Operation Cavernoma Removal - Day 0

Unsurprisingly, I had hardly slept. I suppose three hours isn't awful, and I thought if all went well on OCR day, which I was sure it would, I would sleep like a baby.  After updating the blog I tried, I really did, it just didn't happen. And when it did I woke at 4am, and that was that. Never mind. 

I eventually surfaced at around 7am. Paul and I had agreed to head to the hospital around 10.30am, by which time the pre-op preparation would be almost done, and we would be on hand close by, should the need arise. So I got up and did my work out, showered and got ready for the long day ahead. Amy had let us know that the Anaesthetist had been to see her that morning, letting her know the timings for the day and so she could tell us she would, in all probability, be back on the ward by 5pm. As visiting finishes at 7pm, that would give us ample time to spend time with her after the operation.

When we got to the hospital at around 10.30am we went straight to the ward to find out if Amy had gone down to the theatre as scheduled. She had, and so we thought we'd head out and find somewhere to settle for the next few hours. We knew that the consultant had told Amy she could be done in as little as three hours if all went to plan, so we went into the square, the sun was shining and although it was a little on the cooler side, we found a park bench and settled with what remained of the coffee we had bought en route the the hospital.

The oasis that is Queen Square is quite beautiful, especially in the sunshine. A world away from the hustle and bustle of Kings Cross, yet a mere stone's throw. Well, a twenty minute walk but allow me some poetic license. Surrounded by hospital buildings, many people on the benches were either working in, visiting, or spending time in the buildings around the square.

Great Ormond Street is just around the corner and this statue was purchased in memory of Andrew Meller, who was associated with the hospital, by the Friends of the Children of Great Ormond Street Hospital. It was designed by Patricia Finch in 2001 and apparently depicts the unbreakable bond between mother and child. What a perfect place for it to be.

And here is the Queen, of the aforementioned Queen Square though it seems by the plaque that there is some controversy as to which queen it actually depicts!

The hospital itself is a beautiful building and stood out from the others in it's style. In the sun's rays it looked stunning, though I couldn't help imagining what horrors were going on inside.

We were feeling fairly relaxed, most of the time. It's amazing how one minute you can be doing a crossword and suddenly you are hit by a wave of fear, or uncontrollable emotion. And within moments, you are either crying, shaking or heading back to the crossword. The mind is a beast at times.

Time ticked on, very slowly. Messages of support were flooding in and it was wonderful to know that good friends, and even acquaintances had Amy in their thoughts. How fortunate we are to know so many good people. After a couple of hours, Issy joined us, and we headed off for another cup of coffee, which we brought back to the square to sip in the sunshine. We chatted about inane things, and at times, just stared into space, in our own thoughts.  Now and again I began visualising what I imagined would be happening to Amy, and those were the moments I found myself shuddering, and getting more emotional. What a rollercoaster ride of feelings we were all on.

When Phoebe turned up around 2pm, and after a call to the hospital to see what stage Amy was at, only to be told she was still in theatre, we decided to go and find a pub and have a spot of lunch. 

The pub was cosy and we had our own little corner which was good, far from the madding crowd. Not that it was crowded but when we first arrived there was a group in at the other end. Some work do. I know that because now and again there was a round of applause. Who does that with friends?  

The menu was good, and the fish and chips were highly recommended on the reviews, so Paul duly obliged. I had the mushroom chilli, a bizarre choice for me but it was very tasty. Phoebe had the pie and Issy had the fish cakes. 

It was good pub grub and having had a bite of Phoebe's pie I was filled with regret, the plate is always greener on the other side! In truth I don't think any of us were particularly hungry, but eating seemed to be a good idea, so we did. I had already munched a box of Pringles and really didn't need food, I can honestly say I have no idea where I put it, but I managed, as did we all. 

I have discovered something about the human psyche. We are very able to make ourselves believe what we want to believe, as long as the clock doesn't keep ticking. Earlier, at 1pm, I convinced myself that no news was good news. By 3pm, I was certain that no news was bad news, simply because the operation seemed to be taking far longer than had been anticipated.  Paul phoned the hospital again at 3.20pm, to be told this time that Amy had gone to recovery. Issy and I hugged and joyful and relieved tears were shed. Shortly after that, Mr Samandouras, the Consultant, called and passed the phone to Amy. She sounded exhausted but managed a hello before Mr S told us that all had gone well, that Amy had been incredibly brave, had not complained at all, despite the fact that he'd had to cut more than he'd anticipated, and that near the end of the procedure she'd had a haemorrhage and that's why she was in theatre for 6 hours. 6 hours!! And all the time, awake, and having to talk, to answer questions, to be quizzed. It sounded horrific. He was very pleased though with how things had gone and assured us that all was well. Amy said a weak goodbye and then she was whisked off to recovery where she stayed for the next four hours.

Lewis joined us at the pub and eventually we all went for a little wander, before heading to the hospital around 6.30pm in the hope that we'd be able to see Amy before visiting finished at 7pm. We were told that if she was on the ward by 7pm, we could go and see her, if not, we'd have to wait until tomorrow. So we headed to the café in the hospital and Lewis brought out the playing cards.  After a game of Rummy and trumps (I know, that's not what it's called but I can't remember the name now, I'm tired, don't shoot me!), we were about to call the ward at three minutes to seven when we got a text from Amy to tell us she was back. 

We raced up to the ward to see her. Issy and I went in first. The rule is two visitors at a time but it soon became apparent that nobody sticks to the rules so I went to get the others though not before giving Amy a kiss and telling her how incredibly proud I am of her. There were tears, it was very emotional, and Amy was struggling to hold it together, for the first time in a long time. She had been so strong, but at that moment, seeing us, and the stress of the day, was all too much and she allowed the tears to flow. And why the hell not. 

There's what can only be described as a long white plaster, just above her ear, and a tube draining the fluid from the wound. Her hair, which she loves so dearly, is pretty much still in tact, thank goodness. That was one of her biggest worries. They have hardly shaved anything at all, which pleases her immensely! That's a relief. She looked pale, but she was smiling and happy to be surrounded by those who love her the most. 

We soon realised that her speech, as we were warned, was not back to normal. She struggled to remember what thing were called. Mr Samandurous had told me on the phone that she struggled to name objects but she was actually finding it difficult to think of lots of words. We are assured that this is normal, and when all the swelling goes down it should start to right itself. For now, it's quite amusing but I know it won't be long before it frustrates Amy so hopefully it will improve quickly.

At this point I must tell you, Issy is wonderful. She has so much patience and though this is obviously not something familiar to her, she just seemed to know how to deal with Amy's lack of vocabulary, filling in the blanks, rightly or wrongly, but so gently that it was such a touching thing to watch. Amy has been through so much, but in Issy she has found a wonderful woman who knows her so well, and is so wonderful to her, she's a very lucky girl, and I know she knows it.

After a short while we all left, uplifted by Amy's indestructible spirit. All of us exhausted, but none more so than Amy. Tomorrow she may not be in such good spirits, but knowing Amy, she will do her best not to be downbeat. 

Again, and without hesitation, I want to thank everyone for their kindness in keeping us all in your thoughts. We are overwhelmed by the messages of support and the care of so many. Impossible to name everyone, but please know we know who you are, and we love you for it. Massive thanks, which is such an inadequate word.

And that's that. It's done. Recovery is far from over, but we hope it will be speedy. Life is for living, and with the amazing help of Mr Samandouras, Amy can now live it without fear.

And so to bed, it's been a long day. More tomorrow I should think. And then I have to start thinking about the small matter of a walk!  That though is for another time. Now, I can sleep, finally.