The background

 

Hi. My name is Rebecca and I am a mum.  

I have 3 children. Lewis is my eldest, he's 29. Amy is my second, she's 26 and Phoebe is my youngest, at 23.  They're good people and they make me proud.

However, that's not the point of this blog.  For the purposes of this, Amy is the central character, which i suppose makes sense since she's the middle child.

Amy is an English teacher in a school in London. She was training during lockdown which naturally wasn't easy as a lot of her lessons had to be done online. She passed her course that summer and began looking for a job.  

If you remember back to that summer, we were allowed to socialise in gardens with a few people but not go inside the house.  Amy didn't live with me by that time, so one day she drove over for lunch, breaking off from her job searches to socialise with her ol' mum.  

It was a beautiful sunny afternoon and once lunch was made, we sat together on the grass, chatting the afternoon away.  At some point, and to be honest with you I couldn't begin to tell you what sort of time it was, Amy began telling me how she'd had a couple of strange experiences of late.  Firstly, she had been teaching her class and reading with them, and suddenly, as she looked at the page the words didn't seem to make sense.. She knew she was familiar with the words, but they just had no meaning.  How odd.  However, it didn't last long and she thought no more about it.  

A couple of days after that, and just a day or two before she was sitting in my garden, she told me that she had been driving along, singing to a song on the radio that she knew very well, and suddenly she couldn't remember the words, which was strange, because she knew she knew them, she just couldn't think what they were.

As she was telling me, her speech started to change. It started to slow, and she didn't understand what I was saying to her.  I asked her if we should call a doctor, she didn't know what i was saying. I repeated "shall we call the doctor" ....and Amy replied "I can't understand what you're saying". It was so strange because all had been fine up until that point.

About 20 minutes later, when Amy's understanding came back, we called the doctor.  Although Amy didn't live with me at the time, she was still registered locally.  Obviously no doctor was seeing anyone at that time so she had a phone appointment and the doctor decided she'd had an epileptic fit and should have blood tests, sometime in the next couple of weeks.

Even to our unmedical training and complete lack of knowledge, we knew that Amy had not had an epileptic fit so, as Amy was feeling fine, we agreed that Amy would see how things went but if she felt bad the following day she would go to A&E at Barnet General, her local hospital at the time.

The following morning I called Amy to see how she felt. She was already on her way to A&E, she'd had very bad headaches and didn't feel right.  I went straight there but of course I wasn't allowed in to be with her.

Waiting outside I got chatting to a lady who was waiting for her husband for the fourth time that month. He had been there so often but she wasn't allowed in and each time he came out, he couldn't remember what the doctor had told him and she was angry. So angry that she had a go at the poor man stopping people going in because I was waiting outside while my 23 year old daughter was inside with something wrong with her head!  She fought my corner well but I still wasn't allowed in. Bless her. I was grateful for her support.

Meanwhile, Amy and I were texting each other. Please bare in mind that Amy is a very strong woman, and incredibly independent, and kept telling me to go home, it would be a long wait.  Of course, I wouldn't go home, I would have waited out there a year if necessary!  

Amy had a variety of tests, and then was taken for a CT scan. I waited.

All of a sudden a nurse came running out calling for me.

"come quickly" she said. "follow me".

Imagine my fear at that moment. I hadn't heard from Amy for a little while and I absolutely was not allowed in. Suddenly I'm being rushed through the A&E department and my mind was whirring, thinking every scary thought under the sun.  When I saw Amy sitting up in a bed I can't tell you the relief I felt. 

"wait here, the consultant will be here soon" the nurse said, and off she went.

It's hard to know how long we waited, it was probably only a short while but it didn't seem it.  When the consultant came she was short, slight, and very matter of fact.

"are you the mother?" she asked me. I nodded.

She looked at Amy. 

"you've had a stroke, we are going to send you for an MRI."

To be honest, I know she said a little more than that but after that, all was a bit of a blur, for both of us I'm sure. There were tears, we both cried. The fear was real. 

I was allowed to stay until Amy went for the MRI and then I had to leave.  We had the logistical problem of getting Amy's car out of the hospital car park, but that was the least of my worries and my brother, David, was a great help with that. I didn't see Amy again for a while. She was whisked off for an MRI and was then taken to the National Hospital for Neurology and Neurosurgery in Queen's Square in London. What we now know to be one of the best in the country and for which we are very grateful.

Amy was there a few days and after that, we had a meeting (online of course) with her consultant, Mr Samandouros.  He told us a lot that day but the main thing, and the purpose of all of this, is that he told us that Amy has a Cavernoma.  Obviously none of us knew what that was and it took a while to get to grips with it. But in a nutshell, a cavernoma is a cluster of abnormal blood vessels, usually found in the brain or spinal chord and they are shaped like a raspberry.  He explained that a lot of people have them, and usually you are born with it, and die with it and you never know you've got it. It's only when it bleeds it causes problems, and that's what happened to Amy, hence the stroke and seizures.

The treatment was easy. Pills to stop the seizures.  No driving for two years, unless something happens, in which case those 2 years start again. Amy sold her car.  There is nothing that can be done to 'heal' a Cavernoma, they either don't change, or they get removed. Obviously removal can be dangerous and a lot of people opt to live with them, and some people have no choice because of where they are. Some people, like Amy, have one. Some people have many multiple cavernomas, and they can be hereditary.

So, Amy started the treatment, and had MRI scans to check that all was still as it was. The scans were every 6 months and very quickly moved to annually, so she had one at the end of 2021 and another in November of 2022.  Midway through that first 2 years, Amy had a small episode and spent a couple of days at the hospital but nothing much had changed so she was sent home. But at the 2022 scan things had changed.  The cavernoma had changed shape and grown, and though Mr Samadouros didn't say it in so many words, he seemed to be indicating that Amy should now consider the surgery. Up until this point, it was much more of an 'it's up to you' thing.  

Amy talked to her girlfriend and thought about it over the weekend, and came to the conclusion that at the age of 26, a lifetime of headaches, fatigue and waiting for a major stroke wasn't really what she'd want, so they agreed that surgery was the way to go. The surgery of course has it's risks. Because of where the cavernoma is, in the worst case scenario, Amy may never speak again, or even understand what people are saying to her. She could also have a stroke on the operating table, but the risks seems less going ahead with the operation than not. And hopefully, once it's done, her life will be completely her own again.

The operation itself sounds frightful. Having to be awake while someone fiddles with your brain, and to have to continue talking, playing word games and trying not to focus on what's going on will be a massive challenge, but I know Amy, she is an incredible person, and she will get through it with flying colours.

So, the pre-op scans are done, and now she is waiting for a date.

I tell you all this to give you the background to what I'm about to embark on!

There is a very small charity, The Cavernoma Alliance UK - CAUK, who support and help people with cavernomas.  They are a very small but wonderful team of individuals.  Since I can't make Amy better, which any mother would want to do, I have decided to something I can do, and that is to walk for this charity.  I've done a fair few charity walks in my time, but not for a while, and to be perfectly frank, I'm leaving my training very late, but I've decided to go big or go home, and I'm walking the London to Brighton walk at the end of May.  What's a mere 100km!  I'm getting a team together, the more of us there are, the more we can raise for this incredible charity. And the more we can feel we are doing something to help Amy, even if we're really not.

So, this is just the start of this blog. I'm going to keep you all up to date with Amy's progress and also my own as I train and hopefully get close to over 30 miles by the time the walk comes round!