Post op checks.. continuing the CI journey.. by Eleanor

No need to worry, I am still here!

 I thought I'd better write a lovely blog post to update you all on my Cochlear Implant journey.
It is now exactly 3 weeks since my operation and I'm feeling great. Nothing hurts anymore, nothing aches, nothing throbs or groans or tries to remind me of the fact I have a implant in my head.

However, I am constantly reminded of how deaf I am. I know, I was deaf before the operation, and I'm still deaf now and I will always be deaf. But, having just one hearing aid has hit me rather hard. It's gotten to the point where I don't even notice people chatting away on my right side (the implanted side) until I look round. I'm zoning out all the time because I'm too tired to focus, and I'd much rather be at home in the land of silence and not having to listen to anyone. My world is an oral world, which was why I wanted to take this journey, to be able to access it a little more easily. This isn't forever, I know that, but it doesn't make it any easier in the now. I'm waiting rather impatiently for the switch on date and once I have that, I'll know there's an end to this stage and the start of a new and exciting one.

 Last week I went back to the hospital for a post op check, where I was asked to go to X-ray for a head scan to check the implant was in the right place. I also saw the nurse who checked inside my ear and the wound. Everything is healing so well and I'm amazed by how easy it has all been. It really is just waiting now.

 A few weeks ago there was a programme on Channel 4 called 'Breaking the Silence' which showed 7 people getting their CIs switched on for the first time. It was all filmed live, a brave decision by channel 4. I'm not really sure why they felt they had to show it live, nor why they had to show 7 people getting switched on. Don't get me wrong, it was very interesting and I enjoyed it (apart from the dodgy subtitles...) but couldn't help wishing it had been more of a documentary, showing the journey of CI, from assessments, to switch on, through to a few years later. Hearing is such a difficult thing to explain. I don't know what it is like to be hearing so I couldn't ever be accurate in telling you, but for people who are hearing, that's all they've ever known. How can you explain something that comes so naturally? It's like when you think too much about the way you breathe and suddenly it becomes very overwhelming and you think you've forgotten how to do it.

For anyone interested in Cochlear Implants, Breaking the Silence is a great place to start, but there is oh so much more I could tell you. And pretty soon, I hope there's even more I can tell you, in between listening to your impressions of Donald Duck...

The surgery... The journey to getting a Cochlear Implant by Eleanor

So, the surgery went well! It was a rather surreal experience, as if I was simply going on an adventure than having a operation. It was easier to think like that, otherwise I may have been rather more scared and anxious about the whole thing.

 I was wheeled into surgery by the nurse and porter, and I remember the porter asking me if I liked being called Ellie or Eleanor, to which he responded something about his daughter or granddaughter being called Ellie and he had large tattoos on both arms reflecting that. I remember thinking, why am I going into surgery if I can hear this conversation - maybe it's all a joke and I can actually hear perfectly fine?

Then someone gave me an injection and took my glasses off, and the next thing I knew I was being woken up from a really nice dream. Now I don't remember the dream but I do know it was a really good one because I was so annoyed at being woken up. In fact I was so confused at having been woken up, that I was sure this was the dream - waking up in a hospital bed with a sore throat and limbs that did not want to cooperate - not even to get my glasses on so I could actually see what I was seeing. Luckily, this disorientated feeling didn't last long, and I soon remembered why I was there. Although the wound didn't hurt, I knew something had been done to the right side of my head (they did the right side, phew) as it felt numb and rather sticky. It also took a while to put my glasses on as the nurse put some gaze to protect the wound from the glasses arm. This has now been taken off as I'm determined to avoid any kind of infection or anything that would require a repeat performance.

 A little while after I came too, the nurse who had wheeled me into surgery came back and asked if I was feeling OK. It was really hard to speak as my throat hurt so much but I was able to squeak out a yes, and was wheeled back to the ward. Mum was waiting for me back in the private room (with an ensuite, check it out!) which was really nice. I'd definitely recommend taking someone with you, there's a bit of a wait before and after and generally just having someone around just feels really nice :). Once I was back on the ward, it was just a matter of sleeping, attempting to get up for the toilet and also eating. The consultant came through a little while after and asked to look at the wound. He said it looked good, surgery went well and if I could eat a little then he saw no reason why I couldn't go home that evening. I was really happy about that as I hadn't really wanted to stay overnight in a strange place feeling groggy and unwell. So when the sandwiches came I tried my very best to eat, although I really wasn't hungry yet (odd for me considering I'd not eaten since 7.30am that morning and it was now getting on for 7pm).

 A few hours later and I was allowed to go home! I was so relieved and so grateful to my mum for hanging on till I was able to leave. In fact I was just grateful for her being there the whole time. She really is the best mum in the world.

  After mum brought me back to hers, I slept and slept and slept. By the next evening I started to feel a lot better, just with a bit of a sore ear. Today, 3 days on, I'm feeling pretty good. I got given paracetamol and ibuprofen to manage the pain and although its sore sometimes, I'm really impressed with how little it has hurt.

 I have another week off in order to heal and recover and also hide away whilst I am unable to wash my hair (it's already looking pretty frightful) and then the week after I have a post-op checkup to check the implant is in place, most likely an xray will be taken. Hopefully then I will get a date for the switch on, hoping it'll be sooner rather than later, I'm excited to start my new hearing journey.

Watch out world, I'm coming.

Decision Day - Getting a CI - by Eleanor

I realised yesterday that I hadn't kept up to date with the appointments. As you know, I have been to the assessments and was just waiting to find out if the team to decide if I was eligible to have one...

 On Tuesday last week I had an appointment to meet 'a member of the ENT team'. The end result is that they would like to offer me a Cochlear Implant. It was odd hearing those words, with the idea of actually having an operation seems unrealistic, as if it wouldn't happen to me. "You're on the waiting list now, it'll be up to 4 months" the consultant said, "It'll probably be me or my colleague operating so you might see me again". With that, I left the room armed with a consent form and a letter requesting me to get a pneumococcal meningitis injection for protection. I'd also been given another appointment entitled 'device information' for the following week.

 The 'device information' session was with a lovely rehabilitationist who is actually leaving soon so I probably won't meet her again. Nonetheless she was lovely and walked me through the possibility of colours and battery packs. I decided to go with the sandy beige because it actually goes with my hair quite nicely and I thought if I ever do want to stand out I can always pimp it up myself. With regards to battery packs, I could choose different sizes depending on how long you want it to last as they can be charged up via electricity as apposed to disposable batteries. The CI requires a lot of power which means generally either option doesn't last terribly long. They were only able to order two different batteries so I went with a disposable pack and a chargeable one with shoes on. "You can buy your own if you want anymore" she said, "they're only around £70-£100 each"...

 Then, a few days ago I was emailed with some surgery dates! What a surreal moment, from being prepared for a 4 month wait which is actually only going to be around 3 weeks wait instead. It was like being struck in the chest and you can't breathe because you know something strange (and potentially painful!) is going to happen. But a few seconds later a smile spreads across my face and I know, I know I'm ready for this new chapter. It's been so difficult, especially lately to keep hanging out with people, even people I know and love because I'm so tired all the time. I find myself doing everyday things and wondering what it will sound like with a CI. I found myself on a beach listening to the waves crashing against the pebbles at the weekend and I wondered what it will sound like with my CI. So long have I been astonished and astounded by young children with CIs, secretly jealous of their ability not to have to lipread all the time.. it may not work so well for me, who knows but I'm excited to see.

 After the operation I have been advised not to wear my HA in my operated ear, leaving me with just one HA for 6 weeks before the switch on. It will be a quiet christmas for me, but the more I talk about my concerns, the more my family seem keen to use BSL, even just the odd few signs, which I completely and utterly adore and appreciate. Thank you.

The Journey To Getting a CI Part 2 By Eleanor

. On Monday just gone I went back to the CI assessment centre for the second time, after being told that based on my audiological results I am eligible for a CI. This time I went for three assessments which were to find out if I'm 'medically fit' to have one.. after making a very sensible (but slightly regrettable at times) decision to get the train and take my bike (which actually saved me a lot of money in car parking and buses) it turned out to be a rather long day.

 With my recent obsession in trying to keep fit in preparation for a half marathon coming up, I decided to bike to the train station. It actually went rather smoothly, until I got to the train station. Apparently people do not like bikes on trains and apparently it makes people rather grumpy, usually accompanied by a roll of the eyes or a tut as they bump into my rear bike wheel as it blocks the aisle entrance. It is also not a good idea to have a bike during peak times. On the journey home I unfortunately had to miss the first train back as lots of tall bikeless people prioritized their journeys before short people with bikes. It didn't bother me too much as I'm rather a patient person but I made sure I was at the front of the queue for the next train, whilst wondering if I could dump the bike and jump on the train if it was too full. All in all, it was a very successful journey and the train station is not far from the hospital at all, perhaps a 10 minute bike ride with excellent cycle paths which make you feel queen of the roads.

 The first assessment was the 'medical'. This was a very short 5 minute conversation with a nurse to check my medical history, if I had been in hospital before, whether I'd had an operation before, whether I was on any medication etc. They also got a lovely swab of my nose which I was told is to test for MRSA. Then, the nurse asked me if I'd had a CT scan of my head before, to which I replied no, so I was sent upstairs to have a CT (how exciting!).

 I'd never had a CT scan before, so it was a rather unnerving experience. You are asked to lie down on, what is best described as a bed but with an appearance of a table. For the CT machine, you're not really allowed any metal things however I'd casually, as most mornings nowadays, did my french braid in my hair that morning complete with frantic metal clips to try and stop it all falling out... so of course they had to come out....afterwards I looked very much like I'd just got out of bed.. so casual. Off came the glasses and the hearing aids, honestly, who knew I had so many things on my head these days.
 Anyway, after a few minutes of lying on the jerky table which couldn't decide if I was coming or going and feeling rather sick from the spinning equipment going around and around my head... it was done. Sadly I didn't get to see the scan of my head which was rather disappointing but I was informed that it was all fine upon inspection.

 There was lots of waiting around between assessments so I decided to find places to hang out and it turns out this hospital has a brilliant food court or 'concourse' as they called it, no idea why. This was great for the waiting around and I had no problems with boredom or hangry feelings.

The second assessment was the 'rehabilitation'. This was a chat with a hearing rehabilitation person, or Speech and Language Teacher (SALT). She was really lovely and keen to know why I wanted a CI, what my motivation behind it is. The process is rather lengthy, for example after the operation I will only have access to one Hearing Aid (HA) on the ear that hasn't been operated on, it will be rather quiet for six weeks until the switch on. For the first few months of the switch on, they recommend not to wear a HA in the other ear, so the brain can adjust to how everything sounds and get used to the different noises. This will mean, whilst they're programming the CI processor, further weeks of 'quiet'. She was keen to inform me that it will be difficult, hard work and a long process. This wasn't to put me off, but to make sure that this is something I really wanted.

 This often plays in my thoughts. Do I really want a CI or am I just looking for some miracle cure that doesn't exist? Being a Teacher of the Deaf and being as fiercely independent as I am, has made me want to do it all myself. I want to be able to hear the children read word for word, to hear their attempts at phonics, to hear when one of them is calling me or talking about their mum's birthday party at the weekend. But most of all, I want to hear my own children. I'm not saying I definitely will have children of my own but perhaps, if one day that happens, I'd like the option. 
 However, I have to be cautious here. I am deaf, and I do like to engage in the deaf community, I can sign and I love meeting deaf people. Wanting a CI doesn't mean I'll turn my back on this, definitely not. I am still me and I will always be deaf. 

The third assessment was 'objective'. This one consisted of a 30 minute nap! This was basically an ABR or Auditory Brainstem Response assessment, which measures the reactions of the nervous system to sounds. I was asked to lie on another bed *cough table cough* with some various 'electrodes' stuck to my forehead, behind both ears and one on my collarbone. Earphones are also put in your ears to play sounds, although I didn't hear anything so it might have all been a lie... For this test you have to be completely relaxed, so it is recommended you sleep or at least shut your eyes for 30-45 minutes. It is a bit surreal attempting to 'nap' whilst knowing someone is in the room next to you and admittedly I didn't really 'nap' I just shut my eyes and tried so hard not to breathe so loudly because the minute you know you have to be quiet is when everything you do is SUPER loud.

 That was the end of the assessments and I was free to go home. The next stage is that all the professionals I've seen are going to meet up and discuss my case and whether they would offer me a CI. So I am basically just waiting for an appointment with the consultant who will let me know the verdict.. hopefully it won't be too long a wait.

 I am ready to be offered one, I think this is a journey I'd like to undertake, but I don't think I'm ready to be not offered one....not when I've come this far.

Watch this space..

The journey to getting a Cochlear Implant (CI) by Eleanor

To Cochlear Implant, or not to Cochlear Implant.....


 Making the choice is the first step. Did I really want a CI? Would it actually improve my life? Would it really be worth the constant appointments? What are the chances it could go terribly wrong and I'd end up with no hearing? What about the six weeks before switch on, could I really cope with no hearing? Would I have to hide away like a hermit, frustrated at what a hearing world we live in?

(For adults, you are only allowed one CI unless you are vision impaired. You are able to wear HAs whilst waiting for the switch on. This was just my irrational thoughts.. going irrational).

 The truth is, this hearing world is not going anywhere. And my hearing isn't getting better by itself. Instead I'm often sat at the end of the day wondering where I will find the energy to listen again tomorrow. Wishing everyone would be quiet, that I could walk around the house without my hearing aids in and ignore the world.. at least for a few hours. Why does everything require listening?

 So, eventually, and I had to do it on my own, I decided to take the step and at least go for an initial consultation to see if I was actually eligible to have a CI. Some of you may know that a few years ago I went to an initial consultation and was told that my speech discrimination was too good. I was too good at finding the bits I could hear and filling in all the rest, because, basically that is what I do everyday, all day. These days, it feels such a slog. It feels different, harder somehow, but mostly it feels more frustrating.

 Today was the day of the initial consultation (for the second time) and I was sent to an audiology assessment. Basically they look for two things to see whether you 'meet the criteria' to have a CI.

 The first being that you must have a profound loss at particular frequencies (your audiologist will know more, it can also differentiate between CI centres). I already knew I met this criteria from the previous consultation and talks with my Audiologist.

The second is that your speech discrimination should be lower than 50%. If it is higher than this (which I found the first time I went) they believe that giving you a CI would not give you any more advantage than what you currently have and therefore would not be worth the risks of going through the process.
 The speech discrimination is measured by placing you in front of a speaker. The audiologist sets a tape to play, first of a male voice, who is saying sentences. You simply repeat back what you've heard, not what you've worked out. Then, a female voice plays. Then you take alternative hearing aids out. My results were pretty shocking with both ears getting just 14%, my left just 7% and my right a mere 4%. During the test I was reminded how much I hate watching the TV without subtitles. I literally get nothing and it feels like the most boring thing in the world. It's the same for pub quizzes by the way, if you happen to be reading this bruv - it's just torture.

That is basically the initial consultation. At the end of this, you are told whether, based on your results you'd be eligible for CI. The next stage is to have medical assessments and a whole host of other assessments. You can usually get all of these appointments on the same day but in this one off example, mine have been booked for different days. But, in a way I'm glad. It has given me more time to process my thoughts and look to the future. A CI isn't a cure, I know that much, but I do know it will give me a fighting chance of hearing, of letting me listen without staring intensely at your lips, without having to feel embarrassed about declining meeting up with friends because frankly I'm just too tired to look.

 There are many sides to the argument of CIs. Some believe that deafness is not an illness, that it isn't a problem to be fixed, that we should be proud of our culture. Others believe that CIs mean better access to speech, an opportunity to listen and to be heard in our predominately hearing world that we live in. As a Teacher of the Deaf myself, I completely understand both views. From a personal point of view, this is the decision I have to make for myself, that would best fit my needs. I'm glad I've waited this long because it has been my choice to make (I've had a progressive loss since the age of three) and I'm excited for what it could mean. I know there are risks of course I do, and I still have to pass all the other medical assessments and await for a group of professionals to discuss whether they want to do the operation before any of this can happen, but I'm in the journey.

I'll be going back in a few weeks for the medical assessment, the rehabilitation assessment and the objectives assessment, thankfully all on the same day... I'll be sure to fill you in on the next stage :).

Fingerspelling Crafts

Hey guys!

 So I've been super busy with a brand new project. It originally started out as presents for my mum and nan for mothers day but finding that there is actually a market for it, I've now started making a few more here and there!

 So if you're in need of a gift to someone or a little treat for yourself check out

Fingerspelling Crafts 

on Facebook :)


Here's some pictures of what you could have or even request for your own ideas!

Subtitling life - When will Sky catch up? - by Eleanor

Hello!
 So, it may have been a few weeks.. *cough* or months *cough* since writing but its one of those strange things where life just happens and things just bumble along and eventually you find yourself wondering where did that time go. Yep that happened.

 So, I have been meaning to write this post for a few weeks now because I feel this is a really important matter.

 Game of Thrones.

Game of Thrones is back. At long last. Aren't we all so desperate to see what happens to Jon Snow? To Arya? To the poor dragons? And when is that winter coming??

 So, it finally arrives. Sadly I don't have Sky on my TV BUT I have access to Sky Go (basically online catchup of all Sky programs). After waiting with anticipation, I finally settled down to watch it, PJs on with the duvet pulled to my neck.

 IT DOESN'T HAVE SUBTITLES!

What? It must be a mistake? In this day and age? BBC Iplayer, Netflix, 4od, even Amazon prime have subtitles now? I google with frustration.

 'Sky Go does not have subtitles.'

Luckily, someone has already picked up on this and is fighting for equality. Apparently Sky on demand doesn't have subtitles, but they've recently commented on plans to put these on later this year. However, for Sky Go, it won't be until 2017 (see here for more info Sky gives in to deaf teenager's demands to provide subtitles for on-demand programming.)

 I really do wonder how difficult it is to put subtitles on. A few years ago I fought with my local cinema to put subtitles on and I got excuse after excuse about needing digital screens with layering and set legislation to put them on legally. I have no idea how much of this is true and to be honest I should probably look into it further. But why should I? Why should it be my responsibility to ensure that deaf people (there are more than 900,000 in the UK who are severely or profoundly deaf) have access to TV and films? Watching a show without subtitles is like watching something in french (I don't speak french at all). I would not get it. At all.

So, no Game of Thrones till 2017, or with any luck, the boxset *sad face*.

On a more positive note, I have been to see two amazing shows with captions this year. The first was 'Wicked' in London @ #Apollo Victoria Theatre. It was the first time I've ever seen Wicked and I loved it! I was hooked from the first song, 'No one morns the wicked'... *heart melts and mouth drops*.







I also went to see 'The Curious Incident of the Dog in the Night Time' @ #Gielgud Theatre, London, with captions too. It was so cleverly written and I enjoyed every minute. The stage, the actors and the technical props, just bang on. The only slight thing I might comment on was that there was a lot of talking, which I knew from reading the book and the fact the main character is autistic, and was to be expected but wow, there was a lot to read! The other awesome thing is that the theatre sent me a synopsis before the show which was a really great idea to help anticipate what would be happening next and therefore be prepared for some of the dialogue. It can often feel like a lot to take in at once, to be reading, watching the show and following it entirely, so having that synopsis fresh in my mind, was really helpful.

I am now utterly hooked on captioned theatre showings and although I've not told anyone yet, I'm hoping all my christmas presents will be tickets to shows next year!