Operation Cavernoma Removal Day 0 + 2

 It's Friday. The end of a very long week. And I'm pleased to report, we finish on a slightly upward trend.

When I got up this morning I threw on my gym clothes and did my workout before I had time to argue with myself. Those arguments are futile, I know I'll end up doing the workout so why do I bother trying to fight it. Madness. Anyway, this morning I flung myself straight into it.  To be perfectly honest, I wasn't in the mood. Yesterday had been so draining, and all the emotions possible had been experienced by us all from dawn 'til dusk. I headed to the shower and felt the warmth of cascading water envelop me. It felt good and if it wasn't for the cost of living crisis I might have stayed there longer.

I had an arrangement to meet my lovely oldest friend Nigel for coffee a bus ride away but decided to walk. I needed air and it felt good to breathe. Hospitals, as we all know, are hot and stuffy places, especially for people dressed for the outside world. It was nice to feel the cool air as I trundled up the road. 

It was a lovely coffee, and although we talked about Amy for a bit, the conversation moved to other things, and for a short while I was able to think about something else and listen instead of talk.  A good chat later, and we left the café, and after a quick nip into Sainsbury I was on my way to London, and back to the hospital. 

I'd bought some grapes in Sainsbury, and decided, since I was early for visiting time at 2pm, I'd sit once more on a bench in Queen Square. I had just settled when the phone rang. Amy's phone. It was one of the Consultant's team, Aisha, who was about to impart some news. I told her I was outside, and asked if I should venure up, already starting to head to the hospital door. She told me I should so I raced up to the ward. For once, the door to the ward was open, which was a relief. You know those hospital ward doors that are always closed and you have to buzz and wait for someone to open it and they rarely do because they're always too busy to answer the buzz of the door? Yep, it's one of those, so to find it open was a real bonus.

I arrived at Amy's bed to find Aisha, and a trainee Doctor and of course Amy, who was smiling. Always smiling, still amazing me with that. Anyway, Aisha had some news which she thought I'd be pleased to hear. Pleased? I was thrilled! So, the radiologist who had done Amy's last MRI, the one where they discovered she'd had a stroke, had seen the report and disagreed. He didn't think Amy had had a stroke at all. Rather, he thought that what they were looking at was a retraction around the area that the surgeon had worked on. If he's right, that means the area will heal, as opposed to the area of a stroke, which won't heal. If he's right, Amy will recover more quickly and not only that, she will more than likely be close to where she was verbally, which might not have been the case if she'd had a stroke.

Imagine that! Amy may not be permanently damaged! How amazing is that! (I know, I overuse the word amazing, but honestly, it's completely amazing.)  Aisha told us that Amy will be having another MRI on Monday morning and they will have another look, and then, all being well, she will be able to go home. Amy was very happy about that.

After Aisha and the doctor left, Amy pointed out that she wasn't wearing her hospital gown anymore, and that she'd managed to have a shower. She felt so much better for being clean and in fresh clothes. Also the canular had been removed. Progress upon progress. 

Amy is still struggling with the days of the week so when I sat down, she pointed to her index finger. Friday. Then her middle finger. I told her that was Saturday. She said Wednesday. I repeated Saturday, she looked at me hopefully. Wednesday. Third time lucky, she finally got it. Saturday. Ring finger, Sunday, little finger Monday (though at first she said Tuesday). So she worked out she could be going home in four days. Four fingers, four days. She then wrote the days down. Friday, Saturday, Sunday, Monday. (though she called it Funday, how apt).  It will all take time, but she'll get there.

Earlier that day, before I'd arrived, she'd had a visit from Fay, the speech therapist. It had exhausted her. She said that Fay was going to pop up later to see us. When she did it was lovely to meet her. Amy really likes Fay, who was there throughout her operation, talking to her, asking her all the questions, keeping her going. What an incredible job she does. She is thrilled with Amy's progress. Yes, she struggles to think of words, but as she pointed out, it's been just two days, and at this stage, Amy is doing very well. More good news, and further progress. 

Issy arrived with her mum who has come down from Scotland. (I think I may have mentioned that yesterday). A great support for Issy who has managed so well without her, but often people just need their mums.  We all sat for a while and then Phoebe arrived at the same time as Paul and so Issy and her mum slipped off to the café.  My mum called while we were all there and she had a chat with Amy. Later in the day I heard from my brother that my mum had been so cheered by hearing Amy talking, and sounding almost normal. 

And then we asked Amy if she fancied a trip to the café. It was so exciting, getting her out of the ward and downstairs. She, Issy and Phoebe spent time laughing and chatting together while Issy's mum, Tamsin, Paul and I chatted too, and did crosswords and Sudoku. 

After a while, Amy became tired so she headed back upstairs with Phoebe and Issy, closely followed by Paul. I thought I'd give Dan a ring then, and update him on the latest. 

I have to, at this point, talk about Dan. Dan has been nothing short of wonderful. We have a dog, so it's impossible for him to come down to London with me and anyway, there's things that need doing at home, and we had a friend coming to stay this week who we didn't cancel so he had to be home anyway. But, he has been so incredibly supportive. So worried about Amy, but letting me do whatever I need to do without a quibble. He works in London every other week, so he needs to be in London this weekend. Usually, I'd be home with the dog. He's sorted it. He has quietly gone about being the best support I could hope for, just dealing with everything, keeping people in the loop, and making sure I have all the space to be where I need to be. I realise I'm very lucky, I just hope he knows how much I appreciate it.

I headed back up to the ward to find the Neurologist, Gerry, beside Amy's bed. I'd missed most of his visit but Paul tells me he tested Amy's reflexes which were good, he asked her a lot of questions, including maths which was not good (it never is good) and also asked her to follow instructions which she struggled with. He asked her to touch her nose. She couldn't. He asked her to touch her left shoulder. She couldn't do that either. She didn't always understand what he was asking her to do. What she could do was copy his movements. So for example, he would make a symbol with his fingers and asked her to do the same and she could do that. Despite not being able to do a fair amount of instruction following, he seemed pleased with Amy's progress and told her she was doing really well. Paul wondered if he says that to everyone, but I do believe she is doing brilliantly. Biased much? Moi?

After all the visits from Neurologists, therapists et al, Amy was very tired and when she's tired, she stops making sense and understanding what's going on. We all decided not to wait until 7pm, the end of visiting time, to leave her tonight. She needed some peace. She ate her dinner and we headed out, Amy smiling of course as we left. 

So, to sum up today. We are all feeling far more positive. Today was a good day. Amy is making more sense, though reading is an issue and remembering and being able to say things like names, days of the week and months of the year, nouns in general, is proving difficult at the moment. She is eating well, and drinking water like we're heading for a drought. She tires easily and that makes speech difficult but it's very early days, and in Amy's words, 'I'll get there'. She will. Amy is one determined person, and as long as the frustration doesn't take over, she will definitely get there.

She makes us so proud, not least for the way she has handled everything, always with a smile and with an accepting ease, never a moan. And she is trying so hard to relearn words, and remember things she knows that she knew. She has made so much progress in two days. Long may the progress continue.