Doesn’t time fly…

 

I was quite shocked to realise that more than three years have passed since my last post, and so much has happened since then that I should have shared with you, and I will, in the style of Game of Thrones by … quests.

the quest

Quest number 1 – My quest for hearing

After being transferred to a different hospital trust, and having been given a new Consultant, I have nothing but praise for the wonderful staff at my new hospital. My first operation with them took four hours longer than expected, as it appeared that the cholesteatoma had been left by the original ‘butchery’ where they removed most of my inner ear (bones, eardrum)  but not the cause of the problem. I then had a second follow up operation the following year where I have now been given the all clear.

Unfortunately, where it had been left, it had attacked the remaining bones in my ear, started to attack my facial nerves, and had been exposed to my brain (explains a lot). I now have a teeny tiny pink (yes, it’s pink) hearing aid in my left ear to aid and support the weakened hearing in my right ear. I am never going to get my full hearing back, as it was left for far too long, but for the time being it’s not going to be getting any worse thanks to the lovely little aid. I still have to ask people to speak up. I still worry about telling people about the fact I am reliant on the little aid behind my ear. I still rely quite a bit on lip reading. But I am now starting to see it in a positive way – at least if I don’t want to hear someone droning on I can just switch it off, or take it out.

Quest number 2 – My quest for an apology

sorry

My second quest has proven to be rather tricky.

All I want is an apology.

Nothing more, nothing less. It seems that the consultant who completed the original operation/ ‘butchery’ has now changed their opinion from the letter she sent saying that I had received a ‘shambles of care’ and the trust are now claiming that they have done, or did, nothing wrong. It would appear that they are of the train of thought that the issue is my fault. That I should have known what was wrong and it was not their fault that they did not consult my medical history, that they scanned and x-rayed the wrong parts of my body (!!), that it’s not their fault that they missed that one of the many that I saw wrote down that he suspected it was cholesteatoma. No. Nothing is their fault and they did nothing wrong for two years prior to, or after, the initial surgery.

I have now moved on from just wanting an apology. I would like a very big and public apology. Not just for me but for all the others that that ‘surgeon’ operated on, all the others that they ignored (and probably still are ignoring), all the others that need to have their voice heard and their notes read… I have a solicitor on the case. We have received back their response and they are rejecting any claim of breach of care despite it being in black and white when presented to them. I am awaiting what action is being taken next. Apparently they do this a lot. They missed numerous deadlines to respond, forward information etc.

And still they claim it is not their fault.

At least I am able to live now, with the support of my pretty pink hearing aid (apparently I was the first adult to ask for that colour), and regular check ups – both for my hearing and to check that the cholesteatoma has not returned, which can happen. Now that I have been given the all clear last summer, after op number 3, I have moved on look at quest number 3.

Quest number 3 – the quest for a life

life

The third and final quest is the most exciting. When I was given the all clear on my ear I was in a very stressful new role. I was working at a school that appeared to believe that they owned you – mind, body and soul – if you worked there. The Head actually told me that if she wanted me to work 24/7 then I would have to. All staff were under immense pressure to ‘perform’ – I can use no other word for it. Constant observations, constant learning walks, constant criticism, constant workload.. it was basically killing me. So, I was now in a situation where I could live again thanks to the surgery and aid, yet the job I had was not allowing me any time to do that. Sure I had a fantastic car, and could buy anything I wanted BUT I was not able to live. After another weekend where I had to cancel seeing friends and just stay inside all weekend working on reports, only to be emailed a request for further reports, I decided I was going to quit. I wasn’t sure at first whether to stay in education or to move back into industry and thought of applying for some trainer roles in the automotive trade. Then I was encouraged by a number of people to consider looking at teaching overseas, so I started to look and started to apply.

A week later I collapsed.

I was rushed to hospital for tests and it appeared that I had an infection throughout my body. I was on two antibiotic drips and also being fed and hydrated through another drip. The job had been so consuming I had literally not been able to drink or eat – the head had reprimanded me for drinking water in class – I was ill. Like proper ill. School was texting and messaging me, demanding that I sent in cover work, that I came back to teach. The hospital (not the one of the ear issues), was disgusted. I knew at that point I would only be going back to hand in my notice.

After four days I was released from hospital. I went home to an empty house and a load of missed phone calls from school demanding I return. They had decided to call a mock Ofsted on my department that week. I also had an email asking me to attend a Skype interview for one of the roles I had applied for overseas. I didn’t go back to work for three weeks, I was still very weak and I was now suffering from stress thinking about returning. The only reason I did return when I did was to hand in my notice. The first school that I had interviewed with had given me the job – I was now on my way to a whole new and exciting beginning.

Let the quests begin…

quest final

 

 

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Christmas – from just one side…

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Despite Christmas being a religious festival, it still seems that everyone is more interested in the presents under the tree and trying to out do one another in competition for the biggest, brashest and most ridiculous present ever. Thankfully, this year I went back to basics and had a Christmas that was based around love, friendship and laughter… lots of laughter!

2014 has been a difficult year with my hearing problems, the operation, the ongoing attempts to have some form of aftercare from the hospital and consultants and then the more personal family problems – that I have not discussed here, or on any other form of social media as I don’t think this is the place to air your ‘Jeremy Kyle’ laundry.

Thanks to my wonderful group of friends I have managed to feel blessed this Christmas and for once have not had to worry about competing with anyone else, not had to concern myself as to whether I was going to be the only single at the table, or the only one who took a second helping of Christmas pud. I haven’t had to worry about not being able to hear everything that was said, with people taking their time to make sure I was ok and that I wasn’t in too much pain, or feeling isolated.

This Christmas has been the best that I can remember for a long time, despite the inner sadness – so God bless to all my readers and fellow bloggers. I hope that yours was full of the true spirit of Christmas and love as well.

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Accessorising the issue

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.

 

 

'Accessorise it'
‘Accessorise it’

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.