The gift that keeps on giving…

Recently, I’ve been feeling ok. I’ve started to accept that ‘ok’ is as good as it’s going to get, but it’s a place I’m happy to be.

There is still a mix of good days and not so good days (I try not to be negative by using words like ‘bad’) and that’s ok too.

As I read back over this blog, it really doesn’t sound particularly positive, but as always, I’m writing from the standpoint of trying to educate and raise awareness, so please forgive me!

In recent weeks, since I’ve now finished work until the Autumn, I’ve been totally occupied with working on the Beyond Recovery project. It’s been exciting to be able to get stuck back into planning something so exciting, chatting with people about it, sharing stories and all that sort of stuff.

Things were going well. Until they weren’t.

A couple of days after returning from France, my eye started to become irritable. It felt like there was constantly sand in my eye. One day, I woke up and it was incredibly sore, bloodshot and the conjunctiva membrane appeared lumpy looking.

I eventually got an appointment with my local Practice Nurse later that morning, and she told me I had an infection and prescribed antibiotic eye drops. We concluded this was likely caused by my eye becoming too dry. This is not uncommon in people who have had surgery for an Acoustic Neuroma, given the proximity of the V cranial nerve (trigeminal),VII cranial nerve (facial) to the VIII cranial nerve (vestibulocochlear) which is where the tumour originates and which is often severed during surgery.

It is the V cranial nerve which controls corneal reflex and tear production.

That episode started, I think, on our return ferry journey. I’d been on the deck of the ferry, where it was rather exposed and quite windy. My eye had started to feel dry and a bit gritty then. It was followed by a long drive home in the car, with the air con on.

After a few days, things started to settle down.

Last week, we decided we would go to the cinema. It’s been quite a while since I’d found a film I thought was worth going through the ordeal to watch there.

We arrived, found our seats and waited for it to begin. As soon as the trailers fired up, it become intolerable. Out came my Etymotic earplug.

The noise level was overwhelming. Speech sounded distorted. Had I not been there with my husband, I think I might just have walked out. The earplug helped a little. It takes the edge off sound, particularly that which is background noise, whilst still allowing me to hear. But it was still uncomfortably loud and my ear soon began to hurt as I kept trying to push it in further.

In fact, I whipped out my phone and used a sound meter app which I have installed. At that point, it read 94 decibels (dB). I have no doubt it went much higher.

Sounds at 85 dB can lead to hearing loss if you listen to them for more than 8 hours at a time. Sounds over 85 dB can damage your hearing faster. The safe listening time is cut in half for every 3-dB rise in noise levels over 85 dB. For example, you can listen to sounds at 85 dB for up to 8 hours. If the sound goes up to 88 dB, it is safe to listen to those same sounds for 4 hours. And if the sound goes up to 91 dB, your safe listening time is down to 2 hours. The film was in the region of 3 hours long.

A single loud blast or explosion that lasts for less than 1 second can cause permanent hearing loss right away. This noise, called impulse noise or impact noise, may come from gunfire or fireworks for example. Impulse noise is measured in dB peak pressure, or dBP. Impulse noise greater than 140 dBP will hurt your hearing right away.

When you have one functioning ear, these situations become a real worry. If I know I’m going to be in this kind of environment, I carry my ear plug. The thought of losing more hearing with age alone terrifies me, because I already know how isolating that can be. I’m not prepared to increase the risk for the sake of watching a film.

Anyway, long story short, the film was great – apart from totally not hearing last sentence, which I got the impression was key to the previous storyline, but there we go. There’s a lot of that in life these days; I feel like I’m constantly filling the gaps!

Yesterday, I once again woke up with an irritated eye. On looking closely at it in the mirror, it looked like I had something of a blister or cyst on my eyeball. Unable to wear my lenses, I found myself running along the canal with, my glasses bouncing up and down and then sliding off my nose, wearing an eyepatch to keep the wind out of it. I certainly raised a few eyebrows for sure.

I should have been running faster intervals, known as a fartlek session, but I decided trying to be speedy when I couldn’t really see where I was going, would not be one of my better ideas. This annoyed me, as I am currently training for a faster marathon time.

This time, unable to get to the doctors, I went to my optician. I had a full eye test and eye examination. Eyesight on tumour side had deteriorated further, something I was aware of, and I did indeed have a cyst on my eyeball. An inclusion cyst, caused no doubt from it being too dry and becoming irritated. I’ll spare you the images.

All this made me angry. And then I became angry with myself for becoming angry! You see, although I still struggle on a daily basis, recently, I’d been feeling more ‘accepting’ of where I was.

Suddenly, I felt like I was just being hit by one thing after another again. I was ready for a pity party.

I could imagine my resected tumour, sitting in a fluid-filled jar in a lab somewhere, laughing at me. Gone, but refusing to be forgotten.

Acoustic Neuromas, at times, feel like the unwanted gift that just keeps on giving. Work is quiet for me as I only freelance (so I can control how long I work and try to manage fatigue levels). Essentially, I have no work now for the foreseeable, until after the summer when it starts to roll in again, albeit very slowly. Now I found myself with an unwanted £184 bill for an eye exam and new glasses, both of which would most probably not be needed had it not been for the brain tumour.

It makes me angry that there is not more financial support to help with things like this, particularly in the case of a ‘benign’ tumour, and more so when it comes to having to pay out for prescription medication and expensive eyedrops, gels etc. which I need for the rest of my life.

For many, this is the reality of being a survivor.

This is what recovery looks like.

Benign is not fine.

This is just another reason why the Beyond Recovery project is so important to me.

Please support if you can.