Four months in

This will be a short one because I am on-call all weekend from tomorrow (weep weep). I have been for a retuning today though and that's always a good time to blog about my ever-improving hearing.

My audiologist today was Jen, whom I haven't seen since my switch-on so it was nice to see her again, especially given the massive changes in between now and 4 months ago! 

She started off by doing some ESRT (electrical stapedial reflex threshold) testing on me. I never really learned much audiology in medical school and the intricacies of this were mostly beyond me. However, in a nutshell: the acoustic reflex in normal hearing people lifts the stapedius off the eardrum when a loud noise is heard, to protect your hearing. You can also stimulate it electrically (hence the catchy name for ESRT). This is a useful objective method for deciding how much stimulus to put into an implant, and it makes sense to use it as an upper limit, or comfort threshold, for the stimulus going in - I imagine it mimics natural physiology. After Jen had done this and adjusted my programming, none of the loudest beeps were uncomfortable (unlike last time).  

We did the pure tone audiometry again and this time I have finally made it into the "ideal range" on my audiogram! This is between 20-30dB, just outside normal hearing. They don't aim for "normal hearing" (i.e. above 20dB) because apparently the all-important speech sounds start to get compressed at that point as the frequencies get too saturated. 

I then did the BKB test again... The moment of truth - how much would I have objectively improved?! When being assessed back in December, I got 6% with my left ear, 24% with my right, and 42% using both ears. Obviously this time we were just testing how well the implant was working, so we only used my implanted ear. I struggled more than I thought I would without the hearing aid, but I still got 62%!!! From 6% to 62% is INSANE. INSANE improvement. AAAAAAAH!!!!!

As Jen pointed out, if I had both the CI and my hearing aid, and was listening to someone whose voice I know really well, the score would be much higher. I do feel as though my "real-world" performance is actually better than 62%, though I don't go around trying to put a number on it - I can just tell it is drastically improved. 

I have also met up with my CI buddy Jeanette today and our stalwart friend Mavis; we had a really interesting conversation about our different experiences and how the CIs have changed our lives. I find it fascinating and inspiring how well Jeanette is using the phone - I still haven't plucked up the courage to call many people other than David! We also have slightly different experiences of music - while I feel I get the best of both worlds from my CI and hearing aid (which still gives me an acoustic, smooth sound), Jeanette has found that bilateral CIs make the sound very clear but not as smooth yet. We are hatching a plan to go to the Sage for a classy musical evening out - I am very excited about this, as the Sage has hitherto merely been a pretty building on the Quayside for me.

I will write another update when I have seen Sandra in the next couple of weeks - and I may need to have another little angry junior doctor vent before that. But for now I had better dislodge the corgi from the sofa and get to bed - beauty sleep is required! 

Hell hath no fury like a junior doctor scorn'd

This is a bit of a change in subject matter for this blog, but I have been watching and reading with horror the furore about junior doctors' pay and felt compelled to put my tuppenceworth in. I've actually delayed writing anything for a few days because otherwise there would have been too much swearing involved and my grandma and grandad would be appalled. A few days later I am slightly calmer but not much.

I love the NHS. It has: diagnosed my profound deafness as a baby, given me hearing aids and speech therapy; diagnosed my coeliac disease and provided me with gluten-free food (before gluten-free and paleo were fashionable and when all was available was foot-breaking bricks of bread); diagnosed my Hodgkin's lymphoma and saved my life with chemotherapy and radiotherapy; and with my cochlear implant it has given me a whole new world of sound that I could only imagine before. It has also cared for some of my nearest and dearest in their life-threatening illnesses and at the end of their lives. I'm truly, heart-swellingly proud to work for such an organisation and give back a little bit of what it has given me.

I am however dismayed and demoralised at the recent developments. I should start by explaining how our pay works for non-doctors: we get a basic salary – starting at around £22,000 for an F1 – but are compensated for the many antisocial hours we work with our “banded pay”. This is graded according to the number of antisocial hours (outside of 7am to 7pm, Monday to Friday i.e. evenings, weekends, nights). 1A is the highest band and pays 40% - 50%. So working weekends and nights is slightly less crap because at least you feel you are being fairly remunerated. GP trainees also get a training supplement (45% of basic salary) – this is based on the average supplement that is received across all hospital specialties, so that there is not a financial disincentive for trainees taking up general practice rather than a hospital specialty.

I also have a £45k student loan from my 5 year degree, and also have to pay GMC registration fees (£300 a year), BMA fees (£222), exam fees and course fees. Oh and medical indemnity – as GP trainees our indemnity fees are £1,200 a year as well. We can claim these back in part when training, but not after we become GPs.

I qualified in June 2012, aged 24. Over the last 3 years of working as a doctor, I have missed Christmases, New Years, birthday parties, weddings. This Christmas I will be spending Christmas Day and Boxing Day nights helping to deliver babies and seeing urgent gynaecology patients. I have been verbally abused by drunks in A&E, and scratched, kicked, and bitten by confused dementia patients. I have been covered in blood, amniotic fluid, faeces, urine, vomit (fortunately not all on the same day). I have seen people die in front of me – literally seen the life leave their eyes. I have assisted emergency caesarean sections and helped bring new babies into the world. I have run to many crash calls and been part of the team trying to bring someone back to life. I have consoled grieving relatives; I have held dying people's hands and stroked their hair. I have worked for 12 hours straight only managing to pee once and gulp water whenever possible to prevent my own acute kidney injury.

Please do not think I am either whinging for sympathy or being arrogant - I am not complaining about any of the above. I went into medicine knowing it would be hard and a long slog, and I feel I am fairly remunerated for my work. I love my job and I feel very lucky to have a career that has such a positive influence on so many people's lives.

HOWEVER. On the background of public sector pay freezes for the last several years, the Department of Health is announcing that they want to cut junior doctors' pay even further. This along with an 11% pay rise for MPs!!! An “independent review body” - the DDRB – I doubt any of them have ever worked a night shift in their lives – have suggested removing our out of hours supplement, among other changes which you can read about here.

The proposals – which are shrouded in mystery, apparently because they would “bias public opinion” if they were revealed in their entirety – hmmm I wonder why?! - would increase our basic salary (splendid, more tax to pay and more NI/pension contributions), and would CUT our out of hours pay by stretching the “normal hours” to 7am to 10pm, Monday to SATURDAY. So I would be paid the same for going to work all day Saturday as going to work all day Monday. The proposed changes also remove any penalties that trusts incur for overworking their doctors, so there will be no incentive for them not to put us on completely insane rotas. Specialties that do lots of out of hours work (e.g. A&E, anaesthetics) will be hit the hardest. They also want to remove the GP trainees' supplement, resulting in a 45% pay cut. GP and A&E are some of the hardest specialities to recruit to and this is completely counter-intuitive.

The BMA (the doctors' trade union) walked away from talks because of unreasonable demands and refused to go back because a condition of returning to negotiations was accepting the DDRB recommendations without question. The DoH have said they will unilaterally impose these pay reforms on us, which rather begs the question of why they bothered trying to negotiate in the first place...

They are also unveiling new physician assistant jobs at £50k a year – more than double an FY1's salary. A physician assistant has 2 years' training, and works alongside doctors doing things like taking bloods, cannulas, histories, but can pass any decision-making onto a doctor. A bit like a paralegal getting paid more than the lawyer. This strikes me as similar to going out and buying lots of shiny new buckets to distract from the fact that the ship is sinking. How is this short-sighted and ill-thought-out idea to help with the NHS recruitment crisis?!

I will try not to be too political. However I am very cynical about the motive behind all this – given that the Secretary of State co-authored a book on how to dismantle the NHS , has no medical experience, and his sole qualification appears to be a degree in PPE from Oxford. And when there were 220,000 signatures on a petition to debate a vote of no confidence in Jeremy Hunt, but all that was achieved was this debacle, I think I can be forgiven for seriously losing my faith in this government (not that I had much anyway).

I could have a much better life in New Zealand or Australia or Canada but my family is here. I can't really imagine being that far away from them especially while trying to bring up my own family. Having said that, I have still applied for my “certificate of good standing” (a document you get from the GMC verifying your registration with them) so I can escape if necessary.

I've said it before - it is not about the money – it's about how valued we feel as professionals. If it was about the money I would either a) not have gone into medicine or b) have gone to the Antipodes already. Or I would sit back and watch the NHS being dismantled while I locumed and made a fortune. If our healthcare system gets privatised and becomes like the American system – doctors won't lose out. In a country where there is already a shortage of doctors, it will be an employee's market. We are not fighting this because we are greedy money-grabbing bastards – we are fighting this because we believe in everyone's right to have free healthcare at the point of need.

We are fighting on our patients' behalf, while the mainstream, right-wing media largely fails to report our struggles. Please support us – write to your MP. Let them know you support us. We don't like striking because we worry about our patients, so the government think they have us over a barrel. However I would support a strike, because I genuinely believe our patients will be at greater risk if these contract reforms go through. Do you really want your doctor to be seeing you at the end of a 15 day stretch? Please listen to your doctors when we tell you this is not safe, that we are stretched to breaking point already, and that we are in danger of losing a precious national institution.

The life aquatic

Hello again!

Apologies for the long delay in updates - I have been on lots of baby-delivering on-calls, but have also been away on holiday which was lovely. We go to this amazing place in Devon most years and are always fortunate with the weather - after retooning to the very grey Northeast I am deeply tempted to move back down there and live out my days as a hippy GP in Totnes.

The swimming pools are the highlight of the holiday (after the cider and cheese and walks) and we all go and splash about every day, often twice a day. Normally I take my hearing aids out and rely on lipreading to chat to people while swimming or in the hot tub. However this year I had my Cochlear Aquakit! Practically as soon as we had arrived, I excitedly pushed my implant into its little silicon body-stocking, put on the Aqua coil and rushed out to the pool. This is me right before:

and an action shot:

It is SO EXCITING! I can go underwater and blow bubbles and hear them! I could hear David's bizarre underwater voice and my own splashes as I swam around, and instead of swimming to me to pat me for my attention, people could shout for my attention and I could turn around to see them! AAAAAAAH! 

Mum and I swam 60 lengths the final morning and could chat all the way. Splendid. 

The sound is a bit muffled and I got a lot of noise interference when I walked, probably because there was more transmission through the protective case touching the microphone. This didn't seem as apparent when swimming though. 

It is so exciting - after years of being worried about going near a pool wearing my hearing aids in case I forgot and just jumped in - to be able to run and jump in and hear my own "AAARGH" at the cold water! (Am still Southern pansy despite 9 years in the Toon). And swimming which has always been a very silent experience is now a delight of bubbles and splashes and talking to people. The joy! 

We also headed to the Eden Project in Cornwall which was stunning, just like last time (with fewer proposals however - as David has already shackled me to him in wedlock). 

After spending a week eating my bodyweight in scones and cheese, we headed back up to Nottingham for the wedding of the year. It was so lovely to watch one of my oldest friends get married and I shed a little tear or two ... Hearing-wise, I struggled a little in the church but that was because it's always hard to put yourself in a good place to lipread at weddings, and a lot of the talking is done facing away from the congregation. I managed to follow the vows though and it was all rather magical. The best thing was being able to follow most of the speeches and laugh at the jokes like everyone else! 

Actually, no. The best thing was staying up til 5am dancing at the silent disco because I could hear the music through the headphones! I still haven't rushed into the world of music with open arms, but I was so amazed at how much more of the beat I could follow - without the implant it was just bumbling rumbling background noise, but with it back on came a beat and an urge to jive (and also dance like my dad.)

I still couldn't tell you which instruments were being used or any of the lyrics but it was all very exciting. I've just had a go at listening to "Home" by Edward Sharpe and the Magnetic Zeros which has always been one of my favourites just for the lyrics and general loveliness - surprised at how much easier it is to follow the lyrics and the different melodies. Obviously still not the same as a hearing person but I feel I am getting much more out of listening. Wow! Also, the Clash's "London Calling" is AMAZING. I can hear the drums and guitar - v. exciting.

I'm noticing more and more that I can pick up what people are saying without looking at them - last night I could hear snippets of a conversation going on in the lounge before I went in, and when driving people home from town on Friday night I could hear some phrases and words from the back seat. I still couldn't follow a complete conversation without looking, and if people turn their heads away from me and mumble I still get a bit frustrated and have to remind them that I am not suddenly magically "normal-eared". But on the whole, life is so much easier.

A note on batteries: I have a good system going now - a "big" battery will tend to last 2 days, while the "little" one will last a good day/day and a half. This is great as I had previously been really worried about having to constantly change them in the middle of an on-call, or being caught short without them. In fact, this was one of the things that nearly put me off getting the implant. It's so hard to imagine how I would do without it now, but I think that pre-implant I had no idea what it would be like, so I grabbed at all the things I could imagine, like batteries and a magnet feeling weird and all the possible side effects. Now I'm on the other side these things pretty much pale into insignificance next to my new ninja hearing, but I would have no way to explain this to my pre-implant self.

I'm 3 months in now and this is better than I could have ever imagined. I've not had my 3 month follow up appointments yet with Ruth or Sandra but this should happen soonish I think - I'm particularly excited to see Ruth because this time we are doing my BKB scores and I can see an actual objective measure of my improvement!

Until next time kids! xx

P.S. Almost forgot the obligatory corgi pic:

Being a hearing ninja

Greetings all! 

Sorry for my long hiatus in updates - the implant is still working (wonderfully so) and I have not had a breakdown after the shock of going back to work. I've now moved jobs to Obstetrics and Gynaecology (as another part of my GP training) and am trying to fill all the woeful gaps in my knowledge. Definitely need to work on my upper body strength so I am a bit better at assisting Caesarean sections; my limp noodle arms are pretty much useless at holding a retractor for longer than 30 seconds. I am also practising not fainting whenever I see a cervix get sliced into.  I would like to point out however that even in the middle of a vasovagal attack I was still able to hear the theatre nurse saying, "It's the heat of the lights you see..." while I had my head between my knees! Nearly passed out again from the surprise. 

Have also been home to Nottingham for a lovely relaxing weekend of waddling around eating. 

I had a retuning with Ruth a few weeks ago, which was fairly straightforward; she did the usual beep test and rejiggled the inputs accordingly. As we're getting closer to a final map she has only given me 2 programmes to go away with. Writing this has reminded me that I should try moving up to the second one ... goodness me that's loud! It might actually be too loud as the keys clacking are giving me lots of little jolts ... back down again for a bit...

We also did another PTA/audiogram which was pretty good, though the improvement isn't as drastic as the last one. I had been hoping to get into the ideal range on this appointment so I was secretly a tiny bit disappointed. I told Sandra about this when I saw her the week after, and she very wisely pointed out that great audiogram results don't always translate into great "real world" results. She thinks I'm doing far better than she would expect of someone with my hearing loss (i.e. severely gimpy ears since birth). Am v. smug at this. She tried me with some listening exercises which were a bit like a McCormick Toy Test for grown-ups - "put the teapot on the table". We also did a bit of "guess the f or v" (fat/vat) which is viendishly hard. 

I can follow nearly all (95%?) of Harry Potter now, with my eyes closed (when using both CI and hearing aid). Last night David tried reading out random sentences from HP, and with the CI on I got them all! If I slipped the CI off I got a wash of sound but was only able to pick out the odd word. With the CI back on the sound all crystallised into words in the most beautiful way. 

It's difficult to describe how my CI and hearing aid mesh together - I can tell I'm getting different input from both ears, but they don't jar at all. If I try to describe it using an arty farty visual metaphor, it's as though the CI sound is the line drawing and the acoustic sound from the HA is the colour wash - together they give a balanced picture, but without the CI "line" you wouldn't be able to tell what the picture was. (this is the best example I can find in a hasty google search)

The other way I think of it is as though the CI is "top half" sound and the HA is "bottom half" sound, though that's not really as accurate because the CI actually gives a great range across all the frequencies. the ones I notice the most are the new, higher frequencies.

This weekend we popped up to the Taylors' to say hello and were unsuspectingly coerced into various wedding prep duties. One of these was painting signs with Caroline - we were painting side by side but still chattering away, and Caroline was completely flabbergasted when I replied to all her questions without looking at her! I could also hear all of baby Evelyn's adorable squeaks of pyromaniac joy! HURRAY I'M A HEARING NINJA.

I must point out that on some occasions I am definitely not a ninja - it's still difficult to follow what new people are saying, in noisy environments - mumbly consultants in theatre staff rooms, for example. However, whenever I feel myself getting dispirited about this all I have to do is lift the implant off for a moment and remind myself how I used to manage with some astoundingly rubbish hearing, and how lucky I am to have this new and wonderful technology making it all a lot easier than before.

Phone calls! OMG PHONE CALLS. I've never been able to use the phone, ever. My friend Jeanette had a go with the phone the day after her switch on (she could understand speech straightaway but I still think she was very brave!!) and had her confidence a bit knocked because she found it really difficult. Now however she is a phone-using pro. Being a complete pansy in the first place I hadn't even thought about phones until Sandra asked if I'd tried calling anyone. She thinks I am at the stage now where I might be able to manage it, so I've started calling David when I finish work, ostensibly for "rehab" but really to warn him to get dinner ready for his hangry wife. I find it quite hard with just the CI ear, so I tend to use speakerphone when in the car, just so I can use both ears.* 

* David here: be wary of using speakerphone on your phone! It may not be obvious to the HI, but mobiles do some strange things in speakerphone mode to prevent feedback loops - when the phone emits the other person's voice, it has to figure out whether to mute the microphone to stop the sound going back to the speaker. All-in-all I think it can only add confusion to an already alien experience. While we are still trying to figure out the best way to do phone calls, the feeling is to keep it slow, ask simple questions, give simple answers etc.

garden flowers

"Why must I wear this??"

I also managed to understand Janet when she called yesterday and asked if I would like to go for a run, though I now wish that I had feigned incomprehension and put the phone down, because running hurts.

On my next follow up with Ruth we will be repeating my BKB sentence testing - watch this space!

In other news the garden and Hotbin appear to be coping without my fulltime input, and Rhubarb is as cute (and long-suffering) as ever. 

Back to work

Last week, with two months of guilt-free lie-ins and full-time gardening behind me (for the last time until retirement), I approached the new hospital in a state of gloom. Northumbria Specialist Emergency Care Hospital (NSECH) opened while I was off, so I returned to work at a completely different place, just to make the transition extra-relaxing... It's a rather swizzy new place; it looks very clean and feels mainly empty, which I quite like. 

Swipe card difficulties and forgotten ICE passwords aside, it's all going rather well. I'm doing a phased return, which means I'm doing half my shift lengths for the first couple of weeks. This is really helpful, as it's rather tiring jumping back into the working world. I still struggle with all the things I used to struggle with, but I can tell already that it's slightly easier, even 6 weeks in. (I have also found that - as usual - cake makes everything better. Particularly this Mary Berry one but with rhubarb instead of apples.)

Things I have done so far:

Talked to patients - I should point out that this has always been fine. Wherever I work (GP, A&E, CotE, haematology etc) I always start with a spiel: "Hello, I'm Roz, I'm one of the doctors; I can't hear too well/my hearing's terrible*, so I lipread people, but we'll be fine!" then finish with a winning smile.

*Bizarrely, I don't really like saying deaf or hard of hearing; I think it sounds too serious. 

This works like a charm every time. If I forget to say it I end up having to shoehorn it in later, which gets awkward and makes patients feel bad. I also feel like it shifts a bit of responsibility for the conversation onto the patient; they know what they have to do to help me hear them, so they do it. 

With the implant I find I'm not having to ask patients to repeat themselves as much, which is a bonus. 

Stuck various types of needles in patients -  fun as always

Written lots of discharge letters - not as fun

Looked at lots of phones ringing - and thanked God I can't actually answer them. (I have yet to try doing any phone calls really - unless you count Janet ringing me, saying a random word like "monkey" and hanging up. I live in fear.)

Written notes on consultant reviews /ward rounds - I hate this. I really hate this. Possibly because I've always avoided it as much as possible - I normally find a nice colleague and give them the notes instead. I cannot lipread the patient, consultant, +/- some relatives, AND write beautiful tidy medicolegally-compliant notes at the same time. Often I try to listen and then write the notes in afterwards, which only works if we're not too busy. If there are a zillion patients to see and a mumbly consultant I just run away and do jobs instead. 

Because I'm still not really at the stage where I can hear without lipreading, I still struggle writing notes. But I feel a little more confident and am trying to give it more of a go! (I WILL OWN YOU, CONTEMPORANEOUS HANDWRITTEN MEDICAL NOTES.)

Followed a lot of handovers  - without too much difficulty, despite approximately 1000 phones ringing at the same time. I use my usual tricks of sitting where I can see everyone, and using the board as a guide, as well as peeking at colleagues' handover sheets. It is SO much easier to hear in noise with my new high frequencies - it really brings speech out from background noise.

Sometimes I take my implant off my head when following a conversation, just to see what it's like. I just can't believe how flat the sound goes! It's as though someone has taken all the sound I get, chopped the top off it and given back the bottom half. I cannot fathom how I have managed with bottom-half sound all my life. I love noticing things like how people say their "s"s (yes, "sausages" is still my favourite word). I can sometimes pick up words and phrases without lipreading. I tried on a ward round yesterday and heard the consultant say "and how is the constipation?" 

Just as parents don't see how much their children grow from week to week, I don't notice how much I'm improving gradually from day-to-day. But I do suddenly notice the things that I pick up without lipreading, or when people point out to me how much better I'm following them. For example, today we went to Janet's to watch Wimbledon, and I heard my friend Romeela say, "Where's Miguel?" loud and clear - but I was standing behind her at the time! Nearly dropped a strawberry in surprise. 

Another milestone was - of course - Harry Potter related. David read me the whole Forbidden Forest chapter while I lay with my eyes closed and repeated back what he'd said. This was so he knew that a) I wasn't asleep and b) was understanding every word. WITH MY EYES CLOSED! aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah! I still had to get him to repeat some sentences, so the whole process took a bit longer than just listening, but WHOOHOO!

I've not been sure how much to wear my hearing aid with the implant. Obviously for work I need all the help I can get, so I wear both to work. At home I suppose I should be having some implant-only time but it feels a bit of a step-back to remove half of my hearing. I'm not convinced that it matters too much once my brain is past the initial "WHAT THE FLIP IS THIS ELECTRICITY??" stage; plus the end goal is that I wear both together. I'm already really happy to do this, and I know that the sounds will continue to blend until I can't really feel the join between hearing aid and implant sound. Any experts/fellow cyborgs out there - feel free to offer opinions! 

Follow up plans - I've been moving up through my processor volume levels as usual - level 4 tomorrow. I have my 4 week follow up in a couple of weeks (which will be 7 weeks post-activation). They are planning to repeat my BKB sentence testing - how exciting! I see Sandra, my keyworker, the week after. 

Hadrian's wall

Other than working, I have welcomed middle age with open arms by joining the National Trust and going on various fun day trips to places like Housteads and Gibside.... 

Have also grown some peas, beans, rhubarb, a small meadow and procured the best rosebush ever. When can I retire?

David Austin - Lady Emma Hamilton. SMELLS DIVINE

Three weeks in

Bonsoir all! 

I have been enjoying the last 3 weeks - feels as though sound has been unfurling in my brain like a peony flower! Poetically floral gubbins aside, it has been so exciting to realise that my brain has learned sounds to the point where I can tell when the kettle is boiling, when the dog is approaching (clicketyclickclick), and when people are calling to me! I did have an alarming moment while defrosting the freezer, when the processor with its new, weaker magnet fell off my head and into a bucket of icy water. After an hour in the dehumidifier it was fine though! Phew. 

After the last post I went to the Cumberland Arms for some excellent cider - while I was sitting outside in the sunshine I heard Gaita's voice! (She was there with me, I hasten to add; I was not having an auditory hallucination.) Only for a little while - it seemed to slip away when I concentrated too hard, but she did sound like a little Italian robot for a moment. This happened more and more over the next few days, and now when women speak I do get a sense of a voice rather than just beeps/hisses - men's lower voices are still harder. (David is worried I will suddenly run off with a woman because I can hear their voice better.) 

I really struggle to explain how David's voice sounds - I've just spent 5 minutes making him talk so I can try to describe it. With my hearing aids, I've always thought it was a nice Geordie voice, not super deep or very squeaky, just a nice voice. With the implant, I can tell exactly what he's saying, but I have very little sense of his voice. I think that is because my brain still isn't bothering with the low frequencies, and it will come in time. (I keep telling myself that it's only THREE WEEKS in and the implant is already outperforming the hearing aids.)

I spent a lovely weekend hanging with the family - even though most of them sounded like chipmunks I could still follow nearly everything we were saying, and they were surprised that they didn't have to repeat anything at all. Obviously I still struggled at dinner when everyone was talking, but no more than usual. Other friends have also commented on the fact that I seem to be lipreading less but getting more of what they're saying.

I had my second retuning on Monday, in Stanley. My audiologist Ruth was pleased that I'd managed to get to programme 4, if only for a couple of days. I had tried it before earlier but found it too uncomfortable; I actually got a slight pain in my middle ear on certain sounds (like "ooh"). However I made myself go up to 4 eventually because I didn't want to miss out on any rehab potential. It was slightly uncomfortable but only for a couple of hours.

First we did a hearing test - I sat on a chair in the middle of the room and said "yes" whenever I could hear a sound from the speaker. I normally hate pure tone audiometry - my brain always decides to give me tinnitus as a reward for listening so hard. This was different but still difficult - my brain started making up lots of weird noises but none as bad as my old tinnitus, thankfully. I felt like a right lemon sitting in the middle of a room saying "yes" repeatedly. It was worth it, though, because THIS was my result: 

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Compared side-by-side with my old audiogram.....

(Noughts and crosses - right and left ears, unaided. The funny little triangles are my bone conduction response, all pointing down because I didn't respond - because my deafness is sensorineural)

.... this is frankly astounding. Obviously "ideal range" is not the same as "normal range", but Ruth says that the CI team hope that their recipients would all ultimately be hearing between 20-30dB, and I've already got to 30dB on some frequencies, in 3 weeks. ERMAHGERD. Also, the profile of the audiogram is a completely different shape - there's no more high frequency drop-off (though apparently I have a dip at the end because I am just not used to hearing such high noises.) I also have a dip in the middle where my brain is ignoring low frequencies, as we've discussed before.

Good stuff eh?? Ruth adjusted my map (the tenth one since switch on!) to reflect what I was picking up. Yet more oomph in the low frequencies, and a general volume increase. She also ran the usual checks to make sure it wasn't too loud - thank goodness she did because the first low frequency beep made me leap out of my chair. It was probably too loud because I hadn't had that much time on programme 4 before changing. That was readjusted and then off we went. As usual I have 4 programmes to move up through before my next remapping in a month. I have longer to get used to these because we're getting closer to my "stable map", or end point.

The next day, I went back down to JCUH for my second rehab appointment with Sandra. She too was v. pleased with my progress - I got all of the Ling-6 sounds this time! We did some more listening exercises, though they were a bit more challenging this time because she got me to fill in the gaps - I didn't know what was going to be said in advance. So we would start with a clue e.g. "Something is the first something" and I would listen and hear "Monday is the first working day of the week." We did several exercises like this, and then talked about how to cope when I go back to work. Apparently some people's colleagues expect their hearing to be completely fine once they have had an implant, and are surprised when they still struggle in noisy environments or still need to lipread. One patient was asked, "Why did you bother having it done if it hasn't fixed everything?" I think my colleagues are smart enough not to say anything like this to me or they risk a broken nose!

I retooned to Newcastle and excitedly told David about the new exercises. Being a cheeky git, he immediately turned this into an excuse to insult me - on our walk with Rhubarb, he walked behind me and said rude things like "You're a fat smelly monster" and "You're a fat fatty" and I had to guess what he had said, while laughing hysterically. Fortunately he was within smacking distance every time. Everyone enjoys playing these games with me; my friend Janet particularly loves it. On our walk the other day she decided to test me with animals. I turned around and waited for something simple like "pig" or "duck". She hit me with "hippopotamus", "giraffe", and, for the grand finale, "marzet", which turns out not to be an word at all. (I think she was going for "marmotte".) I managed pretty well though even with her weegie accent. Whoohoo!

David and I are about halfway through Harry Potter - I can now follow most of a paragraph with my eyes shut, and if I get lost I don't stay lost, I can quite quickly pick up where we are. 

I have been out for meals a few times and managed really well in noisy places. Last night we were at Cal's Own (for more gluten-free pizza). It was incredibly loud but I was able to follow a conversation quite easily, with a few different people. I remembered my friend Jeanette saying how much easier it was to hear in noise, how the implant seems to "lift" speech out of the hubbub. I experimented with taking the implant off and listening with just my hearing aid - speech instantly receded into a meaningless mash of noise. It came back as soon as the implant reconnected to my magnet; I felt an amazing rush of gratitude for this incredible bit of technology. I've only had it on my head for 3 weeks and I love it! (As a token of my appreciation, I will try not to drop it into any more ice buckets.) 

I want to go and have a drink outside now in the garden (yes, it is sunny on a Friday evening...) so ta-ra! 

P.S. This rhubarb polenta cake is very tasty. Make it.

P.P.S. Some people have complained there are not enough corgis on this blog, so here is Rhubarb, looking disapproving. With a peony flower. 

First rehab appointment

The day after my remapping, we headed down to JCUH again - on the day of the final years' MOSLER as it happens, which explains the perfect weather. We were there to meet my keyworker for some rehab (no, not the alcohol kind, though I probably need that too). Sandra's job is to help me make sense of the sounds that I'm hearing, and use them to maximum effect. She started me off with listening to some Ling sounds, which represent various different speech sounds from low to high pitch (frequency). They help to test my hearing and check I have access to the full range of speech sounds (these are necessary for learning language as a kid - when I was little I didn't really hear the higher ones, like "sss", "sshh" and "t", so I didn't learn to make them for myself - hence all the speech therapy.)

So, I listened to these 6 sounds with no lipreading, and I got 4 out of 6!!! I missed out "sshh" and "mm". Not sure why I would miss "shh" as it's high frequency and I could hear it, I guess I just wasn't sure what exactly the noise was as it was only the second one she tried. "mm" was lower frequency and I'm still not picking up those that much, as explained in the last post. Jeanette says she didn't get it either which makes me feel better! 

Then we tried some sentences. First I lipread Sandra saying the sentences (stuff like "I think he's sick" and "I think he's crazy") and then listened with my eyes closed and then had to say which one I thought she had said. Then she would say another 2 sentences, I would try those, then we did all 4 mixed up. I got most of them right! . The difficult one was "My socks are green" vs "My socks are yellow." Green and yellow look so different written down but apparently lots of people mix them up. How bizarre.

David found all this completely amazing to watch and admitted afterwards that he was welling up at one point! Awww.

We discussed various rehab tactics to help me towards hearing without lipreading. Sandra thought Harry Potter was a good plan, as long as David helped me with it to start with as there is quite a lot on each page! She suggested trying some kids' books first. We were still determined to try Harry Potter first - more on this later...

Next I went in to see the surgeon - not the same one who did my operation, but another member of the team. Scar is fine, I am cleared to swim and fly. Just no rollercoaster rides ever again (thank God for a legitimate excuse). I was permitted to take a photo of my X ray showing the CI electrodes! Here it is for any geeky medics and radiology boffins: 

Later on that night we decided to give Haz Pot a go. So we started..... and "Chapter One - The Boy Who Lived" appeared in my head. David helped me at first by pointing to where we were, but quite quickly I was managing by myself, though I did get lost a few times. I found that I could pick up certain sounds like MiSSSTTer DDursley and "DDumBBleDDore". "PProFFeSSSSor MCCCGonaGGall" as well. HaGGrid was easy too. I can hear so much more of the Ss and Ts and all those! I can also tell when Stephen Fry is being posh and lengthening his "a"s. AMAZING. We left it at the end of Chapter One as I didn't want to overdo it on the first day. 

Today I have been for brunch with my lovely GP group - I was quite nervous about my first large group situation since switch-on, so I put my hearing aid on too otherwise I would have heard nothing. Managed to follow most of what was being said but obviously in a big group it can be hard to follow what everyone is saying. The implant isn't going to fix this but it should make it a bit easier in the long run.

In other news - have done 5 loads of laundry, got the Hotbin up to 55 degrees (garden geekout), eaten some home-grown radishes. Enjoying this housewife malarkey.  Off to pub now! xx

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: