BAHA Diary 06/08/19 – 17/01/2020

Published February 9, 2020 by goshgurl95

Whilst off recovering from my BAHA revision surgery I thought seeing as it was such a long lasting infection that I would now finally after all these months share the journey that we have been on from the 6th of August 2019 until eviction day on the 17th January 2020, although the infections actually started back in April I did not begin documenting or photographing it’s journey until August when I knew there was more to it than just reoccurring infections.. I will warn you though some of the photos are pretty gruesome and graphic so if you do not like that kind of thing I recommend you do not look any further

 

This blog post is as much for me as it is for you , as this is all I have to look back on the journey we have been on from the day it all first began until eviction day so it’s nice for me in some respects to have this post to look back at how far we have come and how the infection changed as well as for you guys to see that journey too and to be aware of the infection side of things with BAHA. All this said yes it has been a long journey and you will notice there are chunks were I haven’t posted photos now this is for a few reasons either

  • I couldn’t get good enough pictures of it

 

  • I was busy and forgot to take photos

 

  • It was getting me down not so much seeing the photos but knowing it was still ongoing and at times looking like there was no end to this and being in constant pain with it

 

  • There was no change in the way it was looking so seemed pointless posting identical photos for days or weeks..

 

 

 

 

WARNING IMAGES ARE ABOUT TO BEGIN IF YOUR SQUEMISH OR DON’T LIKE GRUESOME THINGS I ADVICE YOU DO NOT LOOK AND READ ANOTHER BLOG INSTEAD

 

 

 

 

 

 

 

 

6th August 2019

 

 

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28th August 2019

 

 

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14th September 2019

 

 

 

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15th September 2019

 

 

 

 

 

16th September 2019

 

 

 

 

20th September 2019

 

 

 

28th September 2019

 

 

 

 

 

29th September 2019

 

 

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9th October 2019

 

 

 

11th October 2019

 

11th october

 

 

12th October 2019

 

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17th October 2019

 

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21st October 2019- Day they agreed to operate 

 

 

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31st October 2019

 

 

 

1st November 2019

 

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4th November 2019

 

 

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12th November 2019

 

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18th  November 2019

 

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20th November 2019

 

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  21st November 2019

 

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28th November 2019

 

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30th November 2019

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11th December 2019

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12th December 2019

 

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16th December 2019

 

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17th December 2019

 

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22nd December 2019

 

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30th December 2019

 

 

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5th January 2020

 

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7th January 2020

 

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13th January 2020

 

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17th January 2020- EVICTION DAY !!

 

Annoyingly behaving itself compared to other images! think it must 

secretly of known it had misbehaved too much and was coming out

too little too late for it to try to behave now!

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BAHA Revision Surgery 17.01.2020

Published February 7, 2020 by goshgurl95

FINALLLLYYYYY Today was the day, Eviction day was upon us!!

 

I could not be any more excited if I tried, I had waited what felt like a life time for this day to come around and so far so good with no issues, no cancellations, and not picking up the dreaded sickness bug from work  that was doing the rounds causing staff to drop like flies. Although that said I did literally scrub the place top to toe every day.

 

Although I did not have to be at the Royal National Throat Nose Ear Hospital (RNTNE) until 11am when my ward admission time was ,I booked the train for 7.20am as I always feel it’s better to get to these things early rather than late and what with going by public transport , there’s never any telling if there will be any issues or delays with the trains and tubes ,Plus if your late they can refuse you admission, as they can if your late to an appointment.There was no way I was missing it now I had been waiting for this day for months now, well technically longer as issues started in April with infections with them being at least once a month if not twice a month, Until August where the infection refused to budge and refused to respond to any medication. So Yes near enough a year really.

 

I barely slept the night before , not through nerves or anything just excitement that this was finally happening.I then awoke by 4am and made myself go back to sleep until 5am as David was due to get to me for 6.30am to be my accompanying person to ensure I got home safe.

This was all totally David’s idea to take the day off and come with me I had not even suggested that he did this and would have taken mum otherwise.

 

It was so lovely of David to do this and to say he wanted to be there to look after me ,He did a great job of that I can assure you..

 

I got up and got showered and dressed in no time at all ,as I already had my clothes out ready, just super comfy clothes jeans, t shirt, zip up hoodie and material trainer/pump things. I also had already packed my bag with everything I would need or want such as admission letter, my phone ,my book, kindle, purse, slipper socks, wordsearches etc.

 

By the time I was up and sorted and had just put some toast on ,David  arrived, at first telling  me off for the toast as he thought I had to stop eating at midnight and  didn’t realise I didn’t have to stop eating until 7am as I was afternoon list.

 

We then headed to get the train to London , and were able to get an earlier train than we had expected to get, the service was great so much so when we got to Liverpool Street Station David was able to pop into WHSmiths to get some food and drink for himself.

We then got the tube across to Chancery Lane and walked  the rest of the journey as we still had loads of time.

 

We arrived to the Royal National Throat Nose Ear (RNTNE) Hospital by 8.37am and went and spoke to the receptionist who obviously was like ooh your early if you have a 11am admission and I explained it’s because of living in Essex, and having  come by public transport.She was fine about this but said how we were not allowed to go up to the ward until 11, however  she did say we could sit in like a little common room/waiting area with sofas , so this is what we did.

 

David had brought his Ipad with some films loaded onto it so we sat around watching films, starting off with some police action comedy thing , no idea what it was but we didn’t watch it for long before swapping to watch Moanna  and just generally sitting about having a laugh and chatting , which was really nice and time past quickish… I’ll explain…

 

It was going quick until 10am when I had to stop drinking and downed near enough a litre of water  and then for me anyway that last hour just dragged, it felt like it was a never ending hour,Not through boredom or anything just through  willing it to be 11 to start the ball rolling with the day really.

 

Only annoying thing besides that last hour dragging was that I had stupidly thought it was a good idea to drink a litre bottle of water and now couldn’t stop going to the toilet, so this is probably another reason that last hour went so slow because every 5 minutes I needed another wee.

 

Around 10.50 I had yet another wee and then headed back to reception to wait for the receptionist to let us up to the ward .Which was not long at all..

Although David did ask if he came too, which mucking around I told him no he had to stay in reception and I collect him on the way out , which David then said oh ok and sat down which made me and the receptionist laugh, before she gave the game away and told David, no he goes too..

 

We headed straight up to B ward the lifts did not appear to be working so we took the stairs instead , buzzed through to the ward and went to the nurses desk ,I must admit I panicked for a split second as the nurse we spoke to couldn’t find my name on the board with what bed I was allocated keep saying Bethan…Bethan…. Ermm… You did say Bethan rigtht? Yes.. I panicked thinking please don’t turn round and say you haven’t got my name or that there’s been some kind of issue… I was ready to release the redhead !

 

Thankfully she found my name!!! and led us over to the bed I had been allocated and gave us our welcome pack and explained to me that the nurse looking after me today would be over shortly…. She was not kidding….

literally seconds later the nurse came over and introduced herself ( I didn’t catch her name)  and asked me to fill out some paper work of emergency contacts, next of kin, medical background etc .

 

The nurse came back a few minutes later and took them before returning to take my blood pressure and temperature at which David was sitting there being very supportive laughing…. 🙂

 

Once she had done this she disappeared and then came back with a paper cup and asked for a urine sample to conduct a pregnancy test, Even though I’d already declared not pregnant and no chance of it… Great .. only issue I now when needed to wee could not wee  on cue ,couldn’t have asked 5 mins before?!! My own silly fault though as I knew this would be needed ..

 

I then spent the next 5-10 minutes sitting in a freezing cold toilet cubicle willing myself to wee .Whilst David sat finding the whole thing funny…. He was very supportive.. to be fair he did offer up his urine if I couldn’t go …

 

Eventually I managed it !!! I then left it where instructed and went back to David and sat there chatting with him  and him laughing about the fact I could not wee on cue, and also now with the lady in the bed next to me , who like wise also had the same issue with the weeing into a cup.

I was then told I had to get changed into my gown and stockings now, which was super quick!! Usually I don’t get told to change until 20 minutes before show time !! David loved the whole gown thing and tried doing it up at least 5-6 times each time some how managing to tie it wrong ,can see he doesn’t do this often ..Whilst I’m trying to explain how to do it but unable to actually tie it myself 🙂 …

David was a hugeee fan of my very sexy stockings wetting himself with laughter as I put them on ,well I say putting them on ,more like struggling to and pinching my skin every two seconds …Told you he was very supportive :). Although i’m not sure who found it funnier me or David to be fair to him.

 

By the time we had figured it out and sorted it I then had one of the surgeons come to see me and to discuss the surgery  and take a look at my abutment  and ask a few questions about it such as asking if it bleeds or has any discharge, yes to both and he asked if this had now stopped which I explained it hadn’t and I was still regularly getting bleeding, clear or yellow discharge too .. Peter the surgeon  explained how it should all be really simple and straight forward .Simply just removing the overgrown skin and changing the abutment and how they didn’t expect to run into any further issues, then did the all important and very technical marker pen arrow , to ensure they operated on the right side and told me I was due to be first on the afternoon list , however another lady for medical reasons needed to go first and that I was second.

Peter discussed the risks which would be risk of further infections, risk of revision surgery again, risk of permanent numbness, BAHA not taking and got me to sign the consent form…

 

It was all moving so quickly and beginning to feel very real now..

 

All that was left was for Mr Joseph my consultant and surgeon to come see me and for the anaesthetist to come see me then it would be off to theatre !!!..

 

All was moving the right way and very quickly!!

 

 

12.45 I posted this to my Facebook page :

Arrived in London at the hospital by 8.37.. Sat around watching films in a waiting room until 11 before being admitted to the ward..

All checks and paperwork done within minutes of me being admitted and just recently seen one of the assisting surgeons and signed the consent forms and been told to change into gown and my sexy stockings and socks…

Just waiting to see the anaesthetist and my surgeon and then its off to theatre..2nd on the afternoon list

So excited can’t wait everything seems to be moving quickly

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I genuinely was so excited whilst David bless him was really nervous and said he was worried for me and how he just wanted me to be alright and for me to just be sorted.

 

The anaesthetist came round to see me a short while after I can’t remember what time but I know it wasn’t long after the surgeon came to see me, maybe 20-30 mins later? and talked through what her job was and how she would be looking after me during my operation and talking about how I would go off to sleep, checked my neck and throat. Ensured I had no loose or broken teeth and then she left.

 

Shortly after this my surgeon Mr Joseph popped in to see me and to check on how my abutment  was looking, which frustratingly was no where near as bad as it had been

 

.All still was looking like it was moving quickly ….

 

However after this everything went quiet, really quiet… I’m sitting there doing wordsearches, reading , chatting and messing about with David, chatting to the lady in the bed next to us.

Next thing we know the lady in the bed next to us has been told the ward is closing and that they were relocating her to another ward… 20 minutes later I’m still sitting on this ward that apparently is closing down and assume as they have just brought another patient back that I’m obviously going down to theatre soon and I’ll go to a new ward after, seeing as I hadn’t moved yet.

 

Low and behold I then get told I have to move wards also, unfortunately not to the same ward as the other lady and instead I was on a ward with 1 other lady who was recovering from surgery to her nose…

 

3.30 I am still sitting waiting for something to happen, not realising until one of the nurses asked if I knew where I was on the theatre list and explained yes I was second on the list the  last I had heard .

Only to be told that wasn’t possible as afternoon list started at 1.30 .Anyway so she rung down to theatre to find out what was happening and told me they were on break but they would be calling for me in about 20-30 minutes.

I then post an update to my Facebook page:

Still waiting but have just been told I should be called in about 20 mins to half hour… Hopefully see you all on the other side shortly xxx

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The excitement began kicking in again, finally not long to go now !!!

 

4pm I’m still on the ward and haven’t been told anything further and I’m sitting saying to myself any minute now, any minute now they’ll call for me….

 

Every time someone came onto the ward I was ready to go, nope nothing..

 

Eventually the phone goes and I jump and say to david , this is it they’ve got the call!!

 

Then the nurse walks slowly over to me..

 

I just turn to David and say this isn’t happening is it , I’m going home …

 

She comes over and apologises and says that theatre have just been on the phone  and how she should have told me it would be nearer to an hour as they were now on another break! I said to her how I think they should be banned from having so many breaks.

In all seriousness though I know they need breaks and of course I’d rather them take a break before operating but this was a long wait, I just wanted to get into theatre….

 

It was only after the nurse went back to the nurses station I said to David how I still as of yet didn’t even have my identity bands on and so when the nurse comes back a few minutes later to do my checks we point this out to her..

 

Let’s just say she was not very happy as when she then looked to make sure the rest of the checks had been done ,quite a lot had been missed off and were  not completed which she apologised for and said she would be speaking to her team about as she was the lead nurse… She then asks me if her student had spoken to me earlier about observing my surgery… again No, I explained no I hadn’t had any students ask but how this was not a problem and I was more than happy for them to observe, so she was not impressed by this either..

 

So yes she then sorted out my identity bands, more so of importance due to my allergies and requiring a red band to notify staff I have allergies and then completed the checks such as blood pressure, temperature , and anything else that had been missed as well as ensuring all paperwork and consent was done and signed and checked my details were correct on the bands.

 

The nurse asked if her student could do these same checks too which I agreed to and said was not a problem and then it was time …

IT WAS FINALLY TIME TO GO THEATRE!!

 

I say this.. However the student was really nervous taking me down to theatre, and did not seem to know what way he was going despite telling the nurse he had taken patients to theatre before and rejecting her offer to come with us. He found the lift with help from other staff down to the theatres, not speaking one word to me at all the whole time which was quite awkward…

 

We arrived at the theatres and we had been told on the ward I was going to theatre 2.. well he nearly walked into theatre 1 until theatre staff nearby told him he was going into the wrong theatre and surgery was taking place in there and redirected us to the correct theatre.

 

I went in and got chatting to the two anaesthetists , and took off my gown (I had two one worn in the typical manner and a second worn like a coat) so the coat one came off and then the other one was undone before hopping up onto the bed.

 

Again I’m sitting there chatting away to the anaesthetists , the student was looking really nervous just standing there with my paper work , I smiled to reassure him it was ok and that I did not mind him being there, he was then told he needed to go get a hair net and basically  not scrub in but to change into scrubs so that he could observe.

I was then hooked up to the blood pressure machine ,which they had to swap the cuff on as apparently I’m so tiny and the other one was way to big on me, then linked up to the pulse monitor and finally onto the heart monitors which the male anaesthetist who had undone my gown was really respectful of my dignity and everything and stuck them to my side without exposing any of my body or chest, although I’m sure these would have been moved later.

 

The female anaesthetist then began the process of trying to find my veins, something I have become used to over the years .I have been told on many occasions that my veins are hard to find or that they like to push cannula’s and needles out or that they’re really delicate and I end up with double cannula’s so this wasn’t exactly anything new to me in the slightest and was something I expected.

 

She began trying my left hand as it is typically my right hand veins that get used as I am a leftie, and typically they don’t like to put them in your dominant hand, But we thought we would change things up to see if it was just where my right hand has been used for every operation pretty much.. Nope same result veins decided to hide, so then the male began squeezing the top of my arm whilst the female tapped on my hand in attempt to bring my veins to the surface ,whilst I open an closed my fist..Again all standard for me to be fair.

 

 

One of my veins did come to the surface and so the female anaesthetist began to put the cannula in …… Noppeee….. This is me we are talking about so it was very unlikely that they would find a vein and it would play ball.It didn’t it refused to allow the cannula to go in and branched off….She could not apologise enough , mean while I’m totally fine about it and used to this sort of thing happening. She went to move across to my right hand- the typically used hand that likes to cause trouble… However the male anaesthetist stopped her and suggested trying my left arm instead… Again he began squeezing the top of my arm and we began the process of locating a vein again..

This time we got one and the cannula played ball and went in first time and did not push it straight back out. The female anaesthetist then checked it was all definitely in place and hooked me up to  IV fluids, and then in the second part of the cannula veryyy quickly put the anaesthetic in, usually they press the plunger slowly, nope she literally pressed it all the way in , in one hit… I vaguely remember the male anaesthetist pulling the oxygen mask in front of me and breathing it a few times feeling absolutely fine and totally with it….

 

next thing I knew it was 8.30pm , what happened I have no idea… usually I am given anti-sickness medication via the cannula and then slowly given the anaesthetic I usually feel absolutely fine with the anaesthetic and usually feel myself slowly getting “sleepy” and I know when I’m going under and I am usually aware of coming round either in the recovery room or on the way back to the ward.This was a total first I had no recollection of going under the anaesthetic one minute I felt totally normal and the next I had clearly gone , and again no recollection of waking in recovery or on the way back to the ward, or anything.I literally remember nothing until 8.30pm

 

Speaking to David I found out that I was back on the ward by around 5.45/6ish and apparently the staff that brought me back to the ward had to physically pick me up and lift me to transfer me onto the ward bed, no idea this had even happened.

 

I apparently did not wake until 6.30 and was in and out of conciousness, very confused and disorientated apparently asking multiple times when I woke where I was, what had happened, what was happening, had I had my operation,why was I in hospital.All of this has never happened before and was a first and pretty scary.

 

I apparently had no colour to me at all , I was shivering and shaking and asking for pain relief, again not like me to not have any colour to me after an operation and the last time I asked for pain relief after surgery was when I was 10 and I had my ear reconstructed, I again have no recollection of any of this either. I also asked for more pillows and blankets and then fell asleep again, no idea of this either…David also told me I was very cuddly and kept checking he was there, I do not remember this either.David took these photos for me and again no recollection of them being taken

 

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The first I knew of anything was 8.30pm when I remember waking up and asking David where I was, what had happened and he told me I was in hospital and I’d had my operation and told me I had asked loads previously. I then panicked as I was linked up to a fresh IV , panicking that it had been a deeper infection than they had expected and that this was IV antibiotics, turns out it was just fluids as my fluid levels were very low and I was also told by David that they had said my blood pressure was very low too.

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I was then asked if I wanted anything to eat which I didn’t as I felt as though I was only just coming round, whereas usually I come round within minutes and am back to my usual self.

 

I eventually agreed to eat something and had some kind of  broccoli and cauliflower pasta bake thing .The nurse came over and no joke the bed was completely flat with me laying down , made me sit bolt uupright and then moved the bed up and wow headrush much!! I felt so sick ,dizzy and lightheaded .When my dinner came about 10 minutes later I could barely eat it and had literally two forkfuls and left the rest and went back to sleep.

 

at 10.50 I was given my first lot of pain relief since theatre. 10.55pm I was then handed my discharge paperwork and a sick note for two weeks and told to go.No after care, no prescription, no seeing a doctor, no seeing my surgeon , no checking I was well enough to leave nothing…. literally just thrown out..I only saw nurses on the ward, David also said no doctors or surgeons came to see me or him to update on how it had gone or anything..

 

Well I can assure you all I most defintely was not well enough to leave…. Kings Cross station is a 5 minute walk from the hospital. It took us 45 mins to walk it!. Why? Because I was still very confused,disorientated, dizzy,light headed , had blurred vision so much so I could just about see my feet and most defintely could not see the end of the road! I felt like I was honestly going to collapse and or throw up too!! I felt horrific…

 

I have never felt like this with any surgery ever. I then had a bad reaction to the coedine that I was given…. baring in mind I have an allergy to morphine…Codeine is from the morphine family ..fab…Not!

 

I literally felt like I was never going to get home.David was so worried at one point he actually debated taking me back -although we were unable to do so because as we were leaving so was the receptionist who then locked up for the day had we been a few minutes later they would of had to keep me in.

David also considered taking me to A&E where I was so unwell but neither of us knew where the nearest one was nor were there any taxi about.

 

I must have looked ill as I got stopped at the tube station by staff at the ticket barrier who were also concerned if I would make the journey on the tube back to Liverpool Street.

Some how I made it back to Liverpool Street, honestly I don’t know how! We then got the train back home where I began to perk up a bit and felt better after sitting down.However apparently I still did not look right.Luckily David had driven to the station as otherwise we defintely would have been getting a taxi or lift home.

 

I did not get home until 12.30 Midnight and then mum wanted to know everything and was really worried about me .We both filled her in on what had happened and how everything had gone before heading to bed to try get some sleep.. Not that I got any of that although David did (more on this later in a recovery blog)

 

I just want to say a  huge thank you to everyone who has offered support and well wishes it has meant a lot  and want to say a Special thank you to this incredible man who has been my absolute rock today and didn’t leave my side from  6.30am  picking me up from mine, driving me to the station, getting trains and tubes to London with me, keeping me laughing smiling and entertained with films and just generally being himself until 4.10pm when I finally went to theatre and then being there from the moment I woke up and holding my hand and holding me without hesitation and for not once leaving  my side even in my confused, disorientated state and thank you for then escorting me home safely and keeping my parents up to date throughout.

not once has he moaned or whinged or made a fuss about anything and not once did I ask him to do any of this he’s just got on with it and been amazing from the word go even reassuring and messaging mum to keep her in the loop and even  stayed over night to remain by my side.

Even for two days after  he remained firmly by my side looking after me giving lots of cuddles, keeping me warm, hydrated and I slowly started  to eat because of him even if it was  only junk food but honestly he’s been incredible even helping to brush my matted falling out hair an getting me out for a short walk.Offering to stay with me up until Sunday when he needs to go home to get ready to go back to work

I honestly cannot thank him enough for everything he’s done even so early on into our relationship just accepting me for me, accepting the surgery coming up an all the countless appointments leading up to this day , just generally being supportive and encouraging and then of course being there before, during and after surgery  it’s all so appreciated thank you for staying by my side I love you millions 🥰😘😘 xxx

And with that guys I would like to formally introduce my incredible boyfriend David Kemp xx

 

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End Of A Decade!

Published January 29, 2020 by goshgurl95

Wow! , well where do I begin.. the end of a decade.. Now originally I was just going to do my typical usual Christmas and new year blogs, but I’ve kind of decided you know what I will jump on the end of the Decade bandwagon.

 

So this blog honestly I have no idea how it’s going to go or what direction it’s going to take but hey I’m just going to let it flow and let it happen and let the words take me for a change, rather than the other way around.

 

I think I’m going to begin looking back on the last decade really and then do the usual new year blog, where I look back and review my year.

 

So I came into this decade in 2009 as a 13/ 14 year old teenager  I had just had surgery at GOSH for a fat transfer to even out some of my facial difference and all had gone well.I loved the results they were much better than anything I could have imagined.

 

I  did my first ever charity event  for Great Ormond Street Hospital- A MONTH after surgery! .I did this through my school by going up to London and doing a London bridges 10K walk, a sponsored walk ,walking over the bridges of London raising £550 initially in sponsors and then also collecting much more whilst doing the walk , as we took buckets with us so members of the public could donate throughout the walk.I believe our total raised from the whole event was over £12,050.00 from sponsorship across our school and the partnered Academy that organised the event as well as in donations on the day too

However I was a 13 year old who well , lets be honest wasn’t having the greatest of times . I was desperately unhappy and depressed due to  ongoing bullying from the age of 8 years old and there just didn’t seem to be an end to it. The older I got the worse it got. I had lighters held to my hair in the middle of English class at school there were three teachers in the room not one saw and not one of classmates did or said anything besides laugh, I received death threats, I was told to go and kill myself , told my life was not worth living.

The bullying did not stop there.It followed me into my home life as I began to be cyber bullied through MSN (I know showing my age now!) even when I blocked them, they would create fake accounts or pass my login to other people at school and I would be added to chats via them ,I’d leave a chat and instantly be added to another.Each one as nasty and malicious as the previous one ,ridicule, hate and  laughed at.

My schools did nothing about it even when I printed out some of the MSN chats and took them into school I was told there was nothing they could do it was out of school .I actually got in trouble for calling one of the girls spotty!! and that was all they did despite them telling me that I deserved to die and I should kill myself, they got no punishment and I got told off for calling her spotty? OK I shouldn’t have called her spotty but I was upset and hurt and given the comment she gave me I could have been a whole lot nastier but that isn’t me and that was the meanest thing I could think to say to her .

 

Even  when the bullying was happening  in school they didn’t do anything about it,  giving my parents the excuse that they couldn’t and wouldn’t do anything or involve the parents of the bullies saying things such “well you don’t know what’s going on in their home lives” “they have a complex home life” “they have a difficult background”  I don’t care, I’m sorry but I do not care if someone has  a bad home life or not , it does not make it acceptable to bully others or to belittle others there is no excuse. Either way the parents should have been made aware and the bullies should have faced punishment and consequences for their actions.Yes of course it can’t be nice not coming from a great home environment but I’m sorry it is no excuse for bullying, there is no excuse period for bullying!

Feeling desperately unhappy I decided you know what the bullies are right my life isn’t worth living. My school obviously agree as they are not doing anything, so clearly my life isn’t worth it and means less than everyone else’s does just because I was born with one ear and red hair and spend a lot of time in and out of hospital.Sounds pretty minor to me when I read this back but hey maybe it was actually a big deal?!

 

I believed the bullies , I believed they were right my life wasn’t worth living.

 

why should I be living everyday scared,unhappy unsafe ,unprotected ,depressed, upset and miserable?

Why should I be feeling unsafe walking to and from school and even once inside the school gates?

One night after school after feeling I had nowhere else to turn after a rough day at school and not wanting to turn my laptop on to play my computer games and recieve messages of hatrid popping up and having gotten into an argument with my parents as I couldn’t tell them what was happening …  I  decided this was it …. I was done…

 

That evening I attempted to end  my life , to put a stop once and for all to the bullying, to be free of the bullying, to be at peace, to make everyone else happier at least they could then be happy and I would be happy knowing I didn’t have to go through it and would be in a better place..

I went into the kitchen and began smashing my head against glass in the attempts at severely concussing myself or more to the point for me to hit my head against it hard enough for the glass to smash and go into my skull and for me to bleed out, as although I had contemplated getting a knife and slitting along an arterial  vein and bleeding out that way I could not get up the courage to do this….

…….Thankfully I am still here today to tell my story as my mum came into the room and spotted me screaming an crying telling her how much I loved her but I had to do this, I wanted to die.

 

Thankfully my mum  was able to stop me , otherwise I doubt I would be here now if she hadn’t of walked into it.

 

The bullying didn’t stop and the school did nothing still , but in time things got better I still hated school and couldn’t wait to leave.

 

2010 I was still a teenager 14/15 by this point and sitting the dreaded GCSE mock exams… not a fun time I hated school anyway but more so exams at school as not one of my teachers were supportive or encouraging whatsoever , in fact they were the opposite and would put me down and tell me how I wasn’t capable or good enough and actually told me I would never amount to anything or do anything with my life! OK challenge accepted!

 

I never actually got any of my GCSE mock results back and when I asked where mine were ,as we had to go over them in class so we knew where to improve on etc.. I was told oh I don’t know , did you do the exam? and how they would look into it, just seemed strange that this was every subject? again I kept questioning and got told oh we must have lost them… again strange how do every single one of my mock exams all go missing?!! I get ok maybe one or two but every single one ?!! …It later came out that they did actually have them but had held the results back as they didn’t feel it would do me any good to see them and I even got told on my maths one how I had not tried at all , that was not fair , maths was my hardest subject I never did , and still don’t understand it but I always tried to the point of coming home in tears when I couldn’t do my homework because I didn’t get it and nobody at school was listening or helping me and my parents had been taught different methods to what school taught and I didn’t understand that either! I was so terrified of not doing the homework but I also did not understand it at all it was like looking at a foreign language and being expected to understand it and answer questions about it.

 

It later came out in year 10, after the mock exams and actually at a meeting with the school SENCO when he told me he had my Maths mock exam paper and that it had been held back from me and even then I wasn’t allowed to see it, apparently I had gotten a U (Ungraded) I had done that badly they hadn’t even graded my paper.It was only then that it was suspected I may have Dyscalculia -Mathematical dyslexia ..But I was told I was too old to undergo testing for this and how it was not worth my while sitting the GCSE Exam in Maths as I would be setting myself up to fail and wasting my time and everyone else’s time and how it would not be worth them or myself being put under that pressure.I was told I was pulled from the exam and if I turned up there would not be a paper on the desk and if there was ,how it would be ripped up in front of me.

 

It turned out from working 1:1 with the SENCO twice a week instead of going to my PE lessons, a massive trigger point for bullying .I did actually more than likely , in fact he was certain I had Dyscalculia and had done since infant school but nobody had picked up on it.He tried helping me to begin with doing homework sheets or sheets from class , that didn’t go well we never actually ended up doing them I just didn’t understand any of it and then  for a few weeks we began  playing simple card games and using playing cards to visualise numbers and add them  up or take them away.Some after a while or after a lot of thinking I could do ,others like 2+2 straight away but some like 8+4 I could not do and just did not click .Even so much as telling the time on a clock , I had never been taught or learnt   how to do this and had somehow slipped through everyone’s nets since starting school and nobody had picked up or done anything about this. I felt awful I knew deep down I couldn’t do these things but at the same time I was 14/15 years of age I should know these basic simple things, but I didn’t! I couldn’t do it. I felt stupid.

After a few weeks he stopped trying  and left me to sit there with the cards and try to just repeat what we had done weeks previously whilst he sat at his computer doing other work , and slowly he eventually would turn up hand me the cards and disappear, then that stopped too the cards stopped and he stopped turning up, so I would just sit there and read my book, I loved reading.

After that he did not help me with my maths anymore ,Nobody did.  wanted to learn ,I really did but I just didn’t understand and nothing anyone was teaching me was making sense or helping. I was not purposely being difficult.

For a second year running I also again did the London Bridges 10K sponsored walk with my school and one of the partnering academies this time raising £250 in sponsorship and the total raised on the event was £10,175.00 in sponsorship and on the day bucket donations, where I even convinced a couple of builders to donate their lunch money for the day and they both put £20 each in the bucket!

 

2010 also saw the year I met my celebrity crush Olly Murs and well wow ,just wow photos and videos do not do him justice!!

 

2011 saw the year I finally left school and the year things started to change and began looking up and a lot brighter, little did I know this at the time though. I passed all of my school GCSE subjects despite being told by my school I was not smart enough and I did not have the capability to pass any exams.I had also got into college again despite what teachers at school had told me and I was determined to make something of my life.

I also went to my school prom where I won the title of prom princess , something I had never in my wildest dreams imagined, this for me was the changing point,Honestly I was surprised at myself for even attending my school prom with the issues I had at school why I  went still to this day cannot answer  .I guess a switch in me had been flicked and my outlook on everything was beginning to shift and change for the better.

September 2011 I began college studying animal care and had the best year , a whole year bully free and I was enjoying myself and I could honestly say I was happy.

it was actually  a good year looking back ,I went to my first concert.. yes of course none other than Olly Murs’ tour and then again in the summer , and again I got the chance to meet him when he came to my home town and broke a Guinness world record for most cups of tea made in an hour.

I  was actually being young and enjoying my life.This was also  the year I started this blog it’s mad to think it’s been going 8 years ! I had no idea it had been that long, and look at it now still going strong.

I also did my first newspaper article in 2011 for my local paper which was titled blogging out the bullies and shared my story about how I was changing my life around and overcoming the bullying  after so many years of just taking it, I was fighting back and blogging about it to make others aware it is not OK and doing everything I could to try to stop bullying.

 

2012 I was still loving college and had graduated from my animal care diploma course and  just started my first of two years studying  Animal management.

 

2012 I started  to accept myself for the first time since the age of 8  and  began not to worry quite as much what people thought about me.I remember I had a panda hat and one of the pom pom ears fell off, this was my favourite hat however I continued to wear it with one ear as a Microtia mascot.

This was also the year that  I found out about BAHA’s and started the journey to learning more about them before  deciding that  this was a route I wanted to go down and began looking into the surgical route and getting it sorted out after hearing fully for the first time after trialling the BAHA.

2012 also had some not so great moments  this was the year I found out my hearing in my left ear was worryingly decreasing and I  was diagnosed with Bilateral sensorineual hearing loss and had to go for emergency hearing aids which as a result delayed the BAHA process .However I  switched it up into a positive ,dusted myself off and got on with it.

I became a Brownies and guide leader locally , after saying since the age of 6 I would do it after loving being a rainbow and being inspired by my leaders and continuing to love girlguiding as I went up to Brownies, although I did do Guides I did not enjoy this section .Another new thing I had my first ever driving lesson on for my 17th birthday !

I also completed my first charity 5k run for GOSH despite vowing never to run again after leaving school and hating PE and managed to raise £250 which dad’s work then doubled making our total £500

 

2012 I was still very much an Olly fan and attending his concerts, of course nothing had and still hasn’t changed there!

 

2013 I got my first tattoo  the words dream,love,hope,family,believe,strength written in the shape of a heart to remind me to always love hard, to have hope to always strength and believe and that I always had my family by my side and of course to love them too , I also got to trial the BAHA for a week and loved trying out in different environments from college, restaurants, out and about in the community , out in the car and at home and noticing what a HUGE difference it made to my life before completing various other tests ,diary logs etc before finally getting the  green light of approval to get my BAHA surgically implanted and was now on the waiting list for surgery.

 

2013 I attempted to apply to university to study animal medicine, and well I failed at the first hurdle of completing the UCAS application, kind of glad about that now seeing as I didn’t stick at animal care in the coming years! although whose to say I wouldn’t of if I’d got accepted.

 

I turned 18 and became an adult like what?!! how and when did that happen!!!

 

2014 I started the year off by getting my BAHA surgically implanted which was like all my Christmases had come at once and got the activation and switch on of the BAHA that march and was just everything and more,utterly life changing .

 

I was also very active with Microtia UK by this point sharing my story and regularly attending mingles and meeting other families .I was very much following and a part of Microtia UK looking into forming as a charity and helping in the process of making this a reality rather than a dream.In 2014 when we finally became a registered charity and not only was I invited along to the launch party, but I was also asked to give a speech to over 140 people including those who had paid for tickets to attend the event , medical professionals from various charities and organisations, consultants and surgeons specialising in microtia including Neil Bulstrode !! .I’m not sure how I did but I some how with the help of quite a few prosseccos  I did give the speech talking about my experiences growing up with microtia and where going forward I wanted to go and what I wanted the charity to do, what the funds would go towards.I was also able to secure the highest donation of the night of £800 which was donated on our silent auction to test drive a BMW something or other, apparently the man who donated it had said it was my speech that inspired him to dig deep and donate it! wow just wow what a moment that was.

 

December 2014 I was invited to attend one of Great Ormond Street Hospital patient Christmas parties and got mingling with the celebrities discussing my blog and my medical journey at GOSH with singer Connor Maynard, Martha Collins from The Great British   Bake off,  JB from JLS, TV presenter Matt Johnson from This Morning, some of the cast from The Only Way Is Essex, but the best one I got to meet and talk to was none other than Davina McCall who was just amazing and was so interested to know all about Microtia, about my experiences with GOSH, all about my blog.. it was so incredible Davina genuinely is one of the most down to earth people I’ve ever met  so kind,caring and compassionate that she actually asked me if we could take a selfie and photos together !!

 

I did that despite two nights before this being in A&E with my health and even on the day of the party I was not 100% and was dosed up on A LOT of medication for a serve infection to my BAHA, which actually the day after the patient party saw me admitted into hospital for 4 days on IV antibiotics after having had bad reactions to all the medications I was on.Nearly facing spending christmas in hospital.

I was then rushed up to the RNTNE hospital the day after being discharged from my local hospital and came close to facing emergency surgery.Thankfully this was not the case.

 

Some how by some Miracle I also managed to finally pass my driving test too , only my fourth attempt but hey!!

 

On top of all this I also  featured again in my local paper  relating to my blog  and I featured in Great Ormond Street’s Members matters magazine with a double page spread, as well as on the front cover with my story, which was madness!! I had no idea I was going to be on the cover until I received my copy in the post.

 

 

2015 I  became the first fundraising officer for Microtia UK charity meaning I over saw who had our collection pots at what time, kept an eye on how much money was being raised and also sent the charity pots out to anyone that wanted one and had stock of the charity wristbands too which was pretty exciting!

 

After doing an article in my local paper I received a letter from an agency who had seen my article and wanted to help me to raise more awareness with my story an wanted to see if any of the magazines would take my story on, of course I was happy to accept and we worked together for weeks putting my story together for her to pass round to various magazines and newspapers. We didn’t expect to get any of the big papers to pick up on it.However The Sun Newspaper were very interested and commissioned a piece. However this unfortunately did not ever happen despite them sending a photographer and writing up an article which I had confirmed to being happy with.That’s life magazine then picked it up and ran my story in their health pages which was incredible.

 

I also had my story shared in BATOD Magazine which is the British Association of Teachers of the Deaf magazine so is not one that can be bought from a local newsagent and this shared my story growing up different with microtia and my story with my BAHA too.

 

I also got transformed into a mystical/dark mermaid for my sisters hair and beauty college course.

 

November 2016 I left working for Mcdonalds after 4 years , the last few were awful as a new manager took over and I experienced work place bullying and got head office involved for discrimination in the work place. It’s safe to say I was glad to leave .I went on to  begin following my dreams of working in a nursery where I went on to gaining my level 2 qualification and had the best time and absolutely loved the team I worked with and more importantly loved working with the children.I signed up to become an organ donor to help others after I pass.

 

I also began raising awareness for mental health as my little sister three years previous had been diagnosed with Anorexia Nervosa, mild depression,panic disorder, strong body dysmorphia, and panic attacks and I was sick of peoples judgement when they quite clearly had no idea saying things like ” she just needs to eat” “get her to eat then” not quite that simple and quite honestly her mental health destroyed us as a family with her being away in hospital for 6 months, then home for 11 weeks before being admitted again this time to a hospital in the Cotswold’s so miles and miles away, self discharge, readmission’s etc

 

2016 I turned 21… full on proper adult , what?!! scary stuff! and I also sadly was then discharged from GOSH after turning down major surgery which had been building up for a number of years but due to my sisters deteriorating mental health I just felt I could not go through with it.As a result of leaving a hospital that had become my second home to be referred to adult services at the Royal National Throat Nose Ear hospital fully, not just for BAHA .

 

I had to get my second tattoo of peter pan on my left ribs, so that wherever I go a piece of GOSH will always be there by my side every step of the way.

 

2017 I walked over the O2 and survived!! I attended more Olly concerts and was just loving life as much as possible around everything with my sisters health.I was a lot quieter in terms of charity and volunteering not because I didn’t want to be doing it .However I was spending a lot more time with my family as I was ,as well as the rest of the family taking things quite badly with my sister as we faced another year of her not being in great health, and I was also busy working full time and doing my college work to gain my childcare qualifications as well as being a brownies and guide leader and planning and running activities with them as well.I had also met my first boyfriend and was trying to juggle and balance this too.

 

2018 I left my job at the Nursery to work at another nursery closer to home for a reasons firstly because I could not afford the apprentice wage for a further two years with running my car and having to travel in , but also because  I had split with my first boyfriend who was very abusive and controlling and had turned up at my work place waiting for me and I just did not feel safe, so felt I had to move away .Well that was a huge mistake .I absolutely hated the new nursery ,the management were absolutely awful and I began to experience work place bullying for the second time.

Off of my own back I decided to finally undertake my level 1 British Sign Language qualification and fell head over heels ,madly in love with signing and was honestly one of the best things I did.

I went on a girlguiding action for change weekend and began a 9 month project to make a change, to make a difference not just for girls within guiding but outside of guiding too and based my project around hearing loss and deaf awareness raising awareness of the different levels of hearing loss, how it affects people and educating about how to be deaf aware and the use of sign language. As well as this I became a qualified peer educator within girlguiding so that I would be able to help the girls in all sections of guiding with more sensitive topics such as mental health, sexuality, puberty, bullying, etc.

 

Continuing on with girlguiding as a district we took the girls away for a long weekend and I volunteered to be first aid lead for the whole event which was great fun and loved every second of.

 

I also spent my 23rd Birthday on a weeks guide camp where I again was first aid lead for the whole of this event dealing with travel sickness, migraines, home sickness, an outbreak of sickness bug.Not to mention the awful weather where it rained near enough the whole week and my tent leaked in the bedroom compartment so my bed got lovely and wet..that’s one way to spend your 23rd birthday…

 

ANNDDD THEN WE HAVE 2019!! THE FINAL YEAR OF THE DECADE!

what can I say about 2019?!! Honestly I didn’t want it to come to and end it has been the best year for me by far.Totally different  to how the decade began.

My first newspaper article was 7 years ago and well 7 years ago wasn’t the best place nor the worst place either but 7 years later life was so much better.

 

I came into 2019 a totally different person to the shy,worried, depressed 13 year old that came into the start of this decade. I came into 2019 single, happy, loving life although not liking my new nursery job whatsoever.

I began going out more and going out to nightclubs which I hadn’t really had the confidence or courage to do before, let alone going out in full blown fancy dress as Harley Quinn for a friends superhero themed birthday night out !! I  began going out pretty much every Friday and Saturday night to singles events , or out with friends seeing bands performing .

I found in February 2019 that I had been selected to represent girlguiding at the queens garden tea party in May, helping and assisting on the day of the event which was a huge deal and so exciting.

 

March 2019 I received a letter telling me that I had not only been nominated but had also won a Jack Petchey award through girlguiding but would have to wait until later into the year to collect it..This again was huge I had no idea I had even been nominated and couldn’t quite get my head around that let alone knowing I had also won it!!

 

I also that same week found out I had passed my second of three sign language exams and was absolutely over the moon about this.

 

I mentioned how I had started working for a new nursery but had experienced work place bullying, well this got worse to the point whether my boss at the time knew it or not she had messed with the wrong person and I fought back getting a union involved due to them trying to unfairly dismiss me and just not being professional in the slightest. In March I finally handed my notice in and told them what I thought of them, after the manager told me I should never work with children.

In April I then began working at a Montessori Nursery, so a higher rank and status than just your standard private day nursery and was employed there as the lead practitioner for under 2’s and absolutely loved it. I worked with the best manager that I could possibly have asked for in Sallyann. I loved every aspect of the job. OK it was a very small nursery with 10 children on our books across the whole nursery compared to day nurseries I had worked at previously where in the preschool room alone there were 30 children per day, so 10 children across the board was lovely.

This did  not mean we had no work at all , in fact the opposite because we were such a small run nursery we didn’t need many staff so that made the staff team a lot closer and stronger working relationships and there was no hierarchy we all mucked in and did everything together! We also had a lot better bonds with the children and knew the children inside out and back to front and meant because we were a small nursery we could do a lot more with the children from visits out into the local community teaching the children about public transport such as buses. Taking them to the local library teaching them about books and about library cards as well as attending story and rhyme times ,we also visited  local museums, taking them to the local shops to buy things we needed for the nursery teaching them about money, we even took them to post letters. We were able to get a lot more out of the children because we had the time for them individually.

 

May saw Deaf Awareness week come around and this is always a week I am so passionate about usually I only really talk about my medical conditions on my blog or Facebook page that is linked to my blog, rather than my personal account. The only reason for this is yes OK it is my account so I can post what I want on there but I find people get bored easily of it and if it’s on a separate page then people have the choice as to whether they want to know or not.

 

Deaf awareness week though means far too much to me for that , so this year instead of containing it only to my blog and blog Facebook page I shared some posts on my personal account too .Posts included quotes and statistics.I then decided to share this post on my accounts too :

 

“DEAF AWARENESS WEEK 2019..

so I know it’s now the end of the week, and deaf awareness week 2019 is coming to a close however it’s not quite over yet….

Deaf awareness week is a week that is generally important for anyone really but especially for those affected with deafness.

For me this a hugely important week..

I was born with a condition that isn’t that well known or heard of.. Microtia.

Microtia is a condition that affects 1 in every 7,000 births and affects more boys than girls and results in the underdevelopment or complete loss of the ear or in some cases both ears.

I was born with right side microtia meaning I was born with a peanut size fold of skin in place of a right ear.known as grade 3 . As a result this means I was born with no hearing to the right side.

As a young child I accepted this as Me and part of who I was referring to it as my little ear.. I had emergency surgery on my little ear at 3 years old due to cartilage pushing through the top of my little ear turning my ear purple due to my ear being underdeveloped and there being no room for the cartilage to go..

This then had to be repeated a few months after as it happened again

However growing up with a visible difference wasn’t easy and I regularly got bullied and had fun made out of Me because of the appearance of my ear.. So much so at the age of 10 I made the decision to undergo major surgery to reconstruct my ear.. Taking cartilage out of my ribs and using the piece of skin I had in place of an ear I was in great ormond street hospital for 1 week after 8 hours in theatre…

I then had the second stage of this at 11 years old which involved taking a skin graft to create the ear flap. This time I was only in over night and in theatre for a shorter period of time..

The bullying didn’t stop it only continued

Anyway when I left school and moved to college and felt I was in a better and more positive place I decided to create a blog to help raise awareness for microtia along with my other medical conditions in the hope of helping at least 1 other person and their family to not feel alone and isolated growing up with microtia..

 

On my blog I shared my story and experiences some harder then others but my blog https://goshgurl95.wordpress.com is up and running and still going to this day..

Through writing my blog I have been given some incredible opportunities such as having my story shared in my local newspaper, being featured in that’s life magazine, great ormond street hospitals blog, featured in great ormond street members matters magazine with a double page spread and being the cover story on the front of the magazine, BATOD (British Association OF the Deaf) magazine. And given a speech to over 140 paying people including medical professionals such as consultants, audiologists, surgeons etc at the microtia UK charity launch party

Throughout life I have always struggled with my hearing. When I was 16 I met another couple of girls similar in age to me at a microtia mingle who told me about BAHA (Bone Anchored Hearing Aid) of course this instantly was something of huge interest to look into and straight away got in contact with my consultant and surgeon Neil bulstrode who straight away organised for me to trial one at my next hospital appointment…

 

Safe to say one of the best and emotional experiences I’ve had I never realised how much I couldn’t hear and how much I was missing out on and never knew some things even made sounds such as fans, the noise of high heels, pages of a magazine turning, I heard my phone ringing in my bag on a noisy street for the first time, began to be able to pick out conversations in a busy waiting room which otherwise would be one big noise where I couldn’t and wouldn’t be able to pick anything individual out…

 

I was then referred to the Royal national throat nose ear hospital to begin the process to see if I qualified for a BAHA..

However this was not an easy journey or without its set backs.

 

The first hearing tests I had were the standard hearing tests and then in depth tests testing my bone frequency and conduction, repeating words said etc .. I went back up to see the consultant for the results where my right ear came out as expected in the standard hearing test and the repetitive tests…

 

However my left ear did not and was cause for concern..

 

I was told I had a hearing loss to the left side too meaning I was diagnosed with bilateral sensorineural hearing loss and was sent straight back down to audiology to get hearing aid impression taken and an emergency appointment to return the following week to get my hearing aid fitted. Meaning my BAHA at that point was put onto the back burner as it was more important to fix the left side first.

 

Once this was sorted the BAHA journey started up again..

This started with consultant appointments, lots of background information being taken, a weeks trial of a baha on a headband, diary logs to keep of what I could hear with the trial baha, thoughts feelings, what worked and didn’t work etc.. But finally I got the go ahead and surgery was booked.

 

Slight set back on my intended surgery day with an emergency coming in and my surgeon being the only one that could do either surgeries..

 

Eventually aged 18 I got my baha.. A few months later and I got switched on.. Best feeling ever and honestly never looked back it has been one of the most life changing things I’ve done and yet a few years prior I would have been embarrassed to have it on show but once my baha came along I honestly didn’t and still don’t care what it looks like as the benefits of it outweigh anything else and ill happily wear my hair up and talk about it…

I was also at this point registered deaf through the council and had specialist deaf doorbell and fire alarms fitted to help me around the house

In September this year I got the opportunity to do something I’ve wanted to do for so long and begun learning British sign language at level 1 and wow it has totally inspired Me and my love for sign language has just grown to date I have passed my first 2 of three exams with the final one weeks away. This has genuinely been one of the best things I have done and has helped give me more sense of belonging and community and another form of communication to use not only for my own hearing issues but to communicate with others in our community and learning has made me more inspired and driven to keep going as far as possible with sign to help others to the point I am now wanting to work with deaf children in future, teach sign language classes to children and adults, get up to level 6 with bsl and take my interpreter exam too…

As deaf awareness week 2019 draws to a close I today have watched hands 4 voices signing choir and been covered completely in goosebumps and moved emotionally by the performance I couldn’t stop smiling so much so I am on the waiting list to join the hands for voices choir and have gained a place on level 2 British sign language in September this year.. The journey and love for sign and helping others continues and I couldn’t be happier…I will also be running a 5k inflatable assault course for microtia UK later this year as well as taking part in RBC Race for the kids too any sponsors for either would be amazing please ask for the links if you are interested in donating

If I could take a magic pill and wake up tomorrow morning no microtia and no hearing problems I wouldn’t take it..

Genuinely wouldn’t change any of it for the world without it I wouldn’t be me not that it defines me or who I am it’s just part of me but  I wouldn’t have had the experiences or the journeys that I’ve had an nor would I have met some of the amazing people that I’ve come to know and some have become truly special friends and part of my life

That went nuts and was shared on various support groups and was just shared everywhere really.I was shocked when I went into my next sign language class and my tutor pulled me aside at the end of class to talk about it with me , I had no idea she had seen it as we were not allowed to have our tutor on Facebook but it was so lovely to know that she had seen it and the support she gave me for writing it too was phenomenal.

 

21st May I went and served my queen and community at the Queens garden tea party, in Buckingham palace where royals in attendance included her majesty the queen, The Duke and Duchess of Cambridge (Kate and Will), The Duke of York, The Earl and Countess of Wessex, The Duke and Duchess of Gloucester, The Duke of Kent,Princess Alexandra .This was a huge honour to have been selected .Duties included manning the gates and checking peoples tickets,directing guests to the correct entrances , assisting disabled guests into the gardens .It was such an amazing day there are no words for it at all, just such a proud moment .

 

I went through another difficult break up with another idiot, this time a compulsive liar.. so yes my track record with men was going swimmingly well first an abusive and controlling nasty piece of work, then the next cheated on me with his ex, and now a compulsive liar …Brilliant…. However it was a lucky escape and I’m glad I got out when I did..

 

26th June our sign language course had finished and we had a celebration evening where levels 1-3 were invited to attend with a plus one for cheese and wine and a general get together and also for us all too look back on our year and for the tutors Carol Cook and Paula Parker to give out a few awards too.

 

wow what a night it was!! Paula Parker my sign tutor began speaking about level 1 and our year together and then began level 1 awards and read this out:

“Ok let’s make a start

The first award goes to a student who has truly touched my heart-I first met her on a introduction to BSL workshop that Carol and myself ran last year,she was desperate to do the level 1 course and enrolled for the September intake.

I have not only watched her love for BSL grow,but also seen her blossom too.I know that BSLhas been a very personal journey for her, she has highlighted how much it has impacted on her life  and in her words has “found a place where she belongs”

She is passionate about her studies and wants to make a difference in the deaf community -I know that she will!

So

In recognition of the embracing of BSL ,her aspirations to continue to make a difference

I am so pleased to present this award to:

Bethan Harvey

Well done Bethan!

I was absolutely speechless and shocked there was no way! I had no idea at all , not one little inkling even when Paula was reading it I was sitting there going ohh that’s Debbie, ohh that’s so and so not once did it ever cross my mind it could be me. I was so shocked but this was so lovely to hear too but there was no way I could’ve done any of it without Paula and Carol being there every step of the way offering support and encouragement.

 

July of 2019 was spent working and when I wasn’t working I was practising my sign as I had failed my final exam of level 1 BSL and was resitting and just wanted to get it right and not mess it up as I had been offered a place to study my level 2 in September and I wanted this so badly,however it would not be possible unless I passed level 1.

 

August was spent worrying about a few things.. firstly I had been told my job I loved so much and was acting deputy for by this point was going to be gone by the end of the month, as the company had gone bust and there were no funds to keep it open and running.This was devastating as I genuinely loved Sally and myself little nursery it was like our little family .We did everything we could between the two of us to keep it open .We talked buying the company, looked into taking it over ourselves as new buyers and setting up our own nursery.I  even talked investing my savings into it. Unfortunately it didn’t work out as the hall owners had found someone who had more money an wanted to take them on instead, not that they told us this until our last day.

 

sally and myself had built the nursery up from scratch,we were both devastated and absolutely heartbroken .We were both redundant.I had been offered a job working as a private nanny for one of the families, I looked after their youngest in the under 2’s section and was his key person and I also used to collect their eldest daughter from school and bring her back to the after school club and we got on really well, and they asked if I would continue to work for them but obviously based at their house.I of course agreed.However the day before we closed this fell apart as the mum had been offered a job in Birmingham and they had decided to move and they no longer needed a nanny.

I had then been offered a further two jobs one private nannying for two boys in Navan , Ireland… I had done phone interviews with both parents, constant back and forward emails and was so tempted to take the job and start a new life in Ireland..

 

However… What about sign language? this was always one of my HUGEE draw backs I loved my sign language studies I wanted to pass my level 1 first and hoped I would be offered a place on the level 2, I also wanted to relocate and have a fresh start and make a new life for myself in Ireland what was I supposed to do?!

 

I had also been offered a job here in the UK about a 10 minute drive from my house if that, working as a support worker with Young females in residential care with a variety of special needs, learning disabilities and challenging behaviours.I had not expected to get this as I have no experience in adult care work.

4th September I got a phone call I had desperately been waiting for.. Paula phoned me and told me I had passed my resit of my final exam for BSL level 1… I had passed ….I was now level 1 qualified in BSL … this was the best news ever and I sat there crying tears of joy,relief, happiness and so many emotions..I had done it …I could now do my level 2 !!

 

 

WAIT….

 

Could I do my level British Sign Language in a few weeks?! I didn’t know ..I still absolutely loved sign and I still wanted to do level 2..However I had been offered the amazing opportunity for a fresh start, to start my life over in Ireland and I love Ireland,it is always somewhere I have said I would love to end up living, it’s just stunningly beautiful.The family I would be a live in nanny for the mum was involved in Girlguiding and had said she was more than happy for me to continue this out there so that was great…

 

BUT WHAT ABOUT SIGN? I love sign language so much  and I did not want to close the door to it and turn my back on it ,did I stay did I go? What was I to do..

 

I eventually decided I was staying here, for  a few reasons .I could not turn my back on sign language I loved it too much to give up and not take it any further, I had been offered a place in Hands for voices signing choir and I could not wait for this and I knew neither of these would be options over in Ireland. I also decided to stay because now would not be the right time to go as since April this year I had been suffering with infections to my BAHA , so much so by August I was up at the RNTNE hospital at least once-twice a month , I didn’t know how my BAHA would cope with the additional pressure at this point with flying, I didn’t know if I could transfer my care out there without paying for my health care and although the family had said I could come home for appointments it would have worked out expensive as I would be without my car so I would have to get from their home to the local airport an hours drive away, then pay out for flights back home and then from the local airport here get home, then from home get trains and tubes to London and do this again to get back to Ireland again and I just could not do this, not at this point with the unknown and surgery being on the cards.

 

I decided Ireland would always be there , my health and sign not so much I knew the opportunities with sign were only going to happen the once and I knew I had to take them now or never, and never was not an option.

 

September I began level 2 of sign Language and I knew this was absolutely the right and the best choice to have stayed, I don’t know how  I could have turned my back on it, no way , I know I would have hugely regretted it.

I also fell head over heels in love with Hands for Voices choir and this just made the decision to stay so much easier again no way I could have turned it down I would have hugely regretted this also.

 

I took the job as support worker and it is totally different from everything I have done before ,there are days it absolutely tests everything you have got and then some, there are days I have clue what I am doing or how I will handle the next situation.Honestly though I love it everyday with the girls is so different from the one before and it really does keep me on my toes but I wouldn’t change it for the world, hard work yes, but so so so rewarding.

 

October I braved the cold winds and donned my running vest!! and took on a 5K Inflatable assault course run for Microtia UK it was freezing cold but it was so much fun throwing myself over inflatables, trying to navigate my way around the courses, finding ways of going over or under different obstacles and some how managed to complete the whole run in 45 mins.

 

I also FINALLYYYYY in October after having on an off  BAHA infections every month from April up until August when the infections refused to budge or respond to anything ,had an appointment where I was not given more creams and tablets and instead my consultant turned round and FINALLLYYYY agreed to surgically intervene, The best thing I had heard ! Music to my ears!

Whilst being busy with choir practise, sign language classes and working full time I had forgotten all about my action for change project, until I came home one evening to the certificate and badge on my door mat! Another thing done ,completed and ticked off of my list of things I wanted to do and achieve this year!

 

I then got presented with my Jack Petchey and that was the most terrifying and nerve wracking thing ever! sitting separate from my parents sitting in specific designated award seats right at the front…AHH… Then eventually a group at a time being called to get up and go round to the back of the stage and get in our place to be called up to collect our awards, I felt so sick, I don’t do things like this at all.. I even debated not going up there and collecting it at the end.. It was a lot to do and remember first listening from back stage for my name was the first issue as it was so loud in the venue, then of course being back stage behind a thin curtain I could hear everything going on out there, people on the stage, the host, it was just so noisy and echoey.. Then on hearing our name we had to walk up onto the stage doing a guiding handshake, then walk to across to half way across the stage and shake hands with another guider and then  walk across the remaining half of the stage swap hands and do a regular handshake with the deputy mayor of our town whilst posing for a photo receiving the certificate and award… ANDDD trying to hear the deputy mayor and what she was asking ,I didn’t have a clue and I just hope I answered her question correctly, and then we had to go and sit down on chairs in the corner of the stage and listen to what the reasons behind us winning the award was and wait for everyone else before posing for more photos.

 

Despite it being terrifying it was  a great night,However I left feeling a little disappointed as I did not hear the reasons behind me being nominated and winning the award and nor did my parents.I felt this was disappointing as guiding in my area are aware of my deafness and yet had not put anything in place so I knew what was said, whether this was being given a written copy of it with my certificate, it coming up on the screens, nothing.. Even my parents struggled to hear what was being said from the audience and this upset me as I felt there should be something in place for those with hearing impairments and deafness so they too could have enjoyed it , not just for myself but I’m sure there must have been others in the audience or somewhere with some form of hearing impairment or deafness or at least must be at other Jack Petchey award ceremonies.

 

Anyway I emailed them and asked and they apologised and got back to me with this:

 

Bethan has been in the Guiding family since she was the age of 5.

She is currently working towards her Queen’s Guide Award, Chief Guide Award, Look Wider Award and Commonwealth Award .

She has also trained as a peer educator.

Bethan is a leader at both Brownies and Guides.

Bethan inspires others on a day to day basis as throughout her life she has been constantly in and out of hospital undergoing operations which she talks openly about on her blog.

She also uses her blog to raise awareness of Great Ormond Street Hospital and all of the charity work she does.
She is writing a book to raise money for Microtia UK and other charities.

Bethan is registered deaf and has learnt sign language.

Bethan joined Rangers at a later age than most but she soon immersed herself in the programme. She also takes a strong role in helping me lead the unit at times, stepping up if we are adult short and supporting the younger girls.

Bethan will be sorely missed when she leaves in August due to the lowering of the age limit for Rangers.

Pleased that 2 people wrote on the nomination form

You thoroughly deserved the award.

Well done.

YIG

Carol

 

I then went on to write this on my social media , after getting over the shock of winning the award, actually physically having the award and then also reading this email above.I had written another status whilst still shocked about the whole thing, but once it sunk in I wrote this to help others in similar situations to what I have found myself in life.

 

Don’t ever let anyone stop you from doing anything.

Don’t ever let anyone say you can’t, you won’t .

You can.

You will.

All my life I’ve been told you can’t do this, you won’t do that. With some of the most memorable being you’ll never make anything of yourself, you’ll never work, your too thick, your too dumb..

Every day I fight..

I fight to prove them wrong prove those bullies, teachers anyone that’s ever said I can’t or I won’t do something or anything.

I can .

I Will

I want to prove I can and I will not just for me but for others to..

If you want something badly enough you can and you will do and achieve .

It doesn’t matter what it takes,

It doesn’t matter how long it takes .

If you want it bad enough and set your mind to it you can and you most certainly will..

Tonight I won a jack Petchey award for my services to girlguiding did I expect this.. No never not in a million years. Do I deserve this? No I’m just simply me nothing more nothing less I am me.

Though I’m chuffed to pieces to prove them wrong again .

I do what I do out of love and passion nothing more nothing less

In November I began campaigning harder than ever to raise awareness of Sign Language, hearing loss, hearing impairment,deafness, Because there are barriers and in this day and age I do not feel like there should be. From sharing videos on Facebook of schools signing songs in assembly, to basic sign we need to be doing more a lot more !! we need to be including the deaf community! they are humans too!. I don’t want for much in life but here’s something I do want. I want to live in a world where we are inclusive of everyone regardless of disability.. It should be about fitting in and being accepted for who you are not any disabilities or medical conditions!!! We are not defined by our disabilities, we are humans not medical conditions and disabilities .Everyone should know sign and how to communicate with everyone. Videos like watching the primary school all signing to a song in assembly, because there is 1 deaf child in the school  this moves me and reduce me to tears. Why? Because never was my deafness accepted or acknowledged ever! Until I made it accepted  by going out there and  learning sign language off of my own back and out of my own pocket and joining the hands for voices choir .Two of the only places ever I’ve truly felt I belong and fit in and accepted for me and supported in achieving my all.

 

A few days after that I then decided to set up my next charity event- which was the Christmas donations for Panther Ward at Great Ormond Street Hospital to ensure that none of the children felt alone at Christmas or felt like Christmas was not going to be  a happy or special one. I began working around the clock to do everything I could to get as many donations as possible.

 

Whilst doing this I was still working very much full time plus overtime, doing choir rehearsal,sign language classes, signing clubs and deaf pubs/clubs..

 

ANDDDD CHOIR PERFORMANCES !!

 

I was so excited to begin performing with Hands for Voices and just hoped my hands would play ball and sign properly! I mean my first performance with the choir was no biggie. We only performed at Southend Football Club before match kick off in front of 6,000 People!!!!!!

Weirdly I did not feel nervous on the day and felt nothing but adrenaline and excitement to sign and to show the world what we got! I love H4V as we are so totally different from your typical choir, we do not sing at all , We fully sign the songs in BSL with one of a few aims:

  • To awareness of sign language and the importance of it
  • To bring music to the deaf community and to include everyone
  • To raise money for charity
  • To have fun and enjoy ourselves
  • To show off our love of sign

 

 

That first performance and being their biggest venue and audience to date was just something else.I was on absolute high for ages it was so incredible everyone in the audience singing and even signing along with us made it even more beautiful,magical and was just amazing, such an incredible opportunity.

 

Choir performances did not stop there we then went onto doing two weekends back to back performing at local Christmas light switch on one in the evening where it was bitterly bitterly cold  where I was right on the front row, that was a little scary but honestly I just love signing so I think my love and passion for sign just completely took over , and then one in the daytime again really cold but incredible to be up there signing!

 

You will have seen on my blog already but November was also a really special Month .After 8 years of being in contact with the Agnew family I finally got to meet Jennifer,Gordon and Rebekah in person and genuinely was a day I will never ever forget .They are the loveliest and most beautiful family. The connection and bond I have with them is unreal ,it’s literally as though I’ve known them forever and as though they’re really close family that I have always known and grown up with.Rebekah is so like the little sister I always wanted and dreamed of, yes I do have a little sister but she’s 21 so that doesn’t count she’s not little and cute, more on real biological sister later…It was everything I could have hoped and more .This is one of the reasons I love microtia because that’s what brought us together and connected us ,otherwise who is to say if we would have known each other otherwise..knowing the Agnew I now know I could never go through life not knowing them .There were so many emotions lots of cuddles and lots of tears.This was another reason for considering moving to Ireland so I could be nearer to them it was so tough letting them go.

November was also special because…I met a very special someone…I met David my now boyfriend/Partner and he has just been incredible from the word go supporting me through everything , being supportive of my medical conditions, supporting of my blog, supportive of my fundraising and charity work .Not once have I asked or expected him to take any of this on because he really doesn’t have to it’s my medical conditions , my health, my ideas but it means a lot that he has done this and been there through everything without even being asked.He genuinely is the sweetest, most caring,kind,understanding a supportive person I know and I really hope I can keep hold of this one .Already only being with him for a couple months he has changed my expectations and thoughts on men, and has proven to me not all men are idiots like the ones i’ve previously met and has beat anything they were capable of in a million years.. Hands down best one yet, this one is a keeper!!!

 

 

 

December saw my GOSH charity donations come to life as I went round Panther ward dressed as an elf giving out gifts to the children,families,doctors and nurses and handing over £222.67 towards parent accommodation – this would be enough to house a parent for up to 6 days to be near to their child .As well as catching up with Gaynor and Neil which was the absolute icing on the cake.All of this seems like a total dream still but honestly go read my blog about it if you haven’t already but genuinely one of my proudest achievements and moments getting to do that.

 

December also saw me perform again with Hands for voices firstly at the second of the two christmas light performances but also we performed alongside both The Big Sing and the Little Sing on the big sing christmas tour.We performed a few songs on our own then performed songs with the big sing and the little sing and was just incredible!!

 

 

Also within choir we worked on a Christmas charity video alongside other companies,and clubs within the local area which was a lot of fun too. Myself and David attending a deaf friendly music event where we saw Matt  Cardle and his band Seven Summers perform whilst my friend Emma , who runs Chatty Hands signing club interpreted their songs, it also saw me and David have dinner in an igloo which was so cosy and festive, apart from the bony fish!!, It also saw me and mum get matching tattoos of Dumbo and Mrs Jumbo , as she has always called me Dumbo ears since I had my ear reconstruction and I wanted something that represented us and connected us…Yes… I hear you asking… what about my sister… Well she actually did not spend Christmas with us and actually moved out on the 29th December, not telling us as to where and has had no further contact with us and wants nothing more to do with us and so has removed herself from the family, even apparently going as far as to have removed our surname. Yes we came into 2009 as a family of 4 and leave as a family of 3 but we are happy and getting on with life.

 

 

 

So yeahhhh a lot has changed in the past 10 years and I would say all for the better so far… I never in a million years expected to be where I am today with the blog, fundraising, my confidence and self acceptance getting there, I know it’s not there fully but it’s a heck of a lot better than it was 10 years ago when none of that was there and I feel I have found myself and my voice !! sorrryyy!!!

 

Now here’s to the next 10 years!!! Bring it on!! I already have so much I know I want to do and achieve in those next 10 years , so now to make them a reality!

 

Here are just some of my favourite and proudest moments over the past decade including photos from:

Serving at the queen’s Garden tea party

Taking 3 of my brownies independently to see the trooping of the colour parade

Gaining my jack Petchey award

Gaining my level 1 sign language award

Passing my driving test

Getting my first car

Celebrating my 18th

Celebrating my 21st

Celebrating mum an dad’s 50th birthdays

Hands for voices choir

Level 2 sign language

Articles

Giving a speech at the microtia UK charity launch party

Working as lead practitioner for under 2s at a montessori nursery where I ended up being a key holder and running the nursery with the manager an trying to take the company over with Sally

Full hearing for the first time when I had my baha, surgery and well the whole journey with baha really

And many many more

 

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Meeting The Agnew Family

Published January 25, 2020 by goshgurl95

I started my blog around 7 years ago now once I left college and was in a much happier,healthier and positive place after years of bullying and torment.

The reason for setting up my blog titled GOSHgurl95, was because it related to GOSH I was a girl and I was born in 1995.The purpose of the blog was to share my story and to share my experiences growing up different, as I was born with Microtia, Hemifacial Microsomia,a mild case of Goldenhar Syndrome and well I had grown up feeling alone, like nobody understood me and like there was nobody else out there like me .This was really isolating and difficult for me , especially so when faced with bullies ,stares and questions that I had no idea how to respond to, as I did not fully understand why I was different more so when I didn’t know the names of my conditions.

 

So the aim was to set my blog up to raise awareness of

  • the medical conditions firstly that I was born with,
  • other conditions that  developed or that were discovered years later
  • Great Ormond Street Hospital
  • The effects of bullying

As well as to continue to share my medical journey and story. Why?

Because I  didn’t want anyone else to feel alone growing up different or not knowing why they were different, I wanted to help .My aim of the blog was to help none of the blog was set up for my benefit, I mean I know my story and my journey so I don’t need to share it for my benefit However I felt if I could share my story and it helped one other person then I had done something to help and it was worth it.

 

all these  years later still I  like to hope that my blog is doing exactly that…

8 years ago I was contacted by a family living in Northern Ireland, The Agnew family.. Jennifer and Gordon Agnew, who had recently welcomed a beautiful baby girl Rebekah into the world.

Jennifer and Gordon had seen me on the Microtia UK support group and had reached out to me and emailed me as their beautiful newborn daughter Rebekah was born with bilateral Microtia

This meant everything to me that they had reached out and contacted me and I wanted to do everything I could to help them and so the emails began quickly going backwards and forwards between us.Jennifer and Gordon would often send me photos of Rebekah as well as up dates on how they were all doing and we remained in contact over email.

 

We became very close and had built up a lovely relationship ,Over the past 8 years we have tried on many occasions to meet up but either something has happened that hasn’t made it possible, or we’ve missed each other at Great Ormond Street by a matter of weeks to days..

As the years went on our relationship grew stronger and stronger ,However we still had not met.Jennifer and Gordon had told Rebekah about me and over the years showed her photos of me and my ear ,so she knew about me but more to the point knew there was someone else like her out there. However we had never met in person.

 

The 26th November 2019…. Yes you guessed it !!! we FINALLY MET!!! Rebekah had an appointment to see Mr Bulstrode at Great Ormond Street Hospital and flew in from Northern Ireland the afternoon before .The plan originally was for me to go up to see them the evening of the 25th when they landed in London and would be staying at Weston House patient accommodation across the road from GOSH and for me to go and see them there and get pizza, unfortunately this clashed with my sign language class, so I was unable to make it.

 

So instead I booked the 26th off of work and travelled up to see them after their appointment at GOSH, I couldn’t think a better meeting point. I could not believe the day was finally coming I was so excited I could not wait!

 

That has to of been the slowest train journey up to London I just could not get to London quick enough, especially so when I found out that their appointment had finished a lot earlier than planned.Once off the train  and tube I could not walk fast enough to GOSH.Texting and keeping in contact the whole time .

 

Jennifer sent me a text message of a photo to show me where they were sitting and how they were sitting waiting for me..I could not wait the tears were starting already…. I replied back and told them I was less than 10 minutes away.. The excitement on both parts was so unreal , this was a huge deal for all of us.

 

I walked up to those famous front doors of Great Ormond Street Hospital, fought back the tears and walked in ..I looked around and at first I couldn’t see them.. Then I saw them! Jennifer,Gordon and Rebekah waving at me…. I hurried over as quickly as I could and soon as there was a clear pathway there was no stopping me and Jen running to each other.

 

We quickly said hello and asked how each other were before Jennifer pulled me in for a huge hug and it’s safe to say we both got very emotional and tissues were definitely needed, we just stood there hugging holding each other , it felt as though the world stopped in that moment neither of us wanting to let go.

 

Good job my BAHA was out of action otherwise there would have been BAHA’s flying everywhere with my one and Rebekah’s two 🙂

We did of course let go and I then gave Gordon a hug and said hello to him before of course saying hello to Rebekah . We stood chatting for a bit before deciding we would be better off going to the Lagoon , which is Great Ormond Street Hospital’s restaurant and talking over lunch and coffee.

 

Jennifer and Gordon were extremely naughty and wouldn’t let me buy them or myself any lunch or coffees and wanted to pay for me which was very naughty but equally very kind of them.

 

We ate lunch and drank coffee chatting about Rebekah’s appointment, all things sign as Jennifer has also done level 1 sign language and I believe she is also part of a signing choir and has taught Rebekah sign language so us girls were talking all things sign, Gordon doesn’t know sign so Jennifer was saying it’s like hers and Rebekah’s secret language at home ,which is sooo cute as a girls best friend is always her mum so this is super cute.

It started getting a little on the noisy side in the Lagoon as it was around lunchtime that we met so we decided it would be a better idea to head over to Weston House so that Rebekah and myself could hear better and it would be that bit quieter in their common room.

 

Going into Weston House brought back so many memories, the last time I was there was before my first stage of ear reconstruction at 10 years old so 14 years ago and well it’s safe to say not much had changed in that time , it was just as I remembered it being.

 

It was so much quieter and a much better location for Rebekah and myself to hear and to be able to talk properly, Rebekah told all about how school was going, about learning piano, about her pet snail , school show.It was just amazing to spend quality time with the three of them sitting chatting about everything over the last 8 years, talking about my BAHA and the infections and what was happening with that.

 

Rebekah had the great idea of us all playing a board game , Dinosaur Snakes and Ladders which was a great laugh for all us , with the added challenge of who ever won got to go home to Ireland with Jennifer and the losing two had to stay behind.Well it was going really well for me to begin with and looked like I may be going to Ireland with Jennifer , whilst Rebekah and Gordon stayed here, However that soon changed as I ended up going down the snakes and ending up right back where I started, so it was then looking like Rebekah was going to Ireland and me and Gordon were staying here.

 

Rebekah made us all laugh by saying to her mum Jennifer “take your husband home with you” Jennifer asked Rebekah if that meant she was staying behind to which she said yes.Jennifer said how Rebekah would love that and began telling me all of Rebekah’s routine so we could begin our life together, In a heartbeat I would have Rebekah any day no question about it.

 

Unfortunately after the game had finished it was time for the Agnew family to gather their things and begin their journey back to Northern Ireland, the time just flew by , it went so crazy quick.As they say time flies when your having fun, it really did fly by.I went back as far as Kings Cross station with them, I just couldn’t bare to leave them and just had to squeeze in every last possible second I could with them,I mean who knew how long it  would be until we could see each other again.

 

It was the hardest thing ever saying bye to the Agnew’s and I feel as though it was very mutual a feeling me and Jennifer again could not stop hugging each other or let go of one another and again both of us got very emotional and fought the tears back,but the tears definitely escaped us, and well as for Rebekah ,wow tug at my heart strings much!! THE biggest cuddle ever from her and hearing Rebekah say “I don’t want go, I don’t want to leave you” was the hardest thing ever,I wish we were in the Movies where they didn’t have to go and it didn’t have to be a sad ending and I could leave with them or by some magic they could stay here.

I had got a few little gifts for Rebekah and handed these to her now, well again another huge cuddle that got both of us very emotional, when we did break out of our hug instantly we were back hugging again..It so so hard to finally go our separate ways .However I could not let Rebekah see me cry and some how I fought it and held it back until the very last second…The got on their tube and I went the opposite way to head back the way we had come from ,after figuring out where I was and not getting lost again.. I kept looking over my shoulder to ensure they got on their tube safely and to see them up until that last possible second, and spotted that Rebekah too was doing the same thing.

 

As soon as I could see them no more and was fully round the corner the tears did not stop not for a second,I got some very bizarre looks but it didn’t matter I had fallen head over heels in love with the Agnew family and well Rebekah became my little sister,yes I have one of those but not a little Rebekah sister so totally different.

 

All evening I was constantly checking my phone to see if I had any messages from them to know that they were safe and finally safely home..

 

This was genuinely one of my best moments this year getting to meet them, they are just such an incredible family and well there is no denying their is a clear bond there between us and we definitely both liked each other a lot.We of course are still very much in contact regularly messaging,sending photos and videos etc. The Agnew’s have said whenever their in London they will hit me up, and there is no doubt I’ll be there more than happy to meet them again and spend time with them.

 

So much so I was so tempted to move out to Northern Ireland and start a new life out there just to be nearer to them , they literally are like family.The love I have for them is unbreakable and I love them the way I love my family. I cannot wait to see them again who knows when that will be but still I’m ready and waiting, who knows I may just have to plan a trip in the new year to Northern Ireland 🙂

 

72214841_10215482597394850_1514427261233659904_nthis photo is so ,so special to me and well I like to thing my blog works as I met this gorgeous family through the blog and through Microtia UK so thank you Microtia UK for bringing us together, This is yet another reason why I wouldn’t change a thing about having Microtia, without Microtia we would never have met, so I thank you to god, to Microtia for bringing us together, I cannot be more thankful to have such a lovely  and very Family in my life.

 

Rebekah if you ever read this just know  even though your in Ireland and I’m here  I am and always here for you and  I am as much there for you as I am for your mum and dad and I will be there with the three of you through anything and everything don’t ever change Rebekah you have the best heart and personality , thank you for making my year it was a real pleasure to get to meet you and get to know you , Can’t wait to see you again ,love you xx

 

As the saying goes . The best things are worth waiting for xxx

Charity Christmas

Published January 24, 2020 by goshgurl95

In my last medical/hospital related blog (the blog before Meeting the Agnew Family) I mentioned how I had been discussing my next charity event with Ann and Rowena on my walk back to start my journey home from London after my Pre Op Assessment. However I left no spoilers on there :).

 

Now some of you may be clever and realise hey hold on a minute the title is  charity Christmas and Christmas has been and gone ,surely there must be a hint or a clue somewhere about this? well you would be right..Guilty I’ve fallen behind in keeping my blog up to date where I have been super busy with work and working overtime to compensate for going into hospital in the new year, sign language, choir, this charity campaign and just life getting in the way really .That It’s only now I’ve found the five minutes,well two weeks really  to sit and update my blog.

So yes those of you that follow my facebook page will have already seen this and know all about this…

 

Those of you who only follow the blog won’t know and so those of you that do  will pretend now that you have no idea what I’m on about and that this is the first time you know about any of this and it will all come as a total surprise to you…

 

Whilst walking home from shopping in town early November to get a few bits and pieces that I needed and a couple of children’s Christmas story books for hampers we were making as raffle prizes for our signing choir show .I thought to myself how I might go back later that week or the following week and pick up a few more as they were doing an offer any 10 children’s books for £10 and all of the  children’s Christmas stories were on this offer and there was just so many there to choose from.

 

I then thought but hold on I don’t know of any young children I can buy these books for as Christmas presents.I would buy some for work but they will just get destroyed and  ruined and  I just didn’t feel they would be appreciated.

 

I remembered a statistic that I had heard whilst studying childcare that most children do not see their first book until the age of 6 in a school classroom .This has always deeply upset me .

From a young age I have always loved books ,and loved reading .I always remember from a very young age my parents reading me a story before bed , it’s just always upset me to think that this is actually in the minority and not many children get this experience with books  until school age , in a school classroom.This genuinely saddens me I couldn’t picture life without books or not knowing what a book was or is.

 

Then it hit me ..

I knew what I would do..

I decided I would be going back to buy some more books and decided I would donate them to Peter Pan Ward at Great Ormond Street Hospital, to the children that would be spending the Christmas period in hospital.

why?

For years now I have wanted to do a Christmas donation of gifts to Peter Pan ward and I either just haven’t got round to it, run out of time or have been stuck as to what to do or how to go about it.

So I decided this year was THE year I would do exactly that.

 

I went and got 10 books and set myself the goal of filling one small storage box full of books  and that I would then get the train up to London on 24th December 2019..Christmas Eve and donate them.

I shared my idea on my personal Facebook page (not the one linked with my blog) , shared it on a few community pages with the idea of making not only my friends ,family ,work colleagues ,sign language and choir friends know about my idea but also my local community to see if anyone would be able to help me with my goal .I know for us as a family when I was little  my parents would clear out toys and gifts from earlier in the year to make room for the new toys that I got at Christmas.

I sent it out around various Facebook pages with this message:

 

Hey everyone, from the age of 4 months old I was under the care of Great Ormond Street Hospital and was until I was 21 years old.. I’ve always done fundraisers and charity events and of course my blog to raise awareness and funds for them to give back to them for everything they have done for me as I truly have no words to describe the care I received so much so they have become my second family and even to this day I still hold them very dear to me and are no words to describe how incredible they are .
Now this Christmas something I would love to do is to give back to great Ormond street, and give to the children who will be spending their Christmas in hospital and would love to donate Christmas activities, story books, puzzles and games to Peter Pan ward, the ward I was always on and give some Christmas cheer to those who may not get to spend Christmas at home with family and loved ones as a child should be able to .I was always fortunate enough to not need to stay in hospital over Christmas,However there are children who won’t be well enough to spend Christmas at home, now I know GOSH will take fantastic care of them and they’ll be in the best possible hands, however I cannot bare the thought of a child being away from home feeling like Christmas won’t be a happy,magical or special time more to the point I do not want a child feeling alone or forgotten about at Christmas,especially when knowing their friends will be at home with family ,opening presents,having fun.

 If anyone has any of the following and would love to help me this would be greatly appreciated and I would be happy to come and collect from you

Christmas stories/books for children of all ages up to 18

Books for children and teens

Baby toys, books, games

Toddler toys, games, books

Games

Puzzles

Board games

Christmas craft

Pens

Pencils

colouring books

sticker books

activity books

Art and craft

Stickers

DVDs

CDs

Christmas activities

Teenage items

Dressing up

Sensory toys

 

Anything else you think a child or teen  in hospital would be interested in or like

Last date for donations is the 18th December as I will be going up to great Ormond street hospital on the 19th
Please note for GOSH to accept them they must be new and sealed due to infection control
Thank you xxx

I did not expect to get any response from this whatsoever, but what actually followed stunned and shocked me to the point of   being a blubbering wreck, totally gobsmacked and speechless- I know me speechless!! Never!! but oh you better believe it because I sure was , it’s not often that happens!

Well that post went absolutely bananas on social media  with messages flooding in from other families who have used Great Ormond Street Hospital wishing me the best of luck and seconding everything I had said about the care  and love provided by GOSH, others offering to help in anyway possible , offers of donations coming in left, right and centre, offers to  DJ for events in the future , people offering to collect things in their area and so much more.

It totally blew up crazy style.

Within a matter of hours that storage box was done and filled and I’d started on a large reusable shopping bag, again in no time at all this was done and filled..

onto another..

 

And Another…

…what was happening?!

this was madness….

brilliant but mad..

 

My post got shared, shared again and then shared some more and was everywhere on my Facebook timeline. This meant so much to me to  see this and all the offers of help popping up left,right and centre I just couldn’t believe it.

I was on cloud 9 and honestly thought I was dreaming and I’d wake up and this whole thing would have been a dream, yet every morning I woke up to even more offers of donations and help.

 

I had families contact me to say how fortunate they felt that their children had never been unwell or needed the support of GOSH or any other children’s hospital  and wanted to help me with my campaign ,but felt they did not know what a child these days would like and also not knowing what I already had which by this point was quite a bit ,so they asked if I had thought about setting up a gofund me page so people could donate money.

This had not crossed my mind I had never thought to post asking for money.I had felt cheeky enough putting my post up to ask for donations until I thought well with it coming up to Christmas ,most families, well I know mine at least when I was younger would clear out old toys that I no longer wanted, used or played with to make room for new ones .

I just thought well every little helps if anyone had anything going spare how much that would not only mean to me but also to a child spending their Christmas in hospital.

 

The family that asked me about setting up a go fund me was the first person throughout this whole idea that genuinely made me cry (it doesn’t take much now in my old age) as not only did it touch me that they wanted to do something to help and trusted me with their hard earned cash and trusted me to be able to pick the best gifts to give but instead of giving £10 or £20 like I was imagining  they  donated £100 towards the campaign.

 

This touched me for so many reasons I was so stunned and shocked by the generosity and literally cried and pinched myself .wow was the only word I could find. I was so so shocked and touched it meant a Huge amount to me let alone what a difference this could and would make to Great Ormond Street…

 

The tears did not end there ,I had another family whose daughter spent her 1st Christmas in GOSH and who is still under their care who were just genuinely such a lovely family that I’m sure I stood there chatting to them for over 20 minutes on their doorstep ,they  donated so many lovely gifts including a brand new and boxed finding dory scooter,books,games,toys literally so much stuff and again I cried like an absolute doughnut driving back to mine ,with their journey that they have been on and again by their generosity.I went home to add them on Facebook and i am still in contact with them they’re genuinely such a lovely lovely family.

 

I received so many lovely donations from books, board games,jigsaw puzzles, arts and crafts, DVDs, remote control cars, doctors kits, dressing up costumes, Barbie dolls ,Barbie car, Disney princess dolls, even and Alexa Echo Dot  .

 

No word of a lie the donations took over one half of my bedroom and there was very little room for me to move , let alone get into bed but as much as usually that would have driven me bonkers I couldn’t help but pinch myself every time I came into my bedroom to see my room bursting at the seams with all these lovely donations and knowing that I would be putting a smile on the children’s faces.

 

I received so many lovely donations that my idea of going alone by train was very quickly out of the window, even me driving my car up to GOSH was out the window as my car is only teeny tiny and would no way hold all of the donations .

 

I was stumped for a while as to how I would possibly get it all up to the hospital.

 

However my boyfriend David stepped in to save the day and offered up his car a BMW estate car so a lot bigger than my teeny tiny Seat Mii.

 

We had to change the donation date to an earlier date and arranged to take everything up on the 19th December 2019 as this was not only more convenient for us with traffic and  for me still working  but also for GOSH .

 

Some how my local newspaper had caught wind of my Christmas donations appeal which I had titled a charity Christmas  Magic .

 

The local paper had messaged me asking if they could have more information about my campaign and whether they could write up a story to make the local community aware of my campaign  and to see if they could secure some more donations  too.

 

Although I already by this point had a lot of donations I was not about to turn any extra donations or help down ,and of course accepted.

 

However the only issue with doing the article was that  they could not get hold of me as I was constantly either at work ,sorting out drop offs of donations , answering my front door to more donations arriving , out and about collecting donations, driving here there or somewhere relating to the donations . I kept missing their calls and when I rung back I kept missing them.

In the end we both decided we still very much wanted this article to go ahead and came to the agreement that we would liaise over Facebook messenger, so that way they could ask me all the questions they wanted to know and I could then reply when I had a spare few minutes, this went backwards and forwards for a while with lots of information being passed across and lots of questions being asked, so to make the article as detailed and correct as possible.

A week later the finished article was fresh off the press and hit the local supermarkets and newsagents   .My photo and a short snippet of the  story  had even made it onto the front cover of the paper too .

To say I was overwhelmed by this would be a HUGE understatement!

Here she is :

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This only made the donations  flood in even more so than they had been originally been , not that I thought that was even possible.

In honesty I was shocked the paper had picked up on the story and I hadn’t expected to get any response from the article so this was a HUGE shock to see it being shared all over Facebook and receiving so many more lovely and touching messages from the local community and incredible support offered ,let alone even more donations .

I haven’t scanned the article  in but if anyone wants to read the full thing then please shout , if not you can read some of the article online here : https://www.braintreeandwithamtimes.co.uk/news/18054556.former-gosh-patient-aiming-bring-christmas-cheer-sick-children-ambitious-campaign/

 

Due to the volume of gifts received I had to email Great Ormond Street to let them know of my plans as well as of course to liaise with them with regards to the dates that would be possible for me to go up to do it .

 

Even more so when I had 11 large boxes full to the brim with gifts I felt they needed prior warning to expect A LOT of donations ,I mean at this point I was still getting donations turning up or going out to collect donations with no views of it slowing down, which was incredible.

 

I was able to find an email address for Neil Bulstrode, those of you who follow my blog or story will know how very much Neil means to me and well it’s safe to say he as always was fantastic in helping arrange everything ,putting me in contact with the ward manager Neil Mccintosh , forwarding all my emails across to him  and liaising with him about me and the campaign .Even down to trying to arrange not only for himself but Gaynor my favourite nurse to be there, Brigitte one of the other Microtia Nurses to attend ,as well also trying to organise for one of the hospital charity photographers to come down to photograph it.

 

This is another reason why the blog has been very quiet as I was literally non stop busy with messages of help,support  and donations, people turning up all day everyday at all hours of the day with donations, driving here there and everywhere collecting donations , even up until 10.30pm the night before I was still running around like a headless chicken trying to collect in all the final donations .

 

I didn’t get home from the last collection until around 11/11.30pm and even then the work was not done checking over everything to ensure it was in good enough condition and good enough quality.

Believe me this was very much needed .Someone donated a colouring book ,but every picture had been coloured in,story books with pages missing etc so everything was checked, double checked, and even triple checked to ensure it was in good enough condition and use to actually donate and then was  sorted  into allocated boxes arts and craft, baby toys, books,DVDs, dressing up, cars, dolls, puzzles, games, etc everything had a box.

 

As well as sorting it all into boxes and checking it all over …

The next part which became problematic and a bit of an  issue ….loading it up into my boyfriends car…

 

Final count …… 12…. YES……. TWELVE large boxes full to the brim !!

12 boxes coming down the stairs from my bedroom into the lounge and very literally taking over the lounge was chaos and  the first battle .Trying to navigate our way down the stairs ,adjusting and readjusting weight of boxes..

Then  getting it out of  the lounge into our small porch and out the front door sounds simple …

 

Ohhh it wasn’t .

What should have  then been the easy part putting it into the  car…. No this was not easy and took a lot of packing, unpacking, repacking, unpacking again between myself ,my boyfriend and  by now also my dad who was involved in the process trying to find a way of getting it all to fit in the car .To the point the car was full to the brim and we still had boxes sitting in the lounge.

 

It got to a point that both my dad and boyfriend did not think it was all going to fit and some would have to be left behind. I was gutted as I did not want anything to get left behind and also how could I possibly make that choice of what stayed and what went?!

 

This was friends,family and the local communities hard work and  donations I could not possibly have been put in the position of picking and choosing .

 

Thankfully I did not have to pick or choose as everything ended up fitting… with A LOT of packing, unpacking ,boxing and un-boxing but hey we got there ,we did it !

It took us until 1 am ,but still , we had done it!! It all  fitted!

It was in !

Now to get a couple of hours sleep before waking up and heading off for London as David was getting to me for 5:30 am so that we could beat the traffic and drive very slowly up to London as he hadn’t driven to London before and was worried about the drive ,more to the point  because he could not see out of his back window or passenger windows where we had all of the boxes of gifts piled up..I actually kind of wish now I had taken a photo of the car as it was absolutely packed!

 

It’s safe to say I did not sleep a wink .I was just so excited to get the donations to London , for this to finally be real after weeks of collecting all of the donations and gifts most of which were donations however a large portion did come out of my money too I lost count how much money I spent but that didn’t and still does not matter .The important part is the genorisity of friends,family and the local community who clubbed together to help me.

 

I was too excited to sleep , the thought of seeing the children’s faces, seeing some of the incredible team that cared for me for so many years again, just generally going back to Great Ormond Street . I also was so worried  about one of two things

  1. I would go to sleep and wake up and it would have been a dream and none of this would actually be true ,or of happened

or

    2.  That I would over sleep and miss the whole thing

 

Of course I knew it was real and there was no way I would oversleep or miss it .I mean for one I was far to excited to sleep, like a child at Christmas so I knew I would keep waking to check the time to see if it was time to get up, I had set about a million alarms, and also my boyfriend David would be arriving at mine for 5:30 am and there would be no way he would let me sleep in either.

 

This was the last post I put up on my Facebook page (this time the one linked with my blog rather than personal) before trying to get some sleep:

 

This plus this
Can, only mean one thing…. Its great Ormond street hospital donation day!! 12 large boxes and a Scooter here I come!! So so overwhelmed at how generous family, friends and the local community have been I cannot thank everyone enough for this, it means a huge amount more than many will ever know or understand so from the bottom of my heart thank you xxx

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Just under 4 hours later after posting this my first alarm went off, but in all honesty it didn’t need to go off.

I was already awake despite not getting to bed until gone 2.30am by the time the car was loaded, I’d posted this status on Facebook and answered a few messages that had come in from families and the local community  who had contributed donations .

 

Finally after what felt like the longest night it was 5.30am and time to leave home and head to London, It was a shock to see how packed the car was there was literally no room in the back of the car with the back seats down and I even had things by my feet and on my lap too!!

Honestly the journey was so quick compared to what it could have been or usually would be and we were at Great Ormond Street Hospital just before 7 am , which brought back memories of surgery days, where I would have either of made the early morning drive up or have stayed across the road in Weston House and be admitted to the ward by 7.

We  were kind of at a loss as to what to do , as we were not due to be going to the ward until 10am.

We had debated going for breakfast somewhere first, However I  did not want to leave the car unattended with all of the donations .We had made it this far with them  and all were still intact . I was not about to risk the car being broken into and all of the gifts being taken or well anything happening to them really.

 

We found somewhere to park up and I  messaged Brigitte as she follows my blog and also emailed Neil Mccintosh the ward manager and asked where would be best to park and to see if when we did go up to the ward at 10 if there would be anyway of getting some help getting everything into the hospital.

There was no way it would be possible for myself and my boyfriend to get it all in ourselves. I mean we could have taken a box at a time up in the lift  but  this would be too time consuming as one of us would have to remain with the car and the boxes of gifts that were still in the car, whilst the other would be backwards and forwards taking boxes in  .We also felt this may cause a lot of disruption to the ward in terms of to staff keep letting us in , and more importantly to the children and families staying on the ward.

 

Neil Mccintosh was great in helping advise where would be best to park and even suggested we park opposite the hospital and said he would come and help us get it all unloaded and up onto the ward. We politely accepted and well his face said it all when he saw the car absolutely rammed full of gifts.

 

I think he realised in that moment I was not joking or exaggerating when I said we had 12 large boxes of donations.Neil was able to go and grab a hospital bed and leave it in the  hospital entrance and between the three of us we began unloading the boxes and carrying them into the hospital and loading them onto the hospital bed,Neil then spotted one of the student nurses coming in to start her shift and roped her into helping so she stood in the reception with the hospital bed , one of us stood with the car and the other two of us were backwards and forwards with the boxes of gifts.

 

There were so many boxes that the hospital bed was quite literally piled high with boxes of gifts . Neil Mccintosh and his student nurse took the hospital bed up to the ward whilst myself and my boyfriend waited in the hospital reception with the boxes and gifts that did not fit onto the bed .

 

Whilst waiting we took this photo of the hospital bed with all the boxes of gifts , as it was just so surreal to see and the first time any of this felt real:

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About 15-20 minutes later Neil Mccintosh returned having unloaded the hospital bed full of gifts and took the remaining couple boxes of  gifts up to the ward , whilst myself and my boyfriend went and moved the car before heading up to the ward where we had been invited to go and grab a drink.

It was only in this time that I noticed Brigitte had messaged me back offering both herself and Gaynor to help us transport everything into the hospital.I most definitely would have done this if I’d of seen this , just purely to get that bit of extra time with my favourite nurse really :).

Myself and David returned to GOSH  a few minutes later and I took a couple of quick photos outside the hospital to update my Facebook to prove I really was doing this and I hadn’t just made off with people’s donations. I had also been messaged by my local paper asking for photos as they wanted to do a follow up story after so needed some photos for them too as I wasn’t sure if I would be allowed to take any photos later on , on the ward etc.

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We both then headed up to Panther Ward and were buzzed straight through and explained why we were there and all of the nurses were chatting about all of the gifts ,asking what? was it you that brought them all in and were genuinely so thankful for all of the gifts and asked lots of questions about it and whether there had been a team of us come up with the idea.

 

Nope just little old me, who then roped her boyfriend into helping collect gifts as well as transporting it all up to the hospital.I mean he did have five weeks off work for Christmas, I couldn’t have him sitting around doing nothing getting bored now could I ;). note I would have done it all myself if it was physically possible, but unlike my boyfriend who had five weeks off I was still currently working full time and overtime leading up to Christmas so would have been unable to do it all myself.

 

I was  asked if I had seen all of the gifts fully laid out which I hadn’t , on many occasions I had planned and wanted to do exactly that but had never actually got around to unboxing it all and laying it all out ,so  I had only seen it all  boxed up in my bedroom, the lounge and of course in the car too, as well as on the hospital bed photographed earlier on  .I  was   invited to go to Panther Ward’s sensory room  and view “santa’s grotto” as it had now been renamed which was full of the donations all laid out :

 

80691128_10215658918882777_8486474237203185664_nJust a couple of gifts…

There was  actually more but from this angle of the photo it  can’t be seen .

There were no words and I don’t think anything could have quite prepared me for seeing this it was beyond anything I could imagine and again like  I was in a dream world.

Even now looking at the photo it feels like an absolute dream and does not feel real in the slightest.

 

I was absolutely stunned and speechless , I could not believe what I was seeing surely Not?!!

 

I was then given a tour around the new state of the art ward, and told what was Peter Pan ward did still exist but is scheduled to be knocked down in the next few years and how Panther ward has replaced it but staff still refer to it as Peter Pan ward and are often caught calling it Peter Panther ward..

 

To me it will always be Peter Pan ward it just cannot be anything other than in my eyes …sorry Panther…. it’s peter pan all the way!

 

After we went and sat in the family kitchen on the ward and made a hot drink whilst staff had their morning hand over and morning meeting. I was absolutely stunned none of this today had felt real ,I just couldn’t help but pinch myself and even then I couldn’t understand why I was not waking up from this dream.. Just crazy. I was utterly shocked with how generous everyone had been in contributing to this. Whilst we sat in the kitchen with a coffee we got talking to a couple of relatives of children staying on the ward or on the ward next door .Neil Mccintosh then put his head round the door and said “Neil’s just phoned he’s coming down to see you He’ll be here in five” well the excitement this caused me . This was music to my ears! I couldn’t wait too see him!!

 

Anyone who reads my blogs will know how much Neil Bulstrode means to me and how very special to me he is, I knew the chances of him being able to come to see me whilst here was not very likely as Neil had clinic at 9am but I also knew he would do everything he could to come and see me and well he has never let me down before and he certainly didn’t then either ! He had managed to find time before his clinic to come up and see me and oh wow was it a reunion..

 

I was sitting drinking my coffee in the kitchen area when I saw him walk past and instantly got excited and turned to David saying ” he’s here, Neil’s here and just getting so excited it kind of made the whole thing feel real with Neil Bulstrode being there.

Anyway he disappeared for a few minutes before coming into the room and absolutely grinning and putting his arms out for a hug.. well there was no telling me twice I was straight up and over there ! We got chatting with me this time around not being a shy teenager and now somehow being an adult, how that’s happened I’ve no idea and don’t even want to think about the fact I’m all most half way to 50 on my next birthday !!

It was so lovely catching up with Neil , Neil said how he had just been shown Santa’s grotto and how amazed he was at me organising it all and doing the whole thing. We then went together and looked at all of the donations piled up in what was their sensory room now turned Santa’s grotto and  went to take some photos in amongst it all when another very familiar face came along… Gaynor!!! Gaynor had also come up and if seeing Neil wasn’t enough this was like double cherry on top with sprinkles too .It had been so long since I last saw Gaynor and it was so lovely to see her again , nothing had changed whatsoever still the same favourite nurse I knew and fell in love with all those years ago!

 

Gaynor  joined us for photos along side Neil Bulstrode, Neil Mccintosh and Brigitte Harrison one of the other Microtia Nurses who although I didn’t know her when I was a patient at GOSH i’ve come to know as she follows my blog and facebook page and regularly gives updates to Gaynor about what I’m up to so it was lovely to finally meet Brigitte in person too.

80726651_10215658919202785_7197305091383099392_nAfter making a path through the gifts and all navigating our way into the middle of the gifts.With a lot of support from Neil Bulstrode helping myself and Gaynor up , there was no way I could’ve got myself up there with my dyspraxia if it hadn’t of been for Neil holding onto my arm the whole time.

I got chatting again to Neil briefly before he had to head off to begin his morning clinics and again got chatting to Gaynor catching up on everything I’ve been up to since I last saw her discussing my blog, sign language, signing choir, charity events, talking about the family , goals for the future etc. Gaynor asked if I had considered a career in nursing or working for GOSH.

I told Gaynor how I would love nothing more than to be part of the team looking after the children and families and being able to relate to them with everything they’re going through and how it would be an absolute dream and an honour to be able to work alongside the phenomenal team looking after me ,including Gaynor ,Brigitte and of course Neil Bulstrode. However a lovely an idea this would be , how I felt this could only be a dream as there is no way I would be able to do the job.

 

As much as I love children , want to now always be working in career in care and or helping people, I love children, I love GOSH,  I love medicine like literally at work I love doing the medications, I’ve always loved doing first aid at Brownies and Guide camp, I just don’t have the mathematical skills to be able to do it, with being Mathematically dyslexic (Dyscalculia) I just would not be able to work out BMI, Height,Weight and then work out the correct dosage of medication to administer ,especially so in an emergency situation.I also am not the brightest bulb in the box so there would be no way I would be anywhere near clever enough , especially so working alongside the best of the best.I just wouldn’t want to get it wrong and mess up as this is people’s lives I would say children but of course it includes their families too and also I would not want to get it wrong and mess up and let the phenomenal team at GOSH down either.

 

Gaynor told me how I am clever and there must be a brain in there somewhere, I’m still not convinced that there is but it was kind of Gaynor to think there is ..I joked how it must be way down buried in my toes and must be the size of a pea! Gaynor also told me how there are apprenticeships based on the ward as Health Care Assistant (HCA) which is a role below nurse where you support and assist the nurses and how there is also apprenticeships in Nursing starting from September.I wanted to know all this of course but also really didn’t as David joked but very truthfully said not to tell me that I would be there in a heartbeat ,very true I so would.

 

I stayed chatting to Gaynor and Brigitte about everything and anything really up until they both had to return to their ward Magpie and begin their outpatient clinics .Before Gaynor left she quickly ran back to tell me how I was her favourite patient ever , clearly knowing from my blogs how I always have referred to her and always will do as my favourite Nurse .Those are words I will treasure forever , always lovely to know that both Neil,Gaynor and Brigitte read my blogs and follow what I’m up to even now, Noted I will always be on best behaviour on my blog and social media more so now 😉

 

Myself and David then went to grab a quick drink whilst waiting for one of the trust photographers to hopefully come and join us, as the team had not actually heard any confirmation from them as to whether or not they would be coming but had asked them to join us at 10  .It was nice to grab a quick drink as we hadn’t managed to have our first one which of course I didn’t mind in the slightest as it meant seeing Neil Bulstrode and Gaynor and I would not have missed that for the world.

After our drinks Neil Mccintosh had still not heard from the trust as to whether a photographer was coming or not so whilst continuing to wait to see if they would turn up or not   I went and gave out sweets and chocolates that I had bought for the nurses on the ward as a thank you for the years of care and support given , and also as a little something for them working over the Christmas period and got asked to pose for some photos handing them out and I feel like some of this was possibly filmed too , I know some of the conversations with Neil and Gaynor were but I don’t have this footage and I’m not sure what else got recorded or photographed on staff phones.

 

80846493_10215658922562869_5223142035409600512_nThere was a lot more chocolate than this ,I don’t know why I didn’t pick it all up ,but anyway yes there was a large cadbury hamper containing tubs of Roses,Quality street, boxes of sweets and chocolates, selection boxes of chocolates, amongst other sweets and chocolate and also a large box of biscuits.

 

The nurse in the blue uniform (sorry can’t think of your name) was actually also one of the nurses that looked after me whilst I was on Peter Pan ward as a patient after some of my surgeries! So this was lovely to discover and get chatting to her as well as all of the nurses and some of the doctors too , all of which were very welcoming and friendly throughout the day.

 

After handing out the sweets,chocolate and biscuits to the doctors and nurses and having a chat with them about how this whole thing all came about from starting as an idea up to being here today and chatting about life since GOSH, there was still no sign of the trust photographer coming  and the children staying on the ward were slowly beginning to wake.

 

I was then invited to go round and not only go and meet the families but to be able to chat with them too BUT I was also invited to go round to the children and hand out some of the gifts to the children.I was absolutely honoured to do this.

 

I hadn’t really known what to expect or how the ward would want to do things ,whether they would want me to simply turn up and drop the gifts off take a few photos like I had and then go and for them to give the gifts out to the children and families today or if they would hold them back until nearer to christmas, or if I would get to hand some out , or how they wanted to run things as obviously not all children or families would be up to visitors for health and or other reasons.

 

I was absolutely delighted to get to meet some of the families and hand out gifts.The first patient I got to meet was a beautiful 4 month old little girl called Callie and her parents.They were such a lovely family and Callie had such a cheeky character and personality really watching everything going on.It was lovely to be given the opportunity to chat with her parents about why I was at the hospital and why I had donated the gifts before inviting them into Santa’s grotto and choosing some gifts to give to her which I gave her some bubbles, a talking iggle piggle teddy, a  Christmas book , a peppa pig book and an Interactive Vtech  console controller that teaches sounds and colours , along with some puzzle books for mum and dad too.It was lovely talking about Callie and why she was a patient and why she was in the hospital and talking all things drains and medical .Honestly they were such a lovely family and I am so so glad I got to meet them.They were also lovely enough to allow me to take photos with them and  Callie and for me to share them on my blog with you all , so if your reading this thank you again !

79867526_10215658919522793_4096491196484943872_nAs you can see Callie is loving the toys and gifts and could not wait to get into them and play with them 🙂 she was definitely a real cutie and stole my heart!

 

I was then invited to go round and visit other patients that were well enough and feeling up to a visit such as a 4 year old boy Jack who was superhero mad and so I gave him an avengers puzzle ,avengers activity box containing colouring book, stickers, avengers themed stationary set activity book .I also gave him bubbles and other superhero themed gifts, which he absolutely loved and his mum was taken aback by and asked me lots about my time at GOSH and how I had found it .

 

I also met a lovely little girl who was 3 years old and was waiting for her daddy to come and visit her also and was quite clearly missing daddy having to be between work, home with her older brother and spending time with her but she was so sweet too and knew sign language so I signed to her and her face absolutely lit up and she said “mummy look she signs!” and was so excited that I could sign and was signing to her .Again I explained to her and her mum why I was there and why I had donated the gifts and gave her some peppa pig books as I had been told before hand how much she loved Peppa pig as well as giving her one of those musical TV’s again this a peppa pig one and some bubbles and she was so excited by these gifts and immediently asked her mum to read her one of the Peppa pig books and wanted to play with her musical TV..Thankfully David was on hand to help in getting all those annoying wires and packaging off so that she could play with it.

 

I also met another little boy who was 3 and again was such a lovely little boy to meet and his family were really appreciative of me giving up my time to organise the whole thing as well as to go round and give out gifts and I was able to give him a large car mat and cars ,a remote control car and bubbles along with a christmas story book (you’ll notice a theme here with books)

 

I also met a beautiful 2 month old girl who was quite poorly so it was a quick visit but her dad was really appreciative of me popping in to say hello and to drop a few gifts off to her again I gave books for dad to read to her ,bubbles because what child doesn’t love bubbles and I feel it can always be a good distraction technique for young children if the doctors or nurses need to do anything to young children.

 

I met a 6 week!! yes 6 week old baby girl!! Oh my she was so teeny tiny!! and was again rather poorly but it was lovely again to talk to her parents about why I was here, my expirences at GOSH and to donate some toys for when she was little bigger such as a walk along dinosaur, water toys, again books and bubbles and they were willing for me to take a photo and to share it :

79690766_10215658920402815_852933127201357824_nI was so honoured to meet so many lovely children and their families all apart from one were really appreciative of the gifts and me doing all of this off my own back.I was asked a few times if I was part of a charity or if I’d been sponsored to do this.Nope neither.Just little old me nothing to do with any organisation or charity or any sponsorship, purely just little old me a former patient giving back is all , nothing more nothing less.

 

I did not expect to meet as many families or children as I was able to .I literally personally handed out gifts to every child that was on the ward at that time. The rest of the gifts were kept aside for other children and families that were due to be admitted later that day or the coming days.

I felt so humbled to be able to give out all of the gifts that I did and to be given the opportunity to stand on the otherside and give out gifts as opposed to being the patient and see things from other views and just how welcoming everybody was from nurses,doctors, students, cleaners, the families and children.It was truly a magical moment that will forever stay with me ,there are no words to sum up how grateful I felt to be able to do this for them.

 

A lot of people have since asked me how it feels to have done “something so big” “so generous” but honestly to me it doesn’t feel like I’ve done anything big, grand ,generous or inspiring at all .I’m just simply doing me and giving back to a place I called home for so many years (1995-2016) so near enough 21 years of my life, there never been nor will there every be words to describe how much GOSH means to me both then and now , nor sums up the love,compassion and care ever.

 

Once I had finished handing out gifts and chatting to the families,children, and nurses it was time to leave the ward and let everyone get on with their day.On leaving the ward to make a few pit stops before actually leaving the hospital.I bumped into Callie and her family again and got chatting to them again and Callie’s dad said to me how this morning was only just sinking in for him and asked again what they were supposed to do with the gifts like were they theirs to keep or for the ward, I explained no the gifts are for Callie to keep and to go home with you he was so overwhelmed and shocked by this. Asking are you sure we can keep these things, yes very sure and explained how they deserved to have a lovely christmas despite possibly spending it in GOSH, as they were currently unsure as to when Callie would be going home as she had recently had surgery .

 

Once we left the ward there were two pit stops I had to make .I couldn’t possibly leave without going to find Neil Bulstrode and Gaynor again and giving them both a little something and seeing them again before going, as who knows when I would next get to see them again, plus I also wanted to go and get some more photos with them, this time on an individual basis and try to recreate some photos from my time in GOSH.

 

As myself and David were waiting for the lift to head to reception to find out where Neil Bulstrode’s clinic was being held and whether it was possible to see him again before leaving, who would purely by chance be getting out of the lift ?!

 

None other than Neil Bulstrode himself! good timing or what ! It was as though he knew I was heading off to look for him ,Neil asked where we were headed and so I explained how I was actually on my way to go find him and asked if we could get a picture together, As I had now returned to full elf… I had put the elf costume on as I hadn’t expect this level of gifts and had said about dressing as an elf mucking about and then my dad and David being deadly serious had said how I should do it..I’d travelled up in most of the outfit minus hat ,shoes and the apron and had put it on for the initial photos outside and then got too nervous to actually go through with wearing it… that was until David had told a few of the nurses including Gaynor that I had a full on elf outfit with me and was talked into putting it on (Definitely best decision)

 

Anyway yes so I got talking briefly to Neil about how everything had gone on the ward in giving the gifts out and asked what I thought about the new ward .Neil also told me how I made a great elf and I should’ve had it on first thing this morning ,Yes I defintely looking back wish I had but never mind the staff and children still got to see me as an elf and some of the children even believed I was a real elf from the north pole , which was super cute.Neil told me how amazing he thought the whole thing had been and how proud he was of me for doing it all and told me I’m inspiring (I’m defintely not, I’m just me Bethan Harvey) that’s all I do not see myself as inspiring or amazing or anything at all ,genuinely do not see it whatsoever.

 

before taking these photos:

80562762_10215658921802850_1667146832171499520_n80193134_10215658922202860_1465452530841419776_n

 

Neil has defintely not changed in the slightest from our first photo together after my ear reconstruction. We had tried to recreate that photo which I will post below but I don’t think it would have been possible without some Iodine and some crazy hair on my part 🙂

305383_155048141259208_1867773657_n

Not much of a difference hey! I gave Neil some chocolates and said how I will forever be in his debt there are no words to describe how much he means to me or how thankful I am for everything he did for me as a patient and continues to do now into early adulthood, he’s always still there at the end of an email and always on hand to offer support and encouragement, I literally genuinely do not know where I would be without Neil ,such an incredible man and I owe him a lot .

I really do mean that he has seen me from such a young and I guessed really watched me grow, been there through the hard times with the bullying and wanting to end my life to the better times like now where I’ve reached a happy point and am being myself fully for the first time and trying to give back and make a difference. Neil Bulstrode is defintely one of my biggest supporters and is always there cheering me on throughout anything I do for charity, for GOSH, my blog – he was actually one of the first that knew about my blog and one of the first to read it and support it. Just everything I genuinely would not be where I am today without his support,encouragment,love and care .Neil is defintely one of my biggest inspirations and role models and I truly believe this is what got me through a lot of the harder times at school and why my confidence has grown and the self esteem ,well it’s getting there slowly but hey I’m getting there!

Even now Neil still continues to amaze me with the incredible work he does and to aspire to the best I can with anything and everything and I think part of why I do what I do is because of Neil and knowing he is there every step of the way.There are no words that will ever be able to thank Neil for everything he’s done how do you honestly thank someone who has transformed your life and been such a big part of your life? I will never ever be able to thank or repay Neil for everything definitely the best of the best.You do not get anyone better than Neil Bulstrode and there is nobody I trust more to operate on me ,even now Neil trumps all other doctors and surgeons hands down Neil would win a million times over, no competition at all.My only wish that he could still be my consultant and surgeon now ,adult services is nothing compared to Neil , no comparison whatsoever.

 

Anyway enough of that otherwise I’m going to be a blubbering emotional wreck and go off track even more so but yes I could easily write a whole blog about him.

 

I then headed down to Magpie ward to find Gaynor ,when we first got down to the ward I was greeted by Brigitte who was also loving the elf look and got chatting to Brigitte about how everything had gone upstairs on Peter Panther ward.Brigitte also told me how the hospital budget for Christmas decorations was very little to the point Gaynor and her husband had contributed most of the decorations that we could see on the ward.This actually upset me and I told Brigitte how had I of known this I would have brought decorations to do the wards up and promised how early next December I would go back and decorate the wards for them because it’s Christmas and well it’s just nice for the children,families and staff to see, so mission accepted.

 

Gaynor was busy with patients so we waited for her to finish up which wasn’t that long before she came over to see us . I got talking to Gaynor about the Christmas decorations and how I would be coming back and decorating the ward for them next year , got talking about how it had all gone upstairs on Peter Panther ward and just generally having a bit more of a catch up really.Again like with Neil we took individual photos together

79813243_10215658921282837_8087389483831394304_n79827817_10215658920842826_1019348446903009280_nMe and Gaynor also attempted to recreate our first photo together, but again this did not work out either I’ve grown taller since that first photo was taken but it was defintely a laugh attempting to recreate it hence the first photo, a lot of the photos one or both of us are laughing in.Defintely no false smiles on either part in the photos.

375246_155048101259212_344140285_n

I love this photo with Gaynor I love the new up to date photos too of course, but this photo here is again another photo that is very special to me. Gaynor is the very first nurse I can remember ever looking after me at GOSH .Gaynor was always there for me on the mornings of surgery, taking me down to theatre,  the first nurse I saw when I woke up  and cared me  on the ward the whole time I was in GOSH recovering from both my ear reconstruction surgeries , as well as Coleman fat transfer and was always the nurse that did my pre op assessments as well as the outpatient check up appointments.

Even on days I was on the ward recovering from surgery and Gaynor was not allocated to be my nurse she would still come in to see me  and ensure I was OK. Gaynor is so special to me and is a huge inspiration and role model to me she is forever kind,caring ,smiling ,upbeat and positive and,absolutely the best  and my favourite nurse there is and nobody will ever trump her!

Gaynor is a  huge role model to me and someone I look up to and aspire to be like,If I could be half  as incredible  as Gaynor is or as loving ,compassionate and caring as Gaynor then I would be over the moon .

Without Gaynor I would not be where I am today and I genuinely mean that not just saying it at all again like Neil Gaynor has known me since I was little and has been there through the harder times with school bullying, wanting to take my life and not once passed judgement and has always been there to offer her love,care and support throughout everything and I know she too reads my blogs and was again one of the first to read ,support and back it and even now Gaynor inspires me.

 

 

Right OK enough I’m getting emotional now thinking about these two very special people .Dear me what do they do to me! I will forever be in Neil and Gaynor’s debt they have both changed my life so much and have been incredible from the word go and both have very,very special places not only in my heart but my parents too .There are no two people in the medical world I trust or adore as much as these two , the absolute dream team and I am so so lucky to be able to say they were part of the team I was under, I could not have gotten any luckier or anyone better than these two and honestly I highly recommend them both , anyone else nah not worth going too, these two all the way , and of course Brigitte too I love you too 🙂

After seeing Neil and Gaynor I still had one more thing to do before I left….

Now I had given out gifts to the children, seen and met families,chatted to the various different staff,caught up with Neil and Gaynor and taken those all important photos…what else could there be you ask?

 

Well you may remember early on into this blog I said about how a family had donated £100 right?  and I had been left with the task of finding something to spend this on right? well I actually also had some other cash donations come in one from another family who gave me £30 and I had also recently had a clear out of some of my stuff and sold it on throughout the year ,I also had some money put aside as every year instead of doing Christmas cards I along with my parents donate the money to GOSH instead. So I had £222.67 so what did I do with this?

 

Well as you may have guessed no I didn’t go and buy more toys or gifts with it ,I am glad I didn’t as it would not have all fitted in the car.Instead I decided I would this money to of course be used in some way, and no not in my bank account or a shopping spree! I wanted to give a gift with this money still but not give any more toys or books or anything. I instead decided I would like to donate this money to one of the charity appeals called never far away:Essex appeal. This appeal is an Essex based appeal and well I’m from Essex..However the reason I chose to give it to this appeal is because the Never far away , is an appeal that raises funds to run the parent accommodations near to GOSH such as Weston House which is directly across the road,opposite GOSH so that families of children staying in GOSH never have to be far away from their children.

One parent is always allowed to stay on the wards with their child and is the case apart from in some cases where children have to be isolated I believe. Without these funds parent and family accommodations cannot stay open and are solely run on donations, of course the hospital charity helps, however if the hospital is giving funds to this of course it means less is going on wards,equipment etc in and around the hospital.

 

Weston house and accommodations like these are vital to anyone that does not live near to the hospital.I know I have stayed in such  with my family before I had surgery and it was an absolute godsend to us as a family and I also know many other families that benefit from staying in patient and or family  accommodations that  would otherwise make it very costly and a lot harder for them to be able to get their children to GOSH for the care they need, such as the Agnew family who I am very close with and have been for the past 8 years , they live in Northern Ireland and so they  use the accommodations for routine appointments so that they can stay the night before an appointment and of course also for surgery stays too,Without staying the night before would make it a lot more costly for them as a family having to find hotels and pay out a lot for this on top of flights across and would make things so much harder for them.

 

I also know of other families through the Microtia support group who also use these accommodations due to not living near London and it being quite a journey for them .

other locations near to the hospital where parents are able to stay include:

  • Mezzanine Mothers’ Unit
  • Morgan Stanley House
  • Number 2 Powis Place
  • Sandwich Street
  • The Sick Children’s Trust

These accommodations cater for one parent where the ward is unable to for any reason allow the parent to stay on the ward , However if the patient is in an intensive care unit, both parents are accommodated.

My other reason for choosing this appeal is  not only because of first hand experiences and knowing how important these sorts of accommodation are for families when their children need to use GOSH and it being one less thing for them to have to worry about , especially so if it is not a planned visit to GOSH.The other reason I chose to donate the money to this appeal was because  this was a Christmas donation and for me Christmas is a time for family and what sort of Christmas would it be  without family around you and more so if your a child in hospital but your family cannot be near by?

 

So before I left I headed down to the charity desk and handed over £222.67 in cash towards the parent accommodation so that another parent could be that bit nearer to their child. The look on the charity assistant on the desks face was a picture she could not believe that I had handed over £222.67 in cash .Now this may not sound a lot and in some respects it’s not because for one parent to stay in accommodation for two weeks costs £490, so the £222.67 I donated was £22.33 short of being able to accommodate one parent for just a week, had I of know this then I would have topped it up , However this does not mean to say that I’m not nor that the charity or appeal is not grateful for the £222.67 I donated, it just goes to show how expensive it is to maintain and to keep it going really , for me this pushes me to want to do more to raise more money to be able to accommodate more families next year.

 

It was so hard to leave GOSH and leaving Neil and Gaynor , so much so when we got back to reception whilst waiting for David to come back from the toilet I did sit there and cry just so many amazing memories and so many amazing new ones created today and honestly adult services have got nothing on GOSH, nowhere near! I just wish there was a Great Ormond Street for adults. I genuinely hope to see Neil and Gaynor again soon ,although they’re with me every day in everything I do it’s not the same as seeing them really.

Before we left I had to take a few more photos,Firstly with the charity mascot Bernard Bear who was also a fan of the elf outfit too

80533449_10215658924362914_7062726865303109632_nand of course with Peter Pan himself too

81013394_10215658923682897_4165957649638096896_nThis Peter Pan statue has been here as long as I can remember right outside the entrance to the hospital and is one of the reasons behind my Peter Pan rib tattoo as well as there always being Peter Pan artwork around the wards and more importantly Peter Pan ward too ,so Peter Pan plays a huge part in my GOSH journey and story, I actually took a photo with this statue the day I was discharged from GOSH too. For those of you who are not aware J.M Barrie who wrote the story of Peter Pan has dedicated all of the rights to GOSH meaning every time a copy of the book is sold or a theatre production of Peter Pan comes out GOSH get the profits of this not J.M Barrie.

 

Christmas Day I had a Facebook notification from my Local paper with part of the follow up story on their social media and website and just after Christmas this was fresh off the press and hit the local supermarkets and news agents:

81658382_10215272583783197_5987560499435274240_nIt was so surreal to see this, firstly it was a much bigger piece than I had expected and also it still had not felt real that I had really done this and even now still feels like a dream that I haven’t woken up from.I just am genuinely so overwhelmed and shocked at how generous everyone has been .I’ve seen other peoples charity ideas and campaigns come to life and really take off but me?! little old me?! Never I genuinely never expected anything like this , it was beyond my imagination to have even got anywhere close to this level of donations!

 

I will absolutely be doing this again next Christmas  as well as decorating both Magpie and Panther ward with Christmas decorations early December too.I have also begun the planning to do similar at Easter and already have some Easter crafts ready to donate… actually that said I have also already received offers of help and donations and actually have already got gifts put away in the loft ready to do this all again next Christmas 🙂

BAHA pre Op Assessment 18/11/19

Published January 22, 2020 by goshgurl95

Heyy everyone so this is just going to be a quick update blog from my pre op assessment in  November 2019 . I know this will be a short blog post but originally I was going to talk about a few other things in this post, but on thinking about it and typing it all up I’ve decided actually I would prefer to keep this blog post strictly about the BAHA and pre op assessment as I feel otherwise it takes it away from the other things I want to talk about and share so I’ll do short separate blog posts for these other things.

Ok so to begin with  In my last blog I updated you all that my BAHA was still misbehaving and causing havoc to the point that at the last appointment my consultant and surgeon Mr Joseph agreed that they needed to intervene as it was not responding to any antibiotics or antibiotic or steroid creams and now we had tried the 4 week cream we had exhausted all possible options and had agreed to surgically intervene .

 

A few days after that appointment I had a couple of  letters I had very much been waiting for ..The first letter was a copy of notes from the last appointment that had been sent to my GP to keep them informed of what the outcomes of the appointment had been and more to the point to inform them that surgery would be taking place and explaining what they would be doing so that my notes on file at my GP could be updated accordingly and correctly.Even reading that made it all seem so real that finally there was light at the end of the tunnel , we were coming to the end of this.

The second letter was THE LETTER confirming a date had been made for my surgery.. 17th January 2020 and asking me to phone to confirm if I was happy with that date.. It was a Friday it did not clash with my sign language classes nor did it clash with my signing choir perfect! ,Not that any date would have mattered nor did I have the choice to be fussy here! However this was brilliant not only did I have a date but I wouldn’t have to miss any sign language classes or any choir rehearsals and I would be able to go to class again the Monday after ! excellent!

 

I quickly got mum to phone them and confirm and within minutes that was it all sorted and booked… Eviction date had been served we were finally coming to the end of these nasty infections and hopefully to a healthier new year , now just to get through the remaining few weeks until it all happened !!!

 

A few days later I received another letter this time about my Pre op appointment, great perfect another step in the right direction… Although we needed to again ring the hospital as there was an issue with the appointment time as they wanted me in London for 9.25am which was not going to be possible due to it being commuter fares so double the price, plus it would have meant leaving at the crack of dawn to get there for that kind of time too.

 

So yeah we phoned them about this appointment and they were a little confused as to why I had not had this appointment when I had been at the hospital a few days ago and been told that surgery was happening ,even though we were still waiting for the date. We explained how this had not been mentioned to us as being an option of doing it then and there on the day otherwise we would have opted for this rather than me going back up there for all of five minutes.

The lady we spoke to on the phone was really helpful and explained how we could actually do the pre op assessment over the phone to save me having to go up there to complete it and said how she would leave  a note for her colleague who was on break to call me back  to conduct the pre op assessment.

 

I waited and waited and no phone call came and I just assumed OK well she must be busy caught up doing something and will get back to me as well lets be honest it wasn’t exactly urgent for her to get back to me as my surgery wasn’t happening until January and could be done anytime up until then..

 

A few days past and I had still not heard anything more about my Pre Op assessment and to be honest had forgotten all about it until I had a text come through from the hospital with an appointment date, which left me a little baffled because as far as I was aware I didn’t have any more appointments with Mr Joseph until after surgery in January… so I phoned them and was told that this appointment was for my pre op assessment and so I explained to them how I was awaiting a call back from someone on the pre op assessment team to do it over the phone .I was told that this is not possible to do and that I had to attend in person for the assessment.

 

18th November I headed up to the RNTNE hospital in London for my pre op assessment, my appointment time wasn’t until 2pm but I arrived by 1.30 and decided to go straight to where I needed to be and check in just in case I had any mishaps like I had last time , plus they always advise to be 20 minutes early anyway so it was only really an extra 10 minutes .I went straight there and was told I was in the right place… Great, although I wasn’t holding out much hope after sitting on the wrong floor for over an hour despite being told I was in the right place.

I took a seat and waited for my name to be called. A few minutes later the receptionist called me and waved me over to the desk so I went over there thinking OK great what’s gone wrong and feeling I was about to be told either :

A) I was in the wrong place

B) I had the wrong day

or something else like this

Instead I was handed a clip board which I was not quite sure what I was supposed to do as he was so quietly spoken, not ideal really for an EAR,nose and throat hospital where you know chances are there are going to be patients with hearing issues or communication issues.. speak loudly and clearly ..pleasseee I don’t ask for much but seriously this is one thing that bugs me at the hospital , I get yes you want to be quiet as some patients are unwell etc but at the same time knowing it’s a specialist hospital for one of three things and one being ears… doesn’t hurt to try speak a little louder especially when a patient is asking you to repeat something multiple times does it !.

Anyway less of the rambling moaning I was then given a questionnaire and asked to sit and fill it out and then hand it back to the receptionist, basically it was like a screening before actually seeing the nurse and going through it all in more detail.

 

I quickly finished the form and handed it back and was then called through by the nurse  who once realising how far I had travelled for this appointment turned round and said “oh you do know you could’ve done this over the phone”  great… just great.. .so I explained how this had been the original plan but I had then been told it was not an option and she was very certain it definitely was an option as no urgent medical conditions or illnesses in the family  so this was very frustrating.

 

The nurse then  ran through the questions in a little more detail taking  not only my medical history- I felt for her I don’t think she quite knew what she was letting herself in for there.. and then my families medical history and background thankfully a lot quicker than mine took. before asking other routine questions about my smoking and drinking habits , never smoked and never tried it so this was all good in their books and of course mine too , drinking a couple times a week if that and even then it’s only 1-2 glasses of gin or wine so they were happy with this too and then took my blood pressure, height and weight and then the nurse phoned to ask when my surgery date was so I explained no I already have a date and have confirmed it which the lady from admissions on the other end of the phone said they had no record of, so I showed the nurse copies of the letters and paperwork and she said she would speak to admissions and let them know. Then I was free to go home.. pretty pointless trip really for  all of five minutes I was in and out before my scheduled appointment time of 2pm…

 

Just as I was coming out of the room from seeing the nurse I bumped into the lovely Ann Sargent closely followed by Rowena Egan, if you’ve been reading my blog for a while now you’ll know who these lovely ladies are , if not I shall tell you 🙂 .Ann and Rowena are both BAHA advocates who go along to Mr Joseph’s BAHA clinics which are held once a month on a Monday and their role is to be there before the appointment to talk with patients that may be considering BAHA or those like myself that are there regularly and they see all the time at the clinics and to basically be there to offer help and advice both before and after the appointment.

 

So yes I got talking to them as it had been a while since I last saw Ann and even longer that I had seen Rowena so I sat catching up and chatting to them about a range of things , of course about my BAHA and the ongoing infections , why I was here as they knew I was not on the list for the BAHA clinic today and just generally catching up on what i’ve been up to with sign language, choir,work, life ,blog everything really that before I knew what the time was Mr Joseph’s BAHA clinic had begun and I got talking along with Ann and Rowena to some of the other patients chatting about why I thought BAHA was so great, infections but how despite infections I wouldn’t be without my BAHA, hats and how they work with BAHA (not easily) and how I knew on Etsy you could buy custom made hats that work with BAHA the next thing I knew  the  afternoon BAHA clinic  had been and gone and  it was now coming up to 4pm .I was fortunate enough to see Mr Joseph and have a chat with him about how everything was going with my BAHA and for him to take another quick look at how things were going.

 

As well as being fortunate enough to bump into one of the audiologists Wayne who deals with BAHA whilst still talking with Ann and Rowena to another patient who was talking about what model of BAHA he had been offered prior to his appointment and this was the same one that both and Ann and Rowena had and they’d said how I also had that one which I quickly mentioned I had no idea about this particular model (BAHA 5) and how I had never seen or heard of the 5 and how I have BAHA 4 and Ann said was I on my second BAHA 4 which I explained no this was my original , my first and only BAHA I had ever been given .

 

Ann being as fantastic as she is relayed this to Wayne and asked why I was still on my original BAHA as apparently unbeknown to me BAHA’s are supposed to be upgraded or changed every 5-6 years I had no idea about this until this was mentioned today. Wayne then said to Ann that I hadn’t been upgraded as I had not received my original at the RNTNE hospital and had received it whilst still under Great Ormond Street Hospital (GOSH) which I again corrected and said no I had my BAHA here I was referred across from GOSH due to my age to have it done under them and I’d had the original surgery in January 2014 and received the BAHA 4 in March 2014 so was now coming on for the 6 years.Wayne said how he would check the upgrade list and see where I was on this ,but how I wouldn’t hear anything or know anything further about this yet due to having the surgery and healing/recovery first before I would be able to wear my BAHA anyway.

 

This is how good it is to have the BAHA advocates there because they’re fantastic at getting things done and sorted and well I wouldn’t be where I am now without them anyway.

 

One thing that did frustrate me a little whilst at the hospital was whilst talking in a quiet corridor to Ann and Wayne that Wayne commented saying how good my hearing was really without the BAHA!!! this really irritated me as I get this kind of comment from anyone else without medical training or background..However Wayne being a medical trained professional and an audiologist I expected to understand this and to be more understanding and sensitive to this ! I some how calmly explained to him it depends on the environment and the situation somewhere quiet like this yes, somewhere crowded and noisy no not a chance at all and said how it really depends where I am , who I am with and background noise etc..

 

Anyway I was then invited along with Ann and Rowena on an exclusive tour of the new hospital looking around at the different clinic rooms, new audiology unit, hearing test booths, the different areas they could now help with on various floors of the hospital which was really interesting to be able to see and look around at .

 

I was then invited out for  dinner with Ann and Rowena but as much as I would’ve liked to have joined them I had to politely decline as I had to get home ready for sign language class that evening but walked with them to the local tube station discussing my next charity event.. (no spoilers here I’ll be talking about this in my next blog) and said my farewells before heading into the tube station and going our separate ways.

 

So all in all although yes a very quick and pointless appointment it was worth it in the end to see Ann and Rowena

RNTNE Appt 21/10/19

Published October 24, 2019 by goshgurl95

Sooo here we are again.. As I mentioned in my blog on the 16th September 2019 about my latest hospital appointment,I’ve been having a lot of problems with my BAHA with regards to constant or very frequent infections and skin growth and was told I had to try a cream out for 4 weeks and then return to see Mr Joseph my consultant and Surgeon,However I couldn’t get an appointment until Christmas eve..

 

Well as you can see from the title of this blog… that  christmas eve appointment very much did not happen..

 

I had trouble picking up the prescription for the cream to begin with, great. This should have been an indication of how things were going to go really shouldn’t it.. firstly I couldn’t pick it up from the pharmacy at the hospital , as where the hospital was due to move buildings they’d closed up the pharmacy….helpful…

Then one of my local pharmacies refused to accept the prescription as it was a hospital dispensing prescription ..again helpful…

I explained the situation as to why  I was trying to get it from them isntead of the hospital and was told I would have to go back to the hospital and collect it from there…

noooo not possible it’s closed..

plus I wasn’t going to pay £40 for a train  to get up to London  and then tubes on top of this which would likely be another £7  just to pick up a prescription which would then cost me another £8-£9 .. nooo..

Anyway I tried another local  pharmacy and again they refused, however I then explained the situation and they luckily were more understanding and I was able to  get hold of it…

 

The cream I must admit I was a bit dubious of , I guess because on and off since April this year when I began getting infections , I have tried oral antibiotics and antibiotic/ steroid creams to treat  this years infections and they just haven’t worked and to be honest I think my body has just given up with them since August when the real problems began and I’ve been unable to shake the problems since so I was kind of dubious like yeah ok is this actually going to do anything as the only real difference with this cream was that I had to use it twice a day for 4 weeks instead of 1 week in the hope of thinning down the skin…

 

The first day didn’t look like anything was happening it just stung  like crazy but  I thought hey that’s ok this could be this working it’s magic maybe I will give it benefit of the doubt

 

Over the next couple of days it did look  like it was doing something, I don’t know if it actually was or if this was just wishful thinking but I was finding a lot of skin was coming away from the abutment

 

.. However…..

Oh yes…

There sure is a however…

 

As always with me nothing with my health is ever simple… It then… well …didn’t work anymore and it got a lot worse, in fact the worst it has ever been..

 

The swelling just went wild and  near enough covered over the whole abutment.Whereas before it’s only ever reached about half way , this time I could barely feel any of the abutment and rather than just having localised swelling to just the right hand side behind my microtia ear , it was the full way around the abutment…

not quite the result myself or Mr Joseph had been looking for or wanting..

 

This was a little devastating and upsetting but honestly these infections and problems have been going on for so long now it didn’t quite surprise me either ..

 

As always this caused me a lot of pain, discomfort and other symptoms such as:

  • dizziness
  • light headedness
  • constant/ regular headaches
  • blurred vision
  • soreness around the abutment site and down my glands
  • sleepless nights
  • struggling to continue to hear
  • tiredness

 

So there was absolutely no way I was leaving things like this until Christmas eve .Firstly well the trains Christmas eve are going to be a total nightmare getting from mine in Essex up there  that’s if the trains are running properly  and on a good service…,  it would be packed on trains/ tubes and around London with everyone Christmas shopping and of course most importantly I didn’t want my symptoms getting worse or my BAHA being left untreated for a further few months when I could be getting it treated or getting the ball rolling with getting treatment or a plan of action in motion.

 

So failing being unable to get hold of anyone on the phone lines and just having my call diverted here there everywhere and of course struggling with my hearing  (I hate talking on the phone at the best of times but more so without my BAHA to people I don’t know )   I sent an email to one of the audiologists who had been in my last appointment and just explained how I’d been told by Mr Joseph that I needed to be seen again in a months time regardless of how the last month went with the cream and how it had got worse and I wasn’t prepared to wait until Christmas eve .

 

I attached some photos so they could also see what was going on too and asked when the next  urgent appointment was  with Mr Joseph.

 

I got a reply back saying how they were sorry I was still having problem with my BAHA and got offered an appointment a week Monday (this was a Friday morning I sent the email off) Funny what a bit of moaning does … I just thought to myself yeah I’m definitely not at Great Ormond Street anymore as this would never have happened, I would’ve got an appointment when needed in the first place..

 

I then of course can’t be straight forward ever can I… The next Morning I was ill but no not BAHA ill . I started off with a dry/tickly throat  on the Saturday afternoon and was a bit cold but I put this  down to  the weather changing and getting wetter and colder outside and come Sunday afternoon at work I had no voice at all it was literally just a whisper.. but yet I felt fine in myself I just had no voice.. Monday (a week before my appointment)  I then develop a lovely cold and keep sneezing, greattt… and then by the Wednesday I was full of thick cough and cold that developed into a head cold so that was all fun and games and I colleagues bringing  a ” goodie bag”

containing:

  • Liquid lemsip
  • cough medicine
  • sore throat sweets
  • vicks vapor rub
  • chocolate buttons
  • chocolate doughnuts
  • orange juice
  • fruit cereal bars

As I was working the whole time despite being ill and feeling rough but they were great about it trying to help me out where possible.. My only concern was to shake this and get rid of this before my appointment on the 21st I had less than a week to get rid of this and be back to health , otherwise I knew I wouldn’t be seen at the hospital and would then go back down on the waiting list and they’d think hey it can’t be that urgent she’s cancelled the appointment….

 

Some how with some kind of miracle I managed to shake it off ..well mostly I mean it’s still partly there on my chest but nothing compared to what it was..Great cool appointment can still go ahead….

 

I then get ill again … of course I would,., this is me,,, my health is apparently so brilliant and likes to play ball when needed… I then the day before my appointment develop cystitis ,great just what I need a water infection to be battling and trying to get the train and tube up to London the next  day, fabulous…..

 

Somehow.. with some kind of miracle I made it to my appointment.. I left home earlier than I needed to just purely for the fact that the  Royal National Throat Nose Ear Hospital (RNTNE) had now moved into it’s new building and I didn’t want to get lost as I had no idea where I was going as it was now a new tube stop instead of the one I’ve been getting off  for well all my life as I used to get off at the same stop for GOSH too.. although I did on occasion get off at Kings Cross for the RNTNE hospital.. but now I had to get off at a stop I’d never heard of so this could prove interesting, especially with my sense of direction….

 

I’m sure I must look like I know what I’m doing when it comes to travelling in London as yet again I got stopped and asked for directions as a mum and her son stopped and asked me if the tube we were about to get on stopped at Baker Street, I had no idea..

I don’t know London I’m no Londoner!! help!!

someone asking the worst possible person for directions that couldn’t even tell you directions from her house to Morrisons which is a couple mins walk and I know exactly where that is…..

But I was ok, let’s do this.. and told her I didn’t honestly know but I would check on google maps ,which she was really appreciative of and I think she ended up where they needed to be..I hope anyway…

 

Anyway I found the new hospital building really easily , so great that was that part sorted now where did I go? luckily because it has newly opened there were lots of volunteers about and one showed me how to check in , on their new check in system and then told me that I was checked in and that my appointment was up on the 5th floor , Ok cool I jumped in the lift and headed up to the fifth floor and went to the reception desk there to check in .

 

The two receptionists are debating oohh TJ BAHA clinic is this here on this floor? whilst the other is certain yes it definitely is here and yes it’s certainly this floor so I’m told to take a seat and wait for Mr Joseph to call me through or for a room number to come up on the screen to go to..OK great…

I sit ..

i sit..

I sit there some more

people come

people go

but there is no sign of Mr Joseph coming out and nobody has come in or out from seeing him .I’m the only one sitting in zone B as directed by the board floor 5 reception zone B.. .Okkayyyy…

This is a little weird as Mr Joseph is always on time it’s not like him to be late, hmm maybe he’s got caught up somewhere I think ..

more time passes and I’m like nope I should’ve been seen 20 mins ago and something just isn’t feeling right, I go up to reception and wait as only one out of the two seems to be actually doing anything… and I ask if I’m in the right place and explain how my name hasn’t been called and I get told… OH yes you’ve been called already..

 

I’m of course confused well what do you mean I’ve been called already? nobody has come out and called me through? my name is on the board but just says floor 5 reception zone B and she was like oh no it’s saying on the computer he has come out and called you, she then looks into it when I explain he hasn’t and the board is telling me zone B of this reception and it comes up on her computer that I had been called but it was actually on floor -2.. so I had to get the lift back down the 5 floors to ground floor and then go down a further 2 floors.. panicking by this point that I’m not going to be seen rushing going as fast as I physically could what with this stupid water infection causing pressure too..

 

I get down to -2 floor and explain the situation and apologise profusely and they too debate whether Mr Joseph and his clinic is even here… OMG .. Don’t do this to me not now it’s like 25 mins past my appointment time now and I’d been sat upstairs for nearly an hour only for me to question it and be told I’m in the wrong place, I can’t be sent wrong again.. surely… I just had to get to this appointment wherever it was…

 

One of them says to the other yes ,TJ is Mr Joseph, yes he is here , his clinic is here round the corner and I’m like OK you sure? he’s definitely here on this floor ? his clinic is definitely around that corner? and he’ll definitely see me?

 

She’s like yeah it’s fine just head round that corner and take a seat and he will call you when he’s ready so I’m like yeah of course that’s fine and I’m just sitting there thanking my lucky stars that he will still see me , as well it wasn’t my fault this had happened..

 

 

A few minutes later he comes out and calls me through and asks if I found it alright, so Ii’m like i’m so sorry I found the hospital easy enough but I got directed upstairs to the 5th floor and have been sitting there for almost an hour (I’m always early before appointments) before I got told I was in the wrong place.He was fine about it and directs me through a set of double doors to the room he is in today and comments on how bright my red leather jacket is, so I’m like yeah can’t loose me then hopefully 🙂 .

 

We go through to the room and he asks how I am and how I’ve been getting on so I explain about how I’m still having on going trouble with my BAHA and he asks to take a look , I had already tied my hair up into a bun so it was easier for him to see the area without the faff of having to try an hold my hair back and angle my head so it won’t fall back down , or him having to try and hold it and look at the same time.

 

He took one look and was like yeah OK that is still swollen isn’t it and says to me I think we need to do something about this don’t we.

 

It is decided that now is the time to act and time to do something about this as , well lets face it my BAHA hasn’t exactly responded to anything else has it, so yeah we need to do something about this to stop this .. Mr Joseph tells me how he can see that the swelling has got worse and has near enough fully grown over my abutment , confirming what I had thought was going on from what I could feel and see of the photos I’ve been taking of it , to try to keep an eye on it .It is decided that we need to intervene surgically now .

 

The plan of action…. to have revision surgery , firstly to remove the skin which has overgrown the abutment !! (FINALLYYY )  This was mentioned about doing after my first nasty infection in 2014 and hasn’t actually ever happened and I partly think this is exactly why I’m still having problems with it and then to remove the abutment that is currently in place and put in a longer one (screw part) . This will be done under a general anesthetic, something I’ve come to know quite well and am now used to after having countless of these since I was 4 months old .. It’s all good.. It shouldn’t take long to do like when I first had it done.

 

However… Mr Joseph also said something I did not want to hear…..This could all happen again… there would be no telling… It would be a risk we would have to take , it may get like this again , but it also may not..However at this current point in time I don’t have much other choice but to try this.. if this doesn’t work I don’t know what will happen, I guess it’ll be back to the drawing board and possibly exploring new options such as the BAHA attract which is similar to what I currently have now, expect instead of having an abutment it would be basically a magnetic spacer underneath the skin so I therefore shouldn’t get any infections or problems..

 

How did I feel with this action plan? Honestly quite mixed emotions if I’m honest. I’m not worried about the surgery at all I mean I’m so used to having operations and being in and out of hospital it genuinely does not phase me in the slightest at all, it’s just part of my life and something hey I’ve been doing regularly since I was 4 months old so whatever really :).

 

But honestly i’m apprehensive and worried about this all happening all over again and having further problems with infections and if I do how quickly will it spiral again? will the antibiotics even respond anymore as I feel I’ve become immune to them now?  and this is not really something I want to be thinking about , however I know I have to know that this is a risk ..I know all surgery comes with a risk but I don’t know I just feel like this is sitting heavier and has more weight to it than any other risks with any other surgery that I’ve had… but I have to remain positive that this time it will go right and it will work …

I feel worried about what pressure is going to be put onto my left ear and whether my left ear will suffer more of a hearing loss , as where it had to be both ears for 16 years before I even found out about BAHA and that this could be an option and began the process of looking into it and then waiting almost a further two years to have my BAHA implantation surgery , it was only on the hearing tests we had the worrying results come through that my left ear hearing had dropped and I had to then and there go and have a hearing aid mould made and an emergency appointment to return a week later to have it fitted …

what damage has been happening to my left ear and hearing really since April this year but more so August- now where I’m still unable to wear it at all and for however long it will be until I have the surgery , and then of course the recovery period too until I can wear it again .. and then of course the worry of if I have the same problems again with the new abutment what pressure and problems will this cause to my left ear and hearing too ?

 

For me this is incredibly scary that the hearing I do have is currently going to under more pressure and I have no idea how much damage this is doing or will do , as of course since not wearing my BAHA due to all the swelling and infections I’m struggling a lot to hear. I cannot locate sound, I couldn’t hear my parents talking in the front of the car on the way to my Jack Petchey awards, I can’t hear my parents having conversations with me if I’m at the dinner table and they’re washing up, noisy environments have become and absolute no ,no again and I just feel like in some respects I’m isolated and back in my quiet little bubble , that used to be life before I discovered BAHA. Yes I can sign so I DO have this I can fall back on, but I’m not fluent in BSL I don’t know everything or every word and more to the point my family don’t sign .. although that said the amazing ladies I do my level 2 sign class with have been absolutely fantastic about it and haven’t batted an eyelid at repeating things to me or helping me out in anyway shape or form , my tutor has been incredible about it too and has put a buddy system in place in case of the fire alarm going off and just generally being great about the whole thing

 

I also felt relief that finally something is being done and that I have answers and we have a plan of action in place and we all know whats happening and what the plan and expectations of this surgery are , I just hope I don;t have to wait too long I just want this done ASAP I just want to get back to living my life and feeling happy and confident in all situations again and not having to struggle or rely on lip reading or keep asking for things to be repeated.

 

Also it’s upsetting as when I got home and looked at my Facebook memories it popped up that 5 years ago I’d posted about how my BAHA journey was just beginning and in some respects I feel 5 years later I am no further forward than I was five years ago as I’m right back where I started .. so really I’m no better off than I was  exactly 5 years ago .

 

 

But I’m alright just got to keep hoping that it won’t be long until I’m getting this sorted I just hope the wait isn’t too long until I can get this sorted and be hopefully on the right path again .

 

This was also something Mr Joseph said he could tell I currently am not happy with my BAHA and how he wants to get me back to the point where I am happy with it again , I don’t know it’s like you get given something so important and then it just gets snatched away , it’s not fair no but also just one of those things and nothing you can do about it, hence why I’m remaining positive and just waiting it out as no point getting down about it  really .Mr Joseph checked that I had been happy with the sound quality and everything about the BAHA prior to all the infections and problems I’ve had which I confirmed I was and then was told he would add me to the waiting list and that I was now free to go and to just await a letter in the post telling me when it will be happening..

 

I’m hoping sooner rather than later although I’m thinking more realistically it’ll be January/February time but I just want it done now to be honest get rid of this pain and swelling , stop it being painful to sleep on , stop me catching it on my blooming car door.. ohhhh there was some colorful words when I did that… (It was already swollen like this so no this is not the cause of the swelling)

 

 

Then that was it time to head home and get ready for sign language class… the day was going well as I managed to completely miss my stop on the train getting home and had to get off at the next stop which was a smaller and more remote stop so trains don’t run frequently through there and I ended up siting there waiting for 20 minutes for the next train back to where I should’ve been going, quickly grab the car from the station carpark, which I completely forgot about and walked past and then had to turn round and walk back to the car park to retrieve the car, then drive home quickly eat and get to sign… but hey I got there as always 🙂 I’ll keep you updated as soon as I hear anything or know anything you’ll know too

 

Thanks for all your support in this journey  xxx

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