On the day the world went dark, I was comforted by the fact that I could very vaguely still make out the tattoo on my wrist that matches my parents’. By the Thursday, I no longer could. On the Friday morning, I woke up on ward T13, by the window, squinting out at the skyline I had gazed upon so many times from my hospital bed. On the horizon, I could maybe make out something that must have been the darling BT tower. By the next afternoon it had all finally left me. The world had plunged into complete and utter darkness. Whether my eye was open or closed made no difference.

So, at around 11am on that Friday morning, my phone rang. I tried to pick it up but every different calling app requires a different way of picking them up. Some require taps on the top, or the bottom, to the left, or the right, and some want a tap and slide. I thought I’d missed it, but then realised there was a voice coming out of my phone. It was my oncologist.

The scan from Thursday morning showed that the cancer had started progressing again. And rapidly.

Of course it had. The day I’d gone into A&E, Rosa and I had emailed my cancer metabolic health specialist to ask if she’d ever heard of hyperbaric oxygen therapy turning people blind. Her quick reply was that yes, although it was incredibly rare, she had. I was sceptical, as the clarity coming from hindsight was telling me that things had started slipping before I went back to hyperbaric after my week off. But it had been a nice bit of hope in the meantime, as it would have meant my sudden onset blindness would be reversible. But with the certainty of that scan, the last of that hope dissipated. Even with the warnings, even with the planning of what to do when it happened, I still never thought it actually would. I never thought I’d go blind. But then again, why waste time thinking about it before I needed to.

That year I got, that freedom, those magical moments I‘d had since I finished radiotherapy, had come to an end. It wasn’t long enough. it’s never long enough. And now I also had to contend with being suddenly blind…

The next treatment they had to try (and thank goodness there was one) was another type of chemo. Gemcitabine and Docetaxel. My oncologist assured me he would do everything he could to get me started on it asap.
‘Maybe over the weekend,’ he said.
‘Please,’ I implored.

Some doctor came in to consent me for the chemo and I somehow scribbled some sort of a signature. By around 4pm that day they had me hooked up to my first 90 minute infusion of Gemcitabine.

That Friday was my mum’s birthday. We video called – them with glasses of champagne, me with yet another lot of rubbish news. I couldn’t see them, but they assured me that Clarence and I were looking fab. They were going to look for flights and come over from Australia so I could get out of hospital.  The relief at knowing they were coming over washed over me. If my parents are here then I can get out of hospital and get home to my flat. It would all be ok if I could just get home.

The chemo was to be a repeating (if it works) 21 day cycle, as an outpatient (which would be a new adventure for me – no Cotton Rooms this time). Day one of the cycle would be a 90 minute infusion of Gemcitabine, then day 8 would be 60 minutes of Gem followed by 90 minutes of Docetaxel. Then off home to recover and hopefully avoid neutropenic sepsis.  All the usual side effect culprits – hair loss, mouth ulcers, nausea, vomiting, neuropathy, etc. I hadn’t even got the chance to find out whether my wonderful, beautiful, beloved period was going to come back to me after the last lot of chemo took it away 2 years ago. Once again, I was about to go back into chemo just in time for my birthday*. This was becoming a habit.

I was happy they had started me so quickly on the chemo. I thought for a moment of all the people I had read about, who had been given similar dire news as I just had, and had instead declined the offered treatment, rather choosing to go off and do <insert alternative treatment here> and often went and achieved radical remission (though you probably don’t hear about the ones who don’t). Not that I ever thought I would do that – my adventures have led me towards adding complementary treatments into my regime to hopefully eke out more time, but in that moment of getting told about the rapid cancer progression, I just knew I needed to get that chemo in me as soon as possible. I’ll take anything that might have a chance of working.

My parents were coming over from Australia, and Rosa was coming to visit me tomorrow. I’d never wanted visitors when I’d been in hospital before. My friend Nat had once been allowed to visit me years ago when I was on the ward – she hobbled in with a moon boot on and we’d made a fitting double act. But I usually preferred to just wait until I was out and feeling better to see people. But this time I couldn’t very easily entertain myself in hospital, or even text my friends. And I felt more alone and isolated in my blindness than I ever had before. Suddenly, hearing my friends’ voices, feeling their presence and their arms, having their company (not to mention getting some tech help) was everything I needed.

In fact, that Friday morning, I had a scary tech crisis. I could no longer use the passcode to open my phone, and somewhere along the way my phone had stopped recognising my face. I’d got a new phone just 3 days before I ended up in hospital. Lucky, as my friend Katie pointed out, that I’d set up Siri on it… but that Friday morning, my phone decided to lock me out entirely. The nurses were mostly scared of iPhones, but eventually I found one who was willing to try and we managed to remove the passcode. Phew! Things got a whole lot scarier when I couldn’t access my phone. It was all I had and although Siri was driving me completely mad, I needed her.

*Incidentally, today as I publish this post (with the help of my Mum), it is in fact my birthday. Happy 36 glorious years to me!