So in lieu of being given much of a plan, I decided to make my own. On the Thursday my parents were turning up from Australia to come stay with me and be my eyes and support. On Friday I had my next chemo, so it made sense to me to stay in hospital until then, and head off home on Friday after it finished. So I started putting it around that this was what was happening. When the nurses started saying ‘I hear you’re going home on Friday’, I knew I had succeeded.

The Occupational Therapy (OT) team had kept checking in on me, the lovely Australian girl who had only been at UCLH for 3 days (well in that case, ‘welcome! Please step into my office!’  I’d said, hilariously when she’d told me), had no idea about blindness, but she did take to Google to see what was out there and where I might find some support. Which was more than I could manage. With regards to letting me go home, they didn’t seem interested in checking I had someone to cook my meals or do general life-sustaining tasks for me, that I could no longer do, (since they knew I lived alone), but were very concerned about whether I had any stairs or maybe a carpet which might suddenly decide to start jumping out and trying to trip me… I assured her I will be fine with stairs and rugs and that they were the least of my worries.

When I asked the random doctor (who kept turning up, with nothing particularly helpful to add) what support they were sending me off with, given I had just gone blind, she said, ‘Ummm well you have a follow up appointment at the Royal Free hospital in 3 weeks’. 
I’m sure you all remember the chaos and terror of my last adventures there…
‘Uhhh,’ I said, feeling the fear rising in my body as it remembered back to my last experience there. ‘Yes, but they just do eye tests and we know there’s nothing wrong with my eye. I don’t need people to put more drops in my eye and shine lights into it. That’s just a routine follow up that they automatically booked me in for immediately after my last appointment. I need support! I’m about to go home completely blind for the first time. Isn’t anyone going to give me some sort of assistance?’
‘We don’t know anything about blindness here.’
‘What, no one?’
‘No…’
‘So, hang on, are you telling me,’ I said, slightly facetiously, ‘no one has ever gone blind at this hospital?’
‘No,’ she replied completely seriously. ‘No-one here, none of my team or superiors or colleagues nor myself have ever come across anyone who is blind.’

I had no idea what to say to that. So I laughed, completely baffled by her answer. Later, my friend Sarah and I listed countless reasons someone might be in hospital having gone suddenly blind. What a cop out to say it has never happened. Could not have been more unhelpful. I think that was about the time I realised I really was going to have to work it all out on my own. The best they could do was to tell me there is a charity called the RNIB, who  my friendly Aussie OT person had tried to contact for me, (as had Rosa), but they had been fairly unhelpful and unresponsive. There was also meant to be some division of my local council that may be able to help, but apparently not yet, for some reason.

The nurses were getting a bit better, at least, at dealing with having a blind patient in the house, aided by time, the signs Rosa had made, and some great nurses who took up the flag on my behalf. I would occasionally hear someone saying ‘no you can’t leave that trolley there, that’s where Jen walks. You need to keep it clear’. But mostly it was said in past tense as an apology when I ran into the blood pressure monitor, the roving computer, or the lunch trolley.

Some nurses just never got it though. Like the nurse who said she was giving me my morning meds, but they never eventuated so when she came back a bit later, I asked.
‘I handed them out to you but you didn’t take it so I just put it over there…’
‘Oh!’ I said, surprised the handover on her shift hadn’t mentioned it, as they had got a lot better at passing along that piece of fairly important information. But no bother, I could fill her in this time.
‘Sorry, I’m blind!’ I said. ‘You’ll need to tell me what’s going on.’
‘Oh I know,’ she informed me, leaving me lost for words, and quite baffled once again.

Ma and Da had messaged me from the airport in Sydney where they were preparing to start their 24 hours of hastily organised flights, to let me know they were delayed, for what ended up being about 7 hours, turning their incredibly long day into a veritable marathon.

But back on the ward, it was Wednesday and my ward buddy, emotional support when trying to navigate around, my guide, my company through the long and lonely nights, and my friend, D, in the bay next to me, was going home. I was so happy for her, but was going to miss her. And I was slightly scared of having someone new in there who wouldn’t keep the curtains exactly where I expected them to be, and who mightn’t be quite so cool about me wandering around and ending up wandering into their bay when I got, as D called it, turned around. We had a big hug when she left, which ended up being quite late in the day after waiting forever for pharmacy, which is absolutely always the case.

I needn’t have worried though, as D’s bay stayed empty for the remainder of my stay. The next day, the bay across from D’s  also emptied, much to my relief. Which left just me, and the person across from me, as well as her almost constant visitor, my guardian angel, G.

On the Thursday, in the time between my Oncologist appointment, laughs with Rosa, and waiting for my delayed parents to arrive, G made me a cup of tea and we caught up. We were all planning and desperately hoping to escape the following day – the Friday.
‘I imagine that’s going to be a bit of an adjustment,’ he said.
‘Yeah, though I think it’ll be easier than this chaos! Though the outside world is a bit of a scary prospect.’
‘Are they at least sending you home with a stick?’
‘No,’ I replied, taking a sip of my tea. ‘They don’t know anything about sticks, they couldn’t even tell me where or how I might be able to get one.’
‘That’s ridiculous.’ He went quiet and thoughtful for a moment. Then he spoke again. ‘I wonder if you can get them on Amazon. Let me look.’ A few moments later he confirmed you could.
‘Do you want me to order you one?’
‘Oh G, that’s so kind of you!  But you don’t need to do that. I’m sure I can get my parents to do it when they get here.’
‘No don’t bother them, I’d love to get you one if you don’t mind. I can order it now and it’ll turn up tomorrow. I can bring it in with me.’
‘But it might not turn up in time and hopefully we’re all outta here tomorrow.’
‘Then I’ll drop it around at yours on Saturday. All good. I’d really love to help you out.’

I wanted to save him the trouble, and the 10 quid. But then I heard D in my head reminding me to let people help, That when people offer, it means they actually want to help. So I thanked him very much, and it was ordered.

So finally, we found ourselves at Friday morning. My parents had arrived the previous afternoon and had dropped in briefly before going back to my flat to crash. They came back on Friday ready to take me home. But first, chemo. The nurses got my chemo started around lunchtime, so we were hopeful we wouldn’t escape too late. Though there was always the dreaded pharmacy which could take hours.

By the time G had to leave home to come in, the stick hadn’t arrived, which was obviously fine. But then a couple of hours later, he came into my bay and said ‘hold out your hands…’

And just like that, I had a stick!

He later explained to Dad that he had asked a friend to go by his house and see if it had arrived. It had, so the friend had driven it over from Chiswick to drop it off at UCLH for me. The world doesn’t deserve these wonderful people!  

The chemo finished fairly uneventfully, we packed up my bags, and settled in for the long wait for pharmacy. With two beds in our little section now empty, it was just G and his friend he was visiting, and us. We started talking music. His son is a drummer, and G got his iPad out and played us some videos of his son’s band performing live. There we all were in a hospital ward as the sun went down, watching, (or listening) to rock music.

Eventually the nurse came over and told G they had their medication and they could leave. To us they said: ‘The pharmacist didn’t like the way the doctor wrote ‘Gabapentin’ (one of my meds, which I didn’t really need more of yet anyway), so they just put it aside and left It. The nurse asked them to sort it out, but It was hours before they got the doctor to rewrite it in a less offending manner, and restarted the order, so that we could finally leave. We were all absolutely exhausted. Me, as the chemo started wandering around my veins, and my parents having only just arrived the previous day.

G and his no-longer-hospitalised friend escaped much earlier than we did. And as he wheeled her off in her wheelchair (after bestowing on me the most heartwarming hug), we honestly all thought he might just float off, back to the mythical realm of wonder he surely must have come down from. And since I couldn’t see his exit, I can’t confirm that he didn’t.

It was 9pm by the time we bundled ourselves into the Uber that pulled in to the quiet one-way road behind UCLH. I sat in the complete darkness and as London stretched out before me, I could have really been anywhere. The feeling of the leather seat against my body, the seatbelt across my chest, the sound of the engine, the pull of sliding around the corners, reminding me I had left the hospital behind. But there was a whole, unpredictable world just outside those windows, and although I had pinned all my hopes on getting out, getting home, the reality of it was that not much else would change – I would still be blind, I would still have rapidly progressing cancer. My life as I knew and loved it was over.  Mum, Dad and I fell back exhausted into my one bedroom, flat where we would all be living for the foreseeable future, and stayed up until midnight trying to sort out the meds I needed to take, and various other time sensitive tasks that needed to be done. But at least when I finally laid my head down against my pillows, I knew it was the stack of MY pillows, on MY bed, carefully stacked in a specific order that makes the fact I have to sleep sitting upright at all times, less of a chore.

Maybe being home couldn’t fix everything, but it was a damn sight better (and safer) than the other option. So with that, Clarence and I shut our eyes and snuggled in for a night of sleep involving no abrupt 2am wake up by a hand on my arm to check my blood pressure.