Story of a Princess
Sarah lost her hearing from drugs used to treat her when she was bitten by a pet rabbit. The drugs saved her life but left her severely hearing impaired. Sarah is a doctor and working in hospitals, particuarly in surgery where mouths are covered meant being deaf made it difficult for her to do her job. This is her story.
Sarah Greenwood Oct-08
Growing up and how a Princess lost her ears:
| I was born in 1981 to a wonderful couple in Colchester, Essex in the UK. If this was a story book they would be a King and Queen but in my case they were two wonderful people who were teachers and doted on children (especially me!). I grew up in a large extended family and enjoyed every advantage my parents could give me. I was their little girl (and still am!) I had normal hearing and enjoyed a wonderful childhood surrounded with love and fun. |  |
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I cruised through life enjoying lots of things en route, cramming as much into every moment as possible. By the time I went to university I had played my flute in the county youth orchestra and taken to the stage singing, acting and dancing in many productions. I became an assistant dancing teacher at my dancing school, played hockey, netball and volleyball for my school and played hockey for my county. In short I had a brilliant time of it.
So at the age of 18 I ambled off to medical school in London. I had many friends there, and continued playing my flute and singing in the choir. As a first year student, I became a member of the St George's Hospital Boat Club and rowed competitively throughout my time at medical school. I was elected boat club captain in my 3rd year (an achievement I am still very proud of) and received my full colours. I also played Rugby at medical school, although my sense of self preservation was too strong for me to be really successful at that! But despite all these distractions I graduated as scheduled with my degree in medicine in July 2004.
Introducing Tinky Winky aka the 'Assassin Bunny'
My intern year in the UK was going well, I had jobs I enjoyed and great friends! In short life was really good. I suppose it was always likely to hit some sort of 'snaggoir faire', indeed it did, but the shape of the snaggoir could never have been predicted. It was a lazy summer Sunday evening, I had enjoyed a fabulous family weekend and was preparing to drive back to where I worked, when the family pet rabbit, who was usually good natured, came over to me and bit me several times on the leg. (The rabbit's name is 'Tinky Winky' but from here on in will be referred to as 'the assassin bunny'!) They were not deep bites but the next day my knee ached, at work I was whinging and a colleague thought it might be a little red so I started antibiotics. A week later, despite intravenous antibiotics and the best possible care, I became very sick and needed intensive care. By now I really was in a dreadful state. Several of my organs had failed from the overwhelming infection and I needed some potent antibiotics quickly. One of the antibiotics, combined with another medication which I needed so I could breathe, is known to sometimes cause deafness. In my case that is what happened.
I quite often get asked by friends and colleagues when am I going to sue the NHS for this adverse outcome? It makes me rather cross, I always reply 'what would I be suing them for? Deafening me? Or saving my life?' I am certain that antibiotic saved me, be it at a terrible price.
After the Bunny but before the Cochlear:
It became obvious to me and my colleagues that something had gone awry with my ears during my recovery. The Great British Psyche being what it is, nobody could bring themselves to suggest I had cloth ears and although I thought I was missing things, I figured I must be imagining it, or somebody would have mentioned it!
At last the impasse was broken when on a massive ward round I misheard a consultant ask 'who's patient is this?' (A very sensible question for a ward round) instead I heard 'what is your favourite root vegetable?'(Admittedly a less sensible question, but that did not stop me answering with gusto!) I started by exalting the virtues of Turnips (I still stand by they are very nice when crunched raw in a salad!). The consultant frowned at this response and I assumed he hated Turnips (they are an acquired taste after all!) so I changed tack and advocated the merits of the humble potato! During my explanation the consultant continued to frown! Crikey! I thought how can he hate potato? So I moved onto Pumpkin (Which I now know is not a root vegetable!). Unknown to me, my team guffawed from behind me, and this combined with my fairly ridiculous answers on the ward round made him suspect I could not hear. An audiogram was arranged which showed I had a moderate to severe hearing loss in both ears.
I was referred to audiology who gave me some leaflets and hearing aids. The literature was fairly pessimistic regarding my chances of living a sociable, happy and full life as I expected I would. But my best friend Susie and I had no real time for that, we were off to work in Australia!
We had secured two posts doing a year of Emergency Department (ED) together in Rockhampton, Central Queensland. It is fairly common after your intern year to go overseas for a period and especially since the end of my intern year had been so eventful we both felt we deserved some fun in the sun. That is exactly what we had! We learned to surf and horse ride like Jillaroos! (There is not a cow we are not prepared to chase). I loved my ED job and managed well with my hearing aids and lip reading. I am proud to say I saw as many patients as my colleagues and in all my time as a doctor have never received a complaint. However, managing like this was exhausting, my hearing aids were becoming ineffective and audiograms showed my hearing loss was now severe in both ears. It was time to consider a cochlear implant. Because I am only a temporary resident and do not get Medicare I returned home to the UK for assessment. By the end of my assessment, my very lovely Pommy ENT consultant agreed I needed a cochlear implant as soon as possible, but under the NHS I could expect to wait 3 or more years for a 12 electrode one. He thought since I wanted to stay in Australia anyway, I should see if I could get one done back there where the technology is much further advanced.
This was the longest trip of my life.
As the plane left England,leaving my family and Susie behind me I realised how uncertain my future was. All I could do was go back to Rockhamption (Rocky) and see how things turned out. The journey from London to Brisbane is indeed a long trip at any time, but this flight seemed much longer than any I have taken before or since.
Once back in Rocky, I immediately approached my friend and ENT consultant Dr Van Splunder for his help. Since Rocky is pretty small, they don't do cochlear implants but he said he would make enquiries to find someone he could send me to in Brisbane. At this point I would like to mention a quirk of my personality, despite me being a doctor, having most of my friends as doctors, I most certainly do not like being treated by doctors and certainly don't appreciate them telling me what to do! These needs were considered by Dr Van Splunder when referring me onto a suitable ENT consultant. Arrangements were made. I would see Dr Que Hee in Brisbane a couple of weeks later.
I must explain now that my training in the UK had portrayed a dismal view of cochlear implants. The only formal teaching I can remember (although since it was in the 3rd year, I may have missed more and been off rowing somewhere on the Thames) was from a deaf liaison service which described cochlear implants as at best giving the user such a low level of functionality they were stuck in a sort of twilight area, not being accepted into the hearing world and not being part of the deaf community. To be contemplating a cochlear implant for myself a few short years later was not really reassuring. This combined with my (as it turns out completely unfounded) worries that I had assumed the sick role and enjoyed being deaf and how would I cope if I could hear again?
These two things turned me into a nervy and grumpy princess to be around for the weeks preceding my initial meeting with Dr Que Hee. But over the weeks my wonderful friends at Rockhampton chatted through these fears and we came up with a plan I was happy with. For some reason I had become fixated on the idea of a BAHA being my salvation from having to undergo a cochlear implant. Poor Dr Van Splunder had patiently and repeatedly tried to dissuade me from thinking they were a suitable option. But as my good friend pointed out I was just going to Brisbane to consult with Dr Que Hee so I could seek his view. All my wonderful friends mainly just shared beers and chat with me in this period and tried to reassure me that the only way they had treated me differently during my time in Rocky was they repeated themselves and talked loudly so I could see and hear them a bit. (Indeed the Rocky Tea Room had a self closing door put on it a couple of months prior to my cochlear, because, with everyone shouting to be heard, surrounding offices were suffering! I see this as a remarkable achievement and I am tempted to put this on my CV!)
After many beers and impromptu 'counselling sessions' the day dawned for my trip to the big smoke. Anna (brilliant friend and self appointed surfing queen!) was to escort me (the surgical and anaesthetic rosters had been higgled to allow us both that time off). We decided to hire a car for this trip so Anna could give me a tour of Brisbane. Needless to say this made us run slightly late and meant I had less time to worry about meeting the ENT surgeon. As I have said, I hold a serious mistrust of all doctors, but especially ENT surgeons. Meeting Dr Que Hee was completely different, he was pleasant and matter of fact. He was so approachable it was easy to raise the question of the Baha (and then move on quickly!). At the end of that first consultation it was arranged I would go for an assessment the next week at the Neurosensory Unit and then see Dr Que Hee straight after. If I was suitable for a cochlear then we would make immediate arrangements (including payment as I am not under Medicare).
Returning to Rocky following this appointment I was reassured of one thing - Dr Que Hee was a thoroughly fantastic bloke! Not just as a surgeon (I figure if you are practising in Australia you will be a good surgeon) but he seemed a great person, he hadn't made me feel like he pitied me and I thought he was so pleasant he would never try and tell me what to do (boy was I wrong!) But if you think I returned to Rocky reassured and content to await my assessment the next week you would be sadly mistaken! The initial consult made me think I might want an implant, but now I had a new worry what if I did want one and couldn't have one!
Luckily a pool party had been arranged for my return, so there were plenty of friends and many beers to help our discussion. Throughout that week I had many changes of heart and fluctuated between thinking having a cochlear implant was the natural way forward and then thinking it was the worst thing ever. I could alternate between these states several times within a five minute period! I was at the time, and always will be, grateful to all my friends who listened patiently and provided their own view points during this tumultuous time. But there is one person who should get a special mention, Andrew was a friend and the visiting ENT Registrar from Brisbane who was with us for six months. At this time I did not realise that he has an interest in cochlear implantation (and I have no doubt he will be great at it if he decides to pursue it as a career). After listening patiently over a caffeine containing beverage, he just said 'they are really good, if you are offered a cochlear implant you should take it. I would if I were you'. It was the reassurance I needed.
Going down to Brisbane the next week, I still wasn't certain I wanted a cochlear implant, but had a much more open mind and was more receptive to any suggestions that might be made. I just had to get through my assessment with an audiologist. At this point I was even more suspicious of audiologists than I was of the ENT profession! I can remember meeting Anthea, who to this day is my (long suffering) audiologist. I was worried she might look at me with pity or judge me in some way for being as I was. This wasn't true at all, she makes me laugh encourages me to do new stuff and is generally one of the most remarkable, inspiring and positive people I have ever met. Throughout my assessment (I don't think I did really well at the tests-although I have never asked about my scores) she was encouraging, even when I began to get frustrated. I can be a bit over competitive at times and don't like to feel I am doing less than brilliantly - scrabble can get pretty nasty! At the end of our assessment Anthea took me to an office and showed me a cochlear implant and talked me through the rehabilitation side of things. I realised almost as soon as I met her how much I liked Anthea and she said she would be my Audiologist if I went for a cochlear.
Dr Que Hee's rooms are close to the Neurosensory Unit and as I strolled between them everything seemed much clearer. The factors I was considering were:
- I could not continue to manage as I was, it was too exhausting to be sustainable.
- Everyone seemed to think a cochlear implant was the only option open to me (I had finally given up the idea of head bolts).
- Andrew would have one if he were me and he is sensible and knows lots.
- Dr Que Hee, the ENT consultant seemed like a great chap, I already trusted him implicitly to make the best decisions for me (which is most unlike me!).
- Anthea seemed an extraordinary person who I knew would give me the best rehab ever and I could form a crack team with.
- In short, if I was offered a cochlear implant this seemed the best team I could ever imagine and now seemed a pretty good time to do it.
As I remember it, when I saw Dr Que Hee very shortly after this he just asked 'so do you want a cochlear implant?' I believe my reply was 'yes please' and that was that. The surgery was planned for three weeks time and I left his rooms feeling a weight was lifted off my shoulders, my decision was made. The Neurosensory unit also very kindly subsidised a cochlear implant for me which meant with my savings and some help from my family I could afford one. Everything was getting sorted.
That is not to say I didn't have wobbles over the next few weeks. Most of my Rocky friends were treated to some completely irrational (but very believable by me at the time!) fears over tea/beer and Dr Que Hee had to field a couple of fairly ridiculous emails. Time has faded my memory (and I hope his) of these pieces of correspondence but one that does spring to mind was 'how do you know the implant is not a dud and will work when it's turned on'. Dr Que Hee was extremely patient in his replies!
Time for my cochlear:
My day of surgery dawned bright and sunny in November 2006, I quite enjoyed my stroll to the Hospital, in fact so much so I was yet again running a tad late (how unusual!). I felt apprehensive as anyone (especially someone who is a control freak and much prefers being on the blunt end of the scalpel) undergoing surgery is bound too. We had a slight hiccup as I had stuffed up my consent form slightly (again, not extremely surprising I am the most gifted person I know for losing/stuffing up administrative documents!) By the time it came to waiting to go into the operating room I was having some serious second thoughts. As usual when I am under stress I resorted to denial. My thoughts at that moment were, I couldn't possibly really be that deaf, it was all a horrid mistake and I shouldn't be there. I was sitting in a wheelchair and covered by a blanket but most importantly I was alone, the time for absconding was now! I hadn't figured out the exact details of my break out but I figured I could sort out the finer details as I went. ('winging it' is an approach I frequently use and often works surprisingly well!) At that point I knew there was absolutely no way I could go ahead with this most terrible plan to get a cochlear implant. I stood up to leave and as I did so, the blanket fell onto the floor, I couldn't have the operating theatre staff thinking I was a slob and leaving the blanket in a heap. So I reached down and carefully folded up the blanket (any form of tidying up is most unusual for me!). At that point a friendly looking nurse came in and said we were ready to go, all at once getting a cochlear implant seemed a truly genius plan once again!
My surgery went fine and I felt really well after. That evening when my visitors had gone I snuggled up all cosy on the bed and wondered 'will this cochlear thing really change my life?' I had no idea what was in store.
I spent my week of leave from work recovering from the surgery, with Anna on the Gold Coast! I felt so well we had a great holiday! The only slight cautionary tale I have is I would never advise anybody to go to a theme park following inner ear surgery no matter how well you might feel beforehand! I suppose you could say I had value for money as two days after my Dreamworld experience I still felt like I was on their rides!
About 10 days later I was down at the Neurosensory unit with Anthea for the big firing up of my new ear. I was so excited, but had to bear in mind what Anthea had said. I probably wouldn't hear anything but noise for the first few days and understanding speech would come gradually. The first sounds were just noise, but a fabulous rich noise which I had forgotten existed. I watched as Anthea spoke and realised the noise was her voice it was great. But it was about to get even better! Suddenly to my amazement I heard 'and you are probably just hearing rhythmical noise instead of words right now' I couldn't hold in my joy 'nope! I just heard you' I squeaked! By the end of our session I could hear pretty much all words and even use the phone.
The next day at work I was on call and the Switch Operator kept getting jammed with my friends wanting to be put through to me! It was so wonderful to be able to chat easily on the phone, and of course with my family being overseas it was wonderful to enjoy chatting to them once again in this way. I loved my new ear and it just went from strength to strength. That is not to say there was not lots of hours spent doing the rehab, my friends and I listened to hours of audio books, Harry Potter (all of them) Ballet shoes, The Velveteen Rabbit and many others. My friends changed what could have been hours of boredom I would have come to resent into companionable, sociable activity which I really enjoyed. I am sure doing all this listening was why my cochlear worked so well and I could never have stuck to it without their wonderful friendship.
By the January of 2007 I was going from strength to strength and really enjoying life even more than I could ever have believed possible. I could not believe I had ever thought a cochlear implant was not a good option for me!
Princess hits a snag:
Having wonderful hearing and all the opportunities open to me was fantastic and I embraced all of them. Unfortunately when I lost my hearing I also lost my sense of balance. Before any of these events occurred I always had the god given ability to trip over a matchstick, so since the Assassin Bunny struck I have been a two left footed prime Gumby as far as coordination goes. It has never stopped me participating in anything (especially skating, surfing and horse riding, where I feel my natural enthusiasm coupled with 'unique style' should soon be recognised and allow me to turn professional!). But my Gumby tendencies do mean I am more likely to part company with my board/'noble steed' in a sudden and unexpected fashion! Over several months I had many falls and a few minor head injuries. By March I was feeling quite unwell and thought a fishing trip to Mackay would help.
While at Mackay (again with Anna) I began to feel dreadful, this did not stop me catching the biggest fish of the trip (a fact contested by my friend Lowey) but I was becoming concerned. The next morning my concerns seemed well founded when I saw myself in the mirror as my head over my implant was so swollen I was quite literally a boof head!
I returned home to Rocky to seek some treatment. We embarked on a regime of intravenous antibiotics and surgery to drain the abscess that had collected. After three weeks in Rocky it looked like we were making progress against this infection and I was allowed home, still on intravenous antibiotics but it was great to get out of hospital! By now among other things I was brilliant at Backgammon having been taught it by a good friend Craig, it was my sort of game - cunning, sneaky and you could stab your opponent in the back at will!
One morning at home though, I started to feel really sick. I remembered feeling like this once before when I had got sick from the rabbit bite. I went straight back to hospital, my worst fears were realised and I needed admitting to intensive care again. Because I had an unusually sensible moment and came straight to hospital when I felt bad, I only needed a couple of days in intensive care and after a change of intravenous antibiotics I was well enough to go to the ward.
By now it was becoming obvious I would need to see my specialist team in Brisbane when I was well enough. Some doctors don't like being treated in their own hospital and I can imagine for some problems it would be inappropriate, but for me with cochlear issues it was great. My friends had already been calling me 'Princess' for some time, and I was treated like royalty while I was a patient at Rocky. I was never short for company, fizzy pop, reading materials, anything. Chooky, one of my friends and wards men, either arranged for someone else to if he were off or bought up warm blankets from the operating theatre at 9pm (Princess does not like having cold paws!). I was going to leave this set up and go down to Brisbane where I did not have my friends and I would just be a normal patient and not a Princess! This was not good! Even worse I was being sent and seemed to have little option! Luckily with Dr Van Splunder being a friend, he suggested I should ring the ENT registrar down in Brisbane and arrange my own transfer. This is a little unconventional but it made me feel much better! I was also allowed out of hospital providing I stayed with Bob and Fionna (two of my very good friends) so they could help me with administrating my intravenous antibiotics.
I was terrified of losing my hearing for the 2nd time.
Despite the whole ENT team being some of the kindest, most hard working, helpful and generally lovely individuals, I was from that point onwards most grumpy about the whole business. Looking back it really would not have mattered what someone had said, I was terrified about losing my hearing for a second time in a way that no words I have can convey the horror I was feeling either then or now. In my mind being transferred to a hospital in Brisbane was a step nearer to losing my beloved cochlear implant.
Fionna and I decided we would make it into a little trip and take the train down and enjoy our journey. She had the rest of the week off and I was hoping I would be able to join her to return to Rocky. That was not to be, the first admission was to set a trend for prolonged admissions spanning a few weeks for intravenous antibiotics, maybe a washout of the implant then home on either oral or more intravenous antibiotics and then when the pain and fevers returned (as they always did) in a couple of weeks we would start the whole process again.
It was a hideous time during which I continued to feel very unwell. I needed many lines to be done for my antibiotics which in themselves are not the end of the world, but combined and over many months are painful and something I came to dread. But despite this and feeling terrible frustration, sadness and anger, I tried not to breathe a word of this to my ENT team. I am sure I whinged my fair share (especially being a Pom!) but I tried desperately not to, by now I had realised that my team were trying to save my cochlear so we were all trying for the same thing. It sounds ridiculous now, but at the time I thought it would be unfair to let my team know how desperate I was for them to save it and how horrific the experience had been for me. I didn't think they needed any extra pressure. Looking back I was wrong not to have trusted my ENT team and take them into my confidence. I am sure they knew how hard everything was. At the time though, it was a way of coping so I could continue through a very difficult process. I spoke of things relating to my ear and fevers to my doctors and my friends about how the experience was affecting me.
By June 2007 it was obvious to everyone but myself we were getting nowhere fast, and it came on one of my trips to outpatients that Dr Que Hee had to mention 'I'd like to take it out and start again'. I was stunned, was he talking about my line? (The ENT registrar and I had a misunderstanding with that one a few weeks before) surely he couldn't mean my cochlear? I was so numb with shock I cannot remember much of the consultation. I remember Dr Que Hee being very kind and making the point - I would be risking getting very sick again, and quite possibly dying. I felt detached from the whole business and heard myself telling him that I would rather not have surgery to remove my cochlear. It did not feel like it was me speaking anymore. All I could think was this is not supposed to be happening like this. I want to be well and surfing/riding with my cochlear working perfectly. As I got the train back to my friend's house I realised losing my cochlear was hideous but it wasn't worth dying over. I would have to fund another cochlear and at that point I had no idea how I would achieve that. But I trusted Dr Que Hee and if he thought we had reached this point I was prepared to believe him. I emailed him that night and said I had reconsidered. We arranged my explant for a short while later.
At this point I must mention two of my great friends who are absolutely integral to my story. Caroline and Martin were friends from Rocky, we had worked in ED together which (as is usually the case) proved to be a bonding experience. They had been through the early cochlear wobbles and then moved to Brisbane at the beginning of 2007. They were both my rock, and had bought their wonderful company and fizzy pop to visit me in Hospital helping to create some lovely times even in this spectacularly hideous set of events. It was them I turned to in the lead up to my explant.
I was so scared.
I was so scared I would turn in on myself while awaiting my new ear (we had planned for 6 weeks intravenous antibiotics and then I had to be well for several weeks prior to re implantation in the other ear). Normally I am a very happy and joyful person, but I think that is mainly because I am surrounded by such wonderful people. When I could not hear I used to think of it as being in a bubble which nobody could reach through easily, it was a bubble in which I was going to be alone with my own thoughts, a time for honest self appraisal which I would not be able to run from. I was really worried I might not like myself at all when it came to actually thinking about it. I confided these fears (and many others) to Caroline who agreed it sounded pretty daunting but together we hatched a cunning scheme. We went to a toyshop and bought all manner of great board games we could play while I was lug less. She also bought a magnidoodle for communication (this was insightful as it meant people could write and 'chat' without leaving transcripts (which can be a really dubious idea!) By making preparations like this I began to feel I could survive my 'between ears period'.
Martin helped me in a completely different way. It was approaching my day of surgery and two days before I was chatting to him and saying I was really concerned that throughout this whole experience I had not shed a tear. I knew I was bottling things up and was fearful that when I entered the operating theatre and saw this really was going to happen I was going to completely freak out and behave like a complete twazock! He had some days off and said he had the answer! A large amount of beer was then procured and quickly consumed, the idea being this would precipitate multitudes of tears from me and he might even join in. It was a truly genius plan (or so we thought at the time!) In the event no tears eventuated but we did have mutual appreciation of how terribly funny the other person was, lots of nostalgic singing, watching Star Trek for the deeper meaning Martin had found (I can't remember being terribly convinced there was a deeper meaning even at the time!).
Mine and Martin's bender had two effects. I was much more convinced I might be able to survive without my ears for a little while, and it also got me a savage (and not either unfair or undeserved) bollocking from my ENT team. In their eyes I was failing to understand the gravity of the situation. This was not true at all. I more than understood how stuffed I potentially was. I just did not have the words to describe the terror, sadness and anger I was feeling. Even if I had the words to describe my thoughts at the time it would have made it more real to share them with other people and if I didn't acknowledge them I hoped maybe they would go away.
Losing my cochlear:
Entering that operating theatre to lose my hearing again was the most terrifying experience of my life. I have never been that scared of anything and hope never to be again. As I lay on the operating table waiting for my sleep to begin, ending this chapter of my hearing was awful. At this point I must say that everyone in that operating theatre was exceedingly kind especially the anaesthetists but also my ENT team were kind in a way that has left a lasting impression on me. Before everyone got down to business they both came near and said a few words. It wasn't many words, but just them being there was great. As I was waiting for sleep I was glad that awful as it was, my team would sort me out. My faith in them was boosted by this simple act, up to that point I could barely contain my sense of panic after it was a little easier.
Waking up knowing that my wonderful cochlear was gone was the worst feeling I have ever experienced. I felt numb and empty, full of sadness and so very scared. As I lay in the hospital bed feeling wretched shortly having returned to the ward, the ENT registrar popped in and motioned I should try and sleep. This seemed sensible and I did my best to do, so but quickly realised that laying here wide awake in a chilly hospital gown surrounded by unyielding hospital linen, that sleep would not be easy. So I snuck out of bed and disconnected my drip (by now I was pretty good at that) and changed into my favourite cosy PJ's. I am a devout Christian and the only sanctuary from the tremendous hurt I was feeling was the Chapel. Luckily for me I was its only occupant as I took my seat and began to pray. Over this period of my life my prayer had evolved into something like this:
'Father thank you guiding my footsteps and giving me the strength to get this far. Thank you for guiding me into the care of these wonderful people, please bless them and keep them safe. Thank you for the wonderful friends I have and their support they continue to give me, please give them strength and bless them too. You have guided me so very well and I have come through much with you, but I am really tired and I am finding it so very hard right now. I know you will never ask me to endure more than I can, but I have to say I'm feeling pretty much at my limits right now even with your help. Please give me a bit of fair-weather even if it is just a chink of blue sky for a second, any let up would be great and then I would be more confident I can finish this whole episode with some grace.'
I do not know how many times I would have said this and similar prayers. That evening in the chapel I prayed for some time, then texted Caroline and she came and met me. We returned to the ward together and had a very closely fought game of 3D scrabble. It was one of the blue sky moments I needed.
In the first day I finished my honest self appraisal and found that ,arrogant as it sounds, I definitely liked myself! So destructive thoughts were not something I had to fear after all and the board games and magnidoodleing certainly kept boredom away. Over the next week or so things started to look better and my fevers settled. Over the next two months I managed to remain sociable with my group of friends. It was horribly frustrating to have to wait for people to write. But, it was not the isolation I feared, only because my friends are very resourceful people and very kind for putting themselves out.
Early in my period of deafness my salvation as far as funding goes also arrived. The Australian Medical Association Benevolent fund offered to help pay for my new ear. It was a very kind and welcome offer that I accepted immediately! Now all I had to do was wait for my next surgery date.
Getting my ears back again:
I felt completely different having my second cochlear implant. Instead of the bright optimism that this might change my life for good and uncertainty of whether this was a good idea for me, I was gripped by a fear so strong it knotted itself in the very pit of my stomach. I was feeling desperate. I knew how good this cochlear implant could be and how much it should improve my life. But what if it didn't work? What if I got sick again and lost this one? Instead of the wonderful optimism and excitement pervading my thoughts, I felt very little except dread for what the future might hold. But true to form I just didn't mention any of these things, lest someone think I did not want another cochlear (which could not have been further from the truth. I just could not face the idea of losing another one).
The night following surgery I could not sleep. Instead of laying awake wondering whether my cochlear would help me, I lay worrying. Why had the last one become infected? Was this one going to go that way too? Was it already infected? How would I know? The questions kept coming to mind and there was no way of reassuring myself at that time of night and it was not easy to drift off to sleep.
In the morning I felt better and went home with Martin. Indeed in daylight hours these worries seemed far distant and with Martin's driving skills to distract me from more remote worries, I began to feel like an idiot for worrying at all. Over the next two days I felt well but a little fragile. Then, on day three, I began to run fevers again and my worst fears began to be realised. I contacted my wonderful ENT surgeon via email and let him know about my fevers. He was concerned but we felt we should give it a day to see if it was just a cold or something.
Around this time the medical team that had helped manage me with regards to antibiotics and timing of surgery raised the issue that there might be an underlying problem with my immune system ( to say this was bad timing was an understatement). Going to see my consultant that day, I knew that an admission to hospital and all the unpleasantness that involved was likely. As I stepped into the waiting room I just felt an overwhelming feeling of oppressive sadness weighing me down. We had come this far through troubled waters and yet it could all be for nothing.
It was also by coincidence the very day that I was provisionally scheduled to have my cochlear fired up for the first time. I have never been so desperate for anyone to grant me a single wish. I felt nauseous while I was trying to ask Dr Que Hee if this could still go ahead, my stomach was twisting itself into tight knots. I could not bear to look at him while I made this request as I was worried what my reaction might be (which was a bit thick when you cannot hear!). Eventually I looked up and saw Dr Que Hee pushing a post it note across his table on this note was a single word 'yes' (underlined three times. I think he was looking forward to me having my ears back too!). I felt like a massive weight was lifted off me. The time in 'my bubble' was going to end in about two hours time! As this huge wave of relief washed over me, a cautionary finger was raised into the air by Dr Que Hee: he then drew my attention to post it note number two! Which had neatly scribed 'we need to arrange another admission' or words to that effect. I just nodded happily, I was neither listening in an auditory fashion or any other way. In two hours I would be back to hearing things and that is all I could think of. At that moment I realised that when I was given my hearing back nothing would matter anymore and I would do whatever it took to keep it.
Turning this cochlear implant on was a very different experience to my first. By now my optimism about being turned on had been replaced by desperation that I could not lose this one. Again words failed me at this time; it was still wonderful to be able to hear again, but my hearing was not quite as developed as it initially was with the other ear. But over time it would get better and I was confident this cochlear could be every bit as good as my first one. It was so wonderful to be able to hear and chat again, truly liberating. But, of course there was the black cloud on the horizon of my admission to hospital. It came and went as an experience, it was unpleasant in many parts but now I had an ear to protect and was just desperate that everything was done to stop me losing this implant as well.
The old pattern of having fevers and being unwell sadly re-established itself, as did my frequent admissions to hospital. I also developed several other infections needing treatment. During this terribly frustrating time my amazing friends continued to support me in every possible way. I must have seemed blasé to people who I wasn't confiding my fears of losing the implant to, or, sharing desperation and frustration at my seeming lack of progress. I wasn't really taking events lightly, every time I was having fever of a rigor (they are very unpleasant, painful things) I would be thinking maybe I have seeded this implant and it was a terribly worrying time. With the occasional incision and drainage of my implant or washout everything could be temporarily settled down. Things reached an unfortunate crescendo when yet again I needed another intensive care stay, it was only brief but it highlighted in my mind (and I assume everyone else's) that despite our best efforts things were not heading in an ideal direction.
During my last admission (I have lost count of how many I have had over the last fifteen months, but I have now got two folders of inpatient notes) I started a new medication from the immunology team who also look after me. They have found my white blood cells aren't real flash and don't do much against infection (they are pacifists of the white blood cell world). The result of the new medication has been stunning, almost instantly my head de-boofed over my magnet and I'm now back to wearing a 2 strength magnet rather than the six strength we had to resort to, the pain around my implant has completely gone, I feel really well again and the fevers have stayed away. It will be a little while before we can say for sure that this new medication has worked, but I am certain that it is working.
Adjustment:
As you can see from my story the last couple of years have been a rough trot and I haven't had the resources to deal with things that have happened. All I have been able to do is keep plodding along hoping things would get better. About six weeks ago I felt grumpy and sad for a whole morning and yet had no idea why. This bothered me somewhat as I am not normally like this and if I am grumpy I can usually give you an exact list of what has made me so! That evening I was chatting with friends and still felt sad, it was then I figured out I did feel sad about things that had happened to me. Going deaf, being sick, having wimpy white blood cells and losing my cochlear were not events that were fun, and now I felt sad they had all happened to me. We all chatted over many cups of tea in the next couple of days and figured I was experiencing a delayed grief reaction to everything that had befallen me. By now I was feeling much better and happy again and thought I would email my audiologist to check that this was not the beginnings of me turning crazy. Luckily for me she reassured me that what I was feeling was pretty normal and most people feel this way at some point. This was reassuring and I was able to move on safe in the knowledge that I was absolutely normal if not a little bit slow!
Since being well I have been able to plan events without the worry I would be in hospital by the time they arrived. Even when I was feeling sick I would prioritise having fun whenever I had the opportunity. So at the first chance I got I would be out on my board, now I still surf whenever I can, but the urgency to snatch every happy moment has left me.
The story of my journey with a cochlear has concentrated on the actual nuts and bolts of it. I could describe many experiences during this time that have filled my life with joy and I've been able to do that because of my cochlear. I went home for Christmas in 2007 to see my family and the joy and amazement they received my cochlear with was wonderful. Even in large groups I have no trouble hearing and can follow events with ease. The many phone calls I have enjoyed; I use the phone with no problems what so ever and every call holds a joy of being free to make it (my friends and family also share this to some extent).
This year I got a stethoscope I can use with my cochlear which again is a wonderful thing to get back. It is the final skill I needed to now mean there is nothing I cannot do. My stethoscope cable also fits an MP3 player (which I rapidly invested in when I realised this fact!) and so I can now enjoy my 'dangerously cheesey' taste in music whenever/wherever I chose. (It's strange none of my friends seem to want to borrow my MP3! Maybe cheesey music can only truly be appreciated by people with a cochlear implant?). Throughout my illness I have needed time off work but have managed to continue with my posts as planned and still love being a doctor, more specifically a surgeon. And of course I have continued to behave with my Princess tendencies!
My cochlear implant is working hoobaciously and I'm planning on it doing so for many years to come. This whole experience has meant I have now come to terms with both being deafened and having a cochlear implant. My over riding view of cochlear implants is that they are amazing bits of technology that have given me my life back, although I wish I had never needed one!