Cavernoma Removal Day 0 +1

 So it seems I was perhaps a little premature with my optimism yesterday. I had thought, probably a tad naively, that once the operation was done and Amy seemed to have come through it well, that was that. That anything after that would be recovery and an upward journey. But life isn't like that, is it. Let's be honest, we all hope for the best, and assume that's what will happen. Unless of course you're a 'glass half empty' person, and then I envy you your slice of reality.

The day started normally enough. I had arranged to meet my lovely friend Linda (she of walking buddy fame) for a walk. As it happens, neither of us seemed in the mood for a walk, especially as the weather looked a little bleak, so we decided to go for a coffee instead. Chatting was the order of the day and sitting and chatting seemed the best option. We headed to a very cute café and chin-wagged our way through for a good hour and a bit before both of us realised we were a little peckish. As the café we were in only did cakes we moved cafés and headed up the road to a little French Patisserie which did more than just Patisserie. A yummy lunch of goats cheese and sourdough with beetroot and walnuts later, and we headed back. Linda was going to drop me at Paul's but I thought it might be a good opportunity to go and see my mum before I headed to the hospital, so Linda came back to Paul's to wait while I jumped in the shower so that she could then drop me at my mum's. 

Just as we got through the front door, the phone rang. It was a 'private number'. Now, I know that often that can be a cold call, but I also know that Amy's phone comes up with 'Private Number' and also it was possible that a call from the hospital could come up on the phone that way. 

It was Amy's phone. But it wasn't Amy. It was Mr Samandouras. My heart sank as he told me, as I stood in the hallway, that Amy had been taken for an MRI this morning, which showed that she had had a stroke. He said that the haemorrhage she'd had during surgery could have been devastating if it had been any worse, and so things were good. I thought about that for a moment. Yes sure, the fact that the haemorrhage was contained and hadn't had serious consequences was indeed lucky, but a stroke? No, not sure that was such good news. Mr Samandouras continued to tell me that Amy would be kept in a little longer, that her speech was still not great, and that she needed a lot of assessing before he was happy to let her go home. 

It's not that these days I am not used to receiving scary news, but having thought those days were behind us, this was a bit of a setback to say the least. 

I called Paul who asked me loads of questions I didn't know the answers to. To be honest, I was so shocked by the news of a new stroke, I certainly wasn't thinking of relevant questions to ask Mr Samandouras. I'm not great at that at the best of times.  I'd had the presence of mind, however, to tell Mr S that Paul would want to know more, and he had agreed to pop to see us after his very hectic afternoon. He is, by the way, very lovely, kind, and able to put us at ease, even when the news is bad.

I called Issy, who was on the bus to the hospital at the time. Bless her heart, she has really been through the ringer. She then called her mum who immediately agreed to come down from Scotland. Amazing. Her aunt also agreed to meet her at the hospital. Family is amazing isn't it.

Linda dropped me at my mum's and I spent an hour with mum, who seems obsessed with what Amy is eating in the hospital. I guess, at nearly 90, little things become very important.

I left mum and headed to the hospital, meeting up with Paul on the way. When we arrived we went straight up to see Amy who was struggling to name people. Paul was Paul, not dad. She couldn't remember 'dad'. Everyone seemed to be Lewis for a while, and Phoebe was a name she couldn't bring to mind at all. She couldn't remember the days of the week or tell the time and nothing seemed to make a lot of sense. It seemed the same or a little worse than the night before but not significantly which was heartening. 

Amy was very tired, though in very good spirits, and seemed amused by her lack of recall. She has the knack, it seems, of helping us all to believe that everything is as it should be, and that all is well.

Mr Samandouras came up with one of his team and a nurse to speak to us a little later and we were reassured. Yes, Amy had a stroke, but he believed it had happened during surgery and he was sure she wouldn't have another one. Phew. Not only that, and the most important thing of all, he had managed to remove the whole cavernoma. It seems that cavernomas cannot truly be assessed until they are removed. This one had 'very thick veins' and he believed that the timing of the removal was good. He said that leaving it could have been 'catastrophic'.  So, to know that the decision to remove it was indeed the right one made us all feel a lot better. He said that Amy may never get all her speech back, but that she is further along with her recall than a lot of others are, despite the added complication of the haemorrhage and the stroke. Like I said, Mr Samandouras is able to put us at ease and we were definitely buoyed by the news that Amy was making good progress.

Lewis arrived for a visit, having heard the latest he was worried and wanted to be with his sister, and a little later Char arrived. Amy was able to name them both and it was lovely to watch them interact and laugh together. 

Issy's aunt was sitting in the café downstairs so Paul and I went down to grab a coffee and to meet her. What a lovely lady. It runs in the family it seems.

When we went back to Amy her food had arrived and she ate well, despite ordering the same as she'd had two days earlier and remembering she hadn't enjoyed it much. Still, she tucked in heartily which was very good to see. And water. I've never seen Amy drink so much. Amazing how she was getting through it. Maybe her brain has been rewired to keep her hydrated, she's never been good at drinking. Something I completely can relate to. Well, not with water anyway!

And then it was 7pm, the witching hour when all good visitors turn into toads if they don't leave the ward. So we headed back to Kings Cross where Issy was meeting her mum.  Another lovely member of the family, they seem to have a few of those.

Paul and I left them to it and wearily headed back, exhausted.

I have to wonder which stage of this roller coaster we will be at tomorrow. Hopefully this is the bit where the loops end, the rails flatten and the end is in sight.

Again we thank everyone who has messaged, called, donated, and generally cared. We are all overwhelmed and forever grateful.