look at the consent forms. I know, for most operations, consent forms make horrid reading, but for some reason, usually they are just words, lists of words that if you stop to think of what they are, you may not even sign the form. This consent form had words that had meaning. Seizure, stroke, paralysis, heart attack, death.  All things that could happen and seem perfectly feasible when you're on a train heading to London to see your daughter's brain being cut into.  I felt a wave of emotion and tried to push those evil thoughts aside. Ah yes, Candy Crush is a great distraction.

When I got to Kings Cross, I started walking towards Queen Square. I haven't been to Queen Square before but I got out my old phone (see above!) and put the hospital into google maps.  Easy, you'd think. I mean, I used to be a driving instructor, what could possibly go wrong?  Oh so much!  I got lost. No, I didn't get lost, I got very lost! So lost that after half an hour (bearing in mind the hospital is 20 minutes from Kings Cross) I came across a road I'd walked down more than 15 minutes before. I don't understand  google maps. I mean, I'm good at technology and I'm good at map reading (as long as I can turn a road map upside down that is) but I don't know why google maps always flummoxes me. At one point, I went past a Falafel place and got excited. 

I love Falafel so I thought about lunch tomorrow if I feel like eating. To be honest, there are very few occasions that I don't feel like eating. I messaged Amy to see if she wanted a Falafel and then told her I was nearly there, and when I didn't show up she sent out a 'mum, are you ok' message. I know, I'm supposed to be the one worrying about her, not the other way around. Suffice to say, I had spent a long time walking the wrong way, going round in circles, to the point where I wanted to scream, and then Paul (Amy's dad) came to find me. I had been almost there ages before and I wanted to cry, but being there at last gave me something else to think about.

We found Amy in a private room on the ward. It turns out, when she first arrived they didn't have a bed for her, so she's been put into a private room for now. She's kind of hoping she won't get moved but we all think she probably will.  Meanwhile, she can enjoy the peace today, she will barely be there tomorrow anyway.

She seemed very relaxed. She'd had a couple of tests, a chat with her Consultant and had met with the speech therapist who is going to see her through tomorrow, keeping her talking. The speech therapist came to learn about Amy, so that she can get a picture of all the things that they can chat about tomorrow during the op. Turns out she has an easy task. Amy has a degree in Speech and Language Sciences, and both her and the Speech Therapist went to the same University. I'm not sure the whole time will be taken up talking about Sheffield, but I'm sure it'll be a big chunk of it.

Here's an amazing thing. I hope I get this exactly right because it's frighteningly incredible. During the operation, they will ask Amy to say something, then they will disconnect a part of her brain and ask her the same again. If she can't do it, say it, remember it, they reconnect and do the same with another bit of brain. Continuing to test until all bits are connected and working properly. It is unbelievable what can be done. To actually know how to stop someone's thought process, and be able to reconnect it. Simply incredible.

After meeting all the people that will be with her during her ordeal operation tomorrow, Amy was reassured again and feels that they are all so calm and in control that she has nothing to worry about. That, in turn, reassured us.

When Issy arrived to visit, Paul and I nipped round the corner for a much needed drink and when we went back we waited for Amy to be taken off for another MRI. Once she was gone, visiting was almost over so having said our goodbyes to her, hugged lots, shed tears when she wasn't looking, we left the hospital and headed back for what is turning into a bit of a restless night.

Tomorrow, the operation is scheduled for 9am.  Paul and I are going to head up at 10.30am for no other reason but to just be there. Apparently the first couple of hours are purely preparing Amy for the operation, then the op itself can take up to three hours, though the consultant told her today she could be finished in three in total.  

As I sit here typing, I hope my child is sleeping. She will need her strength tomorrow.

So there it is. At just past midnight, I think I'll turn in. Hopefully, this time tomorrow it will all be over and will have had a very successful outcome. Then I can stop worrying about Amy, and start worrying about walking a ridiculous amount of miles :).

Just one final thing.  I want to thank each and every one of you who has called, messaged, read my blog and posts, donated and generally been amazing. I have heard from really close friends and people I haven't spoken to for a very long time and I feel completely blessed and humbled. I suppose that's a bit of a cliché, but that doesn't make it any less true.  Thank you, from the bottom of my heart. Your support has been incredible and I cannot begin to tell you how grateful I am.

And on that note, for now, goodnight. See you on the other side.

💗🧠💗

PS: I've read this through and I realise it's a bit of a ramble, but that seems to be where my head is at so I won't apologise, I just hope it makes sense!