Finally, I have started to get some idea of the mess that the summer operation has left behind. Unfortunately, until the hospital finds my notes, I am unable to move on and accept why I now find myself profoundly deaf in one ear – when I had expected to be of the same quality, or better, hearing after the operation.
I can’t even use my hearing aid any more – when I was just getting used to it and feeling ‘normal’ again.
It seems that Consultant is now admitting a ‘shambles of care’ in a letter I have now received. Although this is a horrific admission, it actually makes me realise that I am not going mad and I am looking forward to getting the final report in another 5 weeks time – the hospital website claims I should have had my complaint dealt with fully within 4 weeks, I am currently at 14 weeks from complaint and 16 weeks from operation. It is looking like they have definitely lost those op notes.
In the meantime, I still wait to find out what the actual major disease was that I had in my ear to cause the removal of the entire content of my ear – bones, eardrum – completely hollow. I wait to see if there was a disease there that could spread to other bones within my body. I wait to see if there is anything that could have been done earlier, like during the two years that it took for them to do the operation.
Today I am in a lot of pain. Sometimes the pain feels as though it is vibrating through my ear, this makes me hopeful that there are some nerves that have been left behind, somewhere in there. The pain often makes me feel sick. The sickness and pain together make me feel giddy and almost in loss of control of my balance, like I need to hold the wall when I walk or perhaps just stay sitting down.
I am hopeful that tomorrow there will be less pain. I wish that tomorrow I might hear a little sound. I will try tomorrow without taking tablets. I am determined to stay positive and strong – and of course, hopeful.
Halloween is definitely one of my favourite times of the year – being a lover of horror and all that goes bump in the night. I think the whole idea of not being able to actually hear something creep up behind me, not knowing until it taps me on the shoulder, is maybe one of the more spooky things that will happen this year, as I make my way to the London Dungeons and all those haunted ‘dead’ (rather than deaf).
This half term has been a rather eventful one, and a heartfelt thanks to all my friends who have kept me sane throughout. A highlight was seeing the original script of Frankenstein, along with margin notes for improvement, at the Gothic Exhibition in the British Library. I think I discovered a whole additional bunch of books to download to my Kindle that I have not yet read, to send some shivers down my spine through the winter months ahead. Oh, the beauty of the written word.
The Gothic genre, and horror in general, is based around the unknown. Working on people’s fears. A Scarefest. Hollow darkness. The what ifs… With the loss of sound, the fear is then heightened around the images, the smells, the touch, the tastes… I may try to write a short story without sound being mentioned, to see how the other senses could be heightened in order to develop a sense of fear for the characters.
I think of my own initial fear when the consultant told me that I was now profoundly deaf in my right ear and how I have, so far, managed to face that fear. I am hopeful that I will be able to battle with the darkness, the evil of the unknown, the fear of not knowing what I am missing out on. I think of the surgery as a vampire bite that has taken some but not all of my life blood. I intend to devise that vampire hunters kit and take control..
For some reason this classic ABBA tune has been spinning round in my head for the past couple of days, along with the thought of my hospital records that still appear to be spinning around somewhere in deepest Essex.
This picture shows the graphic breakdown of the ear. The reason for my current profound deafness is that all the bones you see in the picture, along with my ear drum have been removed – the mastoid, the stapes, the cochlear – the full inner and outer ear features. Without my notes, particularly those from the operation, my new consultant is currently unable to see if I can be helped in regaining some of my hearing with further surgery.
The more I read about how the ear works and the outcome from the operation, that it now appears that I have had, the more I recognise the importance of those operation notes. Having spoken to a solicitor this week, it also seems that until I have those notes and the results of the biopsies taken during the op, I have no case. Meantime, the hospital are taking 14 weeks to send me my notes – that’s 20 weeks since the operation took place! Their website claims to respond in full to all complaints within 4 weeks. Now, my maths is pretty rubbish but even I can recognise that that does not add up.
So it continues with pain, infections and silence.
I am hopeful that they will find my notes and results so that I can move forward – I will then see if I have a legal case i.e. if they had operated after the first scan in March 2013, would that have resulted in not losing the whole of my inner and middle ear, and therefore not become profoundly deaf?
So in the meantime, as Abba sing ‘Thank you for the music’ (and the song I attempt to sing)…
Back in March this year, I finally managed to see a Consultant who appeared willing to help rather than just send me for more brain scans. Despite my numerous qualifications, it would seem that my ‘scattiness’ over took on the possibility of my brain causing my sudden loss of hearing, constant pain and infections rather than a problem within my ear.
She suggested an operation called a Mastoidectomy, where they open your ear from behind and remove the small mastoid bones that may have been diseased with Mastoiditus. These bones connect to your brain and if the disease moves up them, it can actually cause that side of your face to become paralysed. I was told that this operation would improve, or at least keep the current level of hearing that I had in my right ear, and would prevent any further infections or pain. Of course I jumped at the chance for an end to the pain that was at this point virtually a permanent state.
I was also introduced to the idea of a hearing aid.
I’m not going to lie – this horrified me.
The thought of wearing a contraption which would make me feel even more ancient than I already did, make me have even less self confidence than that which was rapidly disappearing out of the door, and would potentially make me feel like a freak as I walked along – scared the bejeebers out of me.
A hearing aid was for someone who was retired, living in an old people’s home, knitting and sucking on their false teeth – not for someone who still wanted to party, dance, live, love.
But the thought of a continued life of saying ‘pardon’, ‘what’ or ‘sorry’, was equally unappealing, so I braved it to say yes. Besides, the Consultant gave the impression that it would be temporary, only until the operation had taken place. After yet another hearing test and having some gunge poured into my ear, I was told that an appointment would be sent through to have it fitted in a few weeks.
Going online, you could be led to believe that you will have a choice of hearing aids. That you could almost have any colour that you want. I thought that to be unique and make a fashion statement I would ask for a really bright one. This could be a way of making a visible statement about disabilities not being something to be afraid of, or embarrassed about, in conversations with my students at school.
I was adamant that I did not want an old biddy style hearing aid. I did not want the humiliation of it. I felt assured by the online information that this would not happen.
Reality was very different.
I arrived a month later to collect my hearing aid, having been told that it would be fitted after a discussion of the most suitable ones and enabling me to select the one that I wanted. My appointment would be an hour long and I was to bring someone with me to help me adjust to the sound.
This is what I was just given – no discussion – no selection – no choice.
Granny bashers for the eardrums.
I felt like crying. This was the first step to feeling officially old. The slippery slope towards being humiliated. I felt like the kid at school who knows that when they arrive tomorrow, their friends will say ‘Oh you can’t see it at all…’ and in reality the bullies who are pointing, poking and laughing are the ones who are telling you (and everyone around them) the truth.
Having said that when I put it in, after a bit of a fight, for the first time in a very long time, I could hear without having to lip read. I didn’t have to say, ‘Sorry, could you say that again?’ I could even hear my heels clicking down the corridor – that did make me giggle a bit.
I kept reminding myself that it was only a temporary measure and the operation would mean no more pain, no more sickness, no more hearing aids.
After a while it became known as my ‘accessory’ – I guess I could have added a bit of bling to it, if needed, and it was only temporary.
And best of all… I could hear music in stereo once again. What a beautiful sound that was.
One of my favourite hymns was (is) Morning has broken. The lyrics define the way in which we enjoy the beauty of nature – through images, colours, symbols and sound. When I received the news – that I was kind of expecting – this week that I am now profoundly deaf in my right ear, at first the whole world and all those images and sounds flashed through my brain, like a kind of ultra bright music video that I enjoyed in the 80s. I couldn’t, or didn’t, really focus on what the Consultant was saying for a few moments; just on the thought that I may not be able to enjoy those images in the same way ever again.
Once I did enable myself to start to listen once again, I had to focus carefully to take in what was being said – my hearing now, as a result of the operation that took place in the summer, in that one ear, was at a point that I was considered profoundly deaf. It is still unclear as to what they actually did in the operation, unclear as to why such a large biopsy was taken from my ear, why I now have no bones to enable hearing left and what has happened to my notes. I don’t want to write this blog as a sound-off complaining about the doctor, the hospital, the experience that I had – that is something for the solicitors and the legal people. Instead I want to use this as a way to show how positivity can come from adversity and if despite my initial thoughts of panic and despair how I can cope and continue to live my life to the full as much as possible.
I am female.
I am in my 40s.
I am very much single.
I am the mother of a post-teen.
I am a teacher.
I love language, conversations, laughter, music, dancing and my friends.
I am desperate for this to all continue (well, apart from the single bit, if I’m honest)… so I am hoping that by recording my ‘journey’ on this blog, I can meet some like minded people and remind myself of how far I am going.
At the moment I am hopeful that I may have a chance of some form of implant to help give me some hearing back – this is dependent on the op notes and results of the biopsy that were taken – I recognise that this will be a massive op but I think that it is the prospect of this at the moment that is making me feel hopeful for my future. I was dancing last night and thought – ‘God, imagine if I couldn’t hear the music. Imagine if I couldn’t feel the music. I couldn’t hear the laughter and the clinking of glasses and heels… Imagine if I was in a world of total silence.’ I guess its the selfish aspect of me that thinks the negative thoughts, that has nightmares about waking up to a world of pictures but no sound.