Operation Cavernoma Removal - Day 0 +8

 I think we can safely say that yesterday's not so good day is history. Today was a good day. Although there were moments of sheer tiredness and a fair few word struggles, Amy was so much better today than yesterday. Much brighter. Even she could sense her improvement and felt very positive.

We had a call from her local authority therapists today, the department responsible for organising her onward rehabilitation. A lovely lady called Tara who was very professional yet warm talked to Issy (Amy doesn't have the confidence yet to talk on the phone) about Speech and Language Therapy, Physiotherapy, Occupational Therapy and Psychotherapy. All bar Psychotherapy will be in touch with Amy over the next two to three weeks to organise visits and to get her back on the road to recovery. She will also, because she's Amy, try other ways in addition, to get her health and her words back so that she can be confident enough to go back to work.

Amy also had an appointment with her consultant and his team, online. We were so heartened to hear that they are very pleased with Amy's progress and think she's doing really well. They showed us the latest scans:

The pictures on the left show the healing brain, the big white blob (technical term) shows where the Cavernoma was and that it's now healing and the more pale white bits around it is where the swelling is, which in time will go down and as it does, Amy should be able to heal too.  The black bits in the pictures on the right around the white blobby bits, they're the bad bits (also a technical term!).

So the news was good, but in the back of my mind I was desperate to ask the question that we all wanted the answer to but didn't want to ask. But I took a deep breath and asked it anyway.

"So, Mr Samandouras, you probably can't say for sure but will Amy be more susceptible to Cavernomas and what are the chances she'll have to go through this again."

His response was music to our ears. He explained about the two types of Cavernomas, the familial and the sporadic. Amy's was sporadic. Yip yip! That means they're not inherited, which we suspected because she only had one, (only? I don't mean to sound flippant), and familial are often multiple. And because it's sporadic, in Mr Samandouras's experience, it won't return. She won't get another one. She can live life normally without the worry of getting another one. That was the best news we've had in the last 3 years!

He also said, on a slightly down side, that Amy may never fully recover her vocabulary. Only time will tell. Hopefully she will get back as much as she needs and find ways to cope with the words that she struggles with. And in that way, she will be able to return to work at some point and carry on being an English teacher.  

After all the calls, Amy, Issy and I went for a walk to the shops where Amy was excited to do her first bit of shopping since the op. Little things suddenly mean a lot. It won't surprise you to know that this whole experience as put a new perspective on life for Amy, whether that will last or not we are yet to see, but it'll be interesting to see how that manifests itself, or if it changes anything at all.

So, a good day, we end on a high because tomorrow I'm on the train back home. As I said yesterday, I feel I've been away for months, though in reality it's been a week and a half. I'm looking forward to getting back, seeing Dan and Steffy, the dog. I can't wait to get walking again and to stop eating rubbish. Diet starts again on Monday!  I will miss Amy and Issy of course, and being there for both of them. Spending time with them, and Lewis, Char and Phoebe too, has been heart warming, despite the reason for it. To see the love and caring by my children for their sibling has been so wonderful. They are so close, the three of them, and that just fills me with pride.

I may be back again next week, if the girls need me but I think they'll be fine. Lewis and Phoebe are on the case and popping in to be with Amy now and again when Issy is at work. Amy is determined (there's that word again) to cope well, and to feel independent again so I don't think our mollycoddling will last long.  

So now, my focus is the walk and raising the funds for the Cavernoma Alliance UK. The road ahead is a long one, both for me on the walk, and for Amy. I hope we both succeed in our missions, I have a feeling we will.