The first week - and retuning!

I have returned from a lovely week away experiencing lots of new sounds! My friend Bethan went on holiday after her switch-on to better relax and get used to hearing new things, and we thought that would be a good excuse to go on a little road trip around the North West visiting friends and family and drinking a lot of beer/wine/cider. It was actually brilliant to get away and relax; it stopped me from sitting in the house thinking about what I could and couldn't hear!

I tried to keep a note of what new sounds I was hearing but I gave up after a while, there were too many! Here is a brief diary.

Day 1 - already described in last post. You may recall that I signed off to go and watch Daredevil - this was quite good to watch because I could read the subtitles and work out what noises fit into speech. Even though it was all very beepy.

Day 2 - Wednesday

I woke up (never mind what time) and got up to go to the bathroom with my implant on. Switched the bathroom light on to start brushing my teeth, noticed a funny chinky noise which was really pretty (weird I know). Turned around and realised it was the metallic clink of the bathroom light pendant banging off the radiator!!!! I have heard this before with my hearing aids, but never realised how high pitched it was before. And with my hearing aids I would certainly never have noticed it with my back to it. I think because my brain is not at all used to hearing high noises it sits up and pays attention when any come its way. Apparently this will settle down with time as I get more used to it. Loving the novelty at the moment though!

Had breakfast; I could hear David scraping butter on his toast and chewing his toast. I could hear my tongue on the roof of my mouth. If David pointed it out I could hear Rhubarb's claws clacking on the hard floor. If everything was very quiet I could hear the kitchen clock ticking!!!!!!!! 

We spent a happy morning gardening and playing with our ridiculous new compost bin (yes, I know, middle age beckons). I could tell when David was saying my name from behind me, and would turn around to see what he wanted. I'm sure that novelty will wear off soon enough...

We headed over to the Lakes that afternoon - the car was quite noisy so I felt like I wanted to turn up to programme 3 to bring the high sounds up a bit. I still haven't got over the car indicators ticking! 

We walked Rhubarb in the park, where I noticed I could hear all the birds chirping! Including this robin ....

Went to a restaurant - I could hear the women on the table next to us laughing and the occasional cough (I had no idea coughs were high pitched). Amber and Richard turned up for some more drinks, and I found I could understand more of Amber's voice than David or Richard's - obviously it was higher-pitched so I was getting more input. Yay for lovely sisters-in-law!

Day 3 - Thursday

squinty faces

We got up and went down to breakfast. I experienced a repeat of all the noises of yesterday's breakfast - including the woman 2 tables away scraping butter on her toast!

We hiked up Cat Bells which was stunning, if very windy!

 Again the wind noise seemed to mask other sounds, but I could still hear footsteps and stones scraping. I could also hear bikes whooshing past when we were back on the road. Not cars though - perhaps they're too low-pitched. 

view from top of Cat Bells over Derwent Water

Day 4 - Friday

evidence that I camped

I could hear David shaking out a plastic bag from 2 rooms away, and heard him bashing his shoes together outside. Rhubarb's clicky claws started to become more obvious. I could tell when the hoover was switched on, and when it stopped, but not the sound in between. I'm guessing that's because it's low pitched. Water running from the sink is still one long high noise/beep. 

We set off for our campsite in Ambleside; I could hear yet more birds tweeting all around us. I couldn't really hear the wind outside the tent but David assures me it was extremely loud... Friday night we treated ourselves to a meal at the Drunken Duck, which was lovely. Unfortunately my implant batteries ran out and I didn't have any spares on me, so I had to switch back to my hearing aid for the evening. Was surprised how much I missed all the new noises!

Day 5 - Saturday

We walked back to the Drunken Duck to get the car - yet more birds tweeting. I couldn't make out individual calls but could tell I was getting a lot of beepy stimulus! I could make out the car keys rattling when we got in the car. 

Headed off to Liverpool to see my brother Tim - he was v. surprised that I could follow him with only the implant switched on - he thought I must have my hearing aid on as well! (I have been keeping my hearing aid in my right ear but switched off - otherwise I would probably lose it.)

Some Liverpudlian sounds: swan hissing in the park, ice clinking in cider, crisps crackling in pub, glasses clinking in restaurant. 

Day 6 - Sunday

I heard a seagull on the beach! and all the sounds mentioned above.

When we got to Manchester I cheated a bit and put my hearing aid back on so I could get the most out of seeing Caroline and Jonathan - which was lovely as always. Caroline and I were so excited by the spontaneous Sunday night fun that we drank far too much wine. I found that the hearing aid and implant worked quite well together which is great, because the ultimate goal is to have them both on, giving me a sort of blend of sounds. For the moment though, my rehab will go faster if I stick to just the implant, giving my brain no choice but to use what it gets through there. This will help it lay down all those neural pathways more quickly. 

Day 7 - Monday

I had a tuning appointment in Co. Durham (one of JCUH's outposts for those living further North). We drove up from Manchester, with me talking to David (my chauffeur) the whole way. I've started to realise that speech is slightly easier to interpret, even though it's not sounding like what I would call speech. Just having that input of the consonants ("ssss", "CH", "TS" - they all sound very hissy!) makes a sentence easier to follow and really aids my lipreading. 

My audiologist Ruth was very pleased with my progress so far, particularly all the new environmental sounds. She was also chuffed that I'd been wearing the implant pretty much exclusively - for reasons mentioned above. I was now on level 4 and had been for the last couple of days - it wasn't uncomfortable. In fact a lot of noises that had seemed really loud at first, like fingers clicking, had diminished in volume. This meant that I was ready for a volume increase - level 5! 

First Ruth sorted out my magnet - I was wearing strength 4 from switch-on, which was actually starting to get uncomfortable if I wore it under my hair. I was having to wear it over my hair to try and cushion it. She changed me down to magnet strength 2, which felt much better. Then she plugged my implant into the computer and played lots of beeps at me. I had to say when I could hear them and how many beeps there were. This then enabled her to make my new "map" or programme, depending on how I responded to each beep or sound. I'm not responding as much to the lower frequencies, because I've had more of them before. So the new map has more input on the lower frequencies. The high frequencies are still very sensitive so they have less input. 

This all seems like audiological wizardry to me but Ruth did a great job of explaining it: it's not a case of just turning everything up willy-nilly - it depends how my brain is responding to each frequency. I don't know what any of the numbers pictured here mean but the general picture is of more "oomph" in the low frequencies. 

I was also given my Cochlear wireless accessories: a waterproof swim kit and a wireless microphone that clips onto people's lapels (for e.g. lectures or noisy restaurants). Like Christmas for deafies! 

As ever with a new map/any change in volume, everything sounded very loud and weird at first. It quickly settled down though and after checking that nothing was too loud (by clapping, and playing me some beeps) Ruth waved us off with my new hearing swag. 

Everything seemed much louder as we walked out to the carpark, but nothing was uncomfortable. When David spoke I felt like I was getting more out of the words - probably the slightly louder lower frequencies. We got home and set about tidying and mowing the lawn - I could hear the lawnmower but it wasn't particularly loud (low frequencies again). I could however hear the fire crackling and popping! 

I have 2 weeks now before I go back for my next mapping. Ruth is planning to do another hearing test then to see what I'm picking up after 3 weeks with an implant... That will be interesting! As before, I have 4 programmes to move through, but they are much louder than the old ones so I have longer to move to each new one. The last one, programme 4, will be the biggest change because both loud and quiet sounds will be amplified the same amount. Currently everything is being amplified to quite a narrow range. I can hear a pen tapping quietly, but a loud clap sounds about the same level as the pen. Because my freshly implanted brain would probably explode if a clap was amplified to as loud as a clap actually is, I'm on quite a narrow range of volume to protect it and give my brain time to adjust to essentially being electrocuted. However, programme 4 will be more 'natural'-sounding in that loud sounds will be amplified to a loud level, and quiet sounds will be amplified to a quiet level. I cannot wait! But baby steps first, walk before can run, etc etc. 

 On the whole I feel very positive about this - I'm not expecting sounds to be "sound" like for a good while yet, and I know I have to relax and let my brain do the work. I know I'm doing all the right things like wearing my implant, leaving the hearing aid off, listening for noises and asking David what they are. I admit sometimes I get slightly impatient, wishing that speech sounded like speech already, but everyone is different and with my pattern of hearing loss (extremely deaf since birth) it's going to take a while.

This afternoon I have an appointment with my rehab therapist, Sandra, and then the surgeon who will hopefully be as pleased with my scar as I am! 

Will keep you all updated. Sorry for mammoth post! 

ERMAHGERD SWERTCH ERN!

Still reeling from last night's Game of Thrones and the horribly early start (after 4 weeks off, 7am starts recede into distant memory), I presented myself at JCUH at 9'o'clock this morning. I was welcomed by a very nice audiologist called Jen, as well as another audiologist who was returning from maternity leave, and a medical student who turned out to have been at my operation. Jen explained what we were going to do; we would run through some tuning checks and then do the proper "switch on". The implant had already been checked at the operation so they knew it worked - this immediately relieved my small panic that it might not work at all! 

my Cochlear Nucleus 6 in all its beigey glory

Jen had a quick peek in my ear and put my new implant processor (Cochlear Nucleus 6) on my head. She tried a couple of different magnet strengths - sometimes they need to use a slightly stronger magnet at first if there is still some residual swelling from the surgery. Once everything was attached appropriately, she started to run through some tests of the electrodes - they were all on green on the computer screen. Then she said she would try me with some beeps, to help set the switch on volumes/input levels. I steeled myself for whatever I was about to hear..... and jumped in shock as this completely bizarre sensation arrived in my head. I can honestly only describe it as like the start of a migraine - very electrical, pulsing and definitely not sound. Not sound at all. Not even close. It was just a palpable sensation of there being something different.

Jen was clearly quite used to having people jumping out of their seats and was very nice and calming. She played it again for me and once I had calmed down I could tell that there were 2 tones going on. That beep was quite an odd low sound, and I found the high sounds a lot easier to distinguish (which is very unusual, normally with hearing aids and having pure tone audiometry I love the low sounds and the high ones give me tinnitus!) 

We moved through all the beeps and I said how many tones I could hear - 2, 3 or 4. By the end I could tell quite easily that there was a difference in the tones. After all that was done it was time for switch on! So I switched off my hearing aid and sat and waited. Jen fiddled with the mouse and then said, "How does that sound?" 

Again it wasn't really sound, it was a series of pulses that arrived in my brain and said we are here. It was an oddly physically thrilling sensation. A bit like that buzz you get after the first gin and tonic. I was rather taken aback by it all - I could tell people were speaking because their lips were moving, obviously, but I really couldn't tell if they were shouting or whispering or anything. Jen asked if I could tell any difference between the beeps when she talked and when David talked, and I found that I could actually, even though I couldn't explain what the difference was. With the higher noises, I felt that they were all coming through and sounding like tinnitus, except it was tinnitus that stopped when people stopped talking. 

At one point I looked down to find something on my phone and could tell that people were talking (NO idea what they were saying but I could still tell it was going on without looking)!

After a bit of chatting with that on, Jen turned it back off to do some more magical audiological fiddling. I switched my hearing aid back on and sat flabbergasted. She then switched the implant back on so I had the effect of both of them together - which was quite nice, just like my normal hearing but with an overlay of tinnitus. She let me keep my hearing aid in for the technical bit where she explained how to charge all the various bits of kit I now have. I was to go home with 4 programmes set on the processor. They are varying degrees of loudness as soon my brain will adapt to the input and I'll start to find it gets quieter - when that happens, I will switch up to programme 2, 3 and then 4. Ideally I should be on programme 4 by the time I come back next Monday for my tuning.

After a bit more chatting and checking that I was happy with the current sound levels, we were waved off. I popped to the loo where I spent a good deal longer than necessary playing with all the sounds in the loo - the door lock, the loo roll, the foot pedal bin - David was waiting outside laughing his head off at all the bangs emerging from within. I was particularly entranced to find that breathing in and out makes a very high whistling noise. I was probably blowing like a hippopotamus.

The car journey home afforded even more delights - I could hear pens tapping on the dashboard, the clicking of the car fan dial, the clink of the pound coins for the Tyne Tunnel (this one is my favourite, they sound so musically clinky!) By the time we got home I had decided that things were too quiet and had switched myself up to level 2, just in time to hear the indicator ticking as David indicated for the turn on to our street!! Aaaaah!! 

We spent another happy 5 minutes in the car playing with all the clicks and indicator noises and pound coins, then took Rhubarb out for a walk to Teasy Does It (our favourite café). On the way there I noticed I could hear my shoes scraping along the ground, and sticks snapping. Even leaves tearing! Left a trail of destruction like a stick insect on the way to the café. In the café I could hear the coffee being ground with the fancy hand grinders, and Lesley steaming the milk for the coffee! The plates and cutlery sounded really loud too. It's - again - really hard to describe, it's not sound per se but it is starting to become recognisable as sound. It's a bit like looking through a sheet of black paper with a few pinholes in it - a few little chinks of sound make their way through, but for the most part I feel like I have my hearing aids switched off and every now and then I get a "ping!" of noise. When people are talking I can only see their mouths moving and a seemingly disconnected tinnitus-like noise playing over the top. 

I'm very glad I didn't watch too many YouTube videos of people being switched on - if I'd expected to hear speech straightaway, I would have been really disappointed. I think for someone who has always been deaf, this is quite a normal reaction, as my brain has NEVER heard coffee being ground before and certainly never picked it out of a loud noisy environment! I can already tell that having the high frequencies is going to make life so much easier; I think all sound is going to be sharper, crisper and brighter. 

We walked to Morrisons to get some celebratory steak for dinner, and on the way there I was quite confused by how much quieter it was outside than when in the car or café. I think this was wind noise masking the higher sounds. When we were home again I started banging around on the saucepans with a wooden spoon and generally clinking all the things. I ran the tap to get some water and could tell when the tap was running, because it was one long sort of beepy high noise. David tried to get my attention just now and I just KNEW he had said "Roz, Roz" even while looking down.

Just typing now I can hear a little beep or high "chink" every time I bash the keys. I can hear my breath whistling in and out of my nose/mouth. My friend Andy from DELTA popped in and I found I could hold a conversation reasonably well, but again it was just lipreading with a sprinkling of beeps. I must admit this is more tiring than I thought it would be - I had gone up to level 3 by about 5pm - getting greedy! but typing this with background noise of people talking and Rhubarb letting off the occasional INTRUDER ALERT!! bark is actually quite tiring and starting to get on my nerves a bit. So I have gone back down to level 2 to see if it's any easier. There you go, not all sunshine and rainbows! 

Off to cook a steak and chips, boom boom. 

fetching new headgear

Love,
Cyborg
xx














P.S. Here is my switch-on video as promised, captioned by wonderful film-maker and husband. Not sure where the captions have gone on the embedded video below - if you need captions, open it in YouTube and select the cc option:

Pre-switch on jitters

It's now less than 24 hours and counting to switch-on! Ahem, I've been told that we're supposed to call it "activation" these days because "switch-on" sounds too much like flicking a switch to - ta daaa! - restore hearing. Whatever. I like "switch-on" and I shall continue to use it. Even though I doubt I will have any sort of tear-jerking, life-affirming, Youtube material "I can hear!!!" reaction; I'm more worried that I'll swear enough to turn the air blue and we won't be able to show the video to my grandma and grandad. 

I haven't really done any sort of psychological preparation for switch-on, unless you count drinking a lot of prosecco this weekend. I tried putting my hearing aid in my implanted ear this morning (I keep having loads of weird dreams about doing this, so I figured if I actually did it then at least the dreams would go away.) I put it in and ironically heard David saying, "Well you know you won't be able to hear anything..." (Obviously I was lipreading him as well, this was not some kind of CI-type miracle.) The sound isn't the same as it used to be, and it's definitely not as loud. but there is some sound! This makes me feel slightly better about switch on, as if it all goes wrong then I at least have some extremely crap hearing left. 

I'm not entirely sure what to expect tomorrow - I know they will have to "tune" each electrode and check it's working, then make up some kind of map for my first week. I know some people have been sent away with two or three maps, so they can increase their input as their brain gets used to the new sounds. Beyond that, though, I have no idea if I will be able to understand speech or even work out what any sounds mean. Will it be beeps? or buzzes? or will everything just be robotic Donald Duck/Wall-E lovechild noises?

I have also excitedly started to create a playlist. I asked on Facebook what song people would recommend to someone who has never really bothered with music before - now have an overwhelming collection of responses, some of which are small essays in their own right! I should try to explain my relationship with music. I am tone-deaf as well as actually deaf, so I can't even carry a tune. (I don't even know what "carry a tune" means, if I'm honest.) So I've never been that interested in music - I did make a desperate attempt to blend in, in my teens, because it seemed all everyone ever talked about was sodding music, so I got a CD of 'Californication' by the Red Hot Chili Peppers. I would sit in my room and read the lyrics sheet and try to stay in the right place in the song, but it was almost impossible unless I got to know the song really well. It took more energy to listen to music than to do my homework. After a while I just did my homework and then settled down with a good book instead. 

I think the problem is that I don't have enough high frequencies to help me discriminate between sounds, so all music just blends into a mash of noise; hence it takes an unbelievable amount of concentration to listen to lyrics, given that I rely HEAVILY on lipreading normally. People sometimes suggested that I try songs with little or no lyrics, but they were just boring because I didn't get anything out of the instrumentals. When Youtube came along I could watch music videos, or those videos where the lyrics come up in time, but again I just got bored of listening to the same songs over and over. It was not a particularly relaxing experience either because of the need for concentration - none of this lying back on a bed relaxing blissfully into the "gorgeousness and gorgeosity made flesh" like Alex in 'A Clockwork Orange'. (If Alex had been deaf, that book would have been far more boring.)

The CI team have been careful to point out that most of their implant recipients have not gone on to enjoy a successful career conducting the Royal Philharmonic Orchestra. Apparently the implant still struggles with music, because it's such a complex sound to interpret and even the best processors find it difficult. Some people find that they enjoy the songs they enjoyed before, but can't get used to new stuff. Or they don't like their old songs because they sound different. I'm honestly not too bothered - music has played such a small part in my life to date, and yet I still feel I have a very rich life. So if I can eventually "get" music, or enjoy it much more, then that's a bonus. If I don't, I won't be upset about it as I know there will be countless other benefits that come with the implant.

On that note I am off to find some Harry Potter audiobooks; as part of my rehab process I will be listening to Stephen Fry's dulcet tones every night. Hurrah!

Au revoir!

P.S. This video is a v.g. visual explanation of what a CI does, works even on people who have drunk a bottle of prosecco each, as we found this weekend.

P.P.S. Scar (now 4 weeks post-op) looks awesome. Hair looking a bit daft as it grows back in - any styling suggestions welcome! 

Recovery

2 weeks post-op today! How time flies when you're having fun....Have just deposited sister at airport and am sitting next to the fire while the dog dozes. Perfect time for a blog post! I seem to have been very lucky in my side effects - I really don't have any complaints to make (which is probably why I'm so late with this update). I would however like to have a serious word with the weather; where the heck is the glorious sunshine we normally get in May when I am on nights or revising for exams??? Never been so fed up of sod's law.

On a more positive note, thank you so much to all you lovelies for your kind messages, flowers, cards and presents. I feel very lucky to have such caring and thoughtful people in my life :D 

OK so a round up of my 2 weeks post-op and various side effects:

Pain: was honestly nothing too bad at all. It was mainly inside the ear itself but also around the site of the internal magnet too - this is higher up than I thought, as it's been tunnelled in further up under my hair. (I thought it was somewhere next to the scar in the shaved patch, but no.) I spent a couple of days religiously taking paracetamol and ibuprofen, then dropped the ibuprofen because it gave me gastritis and hampered my wine-drinking. After a week I was only needing paracetamol about once a day, normally to get off to sleep or when waking up. I couldn't sleep on my left side for about a week but as the pain and inner ear fullness dissipated I have managed to get back to my favourite sleeping position, which is bizarrely a left sided recovery position.

Inner ear fullness: has been the most annoying thing - a mild throbbing and feeling of pressure that was there all the time but worse on bending down etc. It's just blood and fluid in the middle/inner ear and it drains away by itself as everything heals. I've read a few horror stories where people have had icky altered blood draining into their mouth through their Eustachian tubes - thank goodness nothing that gross has happened to me (have a v. low gross-out threshold for a doctor, thanks to 4 months of vascular surgery as F1 - has scarred me for life). 

Balance: I have had the odd feeling of being very slightly "off kilter" - this is really hard to describe but some days, I feel like when I nod my head it's nodding curved instead of straight?? Or like my head is moving too far when I move it. OK I sound bonkers. No true vertigo or dizziness though, just a weird off-kilter feeling. Probably due to the fluid described above. 

sticky out Shrek ear

Swelling: was quite alarming initially. For the first couple of days I had swelling around the front of my ear up the side of my face, and my left ear stuck out a mile and also appeared to be slightly lower than the right... I was starting to think I would need another op to have it pinned back! But 2 weeks later it is almost back to its shapely self. I didn't get a photo of the scar when it was at its most swollen - about 3 days post-op. At that point it felt quite throbby and looked a bit angry, but settled down soon enough. 
Being myopic as well, I really appreciated my contact lenses as my glasses weren't very comfy against the swelling.

Numbness: I was warned my ear would be temporarily numb. This is indeed a very odd feeling - it feels quite numb behind my ear and over the top of the pinna. This will get better over the next few weeks to months as the nerves grow back - it's improving already. Everyone has pointed out that now is the perfect time to get a piercing, especially with my undercut, but I am too much of a wimp! Also I think the CI team might kill me if I pierced my implanted ear then got an infection....

Jaw ache: no-one really warned me about this so I did freak out a little at how sore it was! Jeanette (who had her op about 8 weeks before me) said not to worry, hers was sore too but she had actually forgotten about it! I almost forgot to include it in this list, so it really doesn't last that long. Small mouthfuls of squishy food for the first few days helped. I still get the odd twinge so I will put off going to the dentist for a little bit longer....

Tinnitus: not had any. But then fortunately I don't normally get it unless I have a cold. 

me

Jane Fonda

Disgusting hair: going a week without washing was difficult; by the time the end of the week rolled around I was channelling Jane Fonda circa 1980 and had nearly used up all my dry shampoo. I have never been so glad to wash my hair!!! 2 shampoos later I felt human again...



Scar is pretty neat and healing beautifully. I haven't had the guts to give it a good scrub yet, as suggested by the surgeon, but a few stitches are coming out round the sides. My surgeon was very pleased with it at the post-op review; he said the hair was very Mad Max! (alas no subtitled showings yet for Fury Road...) 
I am actually just about to have my hair tidied up and go for a proper undercut - when else will I ever get to do this?!

In other news, I have my switch-on date - 2nd of June! eeeeeek! Not really sure what to expect - except the unexpected! I'm trying to tell myself to relax and just go with the flow, and try not to freak out too much at whatever comes through the processor. I'm worried that I'm secretly expecting to be able to understand voices straight away and then will be disappointed and cry. 

I also have a sheaf of other tuning appointments which I should start putting in the diary actually. 

While I wait for switch-on, I am managing with just one hearing aid in my right ear - much better than I thought I would, but obviously I am pretty good at lipreading my family and closest friends. If I was back at work in A&E/ECU with just one ear I think I would really struggle. It's surprisingly hard to lateralise sound, and I have been finding it harder than usual in loud noisy environments. I've not yet been able to pluck up the courage to put my hearing aid back in my implanted ear - I think I would just freak out if there was no sound at all. (There probably won't be, as most cochlear implant ops destroy what residual hearing you have left. Granted, my residual hearing is pretty shit, but it took a long time for me to let go of it and take the plunge with the op.)

Time to pop to the hairdressers! ta ra darlinks. 

Cyborg

I've just got back from the wonderful James Cook University Hospital, where I had my cochlear implant yesterday morning. I thought I would write down exactly what I experienced so anyone else thinking of CIs has a benchmark experience to look at. (Apologies if it is a bit long and waffly, but I would have loved to know all the little details before the op. Also further apologies if it is too medical/not medical enough, I find the balance hard to strike! It was a very weird experience to find myself a patient again, especially now I've had 2.5 years working as a doctor "on the other side".)

We stayed with the wonderful Christine and Mav who were superlative hosts as usual. They and Matt cooked us the most derishus stirfry - I was v. greedy and had 2 helpings, knowing full well it would be my last meal for a little while. Didn't sleep too well as kept thinking about the next day! I also kept waking up and confusedly thinking it had been done and was all over - haha. Finally woke up at 6.30am. Tried to substitute breakfast with a long hot shower. Still hungry, I rocked up to the Female Surgical Admissions Unit at 7.30am (or a tiny bit later; we managed to get a bit lost as JCUH is humungous!) David sat with me until I was called through, then went off to walk the dog and get himself breakfast. I sat around being hungry until some nice nurses came and checked my ID and put wristbands on me, discussed my "allergy" of gluten and put a gluten allergy wristband on as well (which I found a bit ridiculous but better safe than sorry - as Christine said, I could have come round from my anaesthetic and started demanding gluten-y bacon butties!) I was then suited and booted in a suitably hideous hospital gown and TED stockings (to prevent any DVTs).

pre-op nerves!

The ENT registrar popped along to check I was there, and drew a "this way up" arrow on the left side of my neck, pointing at my left ear. The anaesthetist came along as well to do an anaesthetics clerking - as I've had a general anaesthetic before for my lymph node biopsy she didn't seem too worried about anything. Then my surgeon turned up to say hello and see if I had any questions - it was really good to see him as I was starting to get a bit nervous by this point! He was very nice and reassuring and I felt much better. 

I walked round to theatres - by this time it was nearly 9am - with one of the nurses and hopped on my trolley, lay back and commiserated with the anaesthetist about how rubbish my veins were post-chemo. She got access easy-peasy though and then - after one final identity check - a mask was popped on my face and they said, "You will start to feel light-headed now..." which I immediately did. I don't really remember much beyond that apart from a odd feeling of floating away....

I woke up in recovery at about 11am and honestly my first thought was, "oh shit what have I done?!" followed by "DOES MY FACE WORK??" I was rather paranoid about a facial nerve palsy despite this now being a very rare complication. Fortunately my face did work on both sides and I felt quite awake. I couldn't stop shaking which was v. annoying - this wore off after about 10 minutes. I was offered IV morphine but the pain really wasn't that bad, so I declined (for which I am now kicking myself, I could have been high as a kite!) I was rolled back to the ward where I had to lever myself off the trolley and onto the bed. As soon as I sat up I got this alarming blare of tinnitus in my left (newly implanted) ear, and felt very dizzy - fortunately the dizziness wore off quickly and I think it was just being woozy from the anaesthetic rather than any inner ear pathology. 

I also appeared to have been attacked by cannulas while asleep....

I immediately asked to have my phone plugged in and was on Whatsapp and Facebook straight away - thank God for the modern world! I spent a while poking my face and the ginormous bandage. (This was a pressure bandage which would be on for the next 24 hours, to reduce any swelling.)

My surgeon appeared later on at about 12 and said it had gone fantastically well, he was really pleased with how easily the electrodes had gone in. He then looked sheepish and said that his registrar had been over-enthusiastic with the head-shaving and I might be in for a shock when the bandage came off, so he felt he had to warn me! However having been entirely bald before I wasn't too bothered....I immediately went on Pinterest to pin Natalie Dorner style undercuts. Then I lay in bed dozing a bit and playing about with the bed controls. I had some codeine and Oramorph and then Christine appeared in her scrubs and got the nurses to make me some tea and gluten free toast - nomz nomz. I had a really sore left TMJ (jaw) at this point - not sure if it was the airway management or the surgeon leaning on my jaw? I shall have to ask him next week.

I had a little nap for an hour then the rest of the day passed in several cups of tea from the lovely nurses, and reading "The Angel's Game" by Carlos Ruiz Zafon - v.g. 

flower! and also head bandage

Christine popped back at 5 to see me again and we had a good natter. She left when my gluten free shepherd's pie arrived - I managed to eat it without too much jaw pain, then read some more until David arrived. Christine and Mav returned with the most amazing curry which was far better than the hospital offerings. We all ate together and talked some more until they got kicked out at 9pm. My drip of teicoplanin and meropenem was started (second of three - is best evidence for antibiotic prophylaxis apparently.)


I brushed my teeth and tried to get my head down for some sleep but was starting to develop an alarming C6-8 parasthesia (pins and needles) in my arms - I worked out that it was the bandage pressing on my neck nerves and asked the nurse to loosen it which helped a bit. Had some codeine and got off to sleep OK, despite the ginormous bandage and cannula in my right arm! (I normally drop off to sleep on my left side but I doubt I'll be doing that for a little while!)

Was awoken at about 4.30am by nurse checking my obs - aiieeeee! - and couldn't get back to sleep after that, so I had some codeine and a cup of tea and some toast, followed by ibuprofen and paracetamol. And the third drip of antibiotics!

mathematical!

I sat about reading Adventure Time (thanks Matt!) all morning and drinking constant cups of tea, then went down to X ray for my skull X ray to check the implant was in the right place. This was then reviewed by my surgeon; he came to show me my new wiggly little wires in my head! SO COOL! The bandage was taken off and I asked for a mirror - at this point the surgeon looked like he might want to run away. However I was pleasantly surprised at how rad it looked - will be channelling a fierce look for the next few weeks! 

After that it was a matter of getting dressed, getting my stuff together and saying goodbye to the lovely nurses. I toddled out to where David was waiting and off we went home. 

A summary of my side effects:
1. A slightly numb left ear 
2. A feeling of fullness in my left ear - like a middle ear infection. Bit of pain and throbbing but nothing horrendous.
3. A fuzzy shaved bit of head oh yeaaaaah! Feels like a stubbly peach :D
4. Very short-lived tinnitus which only lasted a few hours post-op
5. A sore left TMJ - hurts to chew so I am taking small mouthfuls for a change
6. A fleeting feeling of nausea post-op in recovery
7. A persistent tachycardia of about 110 - probably a combination of pain, stress (from people telling me I was persistently tachycardic) and dehydration. Seems to have settled now. 
8. Bit of a sore neck and a tight feeling across my left scalp
9. Oh yes and I can wiggle my right ear but not my left any more! as this was one of my party tricks I hope it comes back....

No facial nerve palsies, no metallic taste, no numb lips or tongue, no taste disturbance, no dizziness or balance issues. Phew!

I go back next Thursday to have a post-op check - I can wash my hair on Wednesday WAHOO!
Going to go be lazy and watch Game of Thrones now. Laters!!

a very important date

I type this on a rather q***t (DON'T SAY THE Q WORD!) twilight shift on ECU - unheard of, especially right before the Easter weekend....let's hope it continues for the rest of the Bank Holiday; while most of us get on with eating our chocolate eggs, other less fortunate lackeys of the NHS will have to spend the weekend battling the rising tide of patients. (Actually so will I on Easter Monday, after inhaling my egg. Good way to burn off the calories at least.)

So I have been given a date for my cochlear implant surgery - Tuesday 5th May! EEEEEEEEEEEEK! I'm not quite sure how I feel about this yet - I try not to focus too much on the actual surgery itself (though I bloody well hope my surgeon does) as it's a small hurdle on the way to better hearing. I'm fortunate as well in that one of my friends is also going through the process - she has had her bilateral implants already, a couple of weeks ago. It's oddly comforting to think that I have a companion in all this, a couple of steps ahead of me. I'm really looking forward to meeting up with her and seeing how she is getting on. Her switch on will be a good month or so before mine, so it will be handy to have a first hand account of what it's like for someone with similar hearing to me. 
UPDATE: I should point out I am only having one implant - currently to get 2 on the NHS you have to be a child or visually impaired as well. 

I'm not sure how I am going to deal with all this psychologically. We went skiing in Tignes last week - my first proper winter holiday - and I made the mistake of not booking lessons in advance, so I had to spend the first day wildly out of my comfort zone, on terrifying chairlifts and falling painfully down dozens of vertiginous blue runs. By the end of the day my stoicism had run out, and after skidding down Melezes for the gazillionth time I became rather pathetically whimpery. David had to carry my skis and let me hobble down to the nearest village, where we stumped up for a very expensive taxi to take us the tiny remaining distance to our chalet. I became a small miserable black hole of negativity for a couple of hours, moaning on about how I wanted to get the flight home tomorrow and I couldn't possibly do this and I was doomed to break some bone or other if I continued. (I'm not sure how David put up with this without strangling me but to his credit he did very well.)

I then had a shower, nap, 3 course meal and lots of wine. All this and a good round of Bananagrams restored my equanimity. The next day after 1 private lesson I was all smiles and "I CAN DO THIS" "I WILL OWN YOU MOUNTAIN". The rest of the week went by in a blur of not-falling-over and making it down several blue runs that had seemed impossible at the beginning. Now I can't wait to go back!!

The point of all that waffle - apart from making you jealous of my snowy holiday- is to explain one of my character faults: I can get really negative about things really quickly, often with a common-sense failure at the same time. However I normally manage to get back on an even keel after some food. Moral of the story - take biscuits to switch-on. And remember that things are always better after a good sleep! I like to think of myself as a fairly optimistic person on the whole, with occasional flip outs normally remedied by a hug or food. Or flowers. So hopefully I will be fine when switch on happens and I have all these weird new noises to get used to.

In other news, I have picked my implant model - I went for Cochlear, ultimately because I liked the look of it better (it's smaller) and the gimmick of automatic noise control (where the implant switches programmes for you automatically) sounds pretty canny man. I also got to pick the extras - so I went for waterproof casing so I can go swim underwater (OMFGIZZLE) and 2 spare batteries.

Here are some pictures of me trying the implant processors on. Excuse my massive pointy chin. 

Cochlear Nucleus (black - obv I will get a neutral looking one)

the vast array of colours available with Cochlear

Advanced Bionics - veritable rainbow of colours. To be honest, having a brightly coloured hearing aid has never really appealed to me - boring I know - so this didn't really factor in my decision

Advanced Bionics (in white) - I felt this was a bit too large

I have also had to go to a fairly pointless occupational health meeting (from my point of view anyway) where we established that I was indeed to have a cochlear implant and yes I would require time off work, but we don't know exactly how much yet. I wait with bated breath to see what happens next.

Next appointment on the cards is a consent appointment with the surgeon next week, and also an appointment at the GPs to get my pneumococcal vaccine (for meningitis prevention, as there is a small but significant increased risk of meningitis after surgery so near your brain.)

Driving home for Easter now (or rather, supervising David) so I will sign off and cuddle Rhubarb! 

Cochlear implant wafflings

Well hello! I've not blogged for ages - been busy with new house, new dog, married life and all that. However as I tend to blog about major life events (cancer, elective in NZ) I felt it made sense to write about my new up'n'coming journey! Also I have a week off and all I've done is eat my bodyweight in this pear and cinnamon cake with vanilla fudge sauce so this is my last chance to do something productive before being dragged back to medical admissions. 

You may know that back in October I went off to the Freeman to ask them to assess me for a cochlear implant referral; they duly did and referred me down to James Cook (the regional centre). The first assessment entailed a long chat with an audiologist, mainly about my expectations of implant, and whether I met the criteria.

The current NICE guidance for CI in adults is pretty stringent. You have to be a) super deaf (more than 90dB) and b) not deriving enough benefit from hearing aids. The way they quantify this is by assessing how you do on BKB sentence testing. This basically means sitting in front of a speaker which says sentences to you (like "the man is standing under the tree" or "the children like strawberries"), and you repeat back everything you hear, even if it's not the full sentence. 

If you get more than 50% on this testing you are deemed to be using your hearing aids to good effect, and are not suitable for an implant. 

I got 41% this time!

(Back in Nottingham when I was 19 I got 51%. Haha. I'm not sure why this is - maybe the ensuing years of medicine have dulled my brain, or maybe the chemo made my hearing worse??) Audiograms below for any audiology boffins. 

6.11.2006

14.10.14

I have since been to see my key worker, who is a very nice speech therapist. Her job is to assess me and check that I don't have wildly inaccurate expectations of what CI will achieve, and to help me choose which model I would like implanted (if I go ahead). 

I have also seen the surgeon, who is happy that I am medically fit for surgery (despite my rather exciting PMH). Oh and I have had a balance test too! 

After this barrage of appointments and travelling to and from Middlesbrough (massive thanks go to the lovely Mr & Mrs Wood for having us to stay) - the team had their MDT and decided that I was "likely to benefit from a cochlear implant"!! hurrah! 

I thought I should spend a while writing down why I want to have an implant and what I hope it will achieve (have become a bloody annoying reflective type after only 6 months of GP training, ugh). Then I can smugly look back on it all in a year's time!

Why I want a CI:

1. CYBORG!!!! (this is mainly David; he is very excited at the prospect of having a cyborg wife.)

2. I would like to be less tired at the end of a long day of lipreading people. I don't think people who aren't deaf can really know what it feels like to be completely drained and exhaustified after a day of staring at other people's faces and working that extra 50% to work out what they are saying. If I just have to work 25% less that would be so much less draining. 

3. I would like to stop worrying about what it will be like to have kids; this one used to really stress me out but most of my deaf friends have pointed out that kids are very adaptable and very patient with deaf parents, plus if mine don't speak clearly I will just drown them. JOKES. 

4. I would also really really like to be able to have a conversation with someone without having to lipread them! This may be a far off dream currently but if I am given some high frequencies back then I may POSSIBLY be able to:

• call home! 

• listen to a Harry Potter audiobook without having to read the book at the same time - which rather defeats the point of the audiobook

• have a conversation with David whilst chopping an onion without removing bits of my fingers 

• be able to have people round without worrying that I can't lipread so-and-so, and making sure David knows to talk to them so I don't get trapped in a really awkward situation where am attempting to be gracious hostess but have not a clue what my guest is saying (this is a rare one since I have selected most of my friends to be easily lipreadable, but sometimes the rogue mumbler appears). 

I've waffled enough now and the dog wants to sit on my lap. Next appointments coming up - consent appt with surgeon, pre-op assessments, and a device preference appointment with my key worker. Watch this space!