Since Monday, I’ve posted a few pictures – mostly on hospital beds, thumbs up and smiling – but like the previous post, the reality behind the smiles isn’t always as rosy as it seems. So again, in the hope of being honest, but in the spirit of being Boxy, I’m going to share a little more detail of the last five days in hospital. And I’ll try again to keep it brief, as it’s not all pretty, and some things people just don’t need to know!
I was told I needed a drain in my lung. I was told it would be uncomfortable. I wasn’t told it would cause excruciating pain every time I breathed for the next three days.
The drain went in under local anaesthetic. Wasn’t too bad, and a lovely nurse called Margo held my hand throughout, talking to me about The Good Life, growing vegetables, and whether the Yorkshire Dales are better than the Moors… she clearly knew what was coming.
As soon as the anaesthetic started to wear off, the pain started.
Mum and Dad arrived around 7am and shortly afterwards, I was taken down to the anaesthesia room and prepared for surgery. A quick thumbs-up photo and I was away.
By mid afternoon I was coming around and, ecstatic to be alive (see previous post) was clearly happy to pose for another thumbs-up photo. But behind the smile, when the surgeon asked his second question of “can you lift your left arm?” my response was far less happy. “No – it hurts too much.” The pain from the lung drain was excruciating – every time I breathed it put pressure on my lung, and I literally couldn’t move without squealing. But they had checks to do, I was post-op and they had to monitor me for the first 24 hours – pulse checks, blood pressure, blood sugar, oxygen levels… and a different face arriving by my bedside every hour, all with different and important roles, but all saying / asking the same thing… How do you feel? Do you have pain? How bad is it on a scale of 1-10? Can you lift your arm?…
After the first 24 hours, I was on so much morphine, I just laid on my back and let them get on with it.
24 hours in, I was moved back to the ward as I was apparently the best patient – thank god for morphine! But then then the checks moved from close observation to more specifics, it started to get harder. I need an X-ray to check on the lung drain – I wanted it out, as it hurt just to breathe, but being wheeled down to radiology and lifted onto a metal plate to get the Xray the pain went through the roof.
By Wednesday night, I’d been flat on my back, taken more morphine and steroids than you can shake a stick at, not been to the toilet in three days, and in one horrific night, gave up all dignity, learnt to use a bed pan, had two bed washes, and experienced what the Dutch nurse described as “the Big Brother” – I’ll leave that one there…
The first person I saw on Thursday morning was the Lung Anaesthetist – one of the loveliest people, with whom I had a love/hate relationship – I hated her because she was responsible for the lung drain, but I loved her because she held the key to getting rid of the damn thing! She told me she wanted another X-ray to see if they could take it out – the thought of moving onto that metal plate again was awful, but compared with the pain of breathing, and the thought of another night like the last – I’d have done anything.
They wheeled me back down to X-ray and I remember just feeling like crying. I’ve hardly done that all through this… I’ve had emotional moments where I’ve welled-up or wept a little (usually then saying “sorry” and just grabbing a tissue) but this was more like a sense of watching life through the bars on a bed – being wheeled into a lift, down a corridor, people talking above your head, in a different language, you give up trying to figure out what they’re saying and you stop bothering to say “Ik spreek geen Nederlands, sorry, ik ben Engels”. I’ve no idea how long I was lying there waiting – it felt like forever – but once inside, the team in X-ray were super and must have clocked all this on my face. They called in a few extra hands to help move me onto the metal plate as gently as they could, and within no time I was back up on the ward.
An hour or so later, the Lung Anaesthetist reappeared and told me she was going to take out the drain, like, right now! OH MY GOD!
She removed the stitches, and told me to take a deep breath in, then blow out hard and fast. I figured the second move was where she’d pull out the tube but I didn’t care… I breathed in… and by god did I puff out!
The pain level dropped from around 10 to 2 in that one move. Mum and Dad appeared at the door of the ward, to see me sitting upright on the side of the bed, beaming from ear to ear and ten minutes later I was up on my feet walking (very slowly) straight to the bathroom!
Thursday night I slept – maybe for an hour or so – but I slept 🙂
We went and had coffee downstairs in the cafe – in a wheelchair, not a bed – I could see out of the window, I was smiling at people in the corridor again, saying “geode morgen” and for the first point since Monday, I felt like me again.
The Neurosurgeon swung by around 11am and confirmed he was happy he’d got everything out, and by lunchtime I was in an ambulance being transferred back to the OLVG hospital (where my Oncology team is based), ready to start the next stage of recovery.
The next few days and weeks are a waiting game, as we see how much of my mobility comes back. But since the drain came out, every step so far has been in the right direction – and that’s the main thing.
- I can walk; albeit slowly and not far yet, but I can walk.
- I still have some strength in my arms and legs, but not stability or stamina; much of that is down to painkillers, steroids and being in bed for days. But each day I can go a little further and do a little more before I get tired, so in time I’ll rebuild my strength.
- I can now lift my left arm; the stability isn’t there yet, but I can lift it.
- I can just about stretch my left fingers – remember the video in Rhodes – yeah I’m not there just yet, but as soon as I am, there’ll be a new video!
- My next step is to be able to pick something up – just something like a toothpaste tube or a water bottle – I have just about enough strength to grip something if I use my right hand to put it in between my thumb and first finger in my left, but I can’t reach out and spread my left fingers to put them around something.
Mum and Dad say they’re seeing huge progress every hour. And I know that’s awesome, But I’m also the most impatient patient in the world! And I know I have to give myself time for this. So if I feel tired, it’s OK to lie on my bed and close my eyes or put my feet up. If I’m ready for bed by 7pm, that’s fine – I need to listen to my body and do what it’s telling me it needs.
In the meantime
- I wake up in the morning and I lift my left arm – win.
- I stretch my left fingers – win.
- I walk to the bathroom – win.
- I eat my breakfast at the table, not in bed – win.
- This morning I showered myself without help for the first time in two weeks – it did take me a good 20 minutes to unravel my undies and get them on the right way around, by which time I didn’t need anyone to help dry my back, so this could be considered cheating, but I’m taking the win!
And as my Oncology team aren’t meeting to discuss next steps until Monday, this weekend is all about relaxing, recharging, and enjoying a few days’ respite with Mum and Dad. And that’s as important for them as it is me.