Operation Cavernoma Removal - Day 0 + 4

 Today is Sunday. I write that simply because I am completely losing track.  I spoke to Amy on the phone while I was getting ready for the day and she was fairly chatty. I understood some of what she was saying, and some of it was going right over my head. It's actually easier when I'm with her when her words fail her, because she's quite good at gesticulating. Not quite so easy on the phone, though she did say that she'd had a visit from Aisha, the assistant to the Consultant, though I'm not sure what Aisha's visit accomplished to be honest.  It was nice to chat to Amy though, it seemed almost normal for a while.

This morning I also checked my TFL comings and goings. I don't understand TFL charges at all. They seem to change hour by hour. I really must phone them tomorrow, I'm convinced I'm being overcharged for my trips to London. And why I keep getting incomplete journeys when I am constantly tapping my phone is anybody's guess. Dan suggested today that I get myself an Oyster card. It's a good idea, I think that will help to solve the problem. Though it maybe a case of 'after the horse has bolted'. Still, I think I'll be up and down on trains for a while yet. 

Enough of my travel woes. This morning, before going to the hospital, Paul and I made a trip to see his brother, Laurie.  For those of you who don't know, Laurie is Paul's older brother, and he is Downs. He's almost 65, and is still looking fighting fit, though his memory is not and sadly he doesn't remember everyone these days. I haven't seen him for quite a while so he didn't know who I was, and for some very strange reason, though he always remembers Lewis and Phoebe, he has a mental block with Amy. Still, after a nudge he remembered her and was sad to hear she was in hospital. He wished her better which was lovely. It was good to see him. He's such a lovely man and his cuddles are fabulous. We stayed with him for a while and then set off for the hospital. 

I'd made some sandwiches for lunch and as Amy was expecting one of her closest friends to come and see her, we sat in the square, munching. It was another beautiful day today, and sitting in the warmth of the spring sunshine, it felt as if, for that moment, we could take a deep breath and relax.

We went up to see Amy and Issy was already by her bed. Her friend hadn't yet arrived. We talked for a bit and then when Amy's friend Ella arrived, Paul and I left them to it and headed to the café, agreeing with the girls that we'd meet them downstairs in the café when they were ready and meanwhile, we would wait for my brother, David, and my niece, Anna. Eventually we were all downstairs, David having stopped off in Brick Lane to get beigels and cheesecake. Delish!

After a while, Amy became very tired, so off we went upstairs again so that she could rest. She tires very easily at the moment, and it must be quite a strain having constant visits between 2pm and 7pm, though the last couple of days she has been alone before 7pm as we are acutely aware that she needs rest.

Something that has come up in recent conversations around Amy's bedside is the lack of awareness on all our parts as to what to expect, post operation. Before the op, Amy had been told that all would be ok, not to worry about anything, and that she may even be out of hospital within the first couple of days. She was told, if things didn't quite go according to plan, she may lose some of her words but what she wasn't told was that this is more than norm, rather than the exception. Now that she is being told that she is where she would be expected to be at this stage, it would have been good to know that where she is at now is what we should have anticipated. Forewarned is forearmed and all that.  

Issy has been chatting to someone whose husband has had a similar operation to Amy four weeks ago, and it's been really useful to know that he suffered in the same way but now, four weeks on, things are beginning to return to normal. It gives us a bit of a timeline, though obviously everyone is different. His initial symptoms were more severe, so it'll be interesting to see if Amy is now on the same trajectory or if she will heal quicker. To be honest, we feel not so much that we were duped, but that we were perhaps a little naïve in thinking that when the Cavernoma was removed, barring any disasters during the operation, Amy would be back to normal in no time. Silly us! But as we all know, Amy is determined, so watch this space :)

So, as it's possible that Amy may be out tomorrow, the next question is how she gets looked after. The medical side of things will be arranged by the hospital. The Speech and Vocational therapy will all be sorted between the hospital team and Amy's local authority. But for the first couple of weeks at least, Amy will need someone with her. Issy is there, of course, but Issy has work to worry about. I'll be staying for the first few days, by which time I'm sure they'll be glad to get rid of me. Thankfully Amy and Issy have a large network of friends who all want to help, so I think Issy will sort some kind of rota system. Phoebe has already volunteered Wednesdays, and has also promised to bring chicken soup. I'll possibly be there this Wednesday, I hope she brings enough for me. 

It feels good to be starting to think of the next phase. Amy is so tired, but so wanting to go home. I do believe that once she's home, she'll make progress in leaps and bounds. 

Meanwhile, I continue to feel immense pride. Not just for her determination and constant good humour, but for the little things like forcing herself to write words down, and when they're wrong, repeating them until they're right. The days of the week are finally in order, that's a major breakthrough. Little things put together add up to big things don't they. She is reaching for the big things in small steps, and 'we'll get there'.