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

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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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Doctor Dillemmas

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Recently I have been feeling a bit like I just want to fly away with some loud music and a tinny beat. Unfortunately, the reality of the situation is that I have to go to work every day, like the rest of the population, and just dream of sunbathing in warm temperatures with a glistening sea and a marvellous tan developing to make me look and feel much more healthy than reality.

At the weekend, once again I had blood and gunk coming out of my ear. I am not bothered by the ‘gunk’ and can even cope with the pain now – thanks, to a strong pain threshold – but its the bright red blood that is concerning me. Like most GP surgeries, trying to get an appointment is a nightmare these days. Once you get past the receptionist whom you have to get every last detail of your ‘concern’ to – they then say that a GP will call you back. Unfortunately, they can’t confirm the time that the GP can call you back and when you are a working person and you can’t take personal calls that makes it a little tricky to get an appointment. Despite asking for them to call back between 12 and 1 – they didn’t actually call back until around 3pm. The GP that called had a very strong European accent and constantly whispered. Needless to say even on loudspeaker next to my good ear I could not hear her properly. I could however tell that she didn’t want to see me.

I managed to get an appointment for later that afternoon/ early evening.

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After getting there early, I still waited for over half an hour past my appointment time. Eventually, I got in there. The woman had not read my notes, and appeared to sigh as she mumbled about my going there too often about ear infections to get just antibiotics. Before even looking in my ears, she said that she did not want to give me any more antibiotic drops. I tried to explain that I didn’t actually think that I had an infection as there was no temperature or pain. It was the fact that it was red blood that was being discharged that was my concern. She looked and surprise!  – there was no infection.

When I asked if she could speak to the hospital to bring my next appointment forward she said that it wasn’t her job to do that, she was too busy. It was down to me. She then sent me away for a blood test to see if I had an infection in my blood or diabetes! I have no symptoms for either, other than telling her that I was becoming extremely tired from concentrating and lip reading since losing my hearing in my right ear – and asking if there was any chance I could have an appointment to see if I could have a hearing aid for my ‘good’ ear. Obviously, that doesn’t come under her remit either.

shocked face

I went for the blood test today – let’s see what the results are…

I also called my new Consultant’s secretary, they still have not received the operation notes, biopsy results or any communication from the original trust. It has been over a month since they requested them directly and 12 weeks since requested them. I am expecting them this week – but not holding my breath. The reason my appointment to see my new Consultant is not until February, is because that is when they suspect they will finally get the information that they need. This will be 2 years since my first appointment! Who on earth calls these people to account?

Incompetence and negligence are two words that I never thought I would say about the NHS but they seem to be regularly bounced around now. I would also say that none of the contacts I have had, either at the original hospital trust or  my GP surgery have been English trained. Most have been European and locums.

Well, Friday seems to be the day of reckoning – for results and hopefully, the opportunity to understand what has happened to me and why. Let’s hope at last someone will be held accountable and explain. An apology would be nice.

Meantime, look forward to flying along on the icy streets tomorrow.

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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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Shaking Shambles

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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.

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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.

IMG_8283I 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.

 

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.

 

Silence is broken…

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.

In the meantime, I turn it up and shout it out!