I have this feeling that hearing aids aren’t considered very cool, generally. I don’t know why, I’ve never had an issue with them, I’ve always thought they were pretty bloody cool technology – anything that helps someone to function better seems pretty great to me! But there does seem to be a resistance to getting them. Maybe mainly within the older population? There’s the story of older people going deaf but refusing to admit it and refusing to get a hearing aids to help. I wonder what that is – is it shame? That you didn’t… look after your ears well enough? Or is it admittance that you’re getting old and just don’t feel like you’re actually there yet? I’m not really sure what drives it, but hearing aids seem to have a bit of a bad rep…

But I don’t see what the shame is in getting something that will enable you to hear better… In no longer having to ask people to repeat things two, three times. In no longer missing out whole chunks of conversation… Or feeling angry that people aren’t ‘speaking loud enough’ or ‘clear enough’…

Though I guess they say it’s most frustrating for the people around who have to keep repeating everything. I certainly make an effort to speak more loudly and clearly around people who have issues hearing – I know I’m always grateful when someone repeats what they said slightly louder for my benefit if I couldn’t hear it the first time. Thanks everyone for your patience with me, especially in loud places. But still, I hate to think that my lack of hearing makes it harder for people to communicate with me. So I was obviously very keen to do anything possible to help with my deafness, if possible. If there’s something available that will help me to function better in life, then I’ll take it! Yes please!

Really, since my surgery in late 2020, I’ve had issues off and on with hearing in my right ear. I guess the surgeons have disrupted pretty much all of my passageways by this point and my poor lil ear has struggled. Then, since the cancer started progressing again in mid 2021, I’ve almost completely lost the hearing in my right ear.  My right side is all a bit weird – can’t hear, can’t see. People accidentally creep up on me. Or stand next to me on that side and I walk into them because I just can’t see or hear them. I’ve got a lot better at remembering to angle my good side to conversation, to sit in the best seat at the table to be able to join in. But I wanted a hearing aid. I wanted to be able to hear again. I have no idea how anyone would choose struggling to hear people over the freedom of being able to hear again. I hate it.

So. After a few appointments and referrals back and forth, and hearing tests, (you might remember the wonderful Hala, from previous Cancer Chronicles fame) I was referred to the people who handle hearing aids at the Ear, Nose and Throat hospital at UCLH. I turned up and the lady got straight to asking me what I thought was going to happen. I said that I’d been told there was something that could sit against my head which should hopefully allow me to hear again, and I was very interested in trying it. She said great, and got it out.

‘Here you go, this is it.’ She put a thick black elasticated band on the table. I laughed, assuming there was some sort of joke. She just smiled, looking slightly confused.
‘Sorry,’ I said. ‘Are you actually serious?’
‘Yes,’ she continued. She picked it up, holding it out as if to demonstrate it. ‘It sits across the front of your forehead and goes all the way around your head, like a headband (a thick headband, might I say, that you can’t even wear in your hair, it has to literally sit across your forehead). And you just wear this all the time.’
‘Hang on, what? I have to wear this thick tight band across my forehead… all the time…’
She nodded. ‘the disk here sits on the bone of your skull and picks up reverberations through that to send the sound to your ear.’
‘Well, that’s an absolute no from me. I’m obviously not wearing that… Does anyone say yes to this?’
‘Well yes, everyone does.’
‘Would you say yes to this?!!’
‘I… don’t know. I’ve never thought about it…’

I think for now, we’re going to need a show and tell. I snapped a quick photo when she briefly left the room, later on in this story.

Obviously, I wouldn’t be able to wear this for a few fairly significant reasons – the pain I have across my forehead from the cancer, the fact that my eyepatch even hurts to wear, not to mention, I ALREADY WEAR AN EYEPATCH ACROSS MY FOREHEAD. Honestly, I don’t know how anyone thought I’d be able to wear this too. I mean, I’m a big Mark Knopfler fan, but let’s just say he’s my musical hero, not my style guru (for those of you playing at home, the Jen Eve song Fading in fact states ‘I base myself on Knopfler, I’d say that he’s my hero now, and then…’).

‘I’m sorry,’ I said to her, ‘but this is not a solution. Who on earth actually accepts this and wears it?’ I was absolutely baffled that it was even being offered.
‘Well everyone, but of course you only wear it for a couple of years, then we’ll look to getting the implant put in.’
‘Implant? What implant?’
‘The implant you’re being assessed for, which will be drilled into your head under general anaesthetic once we’ve collected enough data using this. That’s the long term solution we’re working towards.’ She pointed to the huge black square on the model in the above picture.
‘Long term…?’ I blinked. ‘Um… maybe check my notes… We’re not talking long term. There are no long term options for me. And I’m certainly not having surgery to implant that in my head. Or anything.’

It was a fairly triggering thing to have someone talking multi-year solutions when the oncologists kept telling me my scans said I was about to die… And for me to have to be the one reminding my hospital of my situation… I’d been working so hard to try and ignore the Oncologist’s attempts to dash my hopes, and here I was having to parrot their words back at someone else.
‘What do you mean?’ She asked.
‘They all say I’ll be long gone by then… that I won’t last the week, the month, the year. Why is anyone trying to offer me things for the long term? I can’t have surgery on my head anyway because of where the tumour is. I just need something to get me through the days, to improve my quality of life now, to help me to hear again.’

‘Aww,’ she said, head cocked on its side. The pity stance. ‘Bless you.’
I bit my lip to stop myself from rolling my eyes. I didn’t come to be patronised, I wanted a solution.
‘Well, take it home anyway, and maybe you’ll find it useful at some point.’
‘Ok fine, whatever.’ I said, just wanting the ridiculous appointment to end.
‘Ok, I’ll package it up for you. Now, this is £3000 worth of kit, so if you decide don’t want it, you can just send it back to us. But make sure you take good care of it, don’t lose it.’
‘Holy shit! No way! I’m not taking that! I’m not going to take responsibility for £3000 worth of equipment that I don’t even want, that I’ll just have to work out how to return… hell no. Sorry, and thanks for your help, but that’s a hard no from me. I don’t want it.’
‘Really?’ she said, still not quite understanding how ridiculous the whole thing was. ‘Can I at least test your hearing with it and without it so we can see how much benefit it gives you?’
She’d made me try it on (it was already starting to feel uncomfortable and was interfering with my eyepatch), and I told her it didn’t seem to change anything with my hearing, but ok, sure, I’d do a hearing test.

Hearing test done, she turned to me and said ‘oh.’
‘Oh?’
‘Well… it’s improved your hearing in that ear from 72 to 78…’
‘That doesn’t seem like much…’
‘It’s practically nothing. I don’t understand why it’s not made any improvement. Ok, well, I don’t see any point in you taking it.’
‘Ok, great, thanks. I’ll be going then’

I started gathering my things – it was December and getting near winter. I had jumpers, scarves, a jacket… I started layering it all back on. I felt disappointed that the potential solution I’d been offered, that I’d hoped would help with my hearing, was not feasible. But I was also glad I dodged a bullet there, and marvelled that anyone thought this was a viable solution. As I was about to walk out, she said…

‘Hang on, do you have a few more minutes?’
‘I mean… Yeah…’
‘I’ve just had a thought. I don’t know if this will work, but… Hang on, let me quickly duck down to the first floor to grab something. I just thought of something that might interest you…’
Ominous.
I agreed to wait (and snap a photo of the ridiculous contraption) while she went on a pilgrimage to the elusive 1st floor.

When she returned, she held in her hand the most beautiful, tiny little dainty thing. Something I identified immediately as a hearing aid, but sleeker, cuter, more lovely than any I’d ever seen before.
‘I don’t know if you’d be interested in this, or if it would help at all, but is this more what you were thinking of?’
‘OMGYES!’ I exclaimed.

So in my ear it went, and she switched it on… and immediately, miraculously, I could hear. I could hear the sound of her chair scraping slightly as it rolled on the floor, the tap of her fingernail on the table, the bubbles in her glass of soda water escaping to the surface, someone sneezing beyond the door… I could hear every little sound that existed anywhere nearby.
‘Woah,’ I said.
‘Does it work?’ she asked, peering over at me, probably wondering what unexpected reaction I might have this time.
‘Yeah…’ I replied. ‘That works…’
‘Phew!’

So off she sent me with my new, ritzy little hearing aid. I don’t use it all the time, certainly not when I’m at home or one-on-one. I never need to ask people to repeat things in those situations, and I don’t struggle to keep up with conversation (if I did, believe me, I would be wearing it then too). But whenever I’m out in a busy place, with ambient noise, it’s my best little friend. It allows me to hear the conversation that’s going on – and I can change its setting between two options: one-on-one normal conversation, or ‘speech-in-noise’, in which it works hard to hush the buzz around me and zone in on the people I’m trying to listen to. It’s bloody brilliant.

I can’t stress enough how much I recommend this to anyone who’s struggling to hear, who has to ask people to repeat things, who misses whole conversations. If you can get access to them, try them out. The things I’ve learned since talking to a whole lot of people about deteriorating hearing, is that mis-hearing only works to alienate the person who can’t hear – getting angry at being left out of conversation, or thinking someone is ignoring them, or that people are saying negative things, or talking behind their back, or that when the person is repeating at a louder volume to help them it comes with anger. When really, I think being able to listen and hear and participate fully in conversations would remove a lot of that angst.

For me, as mentioned, I was finding louder, busier places harder to exist in. I was wondering if I just couldn’t go out for dinner, for drinks, to venues, to shows anymore. Did I have to limit myself to one-on-one interactions in quiet spaces? Just stay at home? Nope, I’ve got freedom again. And apparently, the quicker/sooner you get on to getting and wearing them, the easier they are to use and adjust to, and the longer you leave it the harder it becomes. As the Chinese proverb goes, ‘The best time to plant a tree was 20 years ago. The second best time is now.’ Anything at all that makes living easier is a big thumbs up from me.

In fact, it makes me think of some other misconceptions we (i.e. those of us without these specific problems) have with various aids. We ‘awww, you poor thing’ at the person who gets a wheelchair to help them get around, when often that person is like ‘hey, I spent the last two years practically bed-bound, this is freedom!’ We gasp and exclaim at how horrible it is when someone has to get a stoma, and yeah of course in an ideal world no one would need one, but my friends who get them usually find a great amount of relief compared to what they’d previously been dealing with – living on and around the toilet, going constantly (and struggling) at all hours of the night and day…

Aids = freedom, not slavery. And certainly aren’t shameful.

I’ll leave you with some adventures of Jen with the hearing aid:

• When I found out that it was connected to my phone’s ringtone and while Sam and I were practicing for our gig back in December, someone kept ringing me. He couldn’t hear my phone ringing, but I could… In my ear… ‘what is going on!’ I kept exclaiming. ‘What are you talking about?!’ he kept asking. I turned that feature off quite quickly
• Wondering (many times) if it’s actually been working after a night of wearing it at a gig/play/etc. then taking it out and being shocked at how deaf I suddenly become – this always makes me laugh. They say you don’t know what you’ve got til it’s gone…
• The battery malfunctioning and it not connecting properly to my phone, sitting in conversation with someone, looking super rude as I scowl at my phone while they’re talking, trying to get it to connect…
• The fact I can turn it up/down/change the setting using my phone… that never gets old for me.
• It hurts if I wear it for too long, but I haven’t found that too hard to manage yet.