Saturday, October 27, 2012

Not a good night for a car alarm.

After the excitement of being set free, I wasn't sure how I would feel.

Physically, I'd kind of got used to the tight feeling of the bandages (although I couldn't feel my ears), so when they came off, my head felt loose - like lopsided. It moves when I laugh, I'm not sure which part of it moves, but it definitely moves. And when I raise my eyebrows. And it feels heavier on the right.

I guess it will take some getting used to and it will start to knit back together soon. But mentally I also wasn't sure how I'd feel.

It was amazing to get home and see Neville and be among my things again. Mum had made the house really nice and washed everything that I might even think about using for sterility. It was incredible. Beka came over and we had a lovely evening just reeling in wonder. What a month! Then I went to bed. My first night without the bandage, how would that feel?

Turns out pretty weird. I can feel pulsing in my head, I'm convinced you could see it if you look hard enough, but lying down made the bone creak. It wasn't unpleasant unless combined with the pulsing - which made it... rhythmic...

In hospital I don't think I dreamt. As we went to bed I was extra cautious with my head placement (to minimise rhythmic creaking) and surprisingly dropped off easy enough. Only to wake up at half past two - in hysterics.

There was a car alarm going off outside that I had been dreaming was an alarm in theatre. I don't have specific recall of the dream but it was clear that something had gone wrong and it was to do with my head. Poor Olly. It's been years since I had a nightmare.

It's good to be home :)

That was quick!

There I was sitting on my bed with my legs crossed when my support nurse appeared and proclaimed "you're going home!". Behind him lurked a nurse who whipped off my head bandage while I reeled in terror at the thought of my skull coming apart (it didn't), they threw a bag of drugs on the bed and stood there, hands on hips, grinning. What was I waiting for?


So let me recap the past few days. It's a shame I wasn't strong enough to capture the thoughts down as I was going through them but I'll try to give an open overview as possible. This may read like a list but I think it's important to try and remember everything.

After being told I was first on the list at 2am on Wednesday morning, I felt relief. That the waiting was nearly over. In the morning I was showered and gowned and ready when mum and Olly turned up and we sat and waited. They came for me about 9am, all the nurses said goodbye and good luck and it was all I could do to smile.

But first I had to have a quick CT scan... while I was waiting in the corridor my surgeon told us there were some operational delays in theatre so to take me back to the ward, my heart sank. Then a VERY poorly man was wheeled out the scanner in front of me and I wondered if that was what I would look like, after...

Back on the ward there was a chatty woman next to me which I didn't appreciate. I'm afraid I was quite rude, demanding that my curtains were pulled in her face. In her face. The dye they give you during a CT scan made me feel weird (more weird than waiting for brain surgery?) and I started to get anxious. I just wanted to get the waiting over. But I didn't want to go through with it. I wasn't feeling very brave.

Finally they came back, and in the lift I started to get hyperventilatey, Olly held my hand and we just looked at each other. This was it.

They wheeled me into a waiting area and put a screen up with fish on it. Earlier I had been explaining to the lovely nurse that was with me how my three year old niece thought I had a brain tuna. This seemed very appropriate and we laughed, then suddenly I was crying. Dammit. I didn't want to cry now. But it was over soon and I held it together. It was only because she was nice to me.

Then I was in the theatre. I tried not to look at the equipment too much and to focus on the anaesthetic going in. It seemed to take forever and they were sorting through paperwork while putting cannulas in... I got the impression there was some hold up and I'd dozed off.

Then when I came around I was still expecting them to be fiddling about with it. But there was my surgeon and they'd done it! I was so surprised! And relieved, it was over... and I'd survived!

It's hard to remember what happened in the recovery ward although I definitely have a vision of my surgeon bounding around telling me that it went really well, and more importantly he managed to shave my entire head except for a tuft the he could't get to because of a clamp. I remember thinking that was the last thing I cared about but it was funny and sweet that he'd taken my request so seriously to shave as much off as possible. He was clearly buzzing after surgery.

I wasn't in recovery very long and they were pleased with my progress. So about 5pm I was wheeled back to the ward. I could hear mum in the corridor and suddenly there they were in the lift. Olly! And mum! I don't know what we did, it was all a bit too much.

I slept a lot for the rest of the day, I don't remember much until someone reminds me - so it's in there but  not at the surface. I forgot Flora was there until the woman in the next bed asked me yesterday if that was my nephew (haha takes after me) who visited. Then I remembered her being there, very strange.

That night I was in and out of what felt like consciousness. Olly stayed with me until 11pm although I was pretty much uncommunicative. I couldn't understand why he kept grinning at me.

In the morning I felt better. I had breakfast in the hope that I'd get stronger quicker, but it made me feel a bit nauseous. I was worried about moving. They'd given me some pain killers in the night but I was terrified of moving my head in case it hurt. If I stayed completely still I could still pretend that nobody had sawed open my skull. There was a very tight bandage on it that felt like it was totally holding my head on, but I was worried about moving.

The day shift came on and they tried to get me out of bed so they could change the sheets. As they sat me up, I caught sight of my drain (draining liquid out of my head), and that freaked me out. Some, what felt like bubbles and suction and liquid moved - inside my head - and it was very disorientating. It was very hot in the ward and I couldn't cool down. And I was still feeling nauseous from breakfast.

I felt better after I vomited and it was lucky (or unlucky for them) that mum and Olly arrived just before my performance. I decided not to try and move until I was ready, after that. The drain was due to come out later that day and I felt like I would prefer not to move until then.

The woman across from me told me to be careful catching the drain as it really hurt. Then she screamed  and wailed loudly when hers was taken out, so although I was looking forward to it being taken out I was slightly apprehensive, to say the least. In the end it wasn't that bad. And a relief to be free of it. They removed the remaining cannulas and I was promised that I could have the catheter removed on Friday morning.

(For the record, the catheter wasn't that bad - a bit uncomfortable when you catch it but worth it to not have to get out of bed for the toilet. And removal was fine too. Don't know what I was worried about.)

By the end of Thursday I was feeling really strong. Mum and Olly brought me in some food and I felt stronger still after that. I was desperate to have a wash and get in my own pyjamas but I still had the catheter in. I vowed to be up and about in the morning. That night I think the anaesthetic finally wore off and I stopped falling inexplicably asleep at the drop of a hat. I spent the night dozing and was awake from three, impatient to get the catheter out and in the shower. I was convinced I could do it.

The nurse took it out at 7 (I was clock watching!) and I had a weetabick for breakfast - I was in bed 1 so they came to me first, I didn't realise how much currency Weetabix has in the Murray Falconer ward. As I waited for the codeine to kick in I got a visit from the Occupational Health team. They said they'd come back in half an hour and we'd go for a walk... I started to psyche myself up.

The day shift came on then and wanted to change my sheets, I thought this would be a good opportunity to get out of bed. They said to take my time but I was surprised how easy it was - I was stronger than when I went in! But I was moving my head carefully and staying very upright.

This gave me confidence for when the Occupational Health team came back. We walked down the corridor and up two flights of stairs, down again, around the ward and back. They were very pleased and said as far as they were concerned I could go home today. Hurray!

The ward round doctors had said I could go home Saturday or Sunday so I wasn't getting my hopes up - but I resolved to impress them with my mobility, just in case. And went for a shower. Oh what a relief to get into my own pyjamas, and feel clean again. It was like coming back to life. I knew when I put the gown on that it would be a marker to get back into my own clothes, but it felt better than I was expecting.

All day, I kept sauntering up and down the corridor asking for bed pans - they were measuring my output as you can't go home until they are happy you are passing enough - showing off. When I put my mind to it it turns out I have an unrivalled capacity for water drinking.

Then my support nurse turned up and was really impressed. I told him about the possibility of going home today and he went to ask the surgeons. What service.

So here I am. At home. It's so good to be home. It's funny how well I feel, I've been eating well and getting my strength up, but I'm hyper aware of my head position at all times. It feels weird to be so well recovered already.

When I came out of hospital last time I had a bit of a euphoric period followed by a down period so I'm just playing it by ear. But for now, wow, who'd have thought I'd be home literally 48 hours after being returned to the ward after brain surgery?