Operation Cavernoma Removal - Day 0 + 7

 I realise it's late and that it's already the very early hours but I had the last two episodes of 'The Traitors' to watch and I couldn't leave it with one to go!  (No spoilers here!). And to be honest, I wasn't going to blog tonight (is blog a verb? No idea). Either way, I wasn't going to do blogging, but I am for two reasons. One, it's Wednesday. That makes it a week since the operation. Just one solitary week, it honestly feels like a year. This has to have been the longest, and definitely the hardest week of my life. A rollercoaster ride of emotions, from the absolute lows to the hopeful highs. Banishing thoughts of negativity and trying to calm the positivity. Each and every day has been a challenge in some way, but as the days slowly slip by, the challenges we face seem to be a little easier and I'm hoping that by the time I head back home on Friday, I will feel as if we are on a very positive course.

Today though, was a hard one. So I come to the second reason for my post. Yesterday was incredibly positive and each day things have become a little easier. But today, Amy found it harder. She was struggling with her words far more than yesterday and this frustrated her, understandably.  

At one point she announced that at 2pm it would get easier. That was a little earlier than in reality but there is a definite improvement later in the day. You'd imagine it would be the other way round. After a good night's sleep, I'd have thought that the mornings would find Amy able to get her words out, but she's right, it seems to be the opposite. Though by the evening, she is really tired, and then finds it not only hard to speak, but also to understand what people are saying. Today this was definitely far more marked than yesterday. 

We know this will all take time, and though she was frustrated, Issy and I tried to reassure her that she will get days that are not as good as other days, it can't improve every day but that if most days are better, the odd difficult day won't matter, and that's where we are at the moment. My thinking is if the harder days space out more and more, eventually they will disappear all together, but that's a long way off, and we are very aware that this will take time.

Meanwhile, we did have some joy today. Phoebe came for a visit, armed with ingredients for chicken soup which I have to say was very scrummy. She's mastered the art;  proud mama. Amy tucked in and loved it, and if I tell you I can't remember the last time Amy ate chicken, or any meat for that matter, you will realise that for much of her teens and twenties she's been vegetarian. But when you have major brain surgery, it seems all you really want is chicken soup. 

Amy and Issy also had a couple of friends over for a visit, two lovely people who obviously cheered Amy up no end but probably helped her oncoming tiredness as well. She did manage a little walk earlier too, which was good to see. Amy, Phoebe and I all headed out for a teensy peramble round the block. Nice to get some fresh air. By the way, I realise peramble isn't in the dictionary but you know what I mean. 

So another up and down day, perhaps a little more down than up to start with, but as I've said, we all know this is not a quick fix. I'm so proud of how she's doing, and especially proud of how she's coping. Amazing Amy.

Tomorrow she has her first post operation follow up with the hospital. I'm sure they will be happy with her progress. I look forward to knowing that all is as it should be. It's also possible that by the weekend she will have her stitches out. If not by Friday, then possibly Saturday if the doctor can do it. I don't want to look too far ahead, but sometime next week Amy will be allowed to wash her hair. That will definitely make her feel better. Meanwhile, we continue to take each day as it comes, and now that the first week is over with, we can all look forward with belief and optimism.