22. Getting home

I think it’s fair to say that, in the past few weeks, a few scary things have happened. Some have been far more scary than others, but some have just been little short of mind-blowing (no pun intended).

Priority one – survival 

The primary objective of surgery was to remove the lesion in my brain, and stop the damage it was doing – this was a success and I survived the operation… win #1.

We’d been warned that the risks involved in Neurosurgery could potentially leave me with anything from brain damage to full recovery – so seeing me up on my feet again after the lung drain was out, was obviously win #2.

But we’d also been told that, immediately after surgery, I was likely to be in a worse state than I was before. But as my body recovered, only time would tell how much damage would be permanent and if / what I’d get back. In my mind, I was mentally trying to prepare myself for the worst, but I’d also had some awesome messages of hope from friends who’d seen first-hand, some amazing recoveries and been blown away by how the brain is able to rewire itself. So I hadn’t given up hope.

Priority two – recovery

So the next stage was to move back to OLVG (where my Oncology team is based) and see how my body would recover. This would then determine what aftercare I’d need. A rehab nurse came to see me before I left the VU and outlined three potential options:

1. I’d be able to go home
2. I’d move into a rehab centre for specialist care
3. I’d need full time care in a nursing home (like Ellie).

By Thursday, option 3 was already coming off the table, as I was up and walking about. But we weren’t seeing any progress in my wrist or hand. It just looked like a lost limb which was dangling at the end of my arm.

 

Grab and grip, baby!

By Friday, when the rehab nurse came back, I was just about able to move my fingers as a group – only a millimetre or two, but it was movement! He then asked me to spread my fingers out. I couldn’t. Try and move your thumb on its own. Nothing. It sounds such a simple thing, right? And it’s something you just do without thinking. But if you think about how you pick up an object like a pen, a water bottle, a kettle… if you can’t extend your thumb/finger to grab it, then have the strength to close your grip and lift it, it’s quite a debilitating thing.

So there’s my first target – I need to be able to grab and grip. (He did ask me to try and touch my nose, but with a head full of bruises as it is, I’m not even going there yet… although dad keeps asking me to try it, entertainment value, clearly!)

Option 1 aftercare

By Saturday, I took my first shower unaided. And that was massive. Before then, I’d had to ask someone to wash and dry me while I sat on a seat in the bathroom. No shame in that, but the sheer delight of being able to do it alone was moving me further towards option 1 of aftercare. AN: it did take me a good 20 minutes faffing to get my underwear the right way round with just one hand, by which time my back was dry and I didn’t need help with it, but I was still taking the win!

I was continually seeing more movement come back – literally by the millimetre – and every step felt like progress. But on Sunday, things hit a whole new level.

OMG what’s it doing in there?!!

Remember the scene in Terminator 2: Judgement Day, where the Terminator cuts back the skin on its arm to reveal the wires and mechanics of the robot inside? Well in the shower on Sunday morning, my left wrist and arm suddenly started tingling. It was like it was trying to rewire itself inside, and I could actually feel it working! At first I went into geek mode and was like “OMG this is awesome!” But then my excitement changed to fear – what if it was something breaking up? What if it was frazzling itself? And the sensation I was feeling completely unnerved me. Mum and Dad had brought me out for the day, and I suddenly didn’t want to be far from the hospital in case my arm exploded – how nuts is that? I took a moment, breathed a few Ommmms and decided not to worry – whatever was going on in my arm, I just needed to focus on my exercises, my grab and grip, and keep working at it to help my brain rewire.

I’m still feeling the tingling in my arm now, but with every day I’m seeing more strength, flexibility and movement, so I know it’s rewiring itself – the fear is gone and the hope is back 🙂

 

Small steps and big milestones

It’s not going to happen overnight, but every day I’m seeing progress, and the little things just feel like triumphs…

• Sunday – climbing the stairs (I needed to be able to climb three flights up/down before I could go home, as I live in a 3rd floor apartment with no lift). I thought I’d manage maybe three or four steps? I did 13… #boom
• Monday – holding my toothbrush in my left hand while I put toothpaste on with my right – it’s a small item to hold, but it’s grab and grip, baby 😉
• Tuesday – holding a piece of toast still on a plate with my left hand while I butter it with my right.
• Wednesday – coming home…

#BoxyOut