Operation Cavernoma Removal Day - 0 + 5

 I have an announcement to make. It's not earth-shattering to be honest, but it's something I haven't been able to say for a fairly long while.  I slept last night. Yep, I slept. Not just slept, I slept well. Whether it was because I was so shattered, or because Amy was potentially coming out of hospital today and there is a light at the end of the tunnel, I'm not sure. Whichever it is, I slept like a baby and woke at 7.30am. Unheard of.  

I had nothing to rush for this morning but I did have a dilemma. Do I drag my heavy bag to the hospital, ready to go and stay with Amy and Issy for a few days, risking Amy not actually being discharged and therefore having to schlap the case back again, or do I leave it, go to the hospital and then come back, get it and go back again if Amy is sent home. Since my decision making ability seems to have been left on a train somewhere, I couldn't decide what to do so I messaged Issy. She is very good at problem solving I've discovered. She didn't know the answer either. I think our mutual exhaustion is having a bit of an effect. 

I decided in the end to wait until I heard whether Amy was being discharged or not, though thought that if I'd heard nothing by 12.30pm I'd go without the bag and worry about the rest later.  

I had some long overdue admin stuff to do so used the free time to get on with it.  For one thing our gas and electric bills have gone though the roof. Yes, I know, cost of living crisis, energy companies, blah. But seriously, they're ridiculous. And checking online we have realised we're being well and truly done. So I tried to find a number to call Octopus Energy. Hmm. They obviously don't want their customers to call, there wasn't a number on the website. So I emailed and asked them to call because I wanted to change tariff. After countless emails back and forth I gave up. This is a job for another day, I really didn't need the added frustration.

Then I spoke to Linda. My day-maker it would seem. After my TFL rant yesterday, it turns out that if I buy an Oyster Card and upload my senior railcard to it (no sniggering please) I get very cheap fares into London. Who knew! So that's what I did, and it saved me a pretty penny today I can tell you. Clever Linda!  Not only that, but Linda also signed up for the walk today. Double day-maker! The team is growing, there are four of us now, and the sponsorship is rising, it's wonderful!

So, after my very exciting trip to the station I hopped on a train to the hospital. Before I arrived, Issy texted to tell me that Amy was indeed being discharged. Whoop whoop!  When I arrived Amy was dressed and ready to go and all she needed was her meds and paperwork. That was at 1.30pm. I think we got out of there about 5pm in the end and by the time we did, Amy was absolutely shattered. We got a cab back to her flat and she snuggled under a blanket on the sofa. Her speech was iffy to say the least, tiredness had really caught up with her but she will be very happy to be in her own bed tonight. 

She had been picturing fish and chips as her homecoming meal so when Paul arrived, he and I nipped down the road and picked up fish and chips for Amy and Issy and Issy's mum, Tamsin. It was arranged that Tamsin would stay tonight, and I'd go back with Paul and get my stuff, and return in the morning and then stay for a couple of days until they feel confident and comfortable, and are sick of the sight of me.

And so I gathered up my new and shiny Oyster Card, and off we went, leaving them in peace for now and hoping that Amy gets a good night's sleep at last.

Amazing to think that just 5 days ago, Amy was having her operation, we were all so scared and worried, and now, in time, we know that all will be as it should be, and Amy will probably never have to think about that pesky Cavernoma again, and that thought makes us very happy.

But we do spare a thought for all those still living with this rare disease. Some will never be as 'lucky' as Amy and they will always have their Cavernomas. Some will have to go through the ordeal that Amy has been through, and some will have to live with life changing symptoms or make that difficult decision to go ahead with surgery.  That is why the walk I'm doing is so important. And this blog, in it's way. To raise awareness and to support Cavernoma Alliance UK in their incredibly supportive and informative role. So over the next few weeks and months, this blog will go back to being about the walk, but I will never lose sight of why I'm doing it and what it's for and in that way, neither will you.