UCLH Admission 07/02/24

Wednesday 7th February 2024

6:57am – Alex seems to be in a somewhat friendly mood this morning. Perhaps she’s got a guilty conscience for having repetitively woken me up last night or generally keeping me up? I went against my better judgment and did, indeed,keep my left hearing aid in overnight. I debated removing it but just felt I couldn’t ( I only ever leave it in overnight if I’m in hospital,in order to hear whats going on otherwise I’m dead to the world,not helpful when you’re on regular checks,monitoring, IV antibiotics and iv pain killers)

Alex has woken up after her nightly antics, crashing and bashing her way to the toilet with her zimmer frame. Alex has proceeded to come out of the toilet to come over to my bed, stop at the foot of it, stare dead into my eyes, and say, ” Good morning. Where’s my nurse? What way did she go?” I mean, I guess the thought was partially there?!

The poor nurse was probably hiding from her. Please don’t ever let me be that patient bugging everyone like she is.

I appear to have lost my socks this morning..as you do. I know it’s hardly breaking news,but it’s still quiet here and nothing else to report, besides my missing socks.  I’m not even missing just the one,but both. no, they’re not on the floor or caught up in the bed/ bedding. They were definitely on my feet when I went to sleep last night… perhaps I do need to get the nurse back to repeat that dementia screening after all.. I would most certainly lose my head if it wasn’t attached – then again,mind you, it’s partially attempting to do exactly that anyway, isn’t it?!

Typically, because I strangely hadn’t expected or had any forewarning of this admission, I don’t have any other socks with me.. mind you, I can’t say I would blame them if they had given up,  got up, and walked themselves to the bin by this point.

7:30am – Breakfast comes round. I take a gamble on the “toast” again this morning. It’s better today. It resembles toast. It’s just cold today. we’re slowly improving .. I  opt for a cup of  tea this morning,   I’m not generally  a tea drinker, but it’s definitely the better and safer option.

9:30am– a volunteer comes over checks I’m Bethan before introducing herself ,I am indeed . I don’t think anything of this as yesterday there were a few volunteers coming round to chat to patients and generally help out if they could. The volunteer explains she’s been asked to complete a discharge questionaire with me to check I’m safe to go home.  Oh OK ,am I going home today then ? I haven’t seen the doctors yet I explain . ” Oh haven’t you? You’re on my list for discharge she explains, oh OK… I mean it makes sense because I could be.

She asked me questions about who I live with, I told her I live alone with my young daughter, she asked if I live with family again I reiterated yes but they’re a young dependant, oh.. OK and how are you getting home she asked? I’ll be getting the tubes and a train I tell her. I’m asked who is taking me home. Nobody ,I’ll be getting myself home I explain, she goes on to ask if family can take me home, I explain the situation and where I live, oh so how long will it take you to get back to Essex she asks, around 2 hours I tell her. She asks about symptoms, why I’ve been admitted and how I’m feeling ,am I feeling better or worse etc  she then tells me that from her assessment I’m unsafe to go home and that she will be consulting the doctors,I explain to her my consultant is very much aware of my situation as a single parent and living alone. I explain how my parents are a 5-10 minute drive away if I need them for any reason. I’m told she’s concerned that I’m a single parent living alone without help. Honestly I’m fine I’ve done this single parenting gig since conception pretty much. I can manage.

I’m told before I’m discharged they will have to redo the questionaire, but ultimately because I’m getting myself home and I’m a single parent who lives alone I’m unsafe, soo am I being kept in until someone whisks me off my feet then because I’m done with dating and men.. so I’m going to be here a verrrryy long time. If this is the case,I don’t plan on changing this anytime soon, if ever…

10:07am– my socks are still MIA. Betty has re made my bed with fresh bedding and gone to find me some socks. I can’t lie ,I do genuinely love hospital socks and always keep them after admission and surgery. I have quite a few pairs, I’m intrigued to see what colour I get this time .. (Tan if you were wondering)

10.29am– Alex ,entertainment update.. Alex has already kicked off and told a nurse to go away, refused breakfast, proceeded to get the hump and kick off because “she wasn’t given any breakfast”..we won’t mention she massively kicked off at catering saying she didn’t want it.. nurses did remind her of this.., she has demanded that she is given some breakfast as they’re starving her.. nurses remind her she refused her lunch and dinner that she ordered yesterday and proceeded to order Uber eats very late last night.

Alex  is back to demanding that the curtains be shut.. oh, and how could I possibly forget?… She’s, of course, back to the continuous pressing her buzzer and shouting, “Excuse me every two minutes.. I guess at least she’s polite .. kind of ? I mean, at least she starts off polite with the excuse me ,it’s just the tone and what comes next..

Alex is here for the foreseeable whilst they await a bed at another hospital to become available for her. I now know exactly why she’s here too from all her hullabaloo,I won’t share because, well although she’s shouted it all over the ward , and  over speaker phone all night, perhaps she doesn’t want anyone knowing.. she’s in for suspected dystonia.

The tea trolley comes round ,I decline a hot drink, I’m not feeling it right now. I’ve got localised headaches and shooting sensations, and the right side of my face is still numb. Honestly, I want to try to get some well needed sleep if I can. I’ve got the lovely Betty as my HCA again today . My nurse today is a fellow redhead, Siobhan.

10:35am – I’ve received notification from my daughters nursery that ,essentially, I’ve been booted off of the parent committee, meh  whatever I haven’t the energy to fight or argue it. (I haven’t done anything wrong. My DBS has just taken longer than expected to come back)

11.30am– the soup and bread trolley comes round,I thank them for the offer but decline. Betty is concerned asking if I’m alright, I don’t seem myself today.  I reasusre Betty that I’m OK.

I decided to try to get some sleep .. but Alex happens, she’s upping her game, she’s no longer going for the call buzzer, as she’s realising that staff aren’t responding as quickly, I get it but equally they don’t know whose buzzer it is until they come onto the bay, so essentially if it was any of the other 3 of us were waiting longer as a result.. It’s not really ideal. Alex has cottoned onto this, so instead, she is now pulling the emergency buzzer, which is only surprisingly supposed to be pulled in case of emergency and only by medical staff.. not patients… even stranger, yet she doesn’t have an emergency… she’s also refusing to turn it off until a “proper nurse” comes .. lovely….

11:51 am – well … I hope you’re all proud of me. Toby, the doctor who was on call Monday and admitted me, has just come to see me and check in with how I’m doing. I wasn’t expecting  it was definitely a very welcomed surprise to see him again.

Get your diaries out, ladies and gents..  for once in my life I’ve done as I’m told and I’ve been honest with him as to how I’m feeling, I’ve updated him on last nights new onset of symptoms.  The nurse did not notify them of these new symptoms, nor had they been recorded or documented anywhere.. excellent.. I am, however, pleased I told him as he has now documented this and performed some additional tests and checks.

The redness to my ear appears to have gone, although it is still numb, feels sore and heavy. I guess,  kind of like it’s been burnt. Toby feels it and says it does feel hot to touch. In terms of facial numbness, he is concerned about this and what is causing it. Toby has a good feel of my cheek and right side of my face from forehead down to chin. It’s numb. I can’t feel anything besides the localised headache I have.

Toby assessed both sides of my face.  A hard task for anyone given the asymtry due to my Goldenhar Syndrome/ Hemifacial Microsomia. I always hate people studying my face because I’m so conscious of it. However, I know it has to be done, and it’s never an easy feat for whoever is assessing it.

Toby is super nice about the whole situation though, he treats it very sensitively when telling me that he can definitely notice a droop/ reduction to my right side that wasn’t there when he saw me at admission.

I go on to explain that the osia bump is uncomfortable and how I can’t as of yet lay flat,like you typically would to go to sleep,instead I’m sleeping in an upright position as otherwise I’m uncomfortable – I mean I am anyway but more so and there’s also a pulling sensation if I do attempt to lay flat.

I must admit it feels so much better being honest and offloading this information on Toby, Toby has a look and feel of the bump which he again like Monday apologises for. it’s fine I know it has to be done. Toby is going to relay all of the information to Joe and  suggests that they start me on steroid creams to see if this helps at all with the swelling,which could potentially be resulting in the pulling sensation and numbness.

I don’t feel awful,but I can’t lie. I’m not exactly feeling a million dollars, either. Toby isn’t sure if I will be going today or not, the plan was they were looking at discharging me,but if I’m going to be honest with myself although, yes I’m still functioning and feeling my typical self I’m not 1000% sure if I would be able to manage navigating trains and tubes to get home if I was to be discharged today. Toby tells me he’s going to speak with Joe,let him know what we’ve discussed,what’s happening, and come back to me as soon as he can.

12:30– Toby returns, telling me he has spoken to Joe. I’m told I can either go home and they will prescribe oral versions of the antibiotics that I’m on, and steroid creams.  I’m told 99% of patients that go home at this point are absolutely fine to do so,however, 1% aren’t, and it’s too early a swap from IV to oral. There is potential I could go home and be that 1%. let’s face it, it’s me, so the reality is I will be that awkward 1%.

I’m told IF I do go home and I am that 1% that I will  have increased pain,but shouldn’t need further admission as I would still be on antibiotics they just wouldn’t be as strong.

Option two, Toby explains that they can keep me again tonight, continue IV antibiotics, keep an eye on me , and I can get a good night’s sleep, get as much as rest as possible and go home tomorrow morning after being reviewed.

I ask what Joe has said and what his view on this is. Joe has said he’s happy with either option, and  he’s happy to be led by me.. not helpful, Joe… I mean, it is because it’s lovely that he trusts me to have this level of input into my care, but it puts me in an awkward position of what to do.

It’s a hard call to make. I think deep down I know the answer,I know I need to stay. New onset of symptoms last night that are still present, localised headaches, not being able to lay flat, etc.. deep down I know I need to stay 1 more night, which is nothing in grand scheme of things.

I know I need to get another full day of IV into my system to really kick this infection, get myself sorted,  get some rest, and be fully ready for home and a wild little one. Let’s face it ,if I do go home, I’m going straight back to normality and mum mode,no resting or taking it easy. No, if no buts against medical advice or not, I know it’s what I will do.

I’m torn because I’ve never been away from my daughter this long and I’ve recently learnt that she is missing me, and asking for me. My daughter has been very teary asking for mummy to come back ,seeking lots of reassurance that mummy is coming back, and lots of ” when mummy coming home”, “mummy come home now” ” I want my  mummy” , ” I want mummy home” she’s apparently super anxious, this  isn’t my girl at all.  It breaks my heart knowing this.

It breaks my heart not only as a mum,but as a single parent being that one and only parent and constant in her life, though yes she loves my parents – her Nanna and Gaga to bits and is very close with them, nothing and nobody ever replaces your mum  or parents do they.

I am pleased that Joe is happy to be led by me as it means there’s no real imminent danger or concern if he’s not saying I have to stay, but equally I kind of want him to take the decision out of my hands and make that call telling me I need to stay or to go home..

I don’t want to be a bother or take up a bed if I really don’t need to be ,however I know despite Joe saying I’m under direct instructions to not rush home,I’m always going to rule with my baby. If I’m told my baby needs me, then that’s where I’m going.

My baby comes first and trumps everything. This isn’t a decision I should be allowed to make.  I’m never going to be selfish and put myself first,I’m going to be naughty, say, and make all the right noises to go. No matter the consequences.

I’ve had another honest chat with Toby,I know.  Get me, what’s got into me this morning?! I’ve explained about the numbness and how there also feels like there’s pressure inside my reconstructed ear. I’ve thrown the question back to Toby, what does HE think is the best thing to do in his professional opinion, I need help from the professionals on this one,my heart and head say two different things, neither are wrong.I would say all of this to Joe and ask him but he’s not here, though I do kind of wish i had asked Toby if he could get Joe so that I can speak to him directly.

Toby says , the pros for home are:

• My Infection markers have dramatically dropped – not sure how they know this to be true,as I’ve not had any repeat bloods,so I’m guessing this is based on assumption
• I will still be on antibiotics if I do go home
• I will be at home
• Everything is going the right way and in a direction that they’re happy with

Pros for staying:

• We can hit the infection hard and be certain of no redness and swelling when I do leave
• Less time between discharge and my follow up review appointment with Haddy
• They can keep an eye on me and monitor me closely to make sure everything is 100%
• I can get some well needed rest and sleep,which I wouldn’t at home abd potentially would end up putting myself back in hospital

Cons:

• I could go home and oral antibiotics-although would be the same as the ones I’m currently on may not work or respond, meaning a further admission or emergency situation.
• If we have switched off of the IV  too early I could be the 1% that expirences increased pain and longer recovery/ healing.
• If I stay then I’ll be in hospital longer- therefore making me more susceptible to further infections and bugs.

I can’t lie I’m still torn.  I think the biggest thing for me is knowing how anxious my daughter is and how out of character this is for her.

My daughter being anxious is totally understandable though as I have essentially in some ways just upped and left her, she’s fine about these sorts of things when she has notice of it- for example the osia operation, she knew about that, she knew mummy was going into hosprial for a sleepover, the doctors were going to make mummy sleepy and give mummy a new magic ear.she took that like a duck to water. It’s hard I’ve never left her this long or been this far away from her for this length of time where she can’t even come to see me and without warning.

Toby doesn’t know what to say when I throw the question back at him saying it’s a difficult one and how he too wouldn’t know which way to go either if the roles were reversed.  Toby decides let’s settle in the middle, he will prescribe the steroid cream and we will monitor for a few hours and then review again and go from there.

I think this is a very sensible plan,although realistically, I know the later into the day it gets the higher the probability of me staying is. Realistically, if I’m going home, I need to be going now. By the time discharge paperwork is complete and medications prescribed and ready from pharmacy, it’s going to be pushing on for the evening

I do still partly wish Joe had taken matters out of my hands. I do totally respect that he trusts me to led on my care, I’ve not had a consultant involve me or let me take the led or so much control over my care since my consultant, Neil Bulstrode at Great Ormond Street. Equally as much as I respect this I feel more pressure in some ways as I don’t want to get it wrong and abuse that trust or take the pee ,that it later down the line is revoked and my say is taken away.

The more I think about it, the more I think going home tomorrow is the better choice, especially so now that I’ve got to wait to be reassessed ,await pharmacy and paperwork. 

Tomorrow is Thursday and Joe runs his clinic at the ENT Hospital, so it’s more likely I will be able to see Joe, something I defintely want before any discharge happens so that I know he is fully happy, has seen how things are looking and is fully up to date with everything

I’m hopeful if I do stay that Joe will either come and see me before he begins clinic, arrange for me to see him in clinic or see me once he’s finished his clinic, just so I can have his sign off and approval to go and ultimately so I have full confidence and reassurance  myself.

I think when I see Toby or Joe next I’m going to mention whether it’s worth bringing my follow up with Haddy forward,just because that appointment isn’t until early March and it feels like a huge jump after the past few days. I may see if we can bring it forward ,or perhaps add in an additional appointment between now and then just as a safety net/ safety precaution. I think in doing so I will feel much more reassured

15.17- I’ve spent the afternoon in and out of sleep, this seems to be the only thing making any slight difference to the localised headaches. I think being overtired is playing a part, too, though.

I think staying is the right choice as the lady next to Alex was discharged at 10 am. and is still awaiting the paperwork and pharmacy. I dread to think what time I would eventually go, if I go, as I’m still yet to be reviewed by Toby,nor have I as of yet had the steroid creams.

15:53– Can we just take a moment ,to talk about how incredible ENT doctors are?..

Toby has just come back to review me. I wasn’t aware he had come over as I was laid with my eyes shut. I wasn’t asleep, just trying to ride out an infection induced headache that hasn’t gone with pain relief, hence why I’ve been a lot quieter today. Laying with my eyes shut seems ,so far to be the only thing that’s helping. I had also removed my hearing aid,where I’ve had it in since Monday it’s safe to say my ear is rather sore now and needs a rest from the constant usage. Right now I’m currently ears free.

I’m not sure ,but I’m guessing due to me being laid on my left and the corridor/ entrance to the bay is on the left ,and curtains are open that Toby would have spotted that I had my eyes shut ,believing I was asleep. I’m not sure if initially he was aware I was ears free or not, anyway

Instead of repetitively calling or shouting my name like other staff have been doing.. unless perhaps he had,and I just hadn’t heard? Anyway.. I could feel something/ someone gently touching my hand . I opened my eyes expecting to maybe see a nurse doing a check or having started my next IV not wanting to disturb me. Instead I was pleasantly surprised when I opened my eyes to find Toby, crouched down eye level beside the bed gently stroking the back of my hand

To set the scene.. my left hand/arm was under the pillow that I had folded in half, and I was laid on my left. My right hand was on top of the pillow a small distance from my face. The way Toby handled the situation was amazing and showed great understanding and deaf awareness.  It’s always important for deaf people to be able to see people’s faces and lips. Eye contact is a must. Shouting distorts the voice and.. well, it’s just not successful. More often than not, it just frustrates everyone involved. If you were asleep, or doing something and someone snuck up on you without you knowing,you’ve not seen or heard them theb all of a sudden they’re shouting your name,how would you feel? If asleep you would jump/ bolt awake heart racing wouldn’t you? Where’s the fire, right?

By stroking the back of my hand. Everything was calm, no scaring me or frustrating anyone. By doing this I was aware someone was trying to get my attention- always a must for deaf people , get our attention first. Toby being crouched down at eye level, ensured understanding as to who was trying to gain my attention, as opposed to him towering above me and then suddenly springing into view,it also ensured smooth transition to conversing as he already had my attention and I knew who wanted me. A much better way of getting my attention, especially with monitors/ machines bleeping, Alex being Alex, staff and patients moving about coming and going, etc.

Even better yet, Toby’s facial expressions- another big thing for deaf people we read your facial expressions, Toby’s were calm and reassuring, he didn’t look irritated or frustrated- this has happened a few times ,Monday in particular when I was on a trolley waiting for a bed one of the nurses who had been unbeknown to me calling my name to wake me looked rather red in the face, out of breathe and flustered.

Rather than bombard me with information the second I opened my eyes ,Toby gave me a minute to come too  – I don’t mean he got a stopwatch out and timed it,but you get my drift. I sat up,Toby told me I didn’t need to but still. Toby must have realised I didn’t have my hearing aid in and that it was sat on the table.  Toby realising this pointed to my hearing aid,gesturing if I wanted it,before picking it up , handing it to me and giving me a moment to put it in/ on. .

Toby remained crouched down on my eye level, I’m impressed he must have some good leg muscles . Toby speaks calmly and softly saying “hey, I’m so sorry for disturbing you,I know how important sleep is for you, I know you’re a mum and I see from your file you’re doing it solo”( we deaf do like our sleep, we do need it,listening is super hard and takes a lot of energy and focus. It’s exhausting , like you’ll never know..unless of course you’re deaf then you’ll get it)

I reassure Toby, he hasn’t disturbed me abd thank him for how he got my attention. Toby has come to reassess me, I’m asked how I’m feeling. I’m honest and say how I’ve got a headache that hasn’t shifted ,I’m asked to score it.i tell him it’s not awful,I can manage but it’s niggling away that all that’s working is laying with my eyes shut. I’m asked about the pain to the osia site and I point out areas that are still uncomfortable or sensitive. Toby has a look at the site ,I’m told although it is still red he can see an improvement from Monday, he also comments saying how my face looks a bit fuller today asking about the numbness I’d had yesterday,  admittedly I can now feel my cheek though just in front of my ear is still numb.

I’m asked how / if the steroid creams are helping, I tell Toby I haven’t had it yet, and he asks why not? Am I applying it or nurses,I explain that nobody has applied it, nor have I been given it to apply ,it just hasn’t yet materialised. Toby tells me it definitely has been prescribed and that for some reason, it must not have yet made it to the ward. He laughs , saying well it looks like our plan has backfired.

Toby tells me he had also come to see me to update me that as long as I’m happy, they want me to stay put tonight. I’m told Joe has also agreed on this ,however, if I really want to go, they’ll let me.

I’m happy to stay, Toby is pleased about this , telling me that they think it is definitely in my best interest to stay tonight and rest up as much as possible. I’m under strict instructions to rest up, get as much rest and sleep as possible so that they can send me home- hopefully tomorrow fighting fit and on top form which they’ve agreed I’m not quite there yet saying how my daughter needs me to be at my absolute best and although I’m doing well they want to see me doing better to know I’m fully OK to be home and mummy again.

17:16–  Another Alex update for you to lighten things and to make up for how quiet I’ve been today. Alex has started to become incredibly rude telling Betty- who is such a lovely HCA to go away, she wants treating by a “proper nurse”. Alex has stepped it up a notch were no longer pressing the call button,instead now…. she’s pulling the emergency buzzer. Refusing to turn it off until Roisin her allocated nurse comes to see her, for the record Roisin has already seen her numerous times and has told her she needs to do the medication round for all patients (this is what Alex is after- her medication)

Roisin has explained to Alex, the more times she stops the slower/ later her medication will be as she explains she cannot keep stopping especially when some patients medications are time dependant.

Alex has now begun kicking off any and all staff who pass. A couple of passing doctors have had a word with her about her behaviour and how staff are working their hardest and to give them a bit of respect. Alex has been asleep for the majority of this afternoon.. so I think I’m in for a fun night.

17:39– I jump out of my skin, apparently the bed next to me which I had believed was empty ,actually is in fact occupied as the lady begins shouting ” sister, Sister, sister , Nurse, nurse, hello nurse” at the top of her voice and pressing her buzzer too, apparently either joining in with Alex, or giving her a run for her money. I debate whether perhaps i should, too?! Can’t beat them. Join them, right?! Honestly .. I’m fairly sure I’m on some kind of prank stitch up show and am half expecting Ant & Dec to come bursting in any second now.. honestly, you can’t make this up. Surely this can not be real?!

19:54– Alex and her little mate are both still very much going at it alternating between them. Honestly, I’m sure they’re egging each other on now.. It’s like being at the circus..

A new patient has arrived on our bay. I’m half tempted to shout out. Welcome to the mad house. I just hope she isn’t going to add to the madness. It’s a 4 bed bay that im on. So far, I’m outnumbered. I could use a teammate to help keep some sanity. Otherwise, I will need that dementia screening. let’s hope the newbie is on my team..

Safe to say I like this new lady and she’s definitely on my team,she’s barely been on the ward a few minutes before she’s put the pair of them in their place , the lady next to me who is still shouting ” sister, Sister, sister, Nurse, nurse, hello” has also been blaring her music ,when I say blaring .. I mean.. blaring.. I believe it’s some kind of religious prayer music ( I could be wrong, though not thst it matters it’s just it’s played at specific times from late afternoon all through the night until early hours which makes me suggest it could be) I couldn’t care less if it was Harry styles,madina, westlife, Jedward or the local drunkard… anyway new lady just asked her nicely ” do you mind turning your music off or at least down or using headphones please it’s far too loud  I’m not feeling great and don’t want to be hearing it”

After a few times of being asked and newbie loosing patience she does eventually turn it off.. Alex of course has got involved when there was absolutely no need and has turned it into an argument between herself and newbie… here we go….

8pm- some how all 4 of us are now caught up in the argument.. fantastic…

I mean I guess at least its 2:2,but yeah so much for me resting.. I’m not one for confrontation or conflict- I can’t bare it,I absolutely hate it. However I some how got dragged into it and enough was enough I could no longer bite my tongue.. dear god..  honestly the red head in me was showing through now- when I go.. ohhhh I go…

Alex had begun accusing the new lady of being racist.. what?!  Skin colour and race had nothing to do with it.  Newbie was NOT being racist, she explained this calmly to Alex saying how she wasn’t being racist and she didn’t care what music it was or wasn’t, who sings it, whether it’s a TV programme or a phone call it doesn’t matter what it is you don’t blast it out ,especially in hospital.she explained perhaps she had gone about it wrong but she just needed quiet.. which is absolutely perfectly reasonable a request. Newbie ,let’s call her Rachel explains fair enough some things can’t be helped such as someone pressing the call buzzer or medical equipment, but music and to that level isn’t necessary , Rachel explains she’s not feeling great and just doesn’t need this on top of everything.

Alex of course pipes up with ” well I’m not well either” before going on to point at myself and the lady next to me  saying ” but you two aren’t even unwell” Alex continues on pointing at me saying ” and YOU have been so rude and noisy” this is when I loose it… I interject ” excuse me? Me?! How? When? I’ve barely spoken to you besides when you said good morning you’ve had nothing but an issue with me telling staff you don’t want to look at me, my light is too bright, etc so how exactly am I the problem? When you’ve asked me a question I’ve not hesitated in helping you, whether that’s with where your nurse has bone or ensuring you’ve still got your hot drink or food order while you’ve showered or gone to the toilet- which part of that has been rude ?!”  Finish off by telling her besides this I’ve kept myself to myself, but that doesn’t mean I’m not unwell, I wouldn’t be here if my consultant didn’t think I needed to be and how I’ll trust my team to make that decision not a fellow patient”.. phew.. blimey..

Alex replies shouting ( ill note I did not once raise my voice,I may have sounded peed off but I didn’t raise my voice or shout) how my friends were all too loud. I replied saying ” firstly I didn’t know they were coming otherwise I’d have notified you, not that I actually have to but they were in the area an wanted to surprise me as they know my family are miles away and how I’m a couple hours away from home, so I’m not sorry my friends want to do something nice for me and I won’t apologise for that. I explained calmly myself and all three of my friends who had visited are deaf. I go on to explain it is incredibly hard for me and my fellow deaf friends to hear in here, especially with all the background noise – machines, buzzers, people coming and going, conversations etc. I tell her this is part of why I’ve been so quiet because I cannot hear- strange how she was only saying I was ” too quiet earlier now all of a sudden im too loud ?!” If myself or my friends were too loud at any point then I absolutely apologise but explain instead of waiting until now she should have spoken to me or mentioned it yesterday instead of waiting over 24hrs to raise it. I explain had she have mentioned it yesterday we could’ve dealt with it then and there instead of her sitting brewing on it for this long. We need to just be mindful of each other and repeat each others right to quiet, it was a bit rude and insensitive to keep shouting unnecessarily and blaring music..

(I hasten to add she slept the whole time my friends were here ,so we couldn’t have been that loud..) a nurse walks by and tells me on the quiet that neither me ,nor my friends were too loud.

Where this version of me came from,I don’t know but honestly I’m kind of proud of myself. I do partially wish I had kept quiet to keep the peace as essentially they are still my neighbours/ room mates and you should always love thy neighbour. There’s no point in not getting along or beinc insensitive,  but I know keeping quiet would have been the wrong thing to do,especially when Rachel needed someone to stick up for her.

We absolutely won’t mention all the hullabaloo and fiasco Alex had caused though… there was absolutely no need for the race card to have been played,it wasn’t anything to do with race I couldn’t care less if someone is purple, yellow, blue, white, black,brown, unicorn, rainbow coloured  I don’t care.  Human is human, regardless of colour a person and a human,everyone deserves respect. Alex is again kicking off about the curtains, Rachel gets out of bed and says ” do you want a hand,here I’ll help” before proceeding to shut the curtains for her. 

Rachel came over to me after having closed Alex’s curtains and thanked me for sticking up for her, Rachel asks is it always like this? Ermm.. yeahh it’s entertaining night life I say.. good luck were in for an interesting night,I tell her . The next thing we know Alex’s reported myself and Rachel to ward staff for being racist…although strangely since she made this report she’s gone strangely silent..I wonder if staff have said something?

20:47– Alex has gone to the toilet so Rachel has come back over for a chat, I’ve briefly filled her in on Alex’s antics and buzzer addiction. Rachel tells me she’s worried about the racism report and says she’s not racist and how her partner is mixed race. I try to reassure her not to worry she didn’t say anything offensive and that Alex has a bee in her bonnet with everyone, she’s been complaining left right and centre about everyone and has made numerous reports against staff too. I still can’t get over Alex telling me I’m too loud, especially as Betty has been asking me a lot today if I’m OK as in her words ” you’re very quiet today May, I’m very concerned about you”  but yeah you know me… loud mouth nelly..

22:00– my observations are done,all looks OK, my temperature seems to be back to normal, I thank the nurse as she finishes up, she doesn’t get much outside of my curtain when a member of staff tells her ” I’ve sorted bed 43 transfer” Huh? That’s me..?? She must have mistakenly said the wrong bed number surely?

22:52– I’m woken up by a nurse who tells me ” we’ve requested the transfer you will be moving later were just waiting for the bed to be ready”.. I’m confused, this seems a little odd ,nobody has mentioned anything about me moving bed or ward,until now? I mean there was mention of potentially moving me to a side room yesterday after audiology? Is this what this is? I assume they must have me muddled with someone else.,unless perhaps I am moving due to the whole argument situation earlier? Maybe they want to split us up? It seems strange why I would be moving, especially when I’ve been told I should be going home after ward round tomorrow.  I ask why I’m moving. The nurse says she’s not sure why there’s just a request on the system that I need to move..okayyy.. I ask where I’m moving to?  “You need moving to the surgical ward,” the nurse tells me.. okkayy… and you don’t know why I ask? No, sorry, there’s just a message on the system that says you need to be moved to the surgical ward ,it shouldn’t be long now.

Due to this revelation I try not sleep,as I’ve been told it shouldn’t be too much longer and generally I’m unsure what is happening.Ive also come to know that I’m extremely hard to wake once I do fall asleep, as all the doctors and nurses have so far found, once I’m asleep I’m dead to the world there’s absolutely no waking me. I’m slightly easier to wake when I’ve left my hearing aid in,so guess what.. tonight I will be doing exactly that.

23:30 – I’m still here, still haven’t moved and no further update.

00:00– I must have fallen asleep as I’ve just woken startled- nobody has woken me,I think I’ve obviously realised I’ve fallen asleep and that I’m trying not too that I’ve managed to wake myself. I notice from this point onwards that I keep falling asleep but regularly waking myself, and it’s taking ages to go back off. I’m guessing that I’m not moving after all ?

UCLH Admission 06/02/24

Tuesday 6th February

5:10am I arrive on the ward .I transfer myself from the wheelchair  onto the bed. Handover takes place between the Emergency Care Unit nurses and Ward nurses. My allocated nurse comes over briefly, introducing himself, and does my observations, I don’t catch his name.

5:30am – Upon completion of handover and  observations, my allocated nurse tells me that  I need to change into a gown now. ” Oh.. OK,” I reply, confused but willing to oblige (no, I didn’t ask him why as he had a strong accent, and I was already struggling to understand and hear him. Understandably, he was  speaking quietly due to the time and not wanting to disturb other patients) He disappears off and goes to fetch me a gown. 

I’m unsure why I need to wear one,  the patients in the two beds opposite are wearing their own clothes/ pyjamas?  perhaps  he/ The Ward staff  know something I don’t?  or something I haven’t yet been told? Perhaps I’ll be told more shortly by morning staff or doctors at handover ..

A few questions are raised in my mind:

1) Is the Osia being removed?

2) Am I being prepped for surgery?

3) Am I expected to be staying longer than just overnight? As surely, if I’m only staying overnight as planned, I will be discharged in a matter of hours ?

4) Is it in preparation for the scan? Perhaps I need to wear a gown for safety reasons for the scan ? I know initially I was told it would be an ultrasound, but perhaps Joe or someone has ruled to skip this and go straight to CT?

Which brings me onto the next question..

5) Am I having a CT instead of an ultrasound?

Otherwise ,I question why I need to change, especially now it’s nearly 6 am, if I’m going home? Something definitely doesn’t fully add up,but I’m sure I will soon find out what’s going on.

I check ,my go to in situations like this .The Mychart app. I’ve found when you’re admitted you can access a lot of information on here relating to your admission an what’s happening, it doesn’t tell me anything relating to why I’ve been given a gown. It does, however, suggest that I’m here until at least Thursday, according to the medication schedule. This hasn’t been communicated with me. As far as I’m aware, I am/ was due to go home this morning.

5.40am-observations ,checks ,medication and handovers  complete ( yes more happened after my last update) after sussing out where the toilets are (literally  within sight, just outside of the bay)  I’ve changed into my gown. I try to get some sleep.

6:00am-, I just start to doze off  when all of the ward lights are fully switched on. I’m also due more medication shortly after this. I check the time it’s 6:00am.

I can’t lie. The bright lights have woken me up, and there seems to be a bit more hustle and bustle going on with medication rounds starting for the morning. Today, I’m feeling alright,although I am experiencing some nausea ,localised headaches, and the off random shooting pain every so often. I think some of this is definitely a factor of lack of sleep and nutrition.

I’m really hoping Joe Comes round today ,just so I can figure out what is happening. What the plan is and to see someone who knows ,not only me but the implant inside out and back to front. A few times now, I’ve been asked the following:

• What side is it?
• Is your left ear reconstructed too?
• Which ear is your better ear?
• What’s your name? – yes, really.  I understand some people like to be referred to as different names, e.g., Elizabeth, may like being referred to as Liz, or Margaret might like being Maggie. They don’t mean this,they mean my actual name. So far, I’ve been referred to as Harvey since arriving on the ward by my allocated nurse.. I’ve corrected him multiple times, but I’m still Harvey,  . Oh, and I’ve also been referred to as May, again not my name…well… it is, but it’s my middle name. No wonder there’s so much confusion over my name.. certainly doesn’t help the whole deaf situation, listening for my name is hard enough work as it is,let alone when we appear to be playing roulette as to which of my names we use. Touché though as I’ve kept them on their toes now its there turn..

Its all fun and games, although sadly nobody has attempted to stick a thermometer in my right (reconstructed ear) as of yet, this is always a good laugh watching their faces when they suddenly realise.

7:00am–  The ward is certainly springing more and more into life with morning staff beginning to come in, patients waking and moving about, cleaning teams starting their day etc . I’m awake .I’m up. I’ll sleep later, good job I’m used to sleepless nights as a mum That it doesn’t really affect me, to be honest I’ve been a rubbish sleeper for years and I’m used to hospital life,so it’s nothing I’ve not encountered multiple times before. I can’t lie though I do begin feeling a bit nauseous, however I put this down to lack of sleep and lack of food,as all I ate yesterday was half a sandwich before I knocked the other half flying in true, classic Bethan fashion.

7:30 a.m. The breakfast trolley comes rattling around the ward. I’m not usually one for breakfast, but I know I need to eat, and it will most likely get rid of the nausea,or at least help ease it. I don’t doubt that some is sleep deprivation related to. I accept two slices of toast and a coffee. The toast is barely toasted. It’s practically just bread and butter and cold, and the coffee… I’m  not rating it ( I am rather fussy and particular with my coffee, though. Perhaps I’ll stick to tea from here on in.. it may be easier all round). Mind you can’t complain too much ,I’m fed and watered and have a jug of water now, too.

7:40am– I finished breakfast, ordered  lunch and dinner  (just in case I’m still here for any reason). I’ve had my IV antibiotics, and I’ve had my painkillers .All observations are up to date, and generally, things seem to be quietening down again. I decided to nip to the toilet to freshen up ( told I can shower,but not allowed until later this afternoon  or evening- no idea why) and dress back in my gown ( from previous expirence wards like you up washed and dressed as early as possible)

I decided to attempt to get a bit of sleep before ward round commences. Typically, from years of being in hospital, I tend to find ward round starts around 10/11am, so I should be good for a couple hours sleep before then.

Once washed and dressed back in my gown (I’m told I need to remain in it) , I head back to my bed, get myself comfy.. well as comfy as I can as I’m finding it uncomfortable to lay fully reclined ,settle down, and close my eyes in an attempt to sleep.

A minute or so later one of the nurses comes to open the blue curtains surrounding the bed as she says they have to be open for safety reasons, absolutely fine by me as actually it makes things easier in terms of communication anyway.

8.10am I lay back down and begin to close my eyes. Just as I go to do so ,I see a familiar face. It’s none other than Joe! It appears he is catching up with the nurses. I can see him and a few other members of staff glancing in my direction- so I’m putting two and two together.

As expected, Joe is heading this way. He’s dressed in blue surgical scrubs and has a colleague with him who likewise is dressed in scrubs with her hair tightly tied back in a neat bun.  I do wonder for a split second, if he coming to update and consent me for surgery ,given I’m in a gown and not allowed to change out of it, on a ward as of 5am  and Joe is in scrubs and with a colleague.. is this it? Is this the end of the osia?

  If this is the end, then  it is,  i don’t know what else I can say really, but at least it will  be Joe doing the removal, and I can say I gave it a try. We gave it everything. I just wasn’t one of the lucky ones, I didn’t quit or give up,it just wasn’t to be.

The fact that I’ve had breakfast is the only thing that makes me say I’m not having surgery,  although I guess I could potentially be this afternoon as that would work with fasting times… 

I only know of Joe operating on Monday’s and Friday’s, but I guess if its an emergency situation and I’m his patient,and I think he knows I would want him to be the one to perform any surgery .  likewise, I’m fairly confident that Joe would want to be the one to do it, too.

Joe’s first words are, ” Oh dear. oh dear. What happened?” he looks absolutely gutted ,so hurt and upset,not his usual happy smiley self.. I can’t lie it’s upsetting seeing him upset and hurt, though I expected this , as  it’s not a situation either of us foresaw or wanted to be in,especially so soon after activation,though we always knew there was a risk,we hoped it wouldn’t come to this. yet here we are.

It’s safe to say.. Joe is gutted that im here and so soon after activation too.I am, however, told my Infection markers aren’t awful, which is very promising, and my blood pressure is fine,no concerns there.  Joe had a good look at the osia and the bump, Joe tells me it doesn’t look too awful. However, he is in agreement with Toby. It is swollen. 

Joe asks how all this came about, any knocks or bumps to it? – nothing, which draws a bit more of a blank and mystery, really. Due to there being no swelling in my neck and the fact there hasn’t been for almost a week now, Joe rules that we don’t need to do the neck scan.

Current plan is ,Joe wants me to stay in hospital until a minimum of tomorrow morning. However. I’m under strict instructions.No rushing home, I’m told that if I’m not feeling great tomorrow, I have to be brutally honest and tell them. No more brave faces. I have to be honest.

While I remain in hospital they will continue to keep going with the IV antibiotics and pain killers,  he has said unfortunately he thinks going forward I am going to get some pain , due to everything with my previous implant and given that I’m here in this situation already isn’t really fairing well in terms of no pain going forward, but hey no pain no gain right?  I also, unlike the majority of osia recipients, do not have muscle to further protect my implant. 

Joe has said he’s pleased that I’m still in good spirits and smiling, I mean, what else can you do, really? Getting upset isn’t going to change anything. While I’m still in good spirits, Joe is in agreement. We absolutely keep fighting and keep pushing forward. We keep the implant in as long as we possibly can. It stays,no matter how many times we have to do this, we fight.

Joe thinks that on call have panicked about the size of the bump ,but as Joe says I’ve always had “quite a bump” I explain to Joe I did try to explain this last night, but equally I can understand where on call would have been coming from too,whereas of course Joe did the implant and has seen it all the way through so knows it inside out (literally) and back to front.Joe agrees unless you’ve seen it you don’t and wouldn’t fully understand or know.

Joe has suggested that we keep photos on the system going forward so that if this does happen again, whoever is on call will be able to compare to what it typically looks like.

Joe is concerned that I’m unable to hear with the osia, he’s had a look at the processor removing it,turning it off an on and placing it back on to test the difference. It hasn’t made any. Joe is going to speak with audiology and see if they will see me today ,as he’s concerned that there could potentially be damage to the internal elements of the implant and or something going on under the surface. I’m told that if audiology can see me , he will have to get someone to wheel me over and accompany me…

Great.. I get it from a safety view point if anything happens to me between stepping foot off the ward and returning then they’re liable and in trouble as im in their care, I really do, but I’m fine,my legs work and I don’t want to be a burden taking staff away from the ward or resources someone else may need ,I would say more urgently but I don’t need it full stop.

I’ve been told from now on even the slightest little change that I have to contact the office and come up here,I’m not to leave it. Whoops, point taken, though. I definitely agree. 

9.13am – A health care assistant comes over and asks if I would like her to re-fresh and remake my bed. I explain to her I only arrived on the ward just after 5am but thank her anyway for the offer, she decides yes it’s probably best not too as my bed would have been freshly made just before I arrived on the ward.  I’m given a  towel, toothbrush, and paste ,but again, I’m reminded not to shower until later.

9.15am– Ward round ENT doctors have arrived on the ward and come to see me. They’re both aware that I have already seen Joe this morning, however they say slightly different to what Joe does, in that they want to do the scan of my neck, despite Joe having ruled against it.

The male ward round doctor (he didn’t introduce himself other than hi I’m one of the ENT doctors) tells me that there is absolutely no swelling, everything he can see and feel is just implant ,and how there is absolutely no infection, nor infection markers,however he does at least agree on something. My skin is red… that’s something, I guess… I’m totally on team Joe. He knows what he’s talking about, and at least Joe takes the time to introduce himself, too…

Thankfully the ward doctors didn’t go against Joe in terms of removal and agree it can stay in place for now. Mind you if he had said it needed to come out,I  would absolutely be telling him he needs to speak to Joe and get Joe down here and throwing my toys out the pram, massively kicking off. Mind you it wouldn’t be removed as

• 1)  Joe is my consultant and oversees all my care- he’s not agreed to the removal.
• 2) myself and Joe have already had a conversation this morning about it staying put
• 3) I absolutely would not be signing the consent forms, therfore meaning they couldn’t do it.
• 4) I wouldn’t be letting anyone other than Joe operate, and I know Joe is on the same page as me, so he wouldn’t do it or consent to doing so without me expressively saying it’s what I want- which it isn’t and Joe knows this from our conversation.

9:30am – as of yet, nobody is able to answer why I can’t shower or why I’ve got to wear a gown. All I know is I was told last night if it was a rip roaring infection then I would be going to theatre as an emergency for it to be removed, however neither Joe nor on call have said there is a rip roaring infection and no mention of theatre. I’ve had nurses asking, ” Oh no, what’s happened? Are you going to theatre?”, ” What time are you going to the theatre?” Even attempting to say I’m nil by mouth .. huh?! Nobody knows who said this or where it’s come from .. perfect..  got to love a little bit of mystery on a Tuesday morning,I’m wondering if the night nurse has gotten confused by what Toby said, perhaps?

9:35am – Honestly ,I love Haddy. She has just come over to the hospital/ ward to see me and how I’m doing after the scare I gave her yesterday…whoopsie… Haddy commented on how it’s nice to see that I’m still smiling and laughing. Haddy explains to me that Joe wants me to see audiology, and is trying to get this sorted for today and that she too is on the case, while chatting with me I’m not sure if Anne phoned her or she phoned Anne,but anyway.

Haddy speaks to Anne on the phone and explains the situation and why Joe wants me to be seen today if she can squeeze me in. I love Haddy, audiology were fine about squeezing me in. However, they were not budging on their advice of not wearing the processor.

Haddy being amazing without hesitation advocated, stepping in fighting my corner telling Anne ,this is NOT an option, saying how I NEED the processor , Haddy explains how I cannot hear without it and how detrimental that is especially in the setting that I’m currently in, stressing the importance of me needing to wear it but equally the importance too of why were needing to know and  find out  if and what damage has been caused internally. It’s sorted ,Haddy has won, and I have an appointment for 1.30pm .

Haddy goes to find my allocated nurse and brings her over to my bed and says how we need to chat together, so everyone is on the same page and knows what’s going on. Haddy informs my nurse that I have an audiology appointment at 1.30pm today at the ENT Hospital, the nurse asks where it is and for the details, Haddy explains its literally a couple minutes walk and I know where it is and where I’m going. The nurse tells Haddy she will arrange for someone to wheel me over.

Haddy, who can read me like a book says , but she can walk she’s fine to walk herself over, aren’t you? Looking at me as she says this. Thank you, thank you, thank you. Yes, I agree with Haddy, I’m fine and happy to walk myself over.

The nurse isn’t backing down. Eventually she compromises and says well maybe a member of staff could walk with her then, I’m happy with this if I can’t walk alone ,but it means I don’t have to go in a wheelchair where I’ll feel like a burden and as though I’m wasting resources I’ll take it…

It’s agreed they’ll sort out someone accompanying me although Haddy is still fighting my corner saying I can go alone and how this is a waste of staff resources by accompanying me when they’re needed more on the ward. Absolutely.  I love my team who can read me like a book and fight my corner like this. 

Ultimately we don’t get a final agreement of whether I’m walking alone, going in a wheelchair or being accompanied, but regardless it’s sorted in terms of I will be going to the appointment and ward are in agreement to allowing me to leave to attend.

I can’t lie I’ve been dreading audiology on the basis of being wheeled over when  I can absolutely walk over as I don’t want to be wasting staff time where they could be helping someone who needs it,  I dont want to be wasting or taking resources away from another patient who may need or be waiting on that wheelchair. I feel super guilty that a member of staff will have to even accompany and remain with me,but i can see the ward staff point too, though.

9:54am–  Talk about antisocial. The girl/lady in the bed opposite me has just asked the student nurse,I can’t remember her name and I feel awful that I don’t, especially as she is super lovely and friendly , anyway the lady opposite has asked her to shut the blue curtains around her bed.

The student nurse explains to her that she’s not allowed to, the curtains have to remain open for safety reasons, so that they can see patients at all times for everyone’s safety, but absolutely when a nurse, doctor or member of staff is seeing her they can be closed for privacy/ discretion then, otherwise its a no. The lady replies to this by saying, and I quote, ” Well, I don’t want to see her.” Pointing directly at me.. well ,how very charming. She didn’t even attempt to say it quietly or discreetly, she literally shouts it out for the whole bay to hear, that’s cool, shame I’ve got my ears on and I’ve heard it ..

mind you.. something tells me she wanted me to hear it somehow. It doesn’t affect me in the slightest, I actually laughed . I mean, I knew I looked rough,but I didn’t think I looked that rough.  When the student nurse looks over and catches my eye, she mouths ” I’m sorry” she has nothing to apologise for. 

Alex as I come to learn is her name,  ends up being a bit of a problem patient and its not just me she’s taken a disliking to , she doesn’t seem to like anyone.throughout the day she’s driving everyone mad. Quite literally every two seconds, she’s calling out to the nurses or pressing her call button to get their attention. To say I felt sorry for her when I first came to the ward, thinking staff were just being off with her… yeah, I take it back… 

its not even 11am and I’ve already lost count of how many times she’s shouted out ” excuse me, excuse me”, or pressed the call button its way into double digits though, potentially triples. It appears I’ve got rid of a groany migraine man and picked up shouty complaining  Alex instead… aren’t I lucky ?!

10.00am– a trolley comes round offering hot drinks,  I take up the offer of a cup of tea, though the nurse questions it saying I can’t have it ,I’m nil by mouth .I’m not, and I can and do have my cup of tea.

10.30am– a trolley comes round offering everyone a hot drink and biscuits, again this raises questions amongst nursing staff whether I’m allowed to have a hot drink or not, as they’re still querying nil by mouth. I’m not nil by mouth . I do accept a cup of tea, I say no to the biscuits, but I’m given a packet in case I change my mind later.

11.30am  a third trolley has come to do the rounds ,this time offering soup and bread. This is new. I can’t say I’ve ever known this to be a thing. Mind you I don’t ever recall being offered 3 hot drinks before mid day either.

11.36am– not much to report there’s been a lot of coming and goings with nurses, HCA and the lovely student nurse coming to check on me, do observations,medications and IVs . The only thing I can really do is an update on shouty needy Alex.. she’s literally pressed her call button THREE times in the last two minutes alone , yes I’ve counted and timed it. There isn’t much else to do,I can’t focus on my book with her needing something or someone every two seconds . The latest is she’s now apparently logging a formal complaint because it’s been 3 hours, and she hasn’t yet met the nurse looking after her.. no, this may be so, but I’m fairly confident she’s met every other member of staff  going though, even the poor house keeping staff haven’t been safe from her wrath.

Honestly she’s just been constant, for example she will buzz because she’s in pain an wants pain relief- fair enough, genuine reason ,however anything from 30 seconds- 2 minutes later she’s buzzing asking where the pain relief is, have they asked the nurse, why hasn’t she had it yet or just buzzing for the hell of it.

12.00pm– lunch has come round ,I’ve opted for a falafel sandwich and an apple with some juice, mostly because I wasn’t originally sure if I would be here or not, if I wasn’t then the food wouldn’t go to waste and could be given to someone else as the sandwiches are sealed in original packaging, if I was here which I am I didn’t know what time it would be served and didn’t want to risk opting for a hot lunch of a jacket potato in case of going for the scan / audiology etc.

13:00–  The lovely student nurse , she needs a name so because I’m awful and have forgotten let’s refer to her as.. Lucy?  Lucy came over with my allocated nurse. Again, I’m awful and can’t remember her name, I want to say it was sian? She was Irish… I think ? She, too, was very nice. Anyway, they both come over,  I’m told Lucy is going to accompany me now to my audiology appointment.

The agreement is… I can ..walk! No wheelchair! As long as I go now , we take it slowly and that I’m being genuinely honest about feeling OK and that Lucy is to remain with me throughout. I agree with this .it’s much better than a wheelchair that I don’t need, I wouldn’t have an issue with going in a wheelchair if I needed one ,but I know I’m good. My appointment is scheduled for 1.30pm for 90 minutes,I feel awful taking Lucy away from the ward for that length of time, though.

Lucy is super lovely. Honestly, she’s going to make an incredible nurse. She is super friendly, very chatty, and a genuine down to earth person.  Walking over to audiology I felt really lightheaded, heart racing, abd feeling nauseous.

Once at the ENT Hospital, she takes a back step allowing me to navigate and take the lead of checking in and allows me to go into the appointment with Anne on my own telling me she will wait outside for me,I didn’t even ask she was just like ,it’s fine I know you’ve got this and that you’re fine in the appointment without me, however if you  or audiology do need me I’m right out here.

To be honest Lucy accompanying me was more of a safety measure to ensure I got from A to B and from B back A in case anything did happen, they would be liable as I’m under their care.

13:30– Anne calls me through and Lucy reiterates to me,but also to Anne that if either of us need her, she will be sitting right outside waiting.

The audiology appointment  doesn’t go well. The connection between the internal and external magnets has been impacted, and the connection has dropped. My hearing has also dropped- were hoping that it is just because of the swelling and infection- I will need to have it checked again in a few weeks.

Anne is concerned that there is too much swelling in the way for the magnets to be able to have as good a bond/ connection as they’ve previously had. The hearing programmes and levels on my Osia, as a result, need increasing , Anne increases it ever so slightly. It still needs to be turned up further , however, Anne is reluctant to do this. 

Despite Joe and Haddy saying that I am to continue wearing the Osia, Anne has ruled against it. saying absolutely ,no way. The processor has to come off and be rested until the swelling has gone , decreased, or we know exactly what the swelling is.

I’m even given a box to store it in, as Anne having known me for years can also read me like a book and knows there’s absolutely no way I’ve packed the case and therfore if I don’t have a case, I’m going to have to wear it in order to keep it safe.. right?

Anne has definitely been speaking to Joe as she too tells me that from now on even the slightest little change I have to contact the team  come up here ,not 6 days later although I technically contacted them 2 days later on the Thursday. (If we go from the date of swelling) the earliest I could get in to see anyone was yesterday ,which I  took. Equally, I get their point, though, because I probably should have contacted last week instead of being “fine”

Anne tells me it is very clear that my body doesn’t like something about the implant. However, we just don’t know what- is it the internal? External? or both? That my body doesn’t like,  Nor do we know why.

I  felt really lightheaded all through the appointment, so much so I had to strip my jacket off as I came over very warm all of a sudden , lightheaded and dizxy to the point I felt like I was going to fall off the chair.. of course, I keep quiet on this, though, because it’s me..

I came out of the appointment, and the lovely Lucy was still waiting for me as she said she would be, she asks how it went and noticed I’m no longer wearing the Osia. I fill her in on what has happened and been said, she’s gutted for me and tells me she will feedback to my nurse (Sian) and the rest of the ward team when we get back, she tells me how she will be ensuring that they’re aware I’m not allowed to wear the osia, to ensure I do actually behave and leave it off , as well as ensuring they’re aware so that they know I will be struggling to hear and to adapt to this. How lovely is that ?!

Lucy comments, saying how she doesn’t understand how I’m still so super chilled about it all, taking it all in my stride and still smiling. I don’t really know what to say to this, I guess for me this is normality – it’s as normal as going to the shops to buy food. I explain how I don’t see the point in letting it get me down as it doesn’t achieve anything,I find it easier to just ride the waves of it,keep a clear focused mind so I can just focus on what I need to do and get where I need to be. Apparently, my strength and resilience are a true test of my character, and she can’t believe how well I’ve taken everything in my stride. Despite appearing well,  I’m told clinically I’m really not.

Lucy comments saying how I don’t have to be ok ,if I’m not and that it’s OK to show emotion and get upset about things- it’s true it is,but it’s just something I don’t do.

I guess It’s normality and I just have to get on with it,I don’t want anyone worrying about me. I’m fine.im always fine. I’ll figure it out and get there,it just takes time sometimes.

Lucy tells me that she is going to do everything she can to help me and comment on how it must be so frustrating when nobody signs or understands the impacts of being deaf. Bingo. It is. Lucy tells me I may be better in a side room  and how she will speak to the nurses to see if this is possible, as she’s fairly sure there are at least 2 or 3 free, so that there is less noise of machines and disruptive patients, which she says must be an absolute nightmare.. (we all know which patient she is referring to, though she doesn’t say it)  honestly, how is this only her first ever nursing placement?! she is going to make the best nurse.

ENT/ Otology, you need to snap this one up. She’s a keeper! We NEED nurses like this in ENT and or Otology. I do wonder if she has experience with the deaf community or a deaf family member or friend to be this amazing and clued up 🤔

We take a slow walk back to the hospital as I’ve stripped down to my t-shirt as I’ve come over hot, I’m fine. The hospital was just really warm, however Lucy isn’t taking any risks abd keeps ensuring that I’m ok, that I’m feeling OK, that I don’t feel faint or dizzy teasing that she will get a wheelchair if needed-  I also know she’s really not joking that she will if needed. While we’re walking slowly back to UCLH, I take in the fresh air. It feels so good to have fresh air

2:30pm Once back on the ward the nurse looking after me – Sian asks (in a nice way) where we’ve been saying how she thought we had both done a runner she was wondering if we were going to come back, admittedly it is now just after 2.30 pm so we’ve been gone just over 2 hours.

I head back to my bed as I’m told to go and rest,while Lucy speaks to my nurse Sian and updates her on the appointment. Lucy tells me she will come sit with me in a bit  for a chat and to keep me company – super cute.  Lucy then takes her lunch break.

Sian comes over to do my next IV and painkillers, she’s super lovely telling me if I need anything just ask, how she’s fully aware of how the appointment went and she’s updated staff to make them aware to be more conscious of how they’re speaking to me to ensure I’ve heard etc- super lovely and asks if I’m doing OK after the appointment- again super lovely.

Betty has naughtily remade my bed with fresh bedding while I’ve been at the appointment – she tells me she thought I could use it after the appointment. Betty also checks. I’m doing OK and says she will be keeping a closer eye on me from now on, how everyone’s here if I need them or want anything.

Everyone is certainly taking things much more seriously now, not to say that they weren’t before, but I think the outcome of the audiology appointment has shocked everyone. It wasn’t what anyone was expecting. They’re now realising I’m not doing quite as well as they had thought or hoped I was.  Yes, I’m most likely going to get a telling off from Joe for that one…hey, what can I say.. I’m alright…

15:10– My friend Sophie, who lives nearby, pops in to see me and for a chat . She was very naughty delivering chocolate and sweets,but it was greatly appreciated,it was also lovely to catch up as I don’t get to see much of Sophie tgwze days around her work and me being a full time mum,were both busy ladies in different ways.i last saw Sophie in June when I lost my bank card  in London… let’s hope I don’t lose it this time..

16:30– my friends Jasper and Ellie, from the Deafie Crew WhatsApp group (if you know,you know) pop in to visit me.again they too come baring chocolate and biscuits , super lovely, it’s been a while since I last saw Jasper, the last time I saw him was in May for Samantha Baines book launch ,that we were both interviewed for. Safe to say my signing skills are verrrryyy rusty and absolutely shocking. Massively, I need to brush up on signing.. oh dear.. sorry again to both of you.

It was a massive boost, and it’s safe to say it was a welcomed distraction after this afternoons appointment to be able to sit back ,laugh, chat, and attempt to sign with good friends. It’s times like these that you realise who really is there for you,who you can rely on, and who stretches out a hand when you need one. Admittedly, one of my other friends, Eleanor, has said about coming up to see me as she works nearby, too ,so there’s a chance she could be popping in tomorrow around work if I’m still here. Huge love to the deafie crew and in general to the deaf community, we really are a family who all have each others backs. ❤️

17:46– OK… so.. the outcome of the audiology appointment from earlier has sunk in a little more now,where I’ve had quiet abd I guess I just don’t have the option of burying my head in the sand,distracting myself or busying myself in mum mode or activities with my daughter .I can only sit ,think,replay,think, and replay some more. I am fine, honestly. I am. I’m not just saying this. I promise.

The nausea, localised headaches,numbness, and shooting pains  from this morning still haven’t worn off (they’ve  been there all day even when friends were here) it comes and goes in waves. I’m hoping with some sleep (I’ve decided I’m going ears free tonight.. I think) I will feel a bit better, as I’ve not slept properly for a good few weeks now, and it was bound to catch up with me eventually.

Sian ,Lucy and Betty all come to check on me to make sure I’m doing OK, my  blood pressure is text book for the first time ever and my temp  has stayed around 36.4 better than the 34 it was hitting at home

Oh.. apparently, there’s a new staff member to add to the list that can see right through me… the lovely Betty she keeps asking if I’m alright and giving me “the look” Betty is so lovely but she does keep calling me May,where she’s so nice I just don’t have the heart to correct her.

I’ll take May. It’s at least closer to my first name. It’s a girls name, and yeah, it’s not Harvey like the nurse kept referring to me as last night.

It’s bad enough being deaf listening for my name, let alone when staff are playing roulette picking and choosing between all 3 of my names, or the occasional miss.I mean,I guess it’s payback for keeping them on their toes that they’re now playing me at my own game, touché

Just because I know, you’re missing it.. Alex update, don’t fear she’s still causing her usual chaos ,it’s kind of become normal and familiarity now, when my friends were visiting earlier she was still going on and constantly at her buzzer, which all three of my friends picked up on.. she’s something our Alex .. she’s been sitting in her bed and for the last few minutes all she’s repetitively said is ” I have a question” no idea who she’s directing this to though as there’s nobody about,I assume she’s just shouting out until a member of staff eventually answers..

No.. it turns out she’s directing it at me. Its me she has a question for…  oh hello! Are we suddenly friends now? Perhaps she’s not a morning person and a bit of a prickly hedgehog first thing? Either way…here we go ,I’m bracing myself… Do I need my armour on ? Is she about to launch another attack at me?

Her question… why am I so quiet? She actually asks the HCA who walks through the bay at this exact moment turning her question from me to the HCA asking her ” why is she so quiet?” Pointing blatantly right at me, essentially the HCA says I don’t know, maybe ask her? She says it with a bit of a half laugh, half smile. Alex directs the question to me .. I mean…I don’t,.. how do I even answer this?

I’m half tempted to reply ” oh sorry I’m not causing a ruckus and sounding like a herd of elephants with no respect or regard for staff or other patients,I must have forgotten myself for a moment and where I am…”.. of course im a quiet shy thing so I don’t say this,I’m really not shy or quiet but none the less what I actually reply ” oh sorry I’m deaf so I actually can’t hear very well with the noise/ everything going on ,on the ward”.. its a dig,but not.. she doesn’t reply or at least not that I’m aware.She

19:35– Alex goes quiet she’s clearly satisfied with my response, perfect. A few minutes later a nurse comes to do checks on Alex, when Alex turns to her and asks ” can you turn her light off ? Its too bright its hurting my eyes” again Pointing at me .. I could understand if it was her own light, nope it’s my light she wants off. The nurse walks over to my bed and switches my light off, obliging. Not once asking or checking I’m OK with it.. ermm okay..  if Alex had just asked me I wouldn’t have minded but wow.. just.. wow..

19:54– I go to the toilet and shower. I feel like I’ve lost a bit of mojo after my appointment this afternoon, I’m cross at myself for this.i know I need to be and should be fighting back against this infection,showing it whose boss and not letting it win. Subconsciously, I think the reality of everything that happened yesterday is starting to sink in and dawn on me. Let’s face it,it did all happen pretty quickly.

Alex has disappeared off the ward ,typically, after asking for my light to be turned off, I will add. It’s lovely and peaceful. I’m definitely lapping up the quiet of no buzzer being pressed continuously or the sound of her voice shouting, ” Excuse me, excuse me. ” .. I may even have a sleep, you know!

20:51– I am so tempted to make shift   myself some pyjamas out of a bedsheet. Hear me out.. I’ve not lost my marbles,I assure you. I want to makeshift some pyjamas with the bedsheets wrapped around my middle and then put the gown on as normal. What? Why? Am I even on planet Earth? What planet am I on? Am I high on medication? No, I assure you I’m perfectly sane ,rational ,sober, and no hard medications have been administered or consumed. Welcome to an insight into Bethan’s brain and thoughts. Yes, it’s random. Yes, it’s a bit fruity, bit spontaneous, and nutty, but that’s me!

I’m thinking of doing this because the gown is.. well… a gown ,so it’s doing what gowns are notoriously famous for. It’s flapping about and exposing me in every which way possible and then some. My thinking is if I fold and fashion a sheet around my middle ,I can attempt to protect myself from exposure ,then fasten the gown tightly to prevent slippage of the sheet and keeping me firmly intact. Told you, onfe a girlguide always a girlguide. 

Sorry to disappoint, but no I don’t go through with it, I’m fairly sure if I did I’d get a few laughs though, most likely followed by the psychiatrists and a mental health assessment. I assure you I’m not mad… I … think…

21:01– Alex is back.. I can’t lie. I had partly forgotten she had disappeared off the ward, safe to say I’m very much aware she’s back again, though. 

I’ve just been told off by Sian … what have I done? Did I go through with the makeshift pyjamas? No, I didn’t. Have I lumped Alex one? No.. so what exactly have I done this time? .. I’ve been a bit of a doughnut.. I’ve been a bit of an idiot haven’t I… I thought my bed was broken,no, I didn’t do anything to it. No.. so I thought the bed was broken as the head of the bed wouldn’t go up, usually I know all the little tips and tricks to get it working, but the bed was having none of it, so I assumed I had a broken or faulty bed.

Rather than doing the sensible thing and asking for help or notifying someone of  my potentially broken/ faulty or just rebellious bed,I kept quiet. I was instead caught by Sian performing a girlguiding hack – propping the pillow up between the rail at the top of the bed and the wall.

Sian kindly but most definitely amused asked “you do know the bed moves don’t you?”  Oh yes, I quickly explain whats going on and that the bed doesn’t appear to be working, explaining  what she’s walked into. I promise I don’t need that psychiatric assessment. Sian comes over and has a fiddle ,she realises it is indeed not moving, nor responding to any of the tricks that would ordinarily work. Sian explains she just needs to give a patient an injection (where she was actually headed before walking on my antics) then she will be back. That’s absolutely fine.

A couple of minutes later, Sian, as promised, has returned ,Sian repeats the usual tricks again. The bed isn’t having any of it. Sian fiddles under the bed and tries the remote again. I’m not sure what she’s done,but she’s fixed it. Sian looks at me and says, ” You must have been so uncomfortable all day. Why didn’t you tell us or ask us to have a look?” I explain because they’re busy they have much more important things to be doing than fixing my bed,  sian smiles but tells me next time I’m to just ask that’s what they’re there for, they will always help regardless of how busy they are, comfort is important too and I’m not being a nuisance.

21:10– night shift staff are now on the ward and have had handover . I decide ok, I’ve been told off a fair few times today ,perhaps I can try the whole behaving ,doing as I’m told and being honest with how I’m feeling malarkey. When a nurse comes to check how I am ,I decide now is my moment.

I’m honest and tell her my reconstructed ear is turning red- when I say red,I mean illuminous rudolph nose red, red hot red  ( it was normal colour up until a few minutes ago) , how my reconstructed ear feels incredibly numb I can’t feel it at all, I have numbness in front of my ear and right cheek .. anddd that it feels like my reconstructed ear is being pulled tight  into the swelling , and I’m still nauseous with a bit of a headache…. it feels good to have been honest, but equally was did I just say all that out loud?!  Her response… ” Oh, OK, just let me know if you feel strange or funny. “..

I mean …. I didn’t quite know what to say to this. Do I need to feel haha funny ?! Or strange in the head?! Because I mean that’s up for debate, too, given earlier updates…

I think I replied with a bit of a pause before saying, ” Oh… okayyy… thanks”  to which she replied with, and I quote,” Well, you’re under the ENT Team, so that’s fine ,I’ll just give you painkillers in half hour. ” …  yes, I am under ENT. Surely, a change in EAR symptoms Is relevant and worth them knowing? Oh, and for the record,no, I wasn’t in pain. These were just new onset of symptoms … this is exactly why I don’t bother saying anything. It took me a lot to say that, and for what?

This is why I need Joe and or Haddy here permanently, mind you Toby was good so he can be added into the mix if any of them fancy being here permanently with me, cloning themselves or alternating 12 hour shifts to look after me that would be perfect. Please and thank you in advance.

I highly doubt the nurse even bothered to make a note of it or write it down, she was much more concerned about asking her dementia screening questions. Yes. You’ve read that correctly. Dementia screening. The questions she asked me were:

• What’s your name? I mean are they asking me for dementia screening purposes or because they’re still not sure which of my 3 names to refer to me? I mean it’s a reasonable question I could have become confused and forgotten after the whole array of names thrown my way  today – Harvey,May, miss, Her (Alex’s name for me)
• Do you know where you are? I mean again ,fairly valid question as I know I’m in hospital ,which hospital I’m in and bed number, but I don’t know what ward ,well admittedly I do now ,but I didn’t know until lunchtime when I read it off of the lunch order slip⁰
• What are you here for?

I’m not really too sure why she had to aks me these questions,I think they just have to pick patients at random.  I mean I guess I can understand why I was potentially picked- nutter that’s thinking of turning bed sheets into pyjamas, wedging pillows against metal bed railings and walls.. on a more sensible note I guess I could’ve been chosen because I have an infection and swelling to the side of my head/skull bone it could make some logical sense ,i guess. Either that or I really do look horrific and look about 100, maybe Alex did have a valid point for not wanting to look at me after all ?

I would be lying if I didn’t admit part of me wanted to be naughty and respond confidently with silly answers or the second potential option.. hello, yes, I’m deaf nice to meet you,I may have lost my marbles, but I don’t have dementia. However, I choose to go option 3 and behave myself. Knowing my luck security and or psychiatrists would have been called, mind you I may have got some help for my red ear and  numb face though…

The night was… long to say the least, Alex did,well what Alex does best  shouting, ranting, raving and pressing her buzzer every few minutes all night long. Every time I would just start dozing off, she was up at the buzzer, crashing about or shouting – much easier to hear at night as everything else is so much quieter. On two occasions, she proceeded to stand right at the foot of my bed ,even holding onto my bed whilst shouting at someone on speaker phone and / or chasing down nurses – don’t mind me…

I’m still doing OK, hanging on in there,but I definitely feel a little confused on a few things and I’m hoping I can see Joe tomorrow to speak to him again to get a clearer idea,I know I saw him this morning but since audiology I’m confused, who am I listening to? Do I listen to Anne and leave the osia off? Or am I listening to Joe and Haddy and keeping it on? Where do we go from here if I’m not allowed the Osia adjusting to the new levels I need due to a reduction in hesring? What do we do if it isn’t just a drop due to the infection/ swelling?

still being stubborn old me reluctant to say anything out of fear of being a hindrance, nuisance, or burden.

Today  certainly feels like a bit of a kick in the teeth given how well things had been going, but I remain firm that better days are coming, and whatever happens happens.

Hopeful this is all a little bump in the road. I have fantastic support from both Joe and Haddy, and the nurses have been incredible today. I can’t say honestly I’ve felt my best or strongest today, but I will get there with the fantastic team  and support that I have, my load is lighter, though my bag is heavier with chocolate and biscuits (thank you again to my beautiful friends) ❤️

Unexpected update..

After contacting the hospital (The Royal National ENT and eastman dental hospitals) on Thursday evening, I received a reply just before 10 am the following morning , which is very impressive.

I was offered an appointment with Haddy on either Monday or Thursday (5th or 8th Feb) I can’t lie ,as much as I love Haddy I was slightly disappointed to not have been offered an appointment with Joe,but Haddy has helped me out of many a pickle and infection so its not the end of the world. I know Haddy is more than capable of dealing with any eventuality.

I massively debated which date to opt for. Did I go for Monday as that was literally the next working day? Or did I hang fire until Thursday?  when the appointment was at a slightly earlier time, and I knew Joe would be about if a second opinion was needed ? Although he most likely would’ve popped in regardless. Part of me really wanted to hang on until Thursday, but I knew the most sensible option was to take the appointment on Monday for a few reasons:

1) it was the next avaliable

2) incase things drastically got worse over the weekend

3) the length of time I had already tried to navigate and fix the issue myself to no avail

4) I didn’t want the hospital thinking it wasn’t urgent if I could wait a further 3 working days.

5) childcare was slightly better and more convenient

Over the weekend I felt like things had massively improved, I debated cancelling the appointment.  I was wasting everyone’s time but it was better I cancelled now and they may fit someone else in instead right? Against my better judgment I went along to the appointment, all I can say… its a very good job I did because what happened next I never could have predicted, but you know me I like to keep things interesting and keep everyone on their toes.. so what happened ??..

Get the kettle on and settle down your in for a ride …

Dropping my daughter off at nursery, I reminded her Nanna would be collecting her as mummy had to go to the hospital. ” London ear doctor?” My daughter questioned. Yes, that’s right, “Oh no mummy, you poorly?” Came her next question ,don’t worry, mummy’s OK ,mummy will see you later tonight. I love you lots, have a fun day with your friends,”I reassured as she went into nursery.

It felt strange walking away, leaving her there, knowing I was going home to a quiet empty flat for a few hours instead of heading to work, like i typically would be doing. Don’t get me wrong, it was nice to get a few jobs done and sit down with a hot drink,but it still felt very odd.

1pm – I board the train at the local train station, beginning my journey to London. It felt very strange to be doing so on a nursery day,but I knew my daughter was in good hands.  The journey into London seemed to go super quickly it was as though I had blinked. I arrived at Goodge Street by 2 pm,how?! How had I got the train and 2 tubes this quickly? This never happens.. it usually takes 1.5 hours minimum to get to this point (I always allow 2 hours, you never can fully tell how long it will take, sometimes it’s plenty of time other days it’s still not enough time)

I had the world’s slowest walk debating what I could do until closer to my appointment time. Did I have a wander around some shops? Should I grab a coffee somewhere? Sit in the park? Head to GOSH for a coffee? Instead, i found my feet instinctively heading directly  to the hospital, something told me I should just head straight there. Once at the hospital, I checked in before grabbing a coffee. ( usually, if I had time to spare, I would get coffee first, then check in nearer to my appointment time. I have no idea  something told me I needed to check in first today)

I had planned to sit and read, but again, something was telling me not to do this, that I would need my book later.Instead, I sat catching on messages and emails I  hadn’t yet had a chance to answer.

Once I had caught up on messages ,it wasn’t far off of my appointment time I pop to the toilets before heading up to the famous fifth floor and autopilot my way through checking in with them ,I’m directed to zone B , I think (I can never tell if it’s B or C they sound too similar)

I take a seat in my usual seat directly outside of the zone B door,in prime hearing position to hear when my name is called. I now only have minutes until my appointment, so I don’t bother taking my book out as I feel I will just start reading and be called through. Haddy comes out and just as she’s about to call me through a member of staff approaches  speaking  to Haddy, Haddy then calls the member of staffs patient through, it doesn’t matter I’m happy to wait there’s obviously a reason and a need for her to see this patient first, plus technically there’s still a few minutes until my appointment is due to start anyway.

Usual spot ,right outside zone B doors 🥰

A couple of minutes later, the patient comes out, and Haddy calls me through apologising for the delay. It’s really no problem at all, and there is absolutely no need for any sort of apology either. I know if it were me in a situation where I needed prioritising, I would absolutely want that to happen, and for the other patient to be understanding, you just never know why or what’s going on.

I follow Haddy through to the room and we have a quick catch up. Haddy asks what’s been going on since she last saw me and if this was a scheduled appointment, as she knows we’re due one soon. I explain the situation, that I had requested this as an earlier/ additional appointment. Haddy listens to my symptoms and what’s been going on before taking a look .It must have been around 3.05pm by this point. Haddy takes a look at the Osia site, she doesn’t look for long, a matter of seconds – a minute at most. I knew it,I’ve wasted everyone’s time ,at least I can be reassured though ,right?

Wrong, Haddy, who up until this point had been her usual chatty,smiley, bubbly self. Falls, suddenly silent, her facial expression changes, a look on her face I’ve not seen before.I know something is up, something isn’t right Haddy looks at me and says, “I need to get a doctor,” before quickly leaving the room .Huh, strange, it must be an infection, and she just needs them to prescribe antibiotics for it, I assume.

A minute or so later ,Haddy returns with a doctor who introduces himself as Dr Shaida ,I believe (though looking online, I’m doubting myself as this isn’t how I remember him looking) anyway, the doctor comes in and introduces himself and explains that he works with Joe, he tells me that Haddy has got him up to speed with what’s going on,he asks me a couple of questions (literally 2 maybe 3) Takes a look and I see him and Haddy exchange looks, The doctor rights himself from looking at my Osia site and tells me how he needs to consult his senior about what to do and leaves the room. I’m still none the wiser as to what is going on.

I assume maybe he’s new or is a junior/ student doctor ,I honestly don’t think anything of it or even think to question what’s going on.

I don’t wait long before the doctor returns to the room,he tells me,although I think he’s more addressing Haddy than he is me, that he’s spoken to his senior and that “we  need to admit” I’m told that I need to be admitted for IV antibiotics,do I have any questions. I don’t.  I’m still none the wiser what’s going on, and I still haven’t fully twigged or processed what’s just been said.

The doctor leaves the room, and Haddy springs into action,I’m still sitting there, not fully registering the serverity of what’s going on around me. it’s like I’m in a daydream. Haddy asks if I’m OK and explains again im being admitted into hosprial, I still haven’t caught up asking ” oh OK when do I need to come in” wake up, Bethan !! Honestly how I hadn’t caught on I dont know. Haddy explains that I’m being admitted now,they’re bringing me in now. ” oh OK I reply”  still not fully catching on with what’s actually going on.

From here on, everything happens super quickly. Haddy  instantly picks up the phone,  phoning  Joe’s work  number to let him know. There’s no answer. Haddy tries again,no answer. Haddy tries calling his personal number. no answer .don’t worry, Joe will call me straight back as soon as he sees I’ve called him. Haddy explains, as he’s either teaching or operating. It’s at this moment the penny drops, better late than never, I guess ..

I’m realising that I’m being admitted into hospital now! finally, cottoning on to the urgency, I asked Haddy if it’s OK for me to call Mum to ask her to be on extended childcare. Of course Haddy has no issue with this at all. I make the call ” hi mum, erm.. can you hang onto … a little longer for me please? How long can you do childcare for I ask. Yeah that’s fine, what time do you reckon you will be home? Do you need dad to get you? ( I think mum was thinking there was an issue with trains) I explain I’m not sure when I’m coming home or how long I need childcare, what’s going on mum asks concerned, er. Yeah they’re admitting me into hospital for IV antibiotics. ” is it infected then mum asks?” Erm yeah I guess so I say,I’m still not fully sure. Mum’s fine about childcare ,I hang up as things are speeding up.

  Haddy ,now has two  phones  to her ear, I’m impressed how hearing people can do this,  on one phone she is trying to phone Ellie, who I’m told is  Joe’s assistant , on the other Haddy is trying to get hold of the on call ENT doctors. Ellie answers first. Haddy notifies Ellie to the situation, asking for on call to hold on , Haddy speaks to Ellie asking  her to pass a message onto Joe that I’m being admitted and asks her to notify  on call ENT, while she continues to also try to get hold of on call,so that between them everyone is alerted ASAP.

Haddy manages to get hold of on call ENT, turns out while on the phone to Ellie they had answered,  they’re alerted to  what’s going on and to expect me and that I’m  coming. now.

Haddy stands up, and we quickly leave the room, Haddy quickly runs to grab her fleece before walking me over to UCLH A&E. Walking over to UCLH A&E Haddy asks if I’m due an appointment with her soon, as she’s pretty sure she had allocated me an appointment Friday, this is absolutely true as I got confused what was going on when both came through minutes apart on Friday. Haddy explains that I will either be kept in for a few hours and discharged later today/ tonight, or they may keep me overnight for a sleepover before sending me home in the morning.

I’m absolutely fine about being admitted, though a bit shocked as I just hadn’t foreseen it ,usually I’m pretty in tune and know before it happens but I had literally no clue or inkling with this. I’m absolutely fine though . I know I do however have a mission on my hands. I wasn’t prepared for this happening so i have literally nothing with me. My handbag contains:

• My phone charger – I never usually take it to appointments, but something told me to go back for it as soon as I got out of the front door to my flat so I ran back for it.
• A book (always a must have)
• Front door keys
• Car keys
• Lip balm
• My purse
• My phone

This could prove interesting.. I was however a girlguide, so let’s see if I’ve still got it in me to adapt with minimal resources in the wilderness hey. I genuinely thought i was going to be told nothing wrong and turned round on my way home within minutes. I’ve known Haddy years,I just knew from her face it was serious,though it didn’t initially register with me what was actually going on.

Within a matter of minutes we arrive at UCLH A&E ,Haddy registers me with reception/ admin at A&E explaining she would like to admit me as her patient, explains  what’s happening, and that oncall ENT are aware and waiting for me. I’m given my red (allergy) admission band and told to take a seat. Haddy ensures that I’m seated before going over to the triage nurses and explaining to them that I’m deaf, that I may not hear them call me, and to remove their masks.

Haddy checks I’m OK  and tells me She has informed them that I’m deaf but to  do my best to listen for my name, she’s unsure how long I’ll be waiting,it could be a while, but she hopes it won’t be too long, wishes me well and tells me she will check in on me on the system to see how I’m doing, before giving me a hug and heading back to her next patient at the ENT Hospital.

I  sit in the very busy waiting room, trying hard to listen ,to hear my name, unhelpfully everyone is wearing ..masks.. the absolute worst thing for someone to be wearing when you’re deaf ,as they further distort sound and make lip reading impossible. it’s super noisy and busy too which doesn’t help at the best of times,but where masks are concerned  it heightens things further, especially as I can’t locate sounds and have no directional sound, making it even harder to know what’s going on. It can be quite frightening at times..

Before long my name is called. I’m only aware as the triage nurse gestured to me ( Haddy had pointed me out to them) I get up and head to the curtained cubicle thet the triage nurse had appeared from, I’m  gestured to stand with the triage nurse.  I struggle to hear an understand what she is saying through her mask , likewise she seems to struggle to understand me saying I’m deaf, asking for her to remove her mask or any of my answers to her questions..  somehow,by some miracle we muddle through, I  repeatedly told  her that on- call ENT are expecting me, as I’m not really sure what shes asking me, besides taking a blood pressure and temperature. After a few minutes, I’m told to take a seat.

When I tell you things happened quickly,I’m not joking or exaggerating they really did, by 3:18pm I’ve seen Haddy (appointment was 3pm),  seen a doctor, senior doctor has been consulted,the original doctor has given verdict to admit. Joe, on call and Ellie, have all been called, I’ve been taken to a&e, and I’ve just been triaged triaged all in under 20 minutes. Currently, we don’t know what is happening it’s suspected either I have a very angry infection or .. my body is rejecting the implant.

I sit down for all of a second or two before I’m  gestured  to follow the triage nurse  through a set of double doors, I’m walked through to the Emergency Day Care Unit, the triage nurse hands me over to staff on the Emergency Day Unit , I’m  allocated an armchair to sit and wait in. I’m quickly taken through for a canula to be fitted.


I forget the timing, but around 4pm  I’m called by an ENT Doctor who clearly has got the memo that I’m deaf as he has removed his mask, gestures/ waves to get my attention and ensures to face me before  he introduces himself as Toby . Toby  tells me he works with Joe.I feel partly reassured by this.

Toby leads me through to a side room, where I explain everything that’s been going on, Toby asks to take a look, of course I oblige. Safe to say, he’s shocked when he sees it.

Toby asks me questions about pain , sickness, dizziness, etc. Toby seems shocked when I explain about the shooting/stabbing pains and about coming over very cold, goosebumpy, and dizzy at soft play Thursday and the past couple of evenings.

Toby explains to  me that he needs to feel the Osia site and apologises for needing to do so. I tell him it’s fine,I know it has to be done regardless. Toby checks that I’m happy for him to start,  reassuring he will be as gentle as he can.

Safe to say, Toby is shocked. Part of the implant  is that rock solid firm it is like bone. There’s no movement whatsoever, whereas other areas are super soft and squishy.  He can’t understand why I’m displaying both , not one – typically its one or the other not both. I mean, it is me ,Where’s the fun in displaying just one, right?! Someone’s got to keep them on their toes and add a little complexity to things.

Toby also doesn’t understand why there’s signs of skin irritation. With this type of implant, there shouldn’t be akin irritation as everything internal (excluding the actual processor) . I explain about the bump being bigger due to implant being on top of the muscle instead of under it.  Toby cannot understand either why the pain comes and goes and why the pain isn’t more intense given how it is presenting  – I was asked to rate the pain on a scale of 10 ,I always hate this,but I said it’s very uncomfortable however it’s nothing compared to the BAHA infectjons or childbirth without pain relief ( BAHA Infection actually trumps child birth in my opinion, give me childbirth an no pain relief anyday) 

I also drop it in there that I can’t hear with my osia, it doesn’t sound any different wearing it vs having it off, and I think my left ear has dipped too. I’ve been told for now keep wearing the Osia processor but Toby suspects that the internal magnet component could have become impacted by the infection and or swelling which could be causing this,however he will note this and pass this on as urgent.

Toby takes some photos and tells me that he  is going to arrange a blood test before he decides what to do with me as he can’t decide, because as he put it I’m presenting well . Although he is concerned and baffled by my symptoms and isn’t happy with how red and angry things look, Toby doesn’t think the infection levels will come back high ,nor does he suspect a  rip roaring infection however, he confirms we will need to wait for blood tests to confirm this  and potentially a scan,which I’m told he will either send me home and ill return tomorrow or within the next few days for,or if I’m admitted will take place tonight or tomorrow. I’m told that if they can’t find anything on an ultrasound, they will then arrange for a CT scan


I return to my allocated chair, and I’m pretty much straight away ,called through  for blood tests. The nurse taking my blood seems very chatty and tells me he’s needle phobic. 3 or 4 samples are taken. Before I’m given my first lot of IV antibiotics and painkillers, I waited in the little side room until this finished and then returned to my allocated armchair in the main waiting area.

5:00pm- A trolley comes round with sandwiches. I’m given a ham and cheese sandwich, the first thing I’ve eaten today,  although I only manage half as ,in typical me fashion. I managed to  knock the other half, flying off the arm of the chair onto the floor (it was in the box before it flew off across the floor.. whoops)

Around 6pm Toby comes over to my chair, gets down to my level so I can lipread him (love this) he apologises for the wait an asks me to come through to a side room where we can chat. 

I follow Toby through to the side room, where he tells me he’s spoken to my team who were involved  with  both my  BAHA and Osia operations , how from doing so he has now gained better understanding of my previous implant  and the  issues surrounding that. Toby  explains how my team has said he’s under strict instructions.. he’s not to let me go. They  want me admitted into the hospital overnight on IV antibiotics. Toby explains that  despite the fact I’m presenting well  they know I have a tendancy to present well, when I’m really not well  and how quickly I tend to go downhill, that they don’t want to send me home for it  it to become rip roaring, that they then need to remove. They also aren’t happy with how much swelling there is ,nor how close this swelling is to the magnet and skull bone.

Toby explains they’re not sure what type of infection  I have but they feel strongly this is what we’re looking at, they don’t where it is,how deep,  or even the full severity, and that  there’s still a possibility it could be rip roaring as bloods aren’t due to come back for another 30-60 mins. I’m told that if it is rip roaring, they will have no choice but to remove the implant.. tonight. I’m told they’re finding me a bed and how he’s sorry for this, and  confirms I will need either an ultrasound and/ or a CT in the morning,  depending .. IF.. If I’ve even still got the implant in the morning. 

I thank Toby and explain its fine ,not to be sorry, it’s one of those things and how I’m in the best place possible, if the team needs me here, then thats what I need to do. He asks if I’m OK in terms of childcare, I explain my parents have got my daughter and will look after her, so it’s not a problem that I’m required to stay. Toby asks if my daughter will be ok, I’m honest that I’ve not left her unexpectedly before ,but that I’ll most likely call her tomorrow morning (she would be in bed by now)

I’m told my body is trying to rid itself of Osia, and I’ve been told that if it continues to behave in this manner given my history, it will need removing. Essentially, the short of it is they’re admitting me in a high ditched attempt to prevent me from losing the implant which they fear would happen if I were to go home tonight.


I’m taken back to my armchair, where I’m  given my second cocktail of IV antibiotics for the evening while we wait for the blood results to come back.. thank goodness for my cousin Emz and my mum for keeping nagging at me to get checked and to take this earlier appointment.. I dread to think if I hadn’t.. it doesn’t even bear thinking about… Huge thank you, well even thank you isn’t enough as without them I would’ve lost the implant, without a doubt they’ve saved my implant.

I phone mum to update her ,but more than anything, I can check in to see if my daughter is okay . Thankfully, she’s absolutely fine and was super excited to be sleeping in bed with my mum. Finding it hilarious, she’s booted my dad into the spare room. She was given the choice, but honestly, I knew she would choose to sleep in with my mum ,as she doesn’t like sleeping alone and always sleeps in my bed. Honestly, I actually feel more reassured and relaxed that she is in with mum.

I’m not sure who Toby spoke to,but I am really pleased that whoever it was has stuck firm on keeping me and have remained firm on treating it aggressively- they said they need to treat aggressively due to how it is presenting, going in all nicely nicely, softly softly just wouldn’t cut it and I would certainly lose the implant. I think knowing my history they’re not taking any chances anymore,  doctors are still confused by my symptoms- they’re in agreement that they think my skin is reacting to something but they’re unsure what as they’ve never seen this happen before. I mean.. this is me after all, what can I say 🤣.

The plan has changed I’m being downgraded from a CT to ultrasound tomorrow as my team have said they don’t want to expose me to too much radiation ,but are in agreement if the ultrasound doesn’t show anything then we absolutely go ahead with a CT , they can’t understand why so many different things that aren’t typical for the implant are happening.

19:00 – Toby comes back and tells me they’re still trying to find me a bed and apologises for the delay and tells me he’s going to chase up what’s happening with my bloods.

20:00-  Toby returns, and I’m told  my bloods are just coming  back now. He’s going to get them reviewed by someone else, but he’s going to get  strong IV painkillers sorted. I don’t feel like im in enough pain for strong or “the good stuff” as Toby put it. Toby and my team are both baffled as to why I’m not in agony and how I’m still functioning .I  can’t lie. My heart partially stops . This is it, isn’t it? It’s game over, isn’t it? I start wondering how many more hours I have left with the osia. Things just don’t seem to be looking good. I very much think we’re on count down to removal. It’s really not looking good..

A few minutes after Toby has gone over to the nurses station, a nurse comes over, and I’m given some more medication through the IV line in my arm. I’m told this is “The good stuff” and how they’re going to keep a close eye , keep me dosed up and how they’ll  look after me.The nurse looks very sympathetic when saying this. I’m losing the implant, I can just feel it.

20.35- A new patient has come in. I’m not sure what’s wrong, but he’s sitting clutching his head, continuously , very  loudly moaning and grunting, (nothing audible. it’s just noise), throwing up in between moans/ grunts.

20.43- I’ve listened to his groaning what feels like for a lifetime ,apparently its only been 10 minutes, anyway it’s been a long 10 minutes and it’s enough, so I’ve removed my hearing aid and osia, only downfall, I literally cannot hear anything at all so it’s very doubtful I’ll hesr my name if I’m called and miss my bed ,I could potentially be sitting here for the foreseeable, mind you it’s better than listening to his incessant groaning every two minutes I know he doesn’t feel well,I get it.. but nobody is. I don’t think anyone’s here for a wild night out ,perhaps tail end of one, though…

21:21-  I have just had a nurse assigned to me ,who has come over to introduce themselves ,up until now its been a whole mixture of nurses and HCA looking after me. Im hoping this is good progress, it could also mean though that I’m staying here on this chair as opposed to bed,or worse case scenario perhaps the implant does need removing,or it’s for continuity incase anything does progress to this point. Either way it’s progress for the better.

21.30 – Urghhh.. honestly. How .many. times. Is someone going to talk to me with a mask on… they’re aware that I’m deaf, yet they’re Continuing to speak to me with masks on and won’t remove them (only person who hasn’t is Toby) then they wonder why I’m not responding,  responding inappropriately (nothing naughty, just in my responses don’t make sense in relation to what I’m being asked) ,or why I’m not replying at all. Anyway, rant over…

21:43-  groany man hasn’t stopped moaning ,in between groans and throwing up he’s demanding a bed, shh be quiet. I’ve been waiting since 4 pm, well 6pm more accurately ,but still besides the point. Point is you don’t hear me groaning and moaning. Though I am tempted to start doing laps of the waiting area as I can’t lie I’ve a very numb bum and the once comfy chair isn’t quite so comfy now, but still not moaning or groaning.

22.45- I’m onto my next cocktail of the night. Hey, maybe I was wrong. Maybe people do come here for a wild night out..

23:00- Moaning, grunting man is moved, I’ve never heard quite so many cheers for a patient moving. Safe to say, he had clearly irritated quite a few people. Currently I’m still waiting on a bed no movement yet,still no moaning or groaning from me. I’m fairly sure I may stay on the chair over night now if I’m going home tomorrow morning it doesn’t seem worthwhile getting moved to a bed now. I don’t mind as it means someone who genuinely needs the bed has got one, and I’m not the highest priority, meaning someone else is more unwell. How can you grumble at that? Hopefully, if I am remaining on the chair tonight, another will become free so I can put my feet up onto that one to get slightly more comfortable.

23.15- My allocated nurse comes to do observations and has checked my left ear to ensure there’s no discharge. There isn’t. I do wonder if she’s secretly looking for any loose marbles too, there’s probably at least a few rattling around in there. I’ve lost count how many times I’ve had to be reminded that I need to take my IV drip stand with me when I go to the toilet (or coat hanger as my cousin has been referring to it) as I keep forgetting I’m attached.. told you there’s a few marbles loose..

00:08-  I’m moved from my armchair, I can’t lie it was getting slightly uncomfortable now .I’m moved to the opposite side of the emergency Day Unit (literally the other side of the nurses station, a two second walk- although I’m taken in a wheelchair). I’m now  allocated a trolley. It takes me ages to get comfortable. It’s not the most comfortable thing, I must admit, but I’m also experiencing a lot of pulling pressure from the Osia site whenever I lay down. 

A nurse comes to introduce himself telling me he is going to be my nurse looking after me tonight, he gives me some more antibiotics through the IV lie , once done I lay back down in attempt to get comfy, he returns a few mins later to do my observations. After this, the curtains are pulled, though the lights are still on and there’s a lot of hustle and bustle ,I keep my hearing aid in,I doubt I’ll fall asleep ,but if I do I need to be able to hear and I know I haven’t a chance with the noise levels as they currently are (nobody’s fault just the way it is with staff coming and going ,machinery and new patients coming and going)

00:50- I can’t sleep ,I’ve given up trying to, on the odd occasion I have managed to just about go off I’ve been shaken awake for observations,medications or to be checked on. All absolutely fine and reasonable reasons to be woken.

3am-  I’m woken up by two nurses. I’m  told they’re moving me. A cardiac patient  has come in who needs this bay, as they require more monitoring.  I hadn’t realised I’d been placed in a high monitoring trolley/ area.  I was put into a wheelchair and  wheeled a few yards up  the corridor, still very much in the Emergency Day Unit, where I’m allocated to a new trolley, this one seems more comfortable,  another set of observations are taken then I’m left to try to sleep.. it seems quieter.. however, I quickly realise I’ve spoken too soon… I’m back with  the moaning/ grunting man, who apparently seems to be located near me, It appears he still hasn’t stopped his moaning and groaning as of yet… as another patient keeps shouting, ” Shhh, be quiet” whenever he’s moaning or groaning … im definitely taking my ears out tonight ( usually, I leave them in/on when in hospital) on a more positive note. The head of this trolley can be adjusted. . My other one couldn’t be, so I was in a very awkward and uncomfortable position.

3.15am  From what I can overhear, moaning / grunting man  has … a migraine and was only here two days ago, he’s sent home.  I’ve removed my ears again  ,however, I’ve now placed them more strategically where staff can more visibly see them, hopefully now they may realise I’m deaf, why I’m sleeping through everything and why I’m mission impossible to wake.

3.30am- My strategic placing of ears has worked. However, the downfall they’re not attempting to remove masks still ,nor are they waiting 30 seconds- 1 minute for me to place my ears before speaking to me.. so I’m half asleep and deaf.. brilliant.. this is a fun game of Guess the conversation..


I must have fallen asleep as just after 5:00 am . I’m woken by two nurses, I’m  told they’re moving me , I’m going to the ward now.  My things are quickly gathered up, and I’m taken to the ward ,by my new mode of transport of a wheelchair.

Although there’s been a lot of waiting around and musical chairs/ beds, I can not fault anyone ,the care or how quickly everyone sprang into action

Osia Diary Jan- Feb 2024

Friday 26th January

I had been to the local zoo with two mum friends and their kids .It was a lovely clear day, but very windy. Our local zoo tends to be very chilly and breezy at the best of times. I had the osia on ,no bother, no trouble whatsoever.

Later that evening I noticed the skin of the “osia bump” was very dry and sore (sore just purely from dryness no other reason) Nothing abnormal , and all as Joe had picked up on this a few weeks ago .I have been told to just apply vaseline or something similar to ensure the area is kept well moisturised.

  Knowing how windy the zoo can be I just assumed the weather had dried the skin out that little more than usual, especially as I had my hair tied up so there was potential that the wind could have affected the area more.  I applied cream as usual to the area , it stung a little ,but not in a painful way more like you’ve grazed your knee or generally when your skin is dry and you apply cream, a bit like anyone who has eczema will know how dry your skin can become then you apply cream. Besides this everything was fine. I didn’t think anything more of it. It felt a little sensitive that evening  when I undid the safety line ,like an aching feeling , a bit like untying your hair. It lasted a minute or so, and then it was fine.

Saturday 27th January 2024

I woke feeling unwell. I couldn’t put my finger on what or why.  I had a slight general  headache, nothing awful. I didn’t really think anything of it. I hadn’t been ill in ages ,maybe I was just run down?

I pushed through it.I was taking my daughter to a local theatre to see Bluey’s big play, and I wasn’t missing it.  Bluey is a big favourite in our house, not just with my daughter, I will add! I was excited to see this one, the first theatre show with my osia. I wanted to see how it faired compared to previous shows where I’ve barely heard a word. (It was amazing. I can’t even put it into words it was an experience I didn’t ever want to end) Bluey has become all the more special in this house. I’ll try to remember to do a separate blog post about it, although there is a little content on my instagram.

As the day went on, the headache shifted on its own ( I very rarely reach for painkillers). I had no idea what it was about.  Typically, I don’t really get headaches, but these things happen, don’t they. I had worn the osia as normal, and again, there were no issues in doing so.

That evening, I had a bit of a general headache ,Again I didn’t think anything much of it, I’d had a few late nights recently and just put it down to that and had an early night.

Sunday 28th January

I woke up and felt bright and like my usual self. I clearly just needed that early night. Perfect. Osia on I carried on with my usual Sunday stripping and changing the beds,  getting a bit of washing on (all the exciting glamorous stuff) before heading to a local family-friendly deaf club. I felt fine… well.. maybe not.. if I’m being totally honest.

The Osia bump was still dry, but the soreness was easing up. It wasn’t as dry as it had been. The creams were clearly doing their job. I didn’t think anymore of it. The safety line clip was very tender, but it rested on the top of the bump, and the bump was dry, so again, I didn’t think a huge amount of it. It was uncomfortable but nothing  i couldn’t handle,nor something to write home about.

Afterwards ,I headed to my parents for a Sunday roast .Everything was fine until maybe late afternoon when my head just felt a little odd. I couldn’t put my finger on what or why. (Looking back now, knowing what I know, I’m sitting here saying well duh of course, it wasn’t “fine”) the osia felt like it was sitting a little uncomfortable compared to normal . I kept saying to myself I’ll  check /adjust the position in a minute” Of course, being a mum, that minute didn’t happen.

I began expirencing a lot of  aches and  random intense  jolts of some weird kind of sensation every so often catching me unawares that would stop me in my tracks and stop my breath for a second or two. Beside this, I was fine. Perhaps stupidly looking back, I really wasn’t “fine.” I didn’t think anything of it. I just assumed where my daughter had been waking earlier and I had been going to bed later, the extended wear was maybe contributing. Again, I had the same hairband achey feeling for a couple of seconds to a minute maximum upon removing that night.

Monday 29th January 2024

The Osia bump felt much healthier and a lot smoother. it didn’t feel dry at all, with no aches, no pains , and no headaches .Happy days. Admittedly, the safety line clip felt like it was pinching on a few occasions, and I had struggled to get it to do up,but moving the position resolved the pinching feeling. I massively struggled with the osia being uncomfortable at work ,so much so as soon as I got home it came off and stayed off (I only work 4 hour shifts so it was possibly on for 5 hours total)

Tuesday 30th January 2024

I had yet again struggled to get the osia safety line to do up. I assume it’s where my hair is growing back in that area , and generally, I have thick hair .I presumed my hair thickness was causing the issue in the clip doing up ,otherwise, everything else was fine. Wearing the osia wasn’t causing any pain or discomfort besides the aching at the end of the day undoing the clip.

This afternoon, however, told a different story…

Mum came round for coffee as I sat down with my coffee ,hair shoved up in a classic mum bun, Mum commented, “What have you done?”, “What have you done to your head?” Confused, having no idea what she was on about, I asked her what do you mean?  “You’ve got a big bump to your head.” “What have done?” came mums panicked  response. Oh ,yeah, that’s supposed to be there. I casually said, “Is it? Are you sure?” Came mum’s  slightly nervous reply, yeah its always been there, I say, explaining again about the transducer and magnet being on top of the muscle as opposed to under, like is typically standard. “Are you sure? Not like that, though,it’s bright red and swollen, ” she questioned.

Still completely confused, I replied, “Is it? “How can you not know?  How can you not feel that?” Mum questioned, coming across slightly annoyed. I asked Mum to take a photo so I could actually see what she was going on about. Honestly, I couldn’t feel any pain or discomfort in the slightest.

This is how my head was looking. On comparison from photos of when it was first implanted..

You could say it was most definitely swollen .. point taken. How on gods green earth had I not noticed or felt it? I honestly have no idea. I guess the location is pretty tricky to see in a mirror and it has been getting harder to photograph now my hair is regrowing ,but even so ,safe to say I was rather surprised to be presented with this staring me in the face.

(The swelling 10000% wasn’t there at the weekend as I had seen Mum on both Saturday and Sunday, and nothing was mentioned, and she most definitely would have said).

Mum instantly said to me, “You need to contact the hospital, send them a picture, and see what they say. Of course, yes, she was right. Perhaps stupidly (there’s  absolutely no perhaps about it) feeling OK. I  drafted an email to the hospital. However, I didn’t send it.

I think  now looking back , perhaps I didn’t want to face up to the reality of what could potentially be happening. Telling myself everything’s fine. I’m not in pain, and hey, we know my body heals slowly , but let’s be realistic ..how many times did my BAHA become swollen and would then be right as rain as though nothing had happened the next morning?

As the afternoon went on, as suspected, the swelling felt like it was beginning to reduce.

By evening however it began swelling an awful lot more, so much so the whole right side of my head became swollen,red and angry , and swelling began appearing to my neck with right sided localised headaches, and pain radiating from one side to the other and up onto the top of my head. I began to notice my “little ear” (reconstructed ear) felt a lot flatter to my head and as though it was being pulled to the right.

Did I regret sending that email? Absolutely. (There’s a video on my tiktok showing the extent of the swelling, especially so in my neck if anyone is interested) by this point my gut was saying, no doubt about it I had an infection, if not my body was rejecting. I didn’t want to hear this. Surely not? Not already? Not again? It couldn’t be.

Knowing how late it was and that I wouldn’t get a response now until the morning , also from a childcare point of view, there was absolutely no way  I could get any help tonight.

I had no choice but to wait until morning. Safe to say, it was a long and uncomfortable night, to say the least (I saw every hour) I couldn’t lay down flat and generally couldn’t get comfy without being in discomfort. I was awake until gone 3am when I may have finally dosed off for a short while before waking again.

Wednesday 31st January 2024

I woke with my head still very much swollen.I noticed however that I could now get hold of more of my reconstructed ear  than I could yesterday. I could  now get my hair behind my ear again, so this to me, signified that the swelling had decreased.

what I’m about to say next, I can already hear you shouting at your screen reading this… I began debating whether it was actually worth contacting the hospital or not.. I know…. I know…. Hear me out.

Previously this kind of thing has happened with my BAHA (and or Osia thinking about it)where things become a little swollen and or tender then it rights itself and within a few days, it’s as though it never happened.

I don’t want to worry or panic the hospital,that they arrange an urgent appointment for it to be absolutely nothing,or to sort itself before I even get there (something that happened many a time with the BAHA and I just looked like an absolute muppet and a hypochondriac) I’ve also not required any paracetamol or ibuprofen since the weekend (anyone who knows me ,will know I don’t touch pain killers unless it’s an absolute necessity) which suggests to me looking back, maybe just maybe something  was actually going on and i should have contacted) it also signified that things are righting themselves.

I just don’t want to be wasting Joe or Haddy’s  time, or anyone’s time, and or resources , especially if it is nothing and they could be helping someone who actually genuinely needs help,or has a genuine problem rather than me rocking up with absolutely nothing and being a time waster, especially given the current state of our NHS I don’t want to wasteful.

Equally I don’t want to leave it too long,that the situation could become worse where I potentially could be told ” well if you had come in a few weeks ago we could have treated it now we can’t do anything but remove” or something along those lines.

No I’m not in massive amounts of pain and nowhere near my threshold,however as a single parent reality is do I actually want to wait until I’m at my absolute pain threshold limit (very high) before I mention it?.. probably not..

By all means I know if Joe and Haddy knew they would absolutely be telling me I absolutely have to/ should be making contact.  I know they absolutely would see me even if it was nothing they would want to see me even if just to check and reassure, so it’s not as though I’m fearful of being turned away or anything like that.its not even a “I don’t want to go to hospiral” or a ” I’m scared/ dislike hospital” because its absolutely not that. I’ve practically lived in hospitals for almost the past 29 years now and it doesn’t remotely bother or phase me whatsoever, it’s as normal as going to the shops for bread/ milk , or going for a walk/ going to work/ school. You get my drift.

I just don’t want to be a hindrance ,cause alarm unnecessarily, waste time of Joe/Haddy and the NHS, nor do I want to waste NHS resources. I don’t want this to be a boy that cried wolf situation. What if it’s nothing this time and then in a few weeks or months or so it is something and I’m not taken as seriously because I’ve said before something wasn’t right and all was fine?

Ultimately I’m on the fence whether to call or just ride it out.

This evening I’ve begun coming over cold and shivery randomly. I massively struggled to get to sleep tonight, constantly feeling uncomfortable and a constant pulling around the osia implant area. The past week has been tricky but more so tonight.

Thursday 1st February 2024

I noticed this morning, that a few days ago when the swelling had really ballooned that my right eye was incredibly sore and dry, not sure if it bares any connection or relation,but it seems strange how as the swelling has gone down my eye isn’t dry or sore. Could it be connected? Could it just be coincidence? Who knows.

Initially, today, I believed the swelling had gone down. I still partially do,however, today, I began developing new symptoms, things that started to concern me a little bit.

This morning I travelled to visit a friend (we alternate between the three of us every week, this week was our week to travel to her ,only around 40 minutes approx) we headed to a soft play .

While driving, I had felt some pulling sensation around the osia area that left me feeling a little queasy, but nothing horrendous. I was able to drive with minimal issues.

Once at soft play I seemed to be ok, however whilst climbing after my daughter in the older section ,as she was a little on the small side for some of the equipment I noticed my arms and legs were beginning to become super cold and covered in goosebumps, something that actually happened last night and my temperature had dropped to 34.5°

This lasted quite a bit longer than it had last night and it most certainly wasn’t cold in the soft play, I wasn’t overly wrapped up either ,but equally not underdressed.

At one point myself and my two friends were sat in the padded football area while the kids were running from one side to the other (no interest in actually playing football or playing with the balls) whilst chatting out of nowhere despite already being sat down I came over extremely light headed and dizzy, everything began spinning, my left ear was ringing ,everyone and everything went totally out of focus my friends were floating sitting upside down. It was horrific.

The nausea I felt was something else,I had eaten and drunk ,so it wasn’t due to this.  I had a very slow and cautious drive home as I can’t lie everything from earlier had totally drained me and I just generally wasn’t feeling 1000%. I did however in amongst cooking dinner, clearing up and getting ready for choir, pull on my big girl pants and email the hospital to let them know what’s going on and to request an appointment with either Joe or Haddy . Enough was enough now. I knew I couldn’t delay the inevitable any longer.

Driving to signing choir tonight (yes I still went despite not feeling 1000%, yes I was absolutely fine) like earlier my hands ,legs and feet were like ice. It felt as though I had just dunked them into a bucket of ice or put them bare into thick, deep snow. The pulling sensation around the osia site very much continued ,making the drive interesting. I also noticed and perhaps should have at the weekend that there is a lot of pinching around the safety line (it’s been an absolute mission to get the safety line clip to do up) it usually sits/ rests just slightly above the bump whereas now it’s fully sitting on it.

Typically, at choir, I stand for the full 90 minutes ,however, tonight within a mere few minutes of arriving, I knew I needed to get a chair tonight. I’m not fully sure what happened but something just felt off ,I felt lighter on my feet- only way I can think of describing it, although I was upright and walking fine and my balance was fine I just felt very light,like a feather, as though if a gust of wind had come in I’d have gone flying off into the wind.

I thought what with moving around to the music it was probably better and safer to have a chair,so If I needed to sit down quick I could ,or if I felt myself going I could sit down quick and when Carol was talking and during break time I could be seated, especially so with the nausea it comes and goes but when it does come there’s no sicky feeling to my belly it’s just a “I’m going to throw up NOW” type feeling,except I don’t throw up, no gagging ,retching ,none of that. I know it’s definitely not a sickness bug or anything like that. It’s mainly happening if/ when I move too quickly, another reason for the chair.

In a few songs were working on (no spoilers) we do a bit of clicking so have to move our heads to keep in time with direction we’re clicking or others where we do a bit of swaying . I noticed during these moments (I stood while doing the songs) that I was loosing my balance and going too far to the left and or the right, yet somehow by some miracle I managed to stop myself from going fully over. How? I’m not sure, especially given that I’m dyspraxic. Me and balance/co-ordination don’t exactly mix well at the best of times.

I’m convinced despite the back of the implant area being uncomfortable,tender and sore (where the pulling feeling is) the swelling is reducing, although Mum begs to differ saying how it looks no different, have the hospital not got back to me yet, she’s surprised that they’ve not had me straight up there and that I need to chase them first thing.. yeahhh. The hospital haven’t got back to me because,until somewhere between 5.30-5.50pm this evening they had absolutely no idea, if we’re being specific they still don’t and won’t until the morning as the office shuts at 5pm.

Friday 1st February 2024

I partly feel relieved for having emailed the hospital last night, on the other hand I really don’t. I’m still fine and I can still deal with this myself, I’m absolutely fine and feeling this is absolutely nothing. I massively feel like im wasting everyone’s time.

Last night was another rough one,I didn’t get to sleep until sometime in the early hours and then woke very early roo,I got maybe 3-4 hours of sleep if that. Sleep is definitely getting rougher.

I know this has been ongoing for almost a week now but I genuinely feel things have improved, the swelling isn’t anywhere near as bad as it was. I can now get my glasses on comfortably first time ( I hadn’t realised or noticed I’d been struggling until they went on super easy this morning) that said it is still rather sore and uncomfortable, so perhaps I have done the right thing?

Before 10 am this morning, I have had a response from the hospital. I’m nervous to open the email. I don’t know why. I can’t lie I’m very impressed with how quickly they have responded, especially given the fact I didn’t even email until after closing yesterday evening and they would have only began going through emails etc at 9am.

I would be lying if I said I hadn’t been sat with my phone glued to my hand, constantly refreshing my emails in case of a reply.  They have said they can get me in with Haddy either Monday at 3pm or Thursday at 12. (I had specifically requested either Joe or Haddy. I didn’t want anyone else as I’ve known Haddy since I was 18 and she’s dealt with a lot of the issues with my BAHA, and Joe is my consultant and surgeon and I fully trust both of them. Reality is had I seen someone else I would have ended up seeing Joe or Haddy anyway to review/ follow up).

Not awful, really given how late I’ve left kt that essentially I’ve been offered an appointment the next day. I frustrate myself as I know if I had put my big girl pants on ,on Tuesday, the reality is I would have been seen either yesterday or today. I think some times I need that reality check, that kick up the backside to remind me, I’m not invincible, I’m not super woman and I CANNOT do it all myself, all of the time. Reality is though had my appointment been today it would have been a nightmare to get there, due to train strikes our local station, although trains are still running, they are only running one and hour on the hour.

Second time ,at least now I give you full permission to shout at me through the screen. My gut told me the best thing to do was take the Monday appointment. However, part of me was saying no, you’ve gone this long, and you can wait until Thursday. I knew if I waited until Thursday I potentially could see Joe,as he rubs clinic on a Thursday so he would be about to jump in to have a look, if he saw me in the waiting room,knew I was there or if Haddy felt a need for him to take a look for any reason.

My temperature this morning has been 35°- 36.2 an improvement on yesterday, but it is still not normal for me. Typically, my temperature sits between 36.6-36.8 , so much so that if my temperature hits 36.8, I’m a bit “ooh that’s warm for me,” and i begin keeping an eye.  35 is definitely a low temperature for me, but certainly nowhere near as bad as 34, though

I decide to be sensible and take the Monday appointment, it’s the closest and let’s face it I’ve put this off for a week now, although yes I could wait,I know I probably shouldn’t.  Childcare wasn’t an issue for either day but was that bit easier on the Monday as it meant Mum didn’t need to move as much about, nor would she need to have my daughter for as long either. Perfect. It was sorted and booked.