The constant darkness gets to me.

It is unrelenting. Every morning when I open my eyes, instead of light rushing in and showing me a beautiful new day is out there waiting for me to discover, my poor sleep-infused brain is hit with the crushing realisation that opening my eyes changes nothing. I have no idea if it’s morning and time to get up, or if I’ve woken yet again in the middle of the night. Thankfully I have a little robot friend who helps me with the time conundrum – my talky clock, which is basically just a big button that loudly announces the time when I push it. Brilliant invention.

But every time I open my eyes again, or uncover them, after a significant period of them being closed or covered, my 36 years of memory of being sighted takes over and I have a split second of shock about my unexpected darkness, then I have to realise all over again that I’m completely blind, and I start afresh my grieving for my sight and the life I can no longer lead.

Try to concentrate on what you DO have rather than what you DON’T.
It’s a good idea in theory, and one that is never far from my mind – focusing on what I do still have rather than everything I have lost. But the fact is that my life has become defined by the things I can no longer do – live alone in my flat, pop out to grab the milk, edit audio files, so that Katie and I can finally release the podcast we’ve been working on (anyone out there know anyone in the audio engineering world??!), cook dinner, get myself anywhere, use the messenger app (no Siri support), wander around the city I love more than anything…

But still, there is a thought that terrifies me even more. It’s one of complete silence joining the complete darkness. I know there are people who are both deaf and blind, and in a thought that is both patronising and incredibly unhelpful, I don’t know how they do it. The idea of no longer being able to hear what is going on or communicate with anyone, on top of not being able to see a thing is absolutely terrifying. The isolation and confusion and claustrophobia that I already feel surely becoming unbearable.

But would it be preferable to death? Presumably, I suppose. We humans somehow find ways to continually cope with situations that were once so far beyond our realms of comprehension. Resilient little things we are.

As I booted up my laptop this morning, I was listening to an audiobook by V. E. Schwab, which described death as ‘the greatest physical and psychological trauma possible’. It certainly terrifies me. But so does the thought of losing the remains of my hearing.

Well… Since about the second last week of RT mid March, I started going deaf. Almost completely deaf. It’s horrible. All the things I fear the most just keep happening, and I’m expected to just keep tottling along with a smile on my face. And mostly I do. But those weeks after RT, my body mind and soul feeling completely shattered, too exhausted to even listen to messages from my friends, let alone fight with Siri to reply, it became a lot more difficult to find that smile. Those dark days felt very dark indeed.

Thankfully, I had one hearing aid for my already deaf right ear, caused years ago by cancer progression. It became my one saviour, and my long-time deaf ear became my best ear, thanks to the tech.

Ok, so, why did RT cause me to lose my hearing? A great question, but one they didn’t really have much of an answer for, as seems to be the case more often than not these days. The Onc said it could be (irreversible) damage to my eardrum/canal/tubes/surrounding bones, caused by the RT. But I was having none of that. I explained to him that it was temporary, due to liquid or mucus that was trapped and couldn‘t drain out. He agreed that it could be the case. I wasn’t entertaining for even a moment that it might be permanent.

I asked my friend L from Enhanced Supportive Care if she might be able to wrangle me a referral to audiology. Last time, the whole process took a great many months from requesting my referral to getting my hearing aid. So I hoped we could get the ball rolling.

Miraculously, an appointment popped into my app for just over a week away! So we all trotted along to meet the absolute Angel, Audiologist Amy. I hesitate to use the ‘Angel’ word when talking about people who work in the NHS. I think it’s unhelpful; to paint these very hard workers as people who are there because they’re divine beings with a calling to help people out of the goodness of their own hearts. I mean, of course, that is often also the case, and the people I know who work in the NHS are absolutely angels. But I think it’s much more helpful to see and paint them as regular people who generally require probably much better pay and working conditions. I have a friend who works part time as a doctor, and her three-day week means a 40 hour week Try getting your head around that.

Anyway, Audiologist Amy burst in, a marvellous explosion of colour and delight, and took us up to the 5^th floor. She started by testing my ears, and confirmed that my left one had joined my right in the world of deafness. She then looked in my ears, and said it very much looked like it was just trapped liquid, which should be pretty easy to fix, either with a grommet, or by making a very small incision in the ear drum and sucking it out. Didn’t I tell you it was just going to be something simple and reversible? It sounded a little scary but as it was apparently unlikely to clear on its own, I was keen. I was delighted to hear that she would refer me to her colleague, long time friend here on The Cancer Chronicles, Hala!

But for the time being, Amy was going to set me up with two brand new matching hearing aids. And immediately, I felt relief wash over me, pushing the fear slightly towards the side. Amy had such a lovely way about her, and she managed my blindness masterfully. She manoeuvred me around the little room so well, and we had a lovely little dance together from chair to chair. She also spoke in a way that I had no trouble hearing even when the hearing aid was out. But she got them both adjusted and ready to go, and I could finally hear again!

And oh, the timing! For the following three days I was heading into the studio with non other than our fave Rosa, to record the audiobook version of my novel, Rebel Rebel! What a glorious three days it was, holed up with my friend Hayden in his studio, while experiencing hearing my words get given a whole new life by my best mate. And just… wow! I was speechless! I know how good she is, I’ve seen her in many plays and on TV (did you all spot her and her now renowned ‘side-eye’ on the latest series of Bridgerton?), but she still blows me away afresh every time. And this was next level! Bringing all these characters to life and seamlessly maintaining them all as they interacted… Yeah! Wow! Big wow! And I was able to clearly hear it all thanks to my new ear tech! I can’t wait to share it with you, hopefully soon. It’s currently in editing.

Hala got me in the following week, which was incredible. And it was lovely to get to cross paths with her again. She seemed to be working from outdated information, having only looked at a scan from way back in December, which apparently showed that there was some liquid in my right ear (the original deaf one), that she thought was the problem ear now. And she explained that there still wasn’t much they could do for it, but they might be able to remove that small bit of liquid for a slight improvement.

But no, I was in for something else entirely! I wanted her to fix my other ear! A brand new problem that appeared in March, long after the scan she had. I think she was a bit confused, but I got her to look in my ears, and she immediately got what I was talking about.

‘Oh yes, we should be able to suck it out, no problem!’ she said, to my great relief.
She assured me it would be a tiny cut, like a pin prick. She first filled my ear drum with numbing gel, which is one of the weirdest things I have ever felt. I stated out loud how weird it felt, then just started giggling uncontrollably. Then we went to wait for half an hour for it to start working. I hardly felt the incision. The suctioning felt very weird and hurt a bit. But almost immediately, I felt the benefits. My hearing was returning! And rapidly! After a bit more hoovering, the job was done, and my hearing in my left ear was restored to all its former glory. I thanked her profusely, and we made an appointment a month later to check in and perhaps do the same with the other ear. It won’t have the same effect, but considering my right has been a bit sloshy since radiotherapy, it seems worth a try. Bring it on!