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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Isolated Icicles

helplessSometimes lately I have been feeling down. Really down. Way down. I am finding it difficult to keep positive in the face of adversity and for those that know me and are following this blog, they will know that this is not the usual me. The clocks changing always bring me into believing that I suffer from SAD – it’s the thought of getting up and going to work in the dark and then by the time that the working day is over, its back to the dark again. In a desperate ploy to fight this battle with the winter darkness, I have now invested in a Lumie Bodyclock – which is supposed to wake me up with gentle rising sunlight and help me to fall asleep with a beautiful sunset. As I am also convinced my hideous sleeping pattern is partly due to my constant concern that I won’t hear my alarm if I am asleep on my ‘good’ side – I am hopeful that this will help all round.

So, as the nights get darker they also seem to be getting a hell of a lot colder. Dancing on the spot isn’t even working in these conditions – so I am thinking perhaps I should just hibernate (it could also help in losing weight, surely not eating for months can only a good thing?).

hedgehog_125965496_333x269One thing that I have really noticed these past few weeks is how tired I am. Now, I have never been one to sleep a lot – five hours is a good night for me – and yet, I am now getting more sleep, albeit staggered, and feeling more tired than I have ever felt before. I have been trying to work out what is causing the tiredness and lack of general va-va-voom! and can only conclude that it must be down to lip-reading.

Since taking the ‘accessory’ out after finding it longer works following the operation, I have been (1) profoundly deaf in my right ear and partially deaf in my left ear (2) having to rely on shouty people or lip-reading. Now, lip-reading is a full on task anyway but with the addition of being a teacher with between 25-30 voices crying for your attention in a room, it becomes the task of a superhero. I seriously need to achieve a special power to help at times. I am not sure if its the focus, the attempt to hear some form of sound, the need for a volume switch, the frustration of not just being able to hear without saying ‘Pardon..’ or ‘Can you say that again..’ numerous times … it’s never ending.

HearingLoss

So this week I have decided that I will do something about this frustration and contact the GP and my new Consultant in hope that they might be able to help me out of the doldrums and back into the festive fun. I am hoping perhaps something to aid my partial deafness  left ear, whilst we still wait to hear back results and operation notes – I still do not know why they removed the whole of my ear. I also  to seek some advice about the blood that keeps discharging from that ear, as this too is starting to become a concern. The deadline for the original hospital finding my notes is in 10 days time – fingers crossed.

Meantime, I have just purchased a new CD so will be playing that loud, dancing on the spot, singing in a tuneless voice and smiling outwards, whilst inside I sob my heart out.

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