RNENT Hospital appt 14/03/24

Today is the day. Today, I have my follow-up appointment with my consultant Joe Manjaly.I can’t lie. I’m nervous about today’s appointment, which is unlike me. What wrong with me as of late? Nervous? Anxious? Stressed? Worried? It seems I do have feelings and emotions after all. Who would’ve thought it, hey?!  I very much blame old age and parenting for that one.. I’m only nervous due to how quickly this appointment has come about and because, typically, my appointments are 15-20 minutes.

The appointment has come through super quickly, I was partly expecting this. Joe had told me as soon as he knew anything with the fluid result he would call me (that was the Friday late afternoon), by  Monday lunchtime I had recieved that phone call, however I was at work so had missed it, only discovering it a short while later after my shift had ended.

I essentially have a double appointment, which is great because I honestly love Joe, and I do feel we have a lot to discuss. Although my mind is going 10091 miles an hour over thinking that there’s more to it- as friends have said ,if it was something awful they wouldn’t have made me wait until today,  I would  have been asked to come in earlier. True I can’t argue that.

I can’t lie, it’s still very much a struggle being Ear-less travelling to appointments but again this morning I’ve had a battle to get the osia on and to stay put, so I’ve given up trying as I’m just getting frustrated, which isn’t needed. I do, however, eventually manage to get it on once on the train – of all places, you would think with the motion/ movement it would be less likely to go on,but apparently not…

My appointment is booked for 12 pm. I arrive in London early, as always, however today I take the time to pop to Boots at Liverpool Street station. I’ve discovered I don’t have any earrings in,so now I feel naked and rather self-conscious, so I need to rectify this. I don’t manage to secure any earrings,however it’s not a wasted visit as I manage to use the photo printing machines and print some photos of my daughter that I’ve been meaning to do, in preparation for her birthday so it’s not all bad..  I do partly wish I’d done it on the way home as I’m struggling to fit them into my bag.. but hey, if I did, I’d probably have forgotten all about it by the time I head home.

Once I’ve got the photos printed- it literally takes a matter of minutes . I then head over to get the tubes across to the hospital.

I’m still really early for my appointment . I’m thankful for this, as it gives me a chance to grab a coffee , read a couple of chapters of my book, give myself some pep talks and calm down the nerves/ over thinking (reading, writing, walking, coffee or any hot drink really and pep talks usually work as does music)

11.35am I head up to the 5th floor ( I had already checked in at main reception, when I first arrived so it was one less thing to do and I could get that out the way ASAP- I hate doing it in case of any unexpected questions/ hearing stuff)

The hospital entrance/ cafe Area and the 5th floor are spookily quiet, especially given its lunchtime, I’ve only ever seen it this quiet at the end of the day when I’m practically ,or even quite literally ( last visit)  being locked in. There is literally just myself and one other person waiting on the 5th floor, and we’re both at different ends of the corridor.. weird…

11:40 am I arrive on the 5th floor. Within a minute or two, I vaguely hear a female voice calling for someone, but I’m not really paying attention and don’t take much notice of this.I assume they’re calling the other patient through. With no response, I notice the lady walking towards me she approaches and asks, “ Are you Bethan?” I confirm I am, she kindly asks.”we‘re ready for you. Did you want to come through?” I’m confused.  I didn’t think I was seeing audiology today? What’s going on? Have I got muddled? 

I’m not sure if she sensed my confusion , but she turns around while I’m following her through and says ” Joe Manjaly is in the room waiting for you , we’ve met before I’m Ellie” the penny drops.. It’s Ellie, Joe’s registrar, I saw on my first admission. Ellie, who passed on the message to Joe, that I was being admitted. In my defence..  I’ve never seen Ellie out of her scrubs and hair tightly back in a neat bun. Today, she’s in usual smart/ work attire and has her hair down.

I will admit I didn’t ask or say everything I wanted to say.I honestly don’t know why, as I had a lot I wanted to say and discuss with Joe. I know I really should have done, especially having gone in 15 minutes earlier, and I’m  booked in for a 30-minute appointment. knowing the waiting area was really quiet, I should’ve just gone for it, especially knowing Fred,Bob,Susan,Jane, etc, weren’t waiting for him. I wouldn’t need to feel as though I was overruning into someone else’s appointment time.

Knowing I had time and this was my time with Joe, I should have taken the time. However, I did also think well what if he’s going on lunch after seeing me? What if he’s got to see a patient on the wards, etc? I don’t want to be taking him away from them either. Joe never ever makes me feel rushed, by the way. It’s me that overthinks and worries about eating into his and other patients’ time.

I follow Ellie through, there’s Joe sitting ready and waiting for me as promised. Once I’m in the room and we’re past all of the initial hello’s and greetings , Joe smiles and asks “so whose going to speak first then?” I stupidly assume he is talking to Ellie,so I look between them both so I can identify who is going to speak to focus on them and lip read.

A slight pause.. Joe then says, ” Shall I go first? He meant me or him.. Had I realised he meant who was speaking first, me or him, I would’ve opted to go first. I never go first, but today I have a lot of questions and lots I would like to discuss. Usually, I’m very much happy to follow Joe’s lead ( I am today don’t get me wrong by any means)

Joe speaks first and asks how I am,  how I’m getting on, what the update is, and what’s been going on since I last saw him? I say that not a lot has been going on since I last saw him, Joe asked good way? Bad way? Or bit of both? I say a bit of both. I mean it’s good because things haven’t got any worse, things have definitely got better compared to the last few weeks, however I do still have some pain/discomfort and tenderness to the site- but it has improved, absolutely nothing like before.

I fill Joe in on everything that happened with audiology ( I saw them straight after Joe’s appointment before I was discharged) I explained how we had successfully managed to move the magnet strength down to a 2, something I didn’t believe was possible, as we’ve just never been able to do it before.

I discuss with Joe how this is going and how I feel like I can’t hear as much as I could compared to when I had the strength 3, like the connection between the two magnets isn’t fully there or strong enough.  Joe replies ” righhtt” I instantly know what he’s thinking and say I know, I know what you’re going to say but in terms of security of the processor doing simple things like loading the washing machine,  walking my daughter to nursery it repeatedly falls off and without the safety line it would be long gone. ( Joe is very much team strength 2.. I’ll explain more shortly)

Joe is amazing, though, and it’s never just cut and dry. He always listens to what I have to say and is happy to follow my lead within reason, of course. Joe asks whether it’s worth us getting audiology involved again to take a look at what’s going on. I know Joe would like me to stay on strength 2 as its believed it could be the pressure of magnet strength causing the issues for me, it would also mean if I could move down to the 2 I would and should be able to get more usage from the Osia.

I agree with Joe that I think it’s a good idea to get audiology to take a look. I say to Joe how I know he’s not against me moving back to strength 3,but equally I know it’s not what we want and how the lower the strength the more ideal this is for us, as we believe this is what is causing the skin reactions as well as the infections/issues. I can and do totally understand this. Joe as I say is amazing, he agrees yes this is all very true, and reassures that it is absolutely fine if this is something I want to do/ approach and look into ,if I’m not fully happy with the connections and security of the processor/magnet, then we absolutely do look into that.

Joe asks if he can have a look at the Osia site, absolutely its as much his as it is mine. Joe takes a look and is really happy with how the site is looking- Joe tells me how it looks right now is looking as good as he could hope for, this is massively reassuring to know that things are looking good and we’re headed in the right direction ,phew.

Joe addresses the continued pain/ discomfort, saying that he is aware that I’ve mentioned this and asks how it’s faring. it’s absolutely not the worst, but it’s still there. Prior to the issues at the end of January/ early February, I didn’t have any pain or discomfort at all. Joe explains how unfortunately he thinks I could now always have some pain or discomfort,so it’s more a management thing now of how we manage it and work with it, if we need to call it a day due to the pain etc. It’s absolutely not awful enough to remove. It’s bareable.

Joe is happy and comments on how he can see. I’m still very much wearing the osia and persisting with it. Absolutely, there is no way I’m giving up on it, as long as I’ve got a chance and there’s no reason why we have to remove ,then absolutely I’m going to grab any chance and keep persisting,I’m not prepared to give up that easily or without a fight. Joe is super reassuring and tells me that this is absolutely fine. Nobody is talking of me giving it up. Phew, I can’t lie,I do panic for a split second as to where this was heading.

I explain to Joe ,how I really don’t want it to get to that level or point that I end up loosing it.im not worried if I have ongoing discomfort/ tenderness etc as long as I can keep it and keep going.

Joe says in terms of infection at this moment in time, he’s really happy and that I’m making progress. Honestly, it’s a relief to hear that. Joe asks if there’s anything else I want to know or ask?  At first I say no,I don’t think so,though I’m sat there screaming at myself, yes,yes there is ,there is, for goodness sakes just say it, just ask ,speak woman, get your notepad out, ask ,just do it for goodness sakes.

After a moment or two ,I surprise myself and say yes, actually there is something.. blimey, she’s doing it. Usually, I’m “no,no,nothing to ask/ contribute or say.” I ask about the fluid that was tested, whether anything has come of it? Joe says how he doesn’t think anything came of it,but he can check for me – this is something that’s given me sleepless nights I need to know.  Joe, thankfully, has access to the results on the computer,so he asks Ellie if there is anything showing on the sample results. She says no, she doesn’t think so, but Joe also checks.

I don’t tell Joe it’s had me worried or that I’ve had sleepless nights over it. However, I do think he knows as I never really ask anything. The results haven’t actually been back all that long, but again, Joe confirms that there’s nothing significant showing. This has me questioning and doubting. If it’s not significant, does that still mean something? Or does that mean there’s nothing?

I’m brave and surprised myself for a second time asking Joe what this means exactly . Joe explains that there’s nothing concerning or anything that will make any difference. Thoughts come back saying “positive cocci,”  so I’m thinking maybe it was an infection, but the iv antibiotics killed it off? Or we caught it early, and the antibiotics prevented anything further coming of it? Joe asks if it made any difference, having the fluid removed – instantly, no, it didn’t – at first, it made me feel more unwell. However, by that evening, yes, I did feel a massive improvement. I can’t however be sure if that is linked to the removal of fluid or if it was from the chat we had, along with chatting and opening up with my cousin and a few other people that helped me to turn that corner.

I’m  hopeful that whatever it was has gone now and has been killed off, as I can’t lie I was massively panicking knowing there essentially was fluid on my head, that sends your minds to all sorts of horrid places.

Joe tells me in terms of infection, right now I do not have an active infection, I have no signs of an infection and going forward right now Joe doesn’t believe I’m at risk of an infection. Which is massive. I couldn’t ask to hear better news ,it’s a massive relief. Ellie also takes a look and is in agreement that she too doesn’t see any signs of infection, which everyone is really pleased about, we couldn’t ask for better.

Joe asks if I’m still getting good benefit from the Osia despite only wearing it for 1-2 hours per day,which is much lower than any of us would like,but  it’s better than nothing I’m not ready to quit and give up.i want to keep pushing forward and trying to build up. I am still getting good benefit, Joe asks what these are. I say how life changing it has been, Joe asks how,in what way? – he does so in a kind and curious way,it doesn’t come across pushy at all.  It’s important for Joe to know as it’s still relatively new, it’s a fairly niche device, so it’s helpful for him to know to be able to let other potential patients know.

I explain how it gives me speech clarity,  everything is just so much easier I don’t have to second guess or overthink things as much, I can follow and understand conversation so much better and with ease- I’ve never heard conversation like it ever before. I say how I’m less anxious, less frustrated when I’m wearing it, my fatigue is drastically improved, I can function, and  I feel human- says a lot as a parent to a toddler, too It’s giving me a new lease of life and my independence. I tell him how my daughter can tell when I’m wearing it and when I’m not as she too is less frustrated with me. We’re  both able to communicate and understand each other  much better and effectively . My daughter can tell when I’m unable to hear an understand her making comments such as ” mummy put ears on”, “mummy need ears” “Mummy listening ears” – mum life at it’s finest.. this is absolutely not something I say 1001 times a day 🤣  “yay my mummy back.” Honestly, that last one 🥺..

I do, however, tell Joe I can’t localise sounds, something that the  Osia is supposed to be really good for, however I’ve never been able to localise sounds so that’s not necessarily an Osia thing. I can see Joe sitting there questioning this one, and I’m ready for it. Let’s explore it. Joe asks whether he thinks with time I can or will gain sound location with the Osia, I’m honest an say how I don’t know if it’s something I can or will ever achieve, if I can’t or don’t, I’m ok with that.

If I’m brutally honest with myself yes I do hope I will gain this skill but if I’m honest and realistic I don’t think I will, I’m not expecting it- however I can say with certainty that I can hear things in the distance better than I could before  I just have no idea where it’s coming from-  to my left ,to my right, in front of me, behind me, If a car has already gone or ifs approaching and how far away it is.

We back track slightly and talk about my BAHA and comparisons between the two before Joe asks how old I was when I got my BAHA- I know were absolutely looking into my lack of sound localisation and I’m all for it ,this is probably the first time I’ve admitted this to anyone. I was 18 when I actually got implanted, though I began the process age 16. Joe says, ” oh OK quite late on then,” and asks why I got one so late. Why didn’t I get one earlier. Perfectly valid question as I could’ve had one on a headband from a few months old and implanted as young as 5 years old.

It just was never something that was mentioned to my parents as being an option and nobody ever mentioned it to me as I grew either,  none of us had ever heard of them until I was maybe 15 then I heard of them but I thought it was something only avaliable in America, until I attended a Microtia Mingle and met two girls close in age to myself who had BAHA and how well they were coping, whereas there was me sat there fully reliant and dependant on my parents. It was a no brainer from that second I wanted one,I had to try this. I needed this.

My mum had heard of Cochlear Implants and did approach this when I was younger, however she had been told this wasn’t an option- which is correct for grade 3 Microtia ,however they never directed my parents saying anything along the lines of ” a cochlear implant wouldn’t be suitable to Bethan due to her microtia/ ear anatomy however we could offer her a BAHA” or “No that wouldn’t be an option however a BAHA would/ could be” it was just a cochlear implant isn’t an option No.End of conversation, which it didn’t need and shouldn’t have been.

Joe unfortunately says how he can understand this as unfortunately this is the big issue with Single Sided Deafness (SSD) that it wasn’t (still isn’t) fully recognised and nor are the impacts of it.The attitude was very much If you have one ear with hearing,your fine- absolutely not true,I mean it can be but isn’t always.- yet again this would have been another perfect opportunity to have interjected about how I very much agree,I absolutely do I’ve seen it a lot over the last 28/29 years,but I could have also interjected with how this is nlw something I’m expirencing with my daughter who has newly been diagnosed (literally 2 days ago- check out the previous blog)  but of course I didn’t,I should have but I’m sure there will be another opportunity another day to raise it.

Joe explains because I was implanted later in life how this could be the reason why I can’t locate/ have no directional sounds as this part of my brain has most likely shut down now. Joe explains how if I had been implanted at a younger age there’s a higher chance I would be able to locate ans have directional sounds- can’t lie this is a little hard to hear,but it’s nothing I don’t know or haven’t questioned myself,but it’s just one of those things really nothing anyone can do about it. One of many reasons why I try to do what I can for deaf awareness to change this for someone else. Ultimately though Joe does say even if I had been implanted at a younger age or had the headband ,it still  can’t be said with any certainty or guaranteed that I would be able to do so, it could just be a me thing or one of those things, like some people just never learn how to swim. Some people just can’t do it or don’t learn how.

Joe goes on to say how if I had been born bilaterally deaf ( deaf in both ears) like I am now.. although technically I was born with a 10% loss left sided ,which is classed as being within “normal range” I would have been more likely to have been offered, well my parents would have more accurately been offered something for me from a few months old. It’s a hard one. That hits different. Joe explains now any child who is bilaterally deaf or with Bilateral microtia are now offered 2 implants/ aids instead of one. ( I know the lovely lady, our wonderful Microtia Uk founder  Liz Jones who changed this after her son Isaac was born with bilateral microtia an was only offered 1 BAHA as this was classed as being “good enough” she challenged this and now its 2 that are offered!)

Once we’ve finished our discussion, Joe goes to see if anyone from Audiology is free to take a look at my processor.  A few minutes later, the lovely Anne comes in to take a look . Anne asks how I’m doing ,I say how I’m alright ,and Anne being Anne and knowing me so well asked ” no how are you really doing” she can see right through me,I don’t know honestly how she does it.she tells me how I’m looking a lot better than when she last saw me ( when I was here admitted) can’t lie it’s not hard to look better than what I did. Oh dear I’ve seen the photos.. I haven’t even posted the picture I look horrific.. yikes.. I might show you,but honestly it’s awful and I had no idea until I looked back at it. I explain how it’s makeup doing the talking, which we all laugh off.

Told you..horrific…

Anne takes a look at the magnet to see if we can change it back up to a strength 3. Anne removes the Osia and places it back on and does this a few times,I can tell what the answer is before she even speaks, it seems I too can read her like a book..

Typically of course my Osia behaved while Anne was assessing the magnet strengths, I mean why wouldn’t it?  It stays put.. of course it does. 🙄.. I say to Anne how typical this is as its not done it until this morning. I mean why would it not when it’s under watchful eyes? I’m sure it just likes the attention and flirting with everyone..

I knew the answer before it even left Anne’s lips. Anne looked at me and before she could say it I said I know what you’re going to say.. its a no isn’t it? You’re not going to change it back. Anne tries to find a way to soften it,it’s fine she doesn’t need to ” well… its not that I won’t and I’m not saying that ,but to be honest I do want you to stay on a 2″ I tell her it’s fine I knew she was going to say this, I can’t lie I can see the relief in Joe’s face and shoulders too as she says no.

Anne explains her reasoning is that she feels by moving me back to a 3 how she doesn’t feel this is going to benefit me.  I know I’m not going to win this one but I try to fight its corner ,I do totally understand where she and Joe are coming from ,really I do,it’s just that the 3 stays put and provides better sound levels and quality.

Anne says , “I tell you what, I will go and get you a 3.”After I explained, my previous one had been confiscated  by Ying.. I love how she asked, ” What did you do?” Joe laughed in agreement too.. I’m not that bad, honest .. maybe… 🤣 however she does say you do NOT (she didn’t shout but there’s a lot more empathis on the not) change it , Anne knows me far too well by now.. however she does add ” I know I can trust you” .. I can see Joe’s face behind her, trying not to grin or laugh. Well to be honest all 3 of us are trying not to. We all know how awful I am..

They’re not silly they very much know I will do it and what a pain in the backside I am. I know they’re partly in agreement with me but medically they  can’t tell me to do it, morally it’s absolutely a yes.

While Anne leaves the room to go and fetch it. Joe looks at me all serious and says look,I know what your like but please don’t do it, please listen to myself and Anne and follow what we’re saying. If Anne’s told you to stick with the 2 please do it or at least try. Joe expresses that his only concern- I can’t lie it’s one I too very much share and was on my list to discuss..  is that if I go back to a 3 I won’t be able to wear it for as long ,it won’t be anywhere near as much as I can do with a 2,or at least where we hope I can get to anyway. We know it’s highly likely the 3 will impact on my skin and just create a whole host of other issues. The 3 is given to me but we all very much agree it’s a case of having it but trying to forget I’ve got it and only use for real emergencies. To double check I ask Joe, so I need to behave myself then? Yes please Joe replies with a grin.

I do promise I will try, I can’t say I will actually do it,but I will try. Thats got to count for something… right? Usually that wouldn’t even be a thing so that’s got to be progress right?

The plan going forward is very much to keep on as I am, behave with the implant and not to switch it up,  ideally Joe doesn’t want things to be escalated the way they have recently ,he explains he knows its not my fault as my GP wouldn’t have known what they were looking at- they’d either massively playing ir down or over exaggerate it and escalate too fast. Joe explains he thinks this is whats happened and how the doctors in a&e and ward round did the same too.

I agree,I really honestly do. I explain how I only went to the GP for the dermatology referral ( yes Joe could have done it but he wouldn’t be able to refer locally ,only across UCLH trust, idea was for me to do dermatology local so referral needed to come from GP) Joe says he totally understands why I had been to the GP and why I had used it as a teaching moment. He doesn’t blame me for that at all. Joe asks if I had been worried by the GP.  I wasn’t I do understand where Joe is coming from because if someone, especially medical suggests something even if you don’t think that’s what you have it can create doubt in your mind,but for me that wasn’t the case.. I explain how I would have happily waited until Monday until my parents were home to have spoken to him before escalating it,however my parents caught wind and it was all blown out of the water and proportion.

The plan now is going forward I’m to relay everything to Joe, if it’s an evening or weekend to do what I did and contact the switchboard, get them to contact whoever is on call and get them to get ahold of Joe (they’re the only ones who can get hold of Joe anytime of day or night regardless of him being in work) unless it’s a real dire emergency, or I’m in a lot of pain then I’ve been told to just hot foot it back here and present and to gdt them to admit me until he can get to me.

Joe reassures me that he is not telling me off for my most recent admission saying how I had done everything right,it was all by the book and how he’s pleased I’ve actually behaved and done as I’m told for once.  I know it’s impressive isn’t it?! Who knew I had it in me?  It’s Old age. I’m sure. I say to Joe how this makes a change doesn’t it, he grins and says “hmm it does a bit”

Joe says how he thinks they’ve put a lot of unnecessary worry and stress on me in that previous admission and how he’s sorry for this. He says how he doesn’t think I’ve coped well it. I didn’t. It’s true. However, that’s down to frustration of things changing with little to no notice, lack of communication and me generally not being able to hear..especially where masks were concerned..

Joe says he thinks everything this admission was all escalated far too quickly I was honest and spoke to him about how awful the admission had been- lack of care, use of masks, nobody knowing who I was or why I was even there for days,  and how in general I had massively struggled fo hear so I didn’t have a clue what was going on. I’m honest and say how it was at this point. After days of it, i got upset and frustrated, purely because I didn’t know what was happening, whether I was coming or going. It was really tough, to be honest. I explained how some of the checks weren’t relevant where they didn’t know what I was in for – bum,stomach and belly checks,  talking with masks on,no deaf awareness, etc.

Joe has apologised for this. He really doesn’t need to, though it’s not his fault. It’s not anyone’s fault, well I guess to some extent it is when they’re wearing masks or not meeting communication needs such as facing me ,which don’t make listening situations any easier.On the whole it’s nobody’s fault. It’s only my lack of ability to hear that can be blamed on,my anatomy.. on me.. yeah

Joe says he will feed this information back to the team and ensure it is passed on.it may not have been a win for me this appointment, but hopefully it could be a win for others ,or even myself if there’s further admissions and generally an improvement to the services for deaf patients. Going forward, something has to give. I now very much believe anyone can be the change. If my sad, pathetic little voice has raised it with Joe and it’s now being passed on and fedback, anyone can do it..

I’m asked if my parents are more reassured since he spoke to them. I explain how I think they are, but they had just been worried because likewise they too didn’t know what was happening and because I didn’t know myself I was unable to tell them. I explain how I don’t really talk to them about anything, I’m very much  I’m fine, it’s fine, irs nothing. My parents just don’t really understand and honestly I’ve given up trying,plus I don’t like seeing them worried so I just keep quiet in areas.

All my parents know is I’m fine, so when I got upset they massively panicked because that’s just not me,I don’t burst into tears. Joe asked if he had got me into trouble and apologised if he had. He definitely hasn’t got me into trouble, he asked if I was sure because he says he had let the cat out of the bag as to what’s really going on. Honestly it’s fine. It’s just I don’t tell them anything so for me to get upset and burst into tears when they’ve never really seen me in that state sent alarm bells ringing , and how I had added to that by going radio silent on the Wednesday, they thought the worst that I had been taken down for emergency surgery.

I’ve had a conversation with my parents about it all and how they’ve told me I’ve got to be honest an open with them and generally just let them in, I don’t have to do this on my own. Thyeve told me I might be strong but I’m not superwoman I’ve got to let them and others in and accept and be honest that I’m not always just “fine”. Joe’s response..  ” right,OK you’re one of those” I am indeed. Joe appreciates me telling him and letting him in on this,  see look I’m cracking up ,giving the game away and giving that mask up,my walls are slowly coming down.. question is can I keep it up?

It’s really good that Joe is now aware of this side and element of me. Going forward Joe wants me to try going slowly, slowly being the main word, let him in and open up, and slowly increase the hours of osia usage ,I can’t go from nothing to everything, as much as I’d love to this just isn’t an option. Joe’s been brutally honest and said how  if he’s being honest and real with me, how he doesn’t think they’re ever going to get me to a point where I can wear the osia all day everyday, he doesn’t expect this to be realistic for me,nor is it a realistic goal to aim for either. Joe mentions how when he checked the site earlier there is some muscle tension in my neck (right sided) which is a side effect of the implant due to how and where it sits,  this could be contributing to the irritation and issues I’ve been having- so I need to learn and figure out how to massage my neck ,as I don’t have anyone to do it for me, challenge very much accepted.

It’s questioned whether I need to be wearing the osia in quiet environments , I haven’t really been wearing it at home. I’m wearing it for 2-3 hours maximum then removing it. I want to do more, but at the moment, I just can’t. We’re setting 3 hours as our goal, and then we will try to move to 4 hours, then 5, and so on.

Joe suggests but quickly retracts a thought  that perhaps I shouldn’t use the osia when I’m not on childcare, he retracts saying ” yeah actually on second thought scrap that, because you’re always on childcare aren’t you” I am indeed only times I’m not fully on childcare is when I’m here or choir rehearsals/ performances but both of these are times I need the osia. Joe was very much, yes, point taken, but he was happy, and we laughed it off, which is always the main thing.

I ended up seeing the full team today as Haddy also popped in as she needed something or to speak to Joe or both, I can’t fully remember.. told you I’m popular and very famous around these parts. Everyone is in agreement, though, that I look so much better and healthier – Joe and makeup for the win,so all in all, a really successful appointment.

A Mother’s Instinct.

3 years .. I’ve been fighting for an answer. ..

Finally. Today I’ve been heard and I’ve got the answer, an answer I’ve very much been expecting and deep down known from the day  my little lady was born.

She has a mild – moderate deafness to her left ear and can not locate sounds – especially in busy/loud/ noisy environments ( just like her Mummy). I’ve said this  since her newborn hearing test, she couldn’t hear. Finally, now we’re  not far away from her 3rd birthday, I’ve got that answer in black and white, and a referral is now , finally being made to ENT. The glue ear is still very much there too- its currently been present for 7 months (documented). However, my mum instinct has always told me it’s been there and that she’s never had 100% hearing from the left. I just knew.

A successful appointment with her nursery key worker and health visitor yesterday to refer and push a couple of other things that I’ve noticed, and finally, we’re getting somewhere. (No hearing related, I will talk about them as and when we have a diagnosis and / or I fully know what the score is)

I am so proud of her and how well she has handled all of this and the regular hearing tests. I always knew it wasn’t for nothing, that I wasn’t pushing or fighting unnecessarily.

I’m never going to stop fighting for her. I’m very much aware that the fight is only just beginning, but I’m not backing down , I’ll forever fight her corner.

I’m incredibly relieved by this outcome. I’m so pleased I’ve always exposed her to BSL from a very young age and the deaf community.

Always trust your mum instincts. Your mum instincts roar for a reason, trust in them,believe in them, follow them, and don’t ever ever give up fighting for them.

Welcome to the club, baby girl . Love you to infinity and beyond🦻🤟❤️

RNENT Hospital appt 08/03/24

Apologies for radio silence. I would be lying if I said the last few weeks haven’t been tough going or a bit of a battle. Joe is definitely seeing through me and getting those walls down, i think for me
the biggest thing for me is the  fear of losing the implant,but ultimately, there’s a lot going on under the surface.

The last few weeks have taken a  toll on my daughter who is massively struggling to trust me right now,not knowing if  mummy is OK, when mummy’s coming home, why she’s suddenly and unexpectedly been left with my parents .she is massively clingy and very emotional that she’s needed me a LOT more recently . There’s been a lot of “mummy don’t leave me”, “mummy I need you”, “mummy I want you”, “mummy no go hospital”, “mummy I worried you”, “mummy stay me” “Mummy stay sofa” (I wish I never sit down 🤣) , “No want nanna grandad want you”-

It is hard, but equally, I’m proud that she’s able to voice her worries to me. She’s an intelligent little girl,I don’t hide things from her ,but equally I know she still doesn’t fully understand and to her It probably seems I’ve abandoned her,  I don’t love or want her- couldn’t be further from the truth.

Today, I’m heading to…well… let’s be honest. I don’t think I really need to even  say where anymore do, I 🤣.. but  yes, I’m heading up to London for a hospital appointment at The Royal National ENT & Eastman Dental Hospital ( fancied a change of scenery from UCLH, plus I do prefer my hospital and team) .

Today, I’m seeing Haddy. This appointment is a planned and  expected one. It was due before all of the recent fiasco.

The appointment today was scheduled after my 10 day post-op check in December  for a medical check, essentially just a full MOT to ensure everything is OK, due to the fact that I was still expirencing some dizziness and bouts of  light-headedness. As a result, Haddy decided it would be a good idea to check in and review things in 3 months’ time. It totally makes sense….so here we are..

I have, of course, seen haddy since December. I saw Haddy  a couple of weeks ago for an urgent appointment that  I  requested due to a few issues with inflammation and swelling, which led to me being admitted into hospital the first time.

It will be good to attempt a more successful (hopefully) take 2 of a couple weeks ago. I can’t, however, shake the feeling of, but do I actually need this appointment? in the grand scheme of things, yes, absolutely. It makes sense.

I was discharged exactly a week ago today from my last admission, so it absolutely makes sense to get checked over. I just question if it’s going to be a quick in and out within a minute or two and a waste of time? Especially as I received a message Monday saying I have a 30-minute consultation  appointment with Joe next week to check on things.

Don’t get me wrong, I love Haddy to pieces,I’ve known her since I was 18,  but I can’t help feel the checks she will do today are only going to be done next week anyway.

However, I know it’s probably better safe than sorry and to attend, that way, if there are any issues, it can be dealt with quicker and / or  logged for Joe ready for next week .I decide it’s also probably a good shout as I’m on antibiotics until monday  so that way it checks if they’re working too, ,It will be  more information collated for Joe and moving forward too.

I can’t lie. I do think it would be better if today was an audiology review, though, as  this is due.  In my opinion, it just makes sense to do that before I see Joe, as the review is for repeat speech recognition testing ,speech in noise, and fresh hearing tests. Again, this would be more info collated for us to discuss next week to be able to put a new plan in place for how we move forward and where we go from here.


I’m travelling into London with no ears.. urghh… The exhaustion. By the time I get to Tottenham Court Road, wow!.. I’m drained. How did I do this before? It makes me a little sad for the life I used to live.  I decided now was the time to put both ears on.

My Osia proceeded to fall off 7 times between Tottenham Court Road and Goodge Street ( literally minutes) .. I persisted.  By the time I started walking to the hospital, I had lost count how many times it had fallen off, despite it being in the correct place and position.

I arrive at the hospital and try again,I can’t even get it to connect whatsoever, checking in at Reception proves… interesting… to say the least, I’m directed up the 5th floor. I decided that despite having half an hour until my appointment to just go straight to the 5th floor,i could always sit and read my book for a while.

I attempted getting the Osia on again,  numerous times.. nothing..  I’m just getting frustrated and making the area sore.  I don’t  see any way how strength  2 is strong enough.  Though I had managed it, I dont seem to be now, im convinced It NEEDS changing back. I’m  hopeful that  Haddy can pull some strings and get an audiologist to sort it out. Yes, I’m going to say something ( you  can tell it’s really bothering me if I’m choosing to advocate and speak up about it)

Anyway, rambling aside..  Haddy called me through for my appointment at 11.40am ,20 minutes early which is absolutely fine maybe the patient before me didn’t need the full time allowance, or maybe they didn’t turn up or maybe Haddy started earlier. Anyway, the appointment goes well, but it’s very quick and brief..

I went in expecting to update  Haddy on everything that’s been going on , instead, no, she was already fully aware,which is great because there’s been a fair amount at the moment,though in some ways it’s nice to be asked as it ensures everyone’s on the same page ,everyone has all the correct details etc- things can be missed whether thats me with my deafness missing information or where there can be a lot of information it can be overwhelming or a lot to process and take in etc.

Haddy asks me  if my GP had scared me  by telling me I needed to come back in as an emergency. I explained that no the GP  hadn’t scared me and what had happened,I was and still am totally fine about it it was more the not being able to get a message to the team that worried me with it being a Friday evening and out of hours.

Haddy was aware of the fluid an asked if it had been removed, I explained how it had been attempted but we had only managed to get 1ml off, so a super teeny tiny amount.

Haddy asked to have a look at my Osia site. Everything looks  fine with the actual implant.  Haddy tells me how she thinks it’s just a skin issue as opposed to a problem with the implant. This is reassuring but equally it worries me as I’m only days away from completing the course of antibiotics and I’m still having a few issues, such as I believe there’s still some interference between the internal and external magnet due to it not staying in place. I still have some tenderness and unfortunately the osia is starting to become uncomfortable to wear with my glasses, so much so I’m currently only able to wear the osia for 1-2 hours which isn’t great.It is however still early days in building up and anything is better than nothing, though I can’t lie it’s not quite where I want to be or expected to be at this point. I know I need to be patient. These things take time.

It’s frustrating not to have answers or solutions to these issues, but equally, I get it and understand that this isn’t something Haddy has the answers for and can only treat what is presenting.

 Haddy asked to look in my ears to check everything’s OK there,  She forgot she couldn’t look in my right ear, which is always something I see the funny side in- honestly it’s not an issue I’m used to it and I tend to make the sword in the stone joke about it. Haddy then looks in my left and all looks OK, which is good to know that at least one ear is behaving itself

Appointment over done ,dusted, and I’m already halfway back to the tube station by 11.50am. I did say it was a quick one 🤣

Today was a veerryyyy quick and brief appointment,not all entirely a bad thing, though… I guess… it can just feel a little disheartening and frustrating after travelling 2 hours to get there to be in and out within a matter of a couple of minutes ,feeling no further forward or reassurance.

A few new symptoms or oddities, perhaps the better wording may be have begun creeping in, still a bit of tenderness , but I’ve got another few days of antibiotics left.. Sometimes, you just need a killer pair of boots to guide you

I’m looking forward to next weeks appointment, though , with Joe. to hopefully get some answers and a plan going forward ,I’ve so much bubbling away under the surface I don’t fully know where to begin, but I need to let it out and let Joe in . I hope I can be brave enough to lay myself bare,honest, and open .

UCLH Admission 01/03/24

Well, happy March everyone how are we 3 months into 2024 already?! That’s madness, and yes, as you’ve probably guessed from the title, I’m still in hospital.not quite how I expected to start the month,but you know.  I’m alright, though, and I’m getting there. that’s all that matters. ..

9:00am– Mum texts me to ask if I’m alright and if I’ve had a better night sleep. Typically, last night was actually the quietest night on the ward yet. Not just because of less observation as my lovely nurse moved them about knowing that I was under strict instructions to rest,sleep, and take it easy.. I didn’t sleep well at all. Typical really isn’t it when you can sleep. You just can’t.. I guess at least I’ve been able to rest, though. I’ve been fed and watered this morning. As far as I’m aware, the plan is very much to get me home today.

Mum tells me to keep her updated and to let her know when I’m discharged, and she will get dad to come up here to collect me. I tell her I’m fine and I’ll get the train and tubes home, especially if dad’s working today. Mum’s reply…    ” No, you won’t.” I can’t lie. I laugh and reply. I’m fine ,mum laughs at this. She reminds me that I passed out on the toilet floor yesterday and how they have both spoken to Joe.. okay.. okay… point taken… maybe…

9:54am– ward round doctors have just come round and are a little baffled as to why I’m still here as they say they wdfe under the belief Joe was happy for me to go yesterday.  I explain the situation of what happened and how I didn’t get back to the ward until just after 7pm,so the decision was made for me to stay again overnight due to still needing to wait for discharge letter and  pharmacy. The ward round doctors were absolutely fine about this and say that i can go home today, and how they’ll get the discharge letter and pharmacy sorted out.

Now… this wouldn’t be me if it was as simple and cut and dry as this  would it. Ella, the lovely HCA who has looked after me for the majority of this week, as a result, has cottoned onto me and my little ways. Ella interjects and says to the doctors (she was doing my observations when  they came round) that she’s not sure I’m telling them the full truth… Ella tells them how she has concerns and is worried about their decision to discharge me.

Ella tells them she’s concerned that I’m saying I’m fine to go home when actually I perhaps am not, Ella explains to the ward round doctors that she has  concerns over my mobility and has concerns whether home is the best place for me right now, explaining that yesterday I had been found passed out on the toilet floor after feeling dizzy, how I had been unable to mobilise as a result I had been ordered to use a wheelchair for the rest of the day, the wheelchair was actually still by my bed,so I couldn’t even deny this. Ella was absolutely right to express her concerns and I do not blame her whatsoever. I’m actually impressed how quickly she’s got me sussed.

The doctors take what Ella is telling them very seriously and they tell me how they cannot let me go home if I’m still unwell, unable to mobilise and or at risk of a fall or passing out again. They explain it’s highly dangerous for them to do so, what will I do if this were to happen at home? Do I have support at home? I say I do and Ella gives me the look before telling the doctors that I live alone with my daughter.. yeah.. I’m busted on that one as my daughter isn’t old enough to look after me or get me up off a floor if required, though I suspect she would jump on me,possibly give a good whack and shout “mummy get up not bedtime it sunny time”, as a result the doctors decide to hold fire.

The ward round doctors agree I can go home.IF and only IF I allow them do some extra checks and monitoring and IF and only IF they’re happy and satisfied with the results of these and if Ella is happy that I can go.  It’s a fair deal and they have a very fair point, as they explain if I go home before I’m ready and something happens to me then they’re liable for it and there jobs are then on the line.

10:00am–  Ward round doctors happy we have an idea of a plan and I have goals to work towards before I’m fully accepted to be discharged they leave fo see other patients. Ella apologises, telling me how she’s sorry for saying something to them but she just doesn’t want me to go home and become unwell ,especially knowing I have minimal help and won’t accept help. She tells me how she’s just worried of me becoming unwell while looking after my daughter and how my daughter deserves me home on top form and I deserve to be fully looked ,rested, recovered and back on my feet first before going home where she knows full well I won’t be taking it easy.

I’m not cross or annoyed in the slightest and I reassure her of this and how she’s done the right thing, she wouldn’t be dping her job if she hadn’t have said something and I cannot argue with that at all. I actually appreciate her saying something, I tell her how I’m impressed how she has me sussed out.

10:54am– I’ve been busy working hard with Ella pretty much nine stop since ward round to get back on my feet and to a point that everyone’s happy and reassured enough for me to go home.  Yes maybe I shouldn’t be rushing and should stay again, but I’m fairly sure mum’s had enough of childcare duties and that this admission is impacting on my daughter, so.i don’t have much choice,  I need to get home today.

So here’s what I’ve been up to this morning with the lovely Ella:

🔴Two consecutive laps around the ward – blimey the ward is huge! I was relieved when we had finished the first lap thinking phew we were done! I had done it.. oh no,we went again,  I think Ella could still see through me that I had struggled with this and wasn’t letting on ,so we did a second round.  Fair play to her, let’s be real my daughter is going to have me up on my feet, a lot .. how often do we get five minutes to sit down with young children about? So I’m quietly relieved she did this.

Throughout both laps Ella was very much there and I was under strict instructions to tell her if I needed to stop, became light headed or dizzy, she also kept a very close eye on me making me stop at intervals knowing I was just pushing through  and keeping quiet.

🟠Heart rate and blood pressure checks on completion of the two laps around the ward

🟣Being laid fully flat for 5 mins and observations taken again

🟢Blood pressure and heart rate tested from laying to standing

🔵Standing still on the spot for 2 minutes and rechecking

There were some minor dips in results, however nothing that Ella, the nurses, or doctors were massively concerned about…so…..

.I’m free to go home on advice to take it easy ,rest and sleep . Instead of taking Monday off of work…what have I just done?.. I’ve agreed to cover for 2 hours (10-12) and work a full shift on Wednesday.. yeah…

11.30 am I am currently awaiting dad to collect me from the patient discharge lounge.

13:30– Dad’s not here yet, but should be here any minute .. hopefully…

14:10– still no sign of Dad..

14:20– he’s here! Turns out Dad had gone to the wrong hospital.. he had gone to Grafton Way, where he had collected me from after my Osia implant surgery . Dad, now correctly, in the right hospital,  I’m free to go home .

17:20- I arrive back at my parents’ house. My daughter, although she has been told I was on my way home ..it hasn’t fully sunk in. I walk in and she’s super excited ” Mummy , Mummy, you back that very cheeky ypu tease me” I’m.then not allowed anywhere near her or a cuddle as she screams absolute blue murder, everything is ” Nanna” ” get Way me” “not want you”, ” want my.nanna” ” you go back hospital”

It’s hard seeing your own child stressed and distressed seeing you, pushing you away when all you want is to cuddle them, reassure them that everything is OK,  but I get it. I’ve in essence abandoned her for the week, she’s got used to.me mot being around, she’s just got used to a new routine with Nanna and Grandad and boom there I am again dragging her away from this, changing everything. She’s probably cross and confused unsure how to feel or process it all.

18:00- I gather all of my daughters’ things,  load my car, and drive us both back home to.my flat. My daughter screams,cries, and lashes out she just wants her nanna and grandad and things to stop changing. I get that. Bedtime is hard tonight as she won’t allow me anywhere near her. Constant screaming, crying and shouting at me. We both end up in tears. I know this is my fault. This is my doing, and I feel so horrifically guilty, I’ve let her down big time.

UCLH Admission 29/02/24

5:00am– I’m woken for my first cocktail of the day (paracetamol, codeine and my iv antibiotics)

9:00am– The doctors have come round  this morning (the one who told me I was fine to go home yesterday morning despite fluid on my head and the level of pain i was in)  he hasn’t really said anything different to yesterday morning.

The plan is I’m seeing Joe later this afternoon ,a further ultrasound, and then they will “try” to aspirate the fluid, and then apparently, I will be discharged home on 2 weeks worth of antibiotics… nurses have stopped the antibiotics this morning.. so I’m confused .How does that make sense?! Surely it makes sense to continue the antibiotics if I’m going home with them? Unless it’s a different antibiotic, and I need to take a break before switching? Can’t say I’ve heard that before, but who knows..

I took that all with a pinch of salt after the last couple of days , I will wait and just see what Joe says before I actually leave,  whether he’s happy with this or not. It also depends on what time everything is done due to a 2-hour travel home too.

 I mean, realistically, will the scan and aspiration actually happen? I was promised it would be aspirated yesterday.. Originally, the scan was supposed to be Sunday, then Monday, so we shall see….

I am still not eating or drinking , feeling sick, dizzy,  sore, uncomfortable, and pain around the implant area. I know the lack of eating and drinking is probably contributing to that though.

We won’t mention…. that  the ENT doctor had a mask on…AGAIN!! This really  doesn’t help matters where I’m continuously having staff speak to me as a deaf patient on a busy ward with masks/ face coverings. There’s even a note on my bed explaining !!

Sorry, I’m just frustrated and deflated with having to keep constantly fighting for basic deaf awareness and plans constantly changing/ mixed communication.. On a typical day It would be frustrating, but  it wouldn’t affect me this much,  I think mixed in with not feeling great and being in   hospital, it’s taking its toll a bit now.

10.00am – The nurse looking after me comes over and introduces himself. He seems very clued up, hurrah! He knows the plan of action today, knows who im seeing (meaning Joe and the scan today and audiology tomorrow)  He asks how I’m feeling, I’m honest an say I’ve got a lot of pain around the implant, feel sick,  dizzy,  and I’ve been a bit lightheaded when I stand, not eating, drinking etc he’s told me I’m not to move about, if I want or need to I’m to ask for help from himself or Ella.

He checks my medication an says I’m not due anything yet, I ask about the tramadol that should’ve been prescribed as PRN .He tells me it hasn’t been prescribed,  so he will have to speak to the doctors if I need/ want something stronger. It’s a joke ,  Since Saturday, I’ve been told I would be prescribed stronger pain relief and that I’m to ask for pain relief.. and again, I’m  being told nothing has been prescribed? I don’t need it at the moment, but it’s not quite the point..

10.30am – A member of staff is saying there’s an ENT doctor on the phone,nobody knows anything then my nurse overheard this , he’s dropped what he was doing to take the call (yes it was for/ about me) He’s on the phone a while , before he comes over an tells me that they’re arranging transport to take me to my ENT appointment,  so they’re currently trying to sort a car or taxi out.. huh? What?

I totally understand that as an inpatient you have to be escorted/ taken to appointments,  previous admission Lucy took me over to the ENT Hospital for my emergency audiology appointment,  my scan Tuesday I was taken in a wheelchair by a porter and left under the watchful eye of one of the members of staff.  I totally understand that if anything happens from me leaving the ward- getting to the appointments and vice versa it’s kind of on their heads, once your admitted your essentially handing yourself over to the teams to care for you so they become responsible for you. I just don’t understand why a car/ taxi from here to the ENT Hospital. It’s literally a five minute walk,is it even worth turning the engine on? Or the petrol?  I don’t understand why I can’t be walked over or even taken over in a wheelchair if deemed unable to walk?

It makes me laugh how they’re deeming me too unwell that I’m unfit to walk or be wheeled a few minutes over the road, yet I’m safe to go home on my own where I need to get two tubes,  a train and then a 10/15 minute walk on my own totalling approx 2 hours.. but I’m too unwell to go 5 minutes over the road alone?

OK, I take it back.. I’ve asked about walking or worst-case scenario a wheelchair , I’ve been told a car/ taxi is being arranged due to my dizziness. I can’t lie as the morning is going on ,the worst I’m feeling. I’m struggling to move about even the smallest of moments. My head feels very woah- a bit like im drunk ( there’s a memory I’ve not been drunk since my 21st – wasn’t intentional) I honestly feel like death, its just frustrating when I want to get up, shower and kick back and fight this.if I’m honest I actually felt better when I was first admitted vs how I’m feeling right now.

I’m not eating as I’m struggling to sit up,I feel full after the tiniest morsel and feel as though I want to vomit. I’m trying though,I may not be eating, but I’m drinking, just..  I’m drinking sips of water, sips of sugary tea and little cartons of fresh fruit juice.  It feels anything im intaking my body just wants to expell. Thankfully it isn’t though.

I feel like my body is just giving up and failing me. I dont know if its stress, worry, anxiety, or a whole combination of this,or if there’s actually something more sinister or serious going on, my mind is going 100011 miles an hour,  is the infection taking hold, is the infection going to my skull , is the fluid increasing and putting additional pressure on my head, honestly if I had an off switch for my thoughts I’d be pulling it out at the mains.

11:00am– I’m given paracetamol (oral) and codeine . What makes me laugh with the whole needing a car to get to the ENT Hospital is that it’s literally a couple minutes  walk between hospitals. I understand someone has to go with me,however when I was inpatient last time and had the emergency audiology appointment I  was told a porter or nurse would take me in a wheelchair, myself an Haddy argued I could walk and I was fine to go alone.. we met in the middle, and a student nurse walked me over and waited outside .

I’m confused as to why  I need a car? If it’s because of the dizzy episode last night, that makes sense ,but then surely it doesn’t make sense to be sending me home? As I will be travelling alone on 2 tubes, a train, and then a 10/15 min walk back to my parents’ house, totalling approximately 2 hours ,but I’m not allowed to walk 5 minutes to an appointment?

12.15– I go to the toilet to get washed and ready for my appointment this afternoon.. I take it very slowly just to be on the side of caution ,plus I’m slightly dizzy,I’m fine, though.

13:15– Someone knocks on the toilet door to ask if I’m OK. I shout out that I’m sitting on the floor and that I’m   very dizzy, I’m told ok, I’ll be back in 5 minutes.. ( I wasn’t aware I had been in there this long. I thought I’d been in here 5 minutes if that) – I’m found in the toilet on the floor. The nurse tells me he can’t come in because he’s a male and I’m female, so essentially.. we have to wait until I can get myself out. 

13.20– I manage to get myself up  and out and somehow manage to get myself back to bed, head and chest pounding. A set of observations are done. Everything looks normal. What happened? What is going on? How is it 1.20pm? The last thing I remember was going in the bathroom standing at the sink to get washed.. how and why was I on the floor?

While my nurse and HCA are monitoring and checking me over , I will admit ,yes I get a telling off as I had been told this morning to call someone if I wanted to get out of bed and … i didn’t.. ok, point taken, I understand I could have been seriously injured or unwell. I’m asked why I didn’t use the emergency pull cords, I explained I hadn’t realised I was on the floor until I heard the banging on the door. To be fair where I was,i was in between the two cords.. typically .. Another  member of staff goes to find me a wheelchair.

13:25– I’m helped into a wheelchair and  I’m wheeled by two members of staff ( one pushing me, the other accompanying, I guess in case I pass out again) they decided to take me as they too said how crazy a taxi fare would be, and how expensive and silly it is to pay for an ambulance to take me .. yes…they were planning to get a patient transport ambulance to take me.

Im headed to the ENT Hospital to see Joe. Once we arrive on the 1st floor, I’m offloaded into one of the  chairs in the waiting area to wait for Joe, and the wheelchair is put behind reception.My appointment isn’t until 2:50pm . I have a bit of a wait! They had  got muddled with tomorrow’s appointment with audiology, which is 1:30 pm  

14:00– Joe puts his head round the door ans asked if I’ve had the expiration done , I haven’t, so Joe tells me to head down to floor -2 where Dr Moorely and Louise are waiting for me to do the scan. I’m told to let reception know that he has sent me down and Dr Moorely is expecting me, once finished having the expiration, I’m  told to come back to see Joe for our appointment.

I ditch the wheelchair, I can’t wheel myself in it. It’s the sort that needs someone to push it, I think, and I’m not asking for it. I can do it. I can get myself from here, into a lift, and go down 2 floors. What’s the worst that can happen.. right?

I managed to get myself down to-2 absolutely fine,no issues whatsoever. Reception were a bit confused as to why I don’t have an appointment,  douvle checking who has sent me, whose expecting me and why. They ask “oh are you the girl that’s inpatient” that’s me cannula and red band in all their glory.. they phone through to Dr Moorely to confirm with him that he’s expecting me, he confirms he is ,I’m told he will be with me as soon as he can ,but there may be a wait ,that’s fine. I’m told to take a seat while I wait.

I can’t lie. It brings back memories.. this is where I came and sat waiting to get my BAHA removed it feels a little surreal and emotional sitting here again.

I don’t wait too long before I’m called through, though I only know I’ve been called by process of elimination as nobody moves and is looking around, oh .. I guess that’s me then? I approach and double check, it is indeed me they’ve called,I follow the lady through – I’m guessing Louise? It’s not the same lady I saw on Tuesday, and she doesn’t introduce herself, so going off of what Joe said, I’m assuming this is Louise.

Once in the room I’m greeted by Dr Moorely ( the doctor who was sat in the scan Tuesday who loaded the images of the osia up to help the lovely radiologist work out what she could see and stepped in to help when she wanted a second opinion) Dr Moorely has a student with him ,I’m asked if I’m happy for the student to observe, absolutely no problem at all.

The student smiles and says hello but seems very nervous. I’m asked to lay on  my left side on the bed. Dr Moorely confirms that when I had seen him on Tuesday he had found fluid building up around the transducer and today the plan is to aspirate (remove) the fluid off if we can and then get it sent off to the lab for testing. Everyone happy it’s time to lay down, hair moved out the way as much as possible, necklace off , ultrasound gel on.. its show time..

Dr Moorely begins scanning to confirm and locate the area where the fluid is and compares this to Tuesdays scan too, with the fluid having been successfully located, Dr Moorely then injects local anaesthetic into various points around the area where the fluid has been found.  It’s not painful or uncomfortable. I barely feel it, to be honest,although in one area, it slightly stings but nothing horrendous.

Local anaesthetic in Dr Moorely uses the ultrasound to keep an eye on what he’s doing once he’s happy he’s in the right place the needle is inserted to begin aspirating.First try we got nothing, Dr Moorely asked if I was comfortable and happy for them to try again in a different location.

 I’m fine to keep going and consent to them trying again,  so in went a second lot of local anaesthetic.  I very much hold my breath, are we going to have any joy? Im really hoping second times the charm.. thankfully this time Dr Moorely does manage  to  aspirate.

Although Dr. Moorely is able to aspirate. Unfortunately, he was only able to get a very miniscule amount out.Not great, and honestly, it’s a little deflating,  I can’t lie it worried me. What happens now? Will this cause more issues? Will the fluid increase? Is there even enough of a sample to test? – something Dr. Moorely also questions, though he reassures he will send it off anyway in the hope the lab will accept.

Equally, it’s reassuring that no pus came  out though, had pus of come out, it wouldn’t be such a great result as it would be a high indicator of an implant infection- I very much suspect if this had been the case, the outcome wouldn’t be great..

Dr. Moorely tells me that he will  message  Joe to let him know what’s happened  and to tell him I’m heading up to him now. I thank Dr. Moorely and walk out somewhat relieved it proved successful even if we didn’t get quite as much fluid as we expected. Mind you if we didn’t get much out,hopefully it means there’s not much in there, and we’ve caught it early.

I thank the receptionists as I leave the department/ floor to head to the lifts to go and see Joe.

Once I’m out of the double doors and back by the lifts, I take a take minute before pressing the button for the lift. I need a minute to process, gather my thoughts- plus my phone is going slightly bananas with messages (mostly mum) asking if I’ve had it done, what was happening,  how it had gone etc  ( I promised I would keep her updated) so I took a moment to relay this information to her in a quick message.

Once Mum is updated I call for the lift, instead of going straight to the 1st floor, literally three floors up, where I know Joe is very much expecting and waiting for me,I instead press for ground floor. 

I know, I know.. what am I doing? Where am I going?  I don’t even know. I get out at ground floor and find myself walking out the entrance. Where am I going?  What am I doing? I  can’t even answer this.. I stand outside for a minute or two and just take a minute to get some fresh air.

My mind is everywhere,  part of me says run.. what?! Where to?! Why?! What a stupid thing to be thinking.. don’t worry. I don’t run. Instead I take a breath, then turn myself around,  walk back into the hospital, pop to the ground floor toilets, take another moment,  give myself a long hard look and a pep talk. Come on sort yourself out Bethan you’re a mess, what’s wrong with you,pull yourself together. I’ve no idea what’s got into me.

I take 5 before I head up because I just need a minute ,Poor Joe is probably wandering where I’ve got to, what’s taking so long and possibly sent a search party to find me by this point. For goodness sakes seriously this is ridiculous I need a good slap to snap me out of whatever this is. Part of me thinks if a search party has been called do I just run/ hide, but again what? Why? This isn’t logical.. this isn’t me, thats only going to worry everyone more .. Joe’s only going to end up phoning Dr Moorely to find out where I’ve got to, a search party is going to then be send to try to find me, maybe the 5th floor where I’m typically seen would be called an on alert.. if/ when they can’t, the ward is going to be phoned to see if I’ve gone back there.. when they realise no, I’m not there either, that’s then 3 floors and a ward on alert of my disappearance,  so next steps surely is they’ll notify security and then what? Police? My parents? Is it worth that? No. It’s stupid.

Thankfully, I snap myself out of it. It massively scares me ,this isn’t me. Where have these thoughts even come from?

I don’t know how to feel or what to think. My mind was running 100001x an hour ,yet I had felt positive although weak when I was first brought over here.

I’m annoyed at myself because I want to be in a better mindset to speak with Joe and address everything, I want to be honest, open and offload but I’m not i don’t even know why or where my heads at.. I need a good shaking. Snap out of this Bethan, you’re scaring me, let alone everyone else. Enough.

Don’t panic ,I snap myself out of it and I DO go back to the first floor to wait for Joe, I’m not sure why he wants to see if I’m honest besides to discuss the aspiration outcome.

I’m a mess- literally in every sense of the word.a bundle of nerves, mind all over the shot, not knowing what or how to think or feel or even where to begin to offload everything as I’ve told myself I’m doing it. I need to. I need help. The only person I trust and know can and will help me is Joe.

I don’t wait long before Joe puts his head around the door and signals for me to come through.

Everyone needs a Joe Manjaly in  their life. Honestly, I love this man !! If anyone can get through to me, it’s Joe. If anyone can fix me, it’s Joe! That man has magic powers . I’m sure he studied at Hogwarts or something…

After a rough old week, all it’s taken is a chat with Joe and taking a minute to just breathe, and I’m feeling more reassured

I didn’t offload nearly as much as I should have or wanted .Instead, I chose to listen and just take it all  in ,although I absolutely need to offload more next time I see him, though the poor guy probably despairs seeing my name continuously popping up. Not to mention the paperwork and stress I probably cause him.

Bloodwork, numbers, observations, etc. are normal. Essentially, the only thing abnormal is me 🤣 ( Joe didn’t say it quite like this though) Joe performed some balance tests on me, I don’t mind doing them, I know it’s all to help, especially as he’s told me he’s worried and wants to know what’s going on ,as he says when he saw me Monday i was stable and dping well ,now all he’s getting is emails and calls saying I’m declining,pain is increasing and I’m dping worse. I feel awful that Joe’s worried about me.

The balance tests are fine just simple following Joe’s finger with my eyes, focusing on the bridge of his nose while he moves his finger from side to side, Joe holds my head ,one hand either side for support moving my head quickly from one side to the other, has me stand up on the spot.  It’s the final one that I dread . I’m asked to stand up, but to close my eyes. I’m dyspraxic so this is a hard one at the best of times… oh dear.. Joe sees the hesitation and reassures me he’s right there and won’t let me fall, if I go to fall he will catch me ( he’s sitting on a stool on wheels so he can move quick if needed plus he’s not too far away anyway a matter of inches)  seeing the hesitation Joe Comes  little closer and leans forward in preparation to catch/ stop me falling.

Trusting Joe like I do. Knowing, I have a chair right behind me and Joe’s right there in front of me. I’m safe. I take a breath and close my eyes. I’m fine,I’m safe, I’ve got this.  I must admit I do wobble, and I then ensure the chair is pressed right into the back of my legs for stability.

Joe checks absolutely EVERYTHING .

Joe’s happy with how the osia site looks. Reassures and confirms that  the fluid is being sent off for testing and assures me that as soon as he knows anything. Anything at all. he will call me to come in ASAP and discuss it all with me.

Joe explains how he  thinks I’ve just gotten myself into a bit of a state worrying, anxious, and stressed.  Who me? Never, no. that’s not me… I’m quietly annoyed at the suggestion. I’m not in a state, I’m not anxious, I’m not stressed, and I’m not worrying.  I’m fine.

Joe asks if I offload my worries onto my parents? Maybe that’s the problem, I’m worrying them with my worries, which in turn is worrying me? I explain I don’t.

I don’t offload to anyone. I’m very much ” I’m fine” , “oh it’s nothing” which maybe in hindsight  doesn’t help, especially when I broke down in tears yesterday on the phone to mum,  mum instantly knew something wasn’t right ,because I just don’t cry, worry or stress about anything. It’s not me. I’m honest and tell Joe about this. I feel it’s important that he knows. Though in hindsight, I think I’m proving his theory, aren’t I?

I’m honest and tell Joe  I’m so worried about losing the implant and how I just can’t lose it . I can’t, I just can’t lose it.

Joe  kindly tells  me from now on any worries at all.. any at all..  to offload them on to him . Joe tells me that at this moment, it doesn’t look like I am losing the implant, and how that’s his job to worry about that, not mine. I’m not to worry about it. Easier said than done, though, but it is very much appreciated and reassuring.

Joe reassures me that there will be no mention of explantation until if/ when absolutely necessary, until then anyone who has concerns or believes it needs explanting or thinks are heading that way, need to speak to him about that,not me. Joe and only Joe will discuss this with me IF it has to be addressed/ discussed. I feel silly and like a little kid being protected from the big bad wolf or a monster under the bed,but honestly, it massively helps.

We have  a chat about my parents and their worries, Joe tells me how he spoke to dad.. oh dear. Joe laughs and tells me it’s fine, but tells me he can tell they’re worried and really care about me. We discussed what it is they’ve told me, im not told what took place on the call between Joe and my dad.. I’m not sure that’s a good or bad thing… what are they hiding and not telling me?.. Joe suggests that we speak to Mum on speaker phone to reassure her and so we can both speak to her at the same time,though I let them both do the talking. Joe tells me that anytime I want him to speak to my parents, he’s more than happy to… honestly, I’m embarrassed by  this. I’m nearly 30 , and I don’t want my parents to speak to my consultant. I’m not a little kid anymore, but it’s appreciated, I’ll bare it in mind.. I apologise to Joe for throwing him under the bus, explaining it was just one additional thing I didn’t need .

Joe tells me how he’s going to prescribe some antibiotics for me to  take home,  more for my reassurance than anything, and is going to schedule an appointment to see me sometime in March –  massively reassuring. Can I just hug the man? Honestly, how have I not sobbed all over him ? I’m impressed .

Joe, being amazing,  he has managed to pull some strings and get me an appointment today with audiology to prevent me from having to come back tomorrow. Joe said that as long as audiology are happy, then he’s happy for me to go home  today on antibiotics . He tells me I just  need to sleep and rest. (I didn’t tell him I’m not eating or drinking, but I think he knows.. I also know I need to do this) 

Right on cue Ying, comes into the room to speak to Joe, Joe introduces us as I don’t believe we have met before, Joe explains Chang is an audiologist and who I’m seeing today. Joe asks if he’s ready for me? I’m not sure in what sense 🤣 Ying says he is,but to just give him a minute or two. I’m asked to wait for him outside and he will take me to the 5th floor for our appointment.  I finish up with Joe before returning to the waiting area.

A minute or two later Ying comes over ,he explains he’s just finishing up with a patient on the 5th floor then he will be ready for me, he asks me to wait here and he will come to get me when he’s ready for me ,no issue at all. 

A few minutes later, Ying returns and explains he’s just a little caught up,however, he can see me at 4pm, am I OK to wait? That’s absolutely fine. I’m not going anywhere. I’m told to wait here and he will collect me at 4. By now, that’s about an hour,roughly so it’s not too long to wait and I have my phone so it’s all good. I promise I’m not running away 🤣.

4pm, as promised Ying comes to collect me and we head up to the 5th floor together, on route to the lifts I’m asked if I have my Osia,I explain how I’m not wearing it at the moment ,I have the Osia here with me in London but it’s on the ward. It hadn’t even crossed my mind in amongst the party on the toilet floor to pick it up before coming over here, I’m asked if I can go to retrieve it and then met Chang on the 5th floor in 20 minutes time. 

I’m being trusted, I’m behaving don’t worry ,no funny business ,no running off. I should technically be phoning the ward and asking if someone can bring it across or collect me, so i can collect it and then return me.. but .. sometimes you’ve got to be a little naughty..  right? I mean technically Joe has just said If audiology are happy I can go home .. so… what do I do?..

Yes, you bet I walk there myself. While we’re in the lift, we bump into Haddy, who has spotted my band.. we get chatting about what’s happened and why I’m back. I get out on the first floor with Haddy, promising Ying I will be back ASAP as he heads off to the 5th floor. I part ways with Haddy and head off to the main UCLH hospital..

I take it slowly but I’ve got this. I’ve got to do this,I’m a woman on a mission.. now question..  how do I get on the ward and back out undetected and keep myself out of trouble?

I get back to the ward and the automatic doors are opening for someone whose visiting,so I slip through with them.  I’ve made it undetected so far, no idea how but I manage to slip past the nurses desk undetected . I can see my bed and the coast is clear my Osia processor is sat on my tray,I quickly grab it and move as quickly as I can back out and off the ward before I’m spotted.

By the time I get to the lifts I’m out of breath from the few seconds mad dash. I take a moment to catch my breath while I wait for the lift.

I’ve done it. I’m back on the ground floor of the main hospital, aware im on a time limit, I walk cautiously but with as much speed as I can muster (it’s not much) and get myself back across to the ENT Hospital. No funny business, I go straight to the 5th floor, though I do think for a brief second how easy it would’ve been to have grabbed my bags from the ward and just left undetected..

Once on the 5th floor, I’ve barely sat down when Ying is ready and calls me through. Perfect timing. I’ve done it, just.

Ying  has a  look at the Osia site, and from his viewpoint, he is  happy that it looks and feels how it should. We’ve checked magnet strengths, and somehow, he’s managed to move me down to a strength 2, another person with magic hands 🤣 as nobody else yet has been able to. However, it wouldn’t be me if it was all plain sailing…. oh yes… here comes the but…

While Ying was wiring up my processor to the computer. My processor decided that it wasn’t having any of it whatsoever , we tried numerous times. Nothing. I mentioned I have recently had the same issue with the app. Ying fiddles about, takes it for a walk into the corridor, turns it off and on, unpaired and repaired it nothing .it’s having none of it.

Eventually, it’s decided that we just replace  it with a new processor, this of course had to be remapped and actually I can hear much better with the new one,so perhaps actually there was also a processor issue?

While in the appointment, I mentioned that my left aid constantly sounds like it’s raining (think heavy rainfall on the window). There was lots of fiddling about. We couldn’t fix that,so you guessed it…. I’ve ended up with a new hearing aid. It still took a lot of fiddling, but somehow, Ying has stopped that rain sound.

We’ve adjusted the  volume so that both aid and processor sound balanced. This takes a bit of fiddling to get it sorted. Im  conscious of time, especially as a couple of staff have come in to ask how long Ying is going to be and if he wants them to send his apologies..whoops..

A moment or so later Anne and one of the receptionist knock on the door, they’ve apparently been looking for me, they have my wheels and wanted to check I was still here. They’re closing up for the night so it’s left outside the door for me. Ying  comments on how it’s silly sending patients that are able to walk in a wheelchair,I agree to some extent,but I do explain this mornings situation . He asked if I should have walked back to the ward earlier and why I didn’t mention it.. erm… yeah… changing subject rather rapidly 🤣..

I’m  told I need to be seen by audiology again in around 3/4 weeks just to check on me and again for reassurance that everything is OK, however I’m told March is pretty busy so it could be early April, Ying tells me he’s not worried if it is slightly over and ends up being early April given I’ve got two new ears today. I’m asked if I can attend a weekend appointment, I explain it’s probably harder to get here of a weekend due to trains/ rail replacement and childcare. He suggests I drive. I mean I do drive,but there’s no way I’m driving into London, I just about drive to the nearest city which is a 20/30 minute drive because I hate the big main roundabout.. yes, even 9 years on.

After the appointment I phoned the ward for transport back , though I’m tempted to walk.. I’m not sure I can get away with walking back with the big heavy wheelchair and finding somewhere to dump it… i probably should behave .. I was told the lady who brought me over had finished shift. However, they would contact transport and get back to me. After a few minutes, they contacted me and told me  someone would come to collect me and ask where I am exactly in the hospital. I tell them I’m on the fifth floor by reception. I’m told to stay here and wait for them to retrieve me. It won’t be hard to find me it’s literally just me and 1 receptionist here, she’s waiting for me to go bless her.

However, it’s me.. and things don’t happen without a little excitement  along the way … Why would they go plain sailing?  that would be too boring..

Long story short… I got abandoned… yes, you read that right, and yes, really…. nobody turned up..

Between myself and the receptionist, we phoned the ward and transport to be told, ” they came and you weren’t there,” “they couldn’t find you. “… the whole floor is empty besides me and the receptionist and were right by the door… you can’t miss us or the wheelchair… the receptionist tells them how nobody has come up to the floor and again tells them where we are, we’re told to stay put they’re contacting them to find us…

A few minutes pass nobody is here, a further 5 minutes.. Still nobody the lovely receptionist calls again to tell them they’ve forgotten something as I’m still here.. she tells them we will head down to reception and await them there because they need to close this floor now and maybe this may speed things up..

I’m escorted down to the main entrance which is super quiet, it seems strange seeing it this quiet and dark ,we continue to wait… Still nobody. Reception down here are waiting to lock up for the night..

Eventually, after myself ,the lovely receptionist from floor 5 and main reception  phoning, and another two ” we can’t find you” despite me being literally the only patient left and being right by the reception desk I was eventually collected at 7pm. I was literally the last person remaining!

The man apologises and tells us how they sent someone else, but they  couldn’t find me. Apparently, they didn’t realise I was on the 5th floor – despite being told numerous times… as ENT Hospital staff said …left hand isn’t talking to the right hand.. tell me something I don’t know! It’s been like this all week.

Anyway,  7pm an ambulance arrives to transport me ,the lovely man who came to collect me wheels me outside tl the awaiting ambulance,  opened the back of the ambulance and then stops, pauses and says “wait are you going there” pointing to the main  UCL building in the very near distance..yeah that’s it. he asked if I was happy to roll back instead of going in the ambulance

I was more than happy . The decision was made that we would walk/roll, it was nice to feel fresh air, even if if was raining  and we had a nice chat. It just seemed pointless going in the ambulance, in the time it would have taken to load me up and drive the 2 seconds there, park up, get me unloaded we could’ve walked back and been in and sorted.

Once  back at the ward , I arrive to find my dinner waiting… stone cold. It had been sat there for 2 hours.. The nurses on the ward told me that they didn’t know where I had gone ,or where I was.. I replied ” I was where you left me.. the ENT Hospital”.. oh.. we didn’t know you were still there, why didn’t you call us… ermm.. we did…

I was told that the kitchen was now closed, so they couldn’t get me anything other than a cup of tea and biscuits ..

The plan had originally been for me to go home tonight ,however  just purely due to the time and how long it would take me to get home. My nurse looking after me has decided that I will stay overnight and go  home tomorrow. Absolutely fine. I think I’ve had enough excitement for one day.

8pm and nightshift come on and hsve hand over, The Nurse looking after me tonight comes over and introduces herself,  she is an absolute sweetheart,  has read all my notes, very chatty and has said she’s going to reduce the number of observations  on me tonight to allow me some sleep and as much rest as possible tonight.

Feeling much happier and better in myself ,I defintely think it’s the magic of Joe, partly wish I had asked staff to call Joe for me yesterday, so I could have  spoken to him,instead of getting myself into a state . On reflection, I think Joe had a very valid point. Usually, I’m the chilled out, whatever cucumber, but I can’t lie. My mind has been everywhere.I hate to admit it,but I think Joe’s spot on. I do think I’ve got myself worked up and I’m  state without even realising. It’s scary,but it’s true what they say about stress being a killer.

Now, to get back to being  the happy, chilled, whatever “I’m fine,” Bethan, and fighting another day to keep this implant because its all going to be OK.and if it’s not,I’ve got Joe.  Now, I  just need to open myself up a bit more and let Joe in fully. I know it’s what we both need.

Honestly, I can not thank Joe enough for all he does. Honestly, that man is an absolute godsend ,I could cry tonight, but in relief , all I needed was Joe.

My lovely nurse asks how today has gone and asks if I’m OK as I’ve not touched my dinner. I explain the situation of being abandoned and returning to it stone cold and being told the kitchen isn’t open . She can’t apologise enough for this, unfortunately the kitchen is closed so she can’t get me a replacement or heat it up,however she says it’s not acceptable that I’ve only been given a packet of biscuits and manages to find me a sandwich and a yoghurt, she also makes me another cup of tea.

Not long after another nurse comes over,I think she’s the ward sister/ matron she seems high ranking, she asks if I’ve got my discharge letter and medication and if I’m going home . I explain what happened with being forgotten at the hospital and not getting back here until 7pm and that my nurse had told me I need to stay due to how long it takes me to get home,she asks where I live, when I tell her she says ” oh wow yes that’s quite a way to go especially on public transport this time of night” and agrees it’s fine for me to stay the night.

UCLH Admission 28/02/24

9:00am– The ward round doctors came and asked how I was,I was honest and said I’m in a lot of pain, very sore and uncomfortable, feeling sick, etc .I  was told my scan yesterday was sent to Joe, who has confirmed the fluid build-up and inflammation, and that he wants it aspirated. Ward round doctor, however, said he didn’t agree ,he tells me it doesn’t need aspirating and how he feels we need to  do another scan first to check if there is still fluid and inflammation… I’m confused it was confirmed yesterday by a radiolgy doctor, as well as Joe, so why does he think today is going to be any different? Where does he think the fluid will have gone in less than 24 hours? Or is it to ensure it’s no worse? He goes on to say  how home is the best place for me..

I don’t agree home is the right place for me right now, given that there is fluid on my head- I’ve not been given any indication as to how much, or what it means yet, how and whys its there, what the next steps are  yet the ward round doctor wants to just chuck me out onto the streets.. well, not literally. I still have a flat to go home to,but you know…

I’m tired, frustrated, upset, very emotional ( very unlike me and out of character) I’m in pain, and I don’t feel like im being listened to (besides from Joe) it seems a constant game of Chinese whispers.  I’ve not slept,eaten, or drank ( I know, I know this isn’t helping, and I’m not helping myself)

The other doctor with him told me I need to be asking for pain relief (one who admitted me Saturday) I told him I have been at every opportunity, hence why I’m now on IV antibiotics not oral! But nothing is working and how she has been saying that since Saturday, she would prescribe something stronger but yet fails to do so… 

Supposedly she’s now prescribing codeine as a regular as opposed to as an when and is adding in tramadol. 

 9.30/ 10:00am? After a wobbly start to this morning..  lots of tears and  a teary phone call to Mum where we both broke down in tears, and i had to hang up sharpish to pull myself together before calling back . The  nurses overheard , and they have reassured me that they won’t let me go home if the doctor tries to discharge while I’m in pain. As much as I’m missing my little lady, I can’t go home like this. I can barely function as it is, let alone with a wild toddler to care for.

The nurses have now contacted either Joe or someone from ENT, and IT IS being aspirated this afternoon sometime, and we are scrapping the extra scan to recheck- which absolutely is not necessary!!!

Sorry for the lack of updates. I’ve just been an emotional mess today and spent the day in tears –  highly unlike me and massively out of character.. I’m fairly sure my parents have become worried as I cried on the phone to mum,not even cried ,I sobbed and hung up promptly. This isn’t me. I feel they’ve contacted Joe as I got a message shortly after from mum saying ” Joe said if you need or want to speak to him, get ward staff to call him and he will talk to you or see you”

I’ve asked for pain relief all day ( again, not me). I  keep being told, “Nothing has been prescribed, ” “I’ll go and check,” but nobody ever returns. I’m just I don’t even know. I just keep crying. I just feel, am I just  fighting a losing battle? I feel sick, tired, and as though nobody cares or is helping me (apart from Joe, who unfortunately can’t just sit with me as he has other duties and patients.

Again I’ve been unable to eat or drink anything all day.. 

17.51– My little girl calls me to say hello, although she went very shy and silly it was lovely to see her little face before she went to bed, and it stopped me from crying for a few minutes, because I couldn’t let her see mummy upset. Had to reassure her that mummy is OK, even if I’m actually not.

18:00– My daughter heads to bed and ends the call,I look up and spot a doctor. Perfect, it’s go time. I’m going to the theatre to get this head drained … right?… wrong.. he’s instead come to tell me,it’s not happening and how it will now be tomorrow afternoon… I  asked what time, as I  had been promised it would be today, and I’ve got an appointment with Joe tomorrow afternoon too. “I’m not sure we can’t give you a time yet, but it’ll be afternoon.” He tells me I’m not seeing Joe tomorrow. It’s audiology. I explained to him that audiology is Friday, no, no, it’s tomorrow, he says. Oh.. OK, has it been moved then, I ask? He looks on the system and oh surprise … I am seeing… Joe, like I said..

He tells me there’s no time on the system, I tell him it’s a 14:50 appointment according to mychart app. He phones someone to ask.  again, bingo, I’m correct.. as they say, the customer is always right!  Or …patient in this case!

I’m told tomorrow afternoon the plan is I’m seeing Joe for definite at 2.50pm. They need another scan sometime tomorrow afternoon-no idea why I don’t really understand that AND supposedly the  aspiration tomorrow afternoon . Seems an awful lot to squeeze into an afternoon. Are there even enough hours in the day for that?!

20:00 – Night staff come on, and it’s Kerrion and Mitchaline!! Hooray people that actually understand and are helpful, they’ve looked after me the last two nights now, Michaline in particular was the one who really helped me through the pain Tuesday night trying various cold packs, chasing the nurses, suggesting different things and checking on me regularly.  

We have a catch up on what’s going on, why I’m still here and they both laugh an roll their eyes when I say they’re attempting again tomorrow, not in a haha funny ,as in I guess more of a scoff can’t believe it laugh.

23:00–  I attempt to get changed into pj’s. I slowly and carefully get myself off the bed and walk a few steps to my bag and take out my pj’s and toothbrush. I turn and go to walk. Instead, I come over very funny- my face feels hot, I feel dizzy ,my vision blurs and then my arms begin to feel hot, thankfully my bed is a reasonable height and right behind me so I sit down and wait for it to pass.

23.20– I attempt it again, however, taking things even slower. I’m practically snail pace and hanging onto everything in sight. I make it. I sit on the toilet and feel very wobbly. I can feel my head going. I grab the disabled rails on either side of the toilet and hang on for dear life, breathing in and out as I do. Once it’s passed, I leave it a few minutes before standing, I still don’t feel a million per cent. I bend for my pj’s and feel as though I’m going to go head first, so I quickly right myself. I slowly manage to change, but a further three times I come over hot face, pins, and needles in my right hand, dizzy like before .

I sit myself on the floor but feel like im wobbling and as though I’m still going to go over, I bum shuffle over to the wall so I can rest my back and head against it, but equally keeping the grab cord in sight in case I need it. Eventually, I use the sink to stand, and it comes over me again as I catch sight of myself in the mirror. I’m as pale as the sheet on my bed. It takes me a while, but eventually, I’m able to stand and slowly manage to get out of the bathroom, holding onto everything in sight to get to bed.

Michaline sees me and asks if I’m OK, I tell her I’m very dizzy. She keeps a watch on me and checks on me a few minutes later in bed. I’m still very dizzy.

I lay in my usual position for the remainder of the night and don’t attempt to sit or stand… it feels like my body is giving up and failing on me. Like my mind and body are foreign enemies to one another. My body is at war with itself, and all I can do is sit in the middle of it. I have no idea how to stop it or regain control over it.

UCLH Admission 27/02/24

2:30am– Micheline woke me  for my observations ,this time no shouting my name until I respond ( like others have done)  instead she’s gentle. Micheline gentle shook me ,we had a nice chat about how she wishes she could sleep so well through sounds I explain how once I’m asleep on my left I can’t hear a thing, big storm ..what big storm? 

3:15am – One of the nurses gently strokes my hand to wake me for codeine tablet. Yeah, I’m not sure how or when, but this is now prescribed and a thing. It’s helping, though, so that’s definitely something.

5:50am – I hadn’t long dosed off to sleep after having cramp in my neck and arm and just generally not being able to get back off to sleep since the codeine tablet. The Nurse has just come an done my antibiotics an had a look at my head ( The first nurse or first anyone besides ENT who has) she’s told me I’m due for a scan and dermatology for skin review today. 

7:35am – I’m woken by one of the ENT doctors (I’ve forgotten his name) but he came to see me yesterday morning and again with Joe yesterday afternoon. He’s had another look at the area, had a feel and has also said we will do a scan today, at this moment in time it’s mainly  for reassurance and to be doubly sure to rule anything out. He explains  what they believe is  where  the implant sits on the body, it  only has bone, muscle and skin there isn’t much protecting it,  whereas other areas of the body have additional layers such as fat to protect things.

It’s believed the issue this time, is internal as opposed to externally. They think there was an infection last time,which is believed to have affected the muscle,  as a result  my muscle has become tense, as has my  external skin. It’s explained how they suspect where everything has got tighter it’s created the nerves to tense up and create nerve pain, which is what/ why I’m in pain, they believe.

It has been decided that  reviewing with dermatology isn’t our main priority right now, it needs doing,but right now it’s not the most urgent,but it’s still on the cards as something that they would like to do to rule anything out to cover all bases. The plan is I’ll have my scan today , and then the doctor  will check in with me again, and we see where we go from they’re, but they’re hoping for home today. 

9: 30am – My daughter calls me to say hello before going to mum and tot group . She tells me how she has been  watching Mulan and that she is  going to group today.

Mum asks what’s going on ,what time scan is, etc, and tells me dad’s spoken to Joe. I asked what that was about/ what happened, and mum said Joe spoke to dad and explained the situation,  what they were doing and why ( literally everything I told them last night) 🙄.. .

Joe has said they believe this is all happening because my muscle is weaker due to all surgery, etc. Where the muscle has become inflamed for some reason,  it’s causing the nerves to become inflamed, causing them to further  overstretch,  creating nerve pain . This explains why nothing is showing up but also means I’m not going mad when I’m saying about the headaches, etc..

Mum tells me  Joe’s told dad  ” Bethan is overusing the processor” I said to mum I’m most definitely not , I’m only using it for an hour or two per day as per his request and we had that discussion yesterday.

9:40am –  Phone call finished I  get washed ,dressed and tidy myself up a bit.

On reflection… maybbeee.. I am overusing the processor – I mean, I most definitely have been since being admitted into hospital,  only purely because it’s so busy and noisy. I can not hear what’s going on, otherwise no I wouldn’t be. On the outside world at home ,I absolutely am using it only for an hour or two per day , IF for any reasons I need to use it more such as soft play with 2 friends a couple Fridays ago , the zoo when there was 5 kids, 6 adults , I have ensured to have a few days of absolutely nothing to fully rest it before returning to the 1-2 hours when I’ve used it more it’s been 6hrs max. 

10am– Ella, my lovely HCA from yesterday is looking after me again today, I’m pleased about this. She comes to do my observations. However, she can’t get the under tongue thermometer to work, so she asks if I want to have a go. I managed to do it. she makes a comment about how I have the magic touch , its years of experience, I tell her. ” Do you  work in health care?”  She kindly asks, I explained yes I was a support worker and how I’m also used to hospitals and hospital equipment due to years of being in hospital. 

She asked if I enjoyed health care, I said I loved it and what I loved about it, and she asked if I’d ever go back to it. 10001%, yes. I miss it.  she tells me how she can see me working in hospitals and caring for people,  I’d be great in thst role and how I should work here or undertake an apprenticeship In something medical/ hospital related ,or how she can see me as a play specialist (I said I’d prefer kids) she’s going to look out for opportunities for me.

I would honestly love to work in a hospital looking after people or doing play specialism. Perhaps that’s a goal for the future to work towards? for when my daughter is older / better childcare support? 

Why leave it a dream? It’s been something I’ve debated since I left school. if I hadn’t got the grades needed for animal care college, then I would’ve stayed on at school and got into nursery/ childcare/ health care work and aimed for hospital work with kids. 

Shortly after, I receive a message to say my scan has been booked for 11.40 am today 

11:35am– I speak to the nurse looking after me to ask if there’s any update on my scan ,she tells me a porter will come to collect me for the scan as its not done on this floor. She tells me there’s nothing on the system for a scan yet,I show her that it’s showing as 11:40am on my app. I’m told she will call down and find out.

11:41am– I’m still waiting for the porter,I’m told the porter will come, The nurse tells me she will phone down to them.

12.15–  both a hot lunch (jacket an beans) and a porter arrive at the same time. I go with the porter for my scan, Catering aren’t impressed, but hey, what can you do.

I’m wheeled down to radiology for my scan .The radiographer was so lovely, she took time to listen and understand the implant  apologising profusely that she was going to have to cover my head in gel.it’s one of those things though and a very good job I’ve got shampoo with me to wash my hair after.

The scan didn’t take too long to do. The radiologist asked the doctor to help and take a look .He loaded a picture of the implant on his computer for them to refer to. They’ve found a collection of fluid and some inflammation under the skin. The radiology doctors tells me he’s sending the scan and findings across to  to Joe immediately. I’m told Joe will review it then speak to me and   will let me know what we do about it.

Once the scan is finished, I’m sent back to my wheelchair..  yes, they wheeled me. Nope, I wasn’t allowed to walk. I was told  it could be around 75 mins. I’d wait for a porter or I could walk…  I’m told that they waited 85 mins for me and had to call the ward to get me, which is insane. Therefore, I wouldn’t be prioritised to be collected so.. I walked.. .I only wish I had  put my shoes on though, because I had been taken in the wheelchair and would need to take shoes off to lay for the scan,I decided to go in just fluffy socks.. im regretting that now, as the floor is super slippery ,especially in the lift .. I’m trying my hardest not to slip over and do myself an injury.. its not quite needed right now..

13:00– I arrive back at the ward. Thankfully, lunch is still warm… just about… The nurse tells me I can go home now.

I told her the doctor said this morning that he wants to review me first, and how  radiology have said they need my consultant, Mr Manjaly, to look at the scan,  as they’ve found a build up on fluid. The nurse  replies  “yes they’ve seen it. “… I highly doubt it.. in the couple of minutes it’s taken me to leave the department and go up 13 floors (in the lift) if I had walked it ,then slightly more believable  that they’ve seen it ,reviewed it, forwarded it to Joe for him to  decide a plan already.. without speaking to me? Hmm, I doubt it..

Once I’ve finished lunch, I go and shower and wash the gel out of my hair. Upon drying my hair, I begin feeling unwell. I assume maybe it’s the heat of the hair dryer on the osia site ( I’m steering clear as much as I can)

15:30–  I get a massive intensive headache and nausea that leaves me curled up in a ball in agony- I have pain all across my forehead, around implant site, down right side of neck, back of head and neck. Tinnitus in left ear, either ringing loud like some of the tones on a hearing test , sounding like fireworks (the ones you expect to make a big bang but instead crackle/pop) or like my pulse/heart racing. All I could do was lay there in a ball at times with my eyes shut.

I remained in this state for 4 hours with nurses trying everything to relieve the pain, but nothing was working. It got to a point that the nurses told me they now needed to  contact the pain team to see if they could give anything stronger. Everything so far hasn’t touched it. I’m scared.  I’m convinced I’m going to be rushed to emergency theatre, my head feels like it’s goingto explode, full of pressure like a bottle of  coke that’s had a pack of mentos added to it and shaken with the lid screwed on tight.. Nobody knows what to do. I’m not making it out of this.  I can’t see it ending well. Sounds dramatic, but honestly, I’ve never felt or experienced anything like it. It was absolutely horrific.  Seeing nurses literally standing around me ,the worry in their faces. I was panicking, freaking out. What on earth was happening? What was attacking me?

7.30pm – 9am the headache came and went across the various areas mentioned above, unable to move ,sleep, drink, or eat. My body was drained . Essentially, it felt like it had been at war with itself . I’m very lightheaded and dizzy , if I do move its verrrrryyy slowly 🐌 walking to the toilet. 

UCLH Admission 26/02/24

2:00am – I’m still awake,but you will be pleased to know, I’m much less grumpy. I have, however, decided to remove my hearing aid (it’s been in since Saturday continuously besides temperature checks .. so a matter of 30 seconds every couple of hours ) I’ve also  removed the osia as everything was making me jump and too loud or I was just generally too uncomfortable.

6:00am – One of the nurses  wakes me for IV antibiotics and to complete my next set of observations,it took her a while,I apologise to her for this I don’t mean to make life harder for anyone.. I’m just very deaf without my hearing aid and implant, especially when asleep nothing wakes me..

8:00am – I wake to find one of the HCA’s Ella,coming in to do a set of observations on me ,perfect timing.

8:30am–  Twice in the last couple of minutes I’ve had some spectacular mishaps with my hearing..  both of which..highly embarrassing, nope I’m very much not past the point of it being embarrassing when I mishear things.. so what exactly happened..  well I may as well share you can have a laugh at my expense as payment for me being a grump yesterday it’s the least I can do.

OK..  so the first mishaps..

1) I thought the nurse had asked if she could look at my back, slightly strange as I’m not here related to my back,but I guess she’s checking for pressure sores or something as my heels an elbows were checked last admission,along with  dementia assessment..  I have no problem with her looking at my back so I sit sideways facing her and lift up my pyjama top so she can look. The nurse tells me she needs me to stand up so she can look properly. OK not sure whats fully going on but I’ll oblige. I stand up, turn around so my back is to her and lift up my pyjama top .. there’s an awkward silence and pause. Neither myself nor the nurse say or do anything..  The nurse then begins pulling my pyjama trousers down a big,oh OK maybe she needs to fully see my back I guess? Until she pulls them down further along with my knickers.. what?..

Turns out she had asked to look at my bottom.. so now I look a right muppet,what must the nurse be thinking  she’s probably thinking im either mad, or that I need to go back to school abd learn the anatomy again..

The second mishearing mishap… I thought the same nurse had asked to shine a light on my back, can’t say I’ve expirenced this before. Not sure what this would be done for.. I’m still facing the other way round with my back to her.. there’s another awkward pause/ silence… does she want to shine a light on my bottom?

Again, neither of us say or do anything. Huh, this is strange. I turn around, and I’m blinded. The nurse wanted to shine a light into my eyes,I mean, this makes more sense, but I’m massively caught unawares. I wasn’t expecting to turn around to a torch in my eyes.

I’m not sure what my obsession with my is or was this morning . Eyes and bottom sound nothing like back.. besides bottom and back, both starting with a B. Otherwise, they bare, no similarities or resemblances.. noted I need to wear my ears at all times.. because this is what happens when they’re not in/on..

The nurse then proceeds to say ” oh you’re going home today” am I? I ask confused I can’t lie this is news to me.. I’ve not yet seen ward round doctors this morning, nor have I seen Joe so far into this admission, I’m still yet to have pain relief or a full day of antibiotics yet. The nurse seems puzzled.. have I made it a hatric with mishearing mishaps  ?

I’ve heard correctly, the nurse is puzzled, and she’s fairly sure that the plan for me is home today asking isn’t that the  plan? No, not as far as I’m aware ,I’ve not been told I’m going home if I am? I explain as far as I’m aware im staying in on IV antibiotics (which only started late yesterday afternoon). I’m also awaiting a scan . ” Oh, haven’t you seen the doctors this morning?” She asks, still confused . Honestly, I just wish they would communicate with each other.

9:30am – Oncall  ENT doctors have just come  around on ward round..  both are unfamiliar to me, and BOTH are wearing MASKS!! It’s not impressive!!  They have said something completely different to the other 3 I’ve seen and my  GP.. this bodes well…

The previous three doctors  and my own  GP have said there’s 90-100% certainty I’ve got a collection building. These two say there’s 0% chance there absolutely is not a collection.

The on call doctor that I saw Saturday  evening, they said they needed to aspirate, which should have happened  yesterday,  to see if anything comes away.. yesterday, I was told no, they dont need to.  Today… the doctors can’t understand why it wasn’t done…

Today’s doctors have said they can’t see anything wrong, they don’t understand my symptoms ( typical standard me then)  ,The osia feels fine, doesn’t need surgical intervention. I’m relieved it doesn’t need surgical intervention, although nobody has mentioned this until now.. Despite this, the doctors today have agreed we need to do an ultrasound as Joe has told them  yes, he wants this done.

The doctors essentially are stumped as the only thing they can think is changing magnet down a strength but I’ve declined,  because we tried on activation to start on weakest strength and build up but we’ve not been able to do so as both one and two have proved too weak. 

The doctor asks if I’ve had audiology intervention , I explain how I  saw them a couple weeks ago when admitted and how there’s interference between the magnets assumed due to swelling but no adjustments have been made ..

They’ve asked if I’m supposed be wearing the implant while there’s swelling (so contradicted themselves as I was told a few mins earlier isn’t any swelling)  said audiology have said no but Joe an haddy have said yes because I can’t hear without it especially with the levels in my left being so low as well ,explained I’m supposed to build up but I can’t not wear it in here

They’ve run back a couple of times asking questions- what implant is it, when did I first have issues?  how long have I had issues with it? , do I have eczema or psoriasis?  , was the Osia really painful when I went to GP?  have I had a cold , fevers, etc?  again, I’m not really impressed at this, I feel they  shouldn’t be running back and forth. I understand perhaps this is new to them or perhaps they’re junior docotrs ans absolutely everyone has to start somewhee, but it doesn’t fill me with  confidence, especially when they say they’ve spoken to yesterday’s on call…  apparently, I should be able to go home later today,  but we shall see as I’m not going home if it’s late/ dark or without answers ,or feeling unwell..

The ward round doctors have  said they’ll “try and help me.” The word sticks out really prominently in that. It shouldn’t be try .this fills me with dread as this is what happened with the BAHA, and I lost that implant after a 10 year battle. I don’t want a 10-year battle this time, and I don’t want to lose the implant. If I’m honest, this is just getting me down. 

It’s honestly a joke. If I’m honest, I just want to talk to Joe, but I know he operates and teaches on Mondays, so liklihood is slim.

Just feel I’m being given the run around and as though nobody is communicating

9:40am –  Helenia, the nurse looking after me, has come to check on me and  asked if I’ve had breakfast. I  haven’t.  I’m asked why not, I tell her I wasn’t aware or offered anything. Helenia goes to  check with doctors that I can eat and drink. I can. Helenia apologies and tells me she would go to see if the kitchen is open. it wasn’t, but she raided it and came back with rice krispies, weetabix ,cornflakes, and a cup of tea

9:45am –  I’m given ibuprofen. Apparently, I can’t have the codeine that we’ve been waiting to prescribed since Saturday . Thankfully, I’m not in too much pain right now.

9:50am –  My allocated HCA ,the lovely  Ella comes to do my observations, while she is doing so ,one of the catering ladies who has  come to collect the finished breakfasts from our bay, comes  in an asks rather abruptly and as though she’s been put out  “Why did you refuse breakfast this morning and now you want it?” . I tell her nobody has  asked or  offered me anything anything. She tells me she did.I apologise and tell her I must not have heard her and explain that I’m deaf. 

I don’t need them kicking off. Mums now getting dad to phone Joe. Oh dear god. No. Just no.i can’t lose the implant ,I just can’t . I don’t need my parents fighting my corner or kicking off at the one and only person who is trying his damdest to help, support and fight this with me. He’s the only one making a difference and trying everything to help, he doesn’t deserve this.

Ella,said “oh I didn’t even know that. That’s handy to know you should have a note added to your bed so everyone’s aware.” Surely they should already be aware anyway, given its part of why I’m in hospital?! Ella is lovely and tells me everyone needs to be aware that I’m deaf and how best to communicate with me as unfortunately the world isn’t very deaf aware, she asks if I know sign language and tells me how she’s looking into learning as she wants to be able to communicate with everyone and asks my communication preferences and more about my deafness so she can best support me. Yes! Love that!

10:00am– I’m given pen an paper to write a note to add to my bed I’ve written “Please be aware I’m bilaterally deaf, I have no hearing or ear right side (microtia) without my Implant I cannot hear anything this side. Left sided I’m moderately deaf and wear a hearing aid please ensure you have my full attention before speaking to me, when doing so please ensure to remove any masks/ face coverings so that I can lip read, please speak clearly while facing me so that I can lip read and understand you better. Thank you “

Knowing my luck, the note is probably too long, and nobody will read it now.

I feel embarrassed having to do this and have it on display on my bed. Equally, a small part of me is proud that I’ve done it to advocate and hopefully prevent any more mishaps.

It’s frustrating enough being deaf let alone in the hospital with machines, monitors going off,people coming/ going, especially so as I can’t locate sounds, so I’ve no idea where it’s coming from. It’s embarrassing but at least now I don’t (hopefully) have to keep telling everyone I’m deaf as my lovely HCA has informed the nursing staff today and got them to make a note of it to ensure all staff and anyone entering my bay is aware, so it’s one less thing for me to worry about.

11.25am  A hospital volunteer has  come round for a chat about discharge. I’m  asked if I’m going home today ,I said I don’t know. Halima came over an quickly tells the volunteer “yes she is going today,  Bethan is deaf and a lip reader you need to stand where she can see you an speak clearly an slowly”  (I don’t need slow) but hey at least the note is working.

I was asked why I’m here. Who is collecting me? I explained nobody would be collecting me,I will be going on my own via tubes and train as I don’t have anyone who can get me,I explain why. 

I’m again asked if I’m going  home today,  again I explain why I don’t know. (it depends on time of scan an the results of it) she  asked if I’m feeling better? Do I have any pain? I explain yes, but I  still have some discomfort, asked about my balance , I say its OK but knowing the issues I’m trying to take it a little more carefully which she agreed with- one reason I said to her about not wanting to travel during rush hour etc.. 

She tells me i’m safe to go home, and if I  have any  issues,  I have to come back. I  explain to her,  yes that’s why I’m currently back , I was in for nearly a week, just shy of  2 weeks ago,  took 10 days of antibiotics home and then the day  after I finished them problems started again (1 week ago today) an GP sent me back urgently this weekend. She didn’t seem impressed with this.. 

12.45– Joe has come round to see me. I can’t lie, I was pleasantly surprised .I hadn’t expected to see him today ,but I’m so relieved to see him. He’s the only person I want to see when this kind of thing happens. I fully trust him. I update Joe on what’s been going on,  why I’m here,  that my  GP wasn’t happy with my symptoms, how they suspected an abscess,  that I did try to contact him for a second opinion but was unable to get hold of him- so I decided to just come here with the paperwork and speak to someone.

Joe tells me that I’ve done the right thing and has told me it’s trickier of a weekend as the CI office doesn’t forward emails to him until Monday, so he’s only recently got my email. He’s advised that the best way to get in contact with him of a weekend, is exactly  what I did- contact the switchboard and ask for oncall ENT as they can contact him day or night regardless of him being in or it being a weekend. I explained to Joe that  I had tried to do so, but they’d said there wasn’t an on call ENT team. Instead, I was told I  had to present at A&E as per GP instructions.

Joe’s said it looks like it could be a weigh up situation now ,of whether we keep the implant or remove it. I can’t lie. This is gut-wrenching. There are no words. My heart instantly sinks. It’s absolutely not something I want to hear. I very much wish I was mishearing this. I know Joe wouldn’t be saying this unless he really had to.

I’ve been honest and  said ideally I don’t want to lose it because of what it gives me when it is going right, Joe said, as he says himself hearing is precious. Honestly, knowing what I know with the Osia and the reduction in listening fatigue and general increase in self an energy, I can’t lose it. I may be losing my spirit, but I know losing my Osia ultimately will be detrimental to my mental health. I just can’t lose it. Not now. Not ever. I can’t. I just. Can’t.

Joe totally understands and is sympathetic and empathetic to the situation at hand, and as to why I just can’t let go and give up.not without a fight. Joe is happy for us to continue pushing on and fighting with the Osia.

Joe’s had a look and is happy with how it’s looking, especially compared to last time I was in ,which I absolutely agree with it is a massive improvement, its just my symptoms this time around are worse.

The Plan now is Joe’s going to speak to dermatology here at UCL to see if they will see me .Joe said he knows it’s a bit of a faff for childcare an getting here,but ultimately, honestly I don’t care,  if it means getting help and it’s within this trust even better as all my care can be collated together and it makes it easier for Joe to see all notes etc.

  Joe believes, given how things are looking now, that dermatology may say there’s no issue and we could draw a blank or be back to the drawing board, but it’s worth trying anyway it could rule something out or in there’s no harm in finding out. 

Joe is very much of the opinion. Let’s do the scan today. See what that shows,  although again, he’s not sure anything will show up. But says we can do it anyway to be on the safe side,it will either rule something in or  out, and it will  ensure nothing  is hiding or going on that we don’t know about.

Joe asks how long I can wear the processor without pain/ discomfort. I’ve been honest and said an hour or two hours, it isn’t much at all . Joe has said this is something to weigh up whether it’s worth doing. Joe’s asked how I would feel if I had to do that long term once we’re over these current issues. It’s not ideal realistically, but if It means keeping it, then I’ll do it. I want this so badly. it doesn’t matter how little I’ll take anything.

currently  we are going  for the scan today, see what if anything that shows, if it’s all clear then it’s home today without antibiotics and we will ensure a date is in the diary to follow up. Joe has asks if I see one specific GP, so that he can follow up with them ,tell them any issues or queries they need to contact him directly ,unfortunately I don’t it’s a case of see whoever is free, which is irritating.

 Joe’s reassured me  I did the right thing attempting to make contact and coming in  told him they wanted me to go to the local hospital, but I refused and came here instead because I don’t trust them .

12.50– I called Mum to update as she called me just before Joe came. However, I have to cut the call short as Joe comes back

Joe comes back with the on call doctor.  The on call explains that radiology can’t do my scan today as they’d hoped and been pushing for. However, it can be done tomorrow at some point. They want me to go home today and return tomorrow for the scans as I’m well enough to leave. The on call doctor  then explains they’ve spoken to dermatology here, and they’ve agreed to see me this week. However, we’re currently unsure of date and times, but they’re working on it. I explained to Joe that I’m back on Friday to see Anne in audiology, so it would be ideal if that could be combined. Joe makes note of this and tells me he will see what he can do.

Joe believes the issue is my skin/magnet where my skin, unfortunately is so overstretched from reconstruction and other surgeries ,Joe believes this is why I’m having issues, as well as the impact of the magnet being so strong , as I can’t use weaker strengths and how paper thin my skin is. If this is the case currently, he’s not sure what we can do long term besides wearing it until uncomfortable then removing, but I know Joe,I believe in him that he will find something. 

12:54– Thank goodness for Joe! He’s saved my sanity. I massively breathed a sigh of relief when I saw him .Honestly, If anyone saves the day, it’s Joe.

12:55– I phone Mum back to update. They’re out shopping, so it makes for interesting conversations while I’m trying to talk to her, but she’s also talking to dad at the same time.. not  helpful with my deafness either..

Mum goes mad. She isn’t remotely happy with the plan.Mum doesn’t want me to go backwards and forward all week for appointments and paying out fares ,she has said they can’t keep doing this (dropping everything to have my daughter for emergency childcare)  how I can’t keep coming into hospital like this , how they’re supposed to be specialists here,  how it seems a waste of time them coming home early from their weekend away, mum hangs up an texts me as does dad .

13:30- I’m honestly ready to have a break down. I know it sounds dramatic. Joe is happy for me to keep the implant and happy to support it,however I’m very much aware now the ball is very much in my court if and when to pull the plug. I can totally understand Joe’s point,I  can’t keep being admitted every couple of weeks. I do totally get that from both his point of view and my own. It’s hard trying to arrange childcare as a single solo parent, covering costs of fares to get here each time,  juggling trying to hold down a job and the time I’m having to take off for admissions. It just isn’t an ideal situation for anyone on a two weekly basis.

I just want to scream, cry, throw something, punch a wall. Honestly, I just can’t anymore. Mum is still going ballistic at me,which isn’t helping in the slightest, especially as my head is already here,there, everywhere. This is one additional thing I just do not need.

I think mum just wants the implant removed. Something I absolutely do not want, nor am I ready to face this prospect.

I don’t want dad speaking to Joe making matters worse. I’m hopeful Joe can work his magic on them ,calm them down and make them see sense.im hopeful my parents will listen to Joe as they’re not listening to me. I don’t think they understand just how important this implant is to me,the difference it makes, the person I was becoming,  yes it is more of a hindrance right at this very moment in time. But I’m not ready to lose it. I’m not quitting .not yet. I know there’s better days ahead. There has to be. This cannot be it. Not yet.

Honestly I’ve been struggling for a while now and perhaps not wanting to face up to what’s really going on ,perhaps why I delayed coming in the other week .It all feels very much de ja vu ,it’s the BAHA all over again.

I can’t. I just can’t lose this implant althogih Yes, it very much looks and feels like everything is stacked against me. I can’t . I can’t go back to no hearing. My hearing aid alone isn’t enough. I can’t. it’s been a huge fight getting to this point it’s rubbish being in his situation so soon ,yes, my spirit is in tatters, but I just can’t.  I know if I lose this, then that’s it. It’s game over. There are no more options.im back to struggling day in and day out. Don’t get me wrong, I am anyway, but not I the same sense.

Put it this way when Joe asked what a difference if it made I couldn’t even put it into words. The difference is that everything is clearer,louder, more natural sounding, and easier to follow and understand. It’s not quiet, muffled, jumbled, or distorted or a world where I feel I need  to just disappear and sink into the furniture. It’s giving me a world of colour and confidence and hope.

I can’t lie I just want to scream,shout and cry. I’m not being nieve I know at the moment it looks like my worst fears of losing the implant could be happening, but I have to tell myself that better days are coming. it’s just another bump in the road,it’s another hiccup, right?! 

I fought for 10 years with the BAHA ok I don’t want to fight for 10 years again, but I’ve literally only had the implant since early January really It seems too soon. I just can’t. If  it’s a worse case scenario and there are no other options, then fine, but otherwise, I want to keep fighting. There has to be a way, right? OK, I’m not confident or fully convinced, but I don’t know.

13:56- I’m still dealing with Chinese whispers and the situation with Mum.  I’ve just received an email from the CI office telling me Joe would like to see me in the clinic on Thursday. I’m confused. Is this in response to the email I sent Friday, and it’s just delayed? But then again, Joe said earlier he had only just got my email, so it wouldn’t be that, would it? didn’t mention anything earlier about seeing me in the clinic this week.

Currently, the appointment plan is looking like:

• Tomorrow- scan
• Thursday- clinic appointment with Joe
• Friday – audiology
• ?- Dermatology (pending)

Mum is going to absolutely flip if I’m discharged and am required to travel back and forth each day for these appointments. Typically, I’ve left my door keys at my parents, so I can’t even just travel back to my flat and do the journey each day without them being aware.

I email the CI office back and confirm I will attend the clinic appointment with Joe. I’ve bitten the bullet and asked them to get Joe to phone dad,I can’t fight them and my body. I need to delegate. I need help.i need the back up. I hate to throw Joe under the bus but I can’t hold up all the fights myself. I feel awful,I really hope I’ve not thrown Joe under the bus. I know what my dad can be like when he goes off on one.None of this is Joe’s fault. I dont blame him ,nor do I want him to bare the brunt, but right now I just need someone.I need the backup and support. I really am cracking up if I’m asking for help..  my head is everywhere. My parents as much I love them are one battle I just don’t need.

I’m feeling sick with worry, what will Joe think of me?  Am I just a big baby not speaking to him myself and sorting it? Not that there’s anything to sort..  Jesus I’m nearly 30 ,not 3! What on earth is wrong with me? What is Joe going to think ? I’m sorry Joe, I just know you’re magic works on me in reassuring me when I need it so I’m hopeful it’s what theu need is to hear it from you as opposed to me.

14:06– Brilliant.. just Brilliant I have both Mum and Dad on my case, back and forth messaging me, if they really have to can’t they do it on one message seeing as they’re very much together and live together ?!  Why just why did I tell them I may be home today ?

I should have just kept quiet. I could have figured it out, figured out a way to travel backwards and forwards,especially as it turns out I do have a door key to my flat. None of this is Joe’s fault. He’s trying. He really is. Joe has stood by me through thick and thin,the highs and the lows. Joe’s explored things others haven’t ( dermatology and autoimmune) he’s forever trying to find a way.

I’ve got enough of a fight to do right now. I can’t lie it feels so daunting and overwhelming. I don’t know if I can do it this time if I’m going to be honest. But I know I have to keep trying. I have to.i can’t quit.i don’t know if I can fight it this time but I’m damn well going to try and give it my absolute all.

I’m rather surprised with how my head is at the moment . I’m surprised km somehow keeping it together when I feel I’m cracking at the seams and spilling out over the edge. How nobody has seen through the mask and its still in tact I don’t know. It very much feels its slipping. I’m shocked my GP didn’t end up prescribing anti depressants or anti anxiety medications- I’m a mess.i don’t feel depressed ,I feel something though,lots of somethings. Maybe I’m not a stone cold hearted witch after all. This whole thing right now feels bigger than me. I feel the size of a flea,whereas this feels huge towering above me like ..I don’t even know I can’t think of anything big enough.

Showing my age here,but I wish I could freaky Friday swap lives with my parents so they can fully understand what it’s like to be me,what it’s like to be deaf in a hearing world, how much I hide and hold back.. there’s a lot. Even if today the mask seems to be slipping and slipping over the edge.

I would give anything for others to step into my shoes for even five minutes to get a sense of the way I see things, hear what I do/ don’t hear and how I hear,  expirence what I can’t hear and how things differ in different environments. How exhausting this can all be, but why I keep fighting and have to keep going.

.

I’ve calmed down a bit now,I do see my parents’ point. They’re just worried, and it’s all uncertain, and I get it must be hard for them too. I get it,I guess I would feel the same if it was my daughter going through this.

It’s just hard. When I was thrown the lifeline of the Osia mum, I practically jumped down my throat,how I had to do it. I had to have it, etc. ( I very much wanted it too. I wasn’t swayed or influenced) when things began looking uncertain if we could even implant mum wavered, questioning if it’s even worth it?  It was. It is.

14.44– Dad texts telling me he’s spoken to Joe. He doesn’t say what’s been said besides Joe’s going to try to combine all my appointments while I’m on site, so does that mean I’m staying? Or am I going? Who knows…

16:23– I’m feeling less emotional, but I can’t lie. I just feel deflated and flat. Hey, maybe it’s a day 3 hospital thing as I’m fairly sure it was day 3 on my last admission. I got emotional, although thinking about it,it could have been day 2, who knows.. anywhoo  as of yet, I’ve not heard anything ,so I don’t know if I’m staying or going yet.

  My guess is that I’m staying as the two other patients going home have had their canulas removed, and because dad said Joe is going to try to combine my appointments while I’m on site,so I’m guessing that means today/ tomorrow or perhaps Wednesday? I can’t imagine any of my appointments happening today now.

We already know the scan is a no go for today,I highly doubt they’ll get me in with dermatology or audiology today either, and it kind of doesn’t make sense for an appointment with Joe/ Haddy until audiology/ dermatology are done either,not that I don’t want to see them,but logically it makes sense to wait. 

16:36– Still no update. I guess I’m in again for the night.

18.13– I had a struggle to eat my dinner tonight,  I have no appetite, but I pushed through and managed most of it, and I just had some more paracetamol.  Haven’t heard anything else, so I’m guessing I’m staying put after all?

Part of me wishes I hadn’t told mum an dad the plan,gone home to my flat by myself today then returned tomorrow as they would be none the wiser ,however I guess they would when they realised I need to come back for dermatology and my audiology appointments later this week,but that could have been a battle I dealt with when home or even possibly might not have as I could’ve brought my daughter with me,again they wouldn’t know .

Why do I think of these things when it’s too late?! Mind I don’t know how she would’ve sat through a 90-minute audiology appointment as she barely sat for a few minutes while I had my GP appointment on Friday.

I just feel bad that I’ve essentially thrown Joe into the firing line, I know what my parents can be like. Ultimately, I just wish my parents would understand why I can’t give them all the answers, why it’s not clear cut or possible to get them right now. Ultimately, I just wish they would understand or at least try to.

I wish I could do a swap like in the film freaky Friday so they could step into my shoes and truly understand what it’s like to ne me and what it’s like to be deaf in a hearing world where everyday is a battle an struggle to keep up eith everyone, missing conversations and information the loneliness and isolation,  the shame and embarrassment. The frustration,  the exhaustion

 I love my deafness but there are times it can take its toll or be difficult. 

I wish they would  just try to think and step into my shoes of how I’m feeling about this whole thing, the fear I have of losing my implant.

The fear I have of going back to who I used to be- isolated and a shell whereas now I’ve started seeing a different version of me, my confidence is slowly edging back, I’m putting myself out there to do an try new things such as teaching BSL to the town council,  the local specials police (volunteers) and eventually my little  town community too. Reduction listening fatigue an frustration. Jesus, I’ve noticed what a moody cow I am without the osia on. I’m sure you all have the past few blogs too, I’m just not me

I’m not happy or bubbly without it. Reality is without it I was withdrawing and struggling more than I’ve ever done before just to stay afloat and keep up with everyone,  even the basic thing was such a slog an chore leaving me drained of energy. 

19:00– I’m still here, so I assume home is a no-go? 

20:00– still no update, I guess I’m In for the night? Just hate how my parents have kicked off, and now I’ve no clue what has been said/what’s happening. Wish I’d handled it all better and kept quiet about home today,I could’ve just gone back to my flat on my own tonight and travelled back tomorrow, and they’d be none the wiser. Although yes, I’d have the obstacle of  coming back for the appointments ,however, I could’ve sorted that.. I could’ve  got discharge paperwork then contacted CI office to see if I can combine the audiology and Joe appointment, then when dermatology appointment came throguh tried to add that onto the same day OR even next Friday when I’m back to see haddy.. I’ll cross that bridge with my parents when it comes to it or just bring my daughter with me to ssge any further drama

I mean yes it makes sense to combine appointments to save on rail fares but equally I’ll do what it takes and right now I just feel like a bed blocker someone whose really poorly could need this bed. While they’re in the emergency area waiting . I’m sitting here fully well, just needing investigations and follow-ups. 

21:00– no update but there’s no chance I’m willing to go home now  though.

21:36– the lovely HCA  Michaline  who did my observations a little while ago has just come over an said “Bethan, I’m so sorry I forgot you were hard of hearing please give me a kick next time”, I’m not hard of hearing.  I’m deaf but at least she knew and apologised ,although she speaks very clearly, so she’s not a problem. Either my note is working, or the morning  team has  handed over Bethan/ bed 27 is deaf and a lip reader. Either way, it’s working and making my life a little easier. 

23.16– My old friend nausea is setting in again, and the discomfort/very mild shooting pains are slowly creeping in again. Why? My body hates me ,I know I’ve got to fight, and I very much want to so onwards we go. Bring it on.

UCLH Admission 25/02/24

00:05– One of the nurses, Esther, has come to do my observations. I’ve still got a banging headache mixed with shooting pains at the back of the osia site. Esther tells me that my  temperature is low and is dipping so she goes to fetch me another blanket

00:10 – extra blankets added to try to bring my temperature back up to where it should be. Finally, I feel like this aspect is being listened to (I told them about this in A&E , but typically, since arriving at my temperature up until now has behaved)

00:30 – My head is still banging, but they can’t give me anything else as nothing has been prescribed. I’ve asked if they can speak to the doctors because I really need something, so I can at least sleep if nothing else. I’m told they can’t do this..( I think it’s more a case of won’t than can’t)

I’m not sure what time I fell asleep as I’d been very uncomfortable with headaches and shooting pain, but I know, when I last looked at the time, it was gone 2am.  I slept  fully upright with my left hearing aid in, as I couldn’t lay down comfortably despite two pillows and two blankets

8:00 –  I’ve  been given paracetamol, and observations have been repeated, I believe my temperature is now in normal range, I’m not told otherwise. I still very much have a  banging headache ,I’m doubtful paracetamol is going to do anything but it’s worth a shot,especially if it’s all that’s avaliable right now, anything is better than nothing. I’ve been super uncomfortable all night,hopefully, the ward round doctors will be round shortly to find out what’s going on.

10.30– The ENT ward round doctors have seen me.  They’re not sure what is going on.. typical me really isn’t it..I was asked about why I had presented into A&E and reviewed on this, I told them that I have a lot of shooting pains ,I’m asked what im on for the pain and tell them I’m only on Ibuprofen and paracetamol..

I’m told I can have something stronger. Why haven’t I? I explained how I have asked but been told I can’t have anything else as nothing has been prescribed.. Due to this, they are starting me on antibiotics, and  they are going to prescribe stronger pain killers. Numbers all look good/normal.. so they don’t want to exacerbate things by poking around too much. I’m told the implant feels firmer now which is more in line for normality for me.

They do however tell me that they can understand what my GP is saying in regards to a collection feel something going on, as there are  variations as to how it feels in various places, so they’re arranging for an ultrasound most likely tomorrow,as they need to know what is going on under the surface although they are going to try for today there is possibility the scan may not happen until Monday they are however  going  notifying Joe that I’m here… I had been led to believe he was informed yesterday.. better late than never ..the doctors are also arranging for stronger painkillers codeine is mentioned as a possible as well as IV antibiotics

12:00– still no pain relief or antibiotics, I’ve asked but again been told nothing has been prescribed, I’ve asked if they can speak to the doctors as I was told this morning it has been prescribed,  “no sorry it can take a while for it to come through or be arranged you will just have to wait” comes the nurses reply. I get it. I really do, but equally, I’ve been in pain for nearly 24 hours now without anythinv besides paracetamol. How long can I keep hanging on for ?

I don’t think the fact it’s a well known fact that hospitals run on skeletal staff of a weekend , let alone the Government making even more cut backs to staffing is helping nor the fact that yesterday morning junior doctors started striking . I do, however, wholeheartedly support the doctor strikes ,though I’m fairly sure they sensed me coming and thought just thought nah stuff that and walked out.

13:00 – My observations have been repeated, however no pain killers as of yet.. so much for the codeine and the promise of the strong stuff. I’ve asked about it. The nurse checks the system, and I’m again told that nothing has been prescribed. I ask if she can phone the doctors to ask what’s going on,I’m told again I just have to wait.

I totally get I need to be patient and that they’re short staffed and we all know hospital wards tend to run on skeletal staff of a weekend but I’ve been here 24 hours with nothing but paracetamol and ibuprofen.. i may as well have stayed at home because I can do that myself.. at the moment, I’ve still not yet started antibiotics because these also haven’t yet been prescribed..

13:25– antibiotics have officially started just over 24hrs after arriving in hospital. I’m back on co-amoxiclav IV (what I had when in before and took home for 10 days)  HALLELUJAH! we might slowly be getting somewhere although my appetite is still MIA I’ve struggled with a sandwich at lunchtime but eventually managed it after essentially forcing it down. Still no sign of pain relief..

13.40– I’m given paracetamol and ibuprofen tablets – apparently this is all that’s been prescribed. I have explained to the nurse taking them individually or combined doesn’t touch the pain as this is what I’ve been doing at home. I’m told there’s nothing she can do ,she can’t give me anything else as there’s nothing on the system as having been prescribed.

16:00– I honestly wish I had stood my ground and waited until tomorrow. I’ve still not had any pain relief, and the csfe in general is lacking. The lady next to me told the nurse before she took her break that her stoma was leaking, an hour later she’s had to ask another nurse a further two times, it’s still yet to be sorted,as she’s been told to wait for her nurse to come back from break. I totally understand and respect that nurses need to stop for breaks, I’m not disputing this at all. I also understand they have to stop somewhere. Otherwise, they will forever have a stream of patients needing something or just one more job. Surely, though, for something like this, you would help first or at the very least hand it over to someone. You can’t leave someone laying in their own excrement for well over an hour. It’s not a nice situation for anyone, especially the poor lady, having no choice but to lay in it.

She’s asked if someone else can help, but she’s been told no the other nurses are too busy dealing with punch ups and generally are too busy surely instead of standing there help her? Can’t security deal with the punch ups?  The lady questions why if our allocated nurse is on break, there hasn’t been cover sorted ? What if there was an emergency?

17:48–  Are you kidding me? Please tell me this is a joke.. right? Or I’m on a stitch up show? Something? .. All day I’ve been removing my left hearing aid so the HCA and nurses can do temperature checks using the ear thermometer- a little impossible to do with a hearing aid in place.. One of the nurses has just come to do my observations and spotted me twiddling it about in my fingers/ holding it whilst my temperature was taken.. she’s just said, ” Oh … I didn’t know you wore hearing aids. ” I explained that I’m bilaterally deaf and wear an implant on my right,which is my reason for admission. I mean, benefit of the doubt, maybe they’re not aware im deaf in both ears?  So maybe she wasn’t aware that I’m also a hearing aid wearer left sided, too.. that was until she went on to say.. ” Oh, I didn’t know you were dead or wore a hearing implant too. ” … are you.. kidding?! Usually under any other circumstances I wouldn’t expect it to be known nor would I mind if under any other circumstances a nurse or medical professional wasn’t aware,but it’s literally the reason I’m here… she tells me she will let the nurses know as she’s fairly sure they’re not aware (turns out they too were not aware until she told them)

My mind is..blown.im .. I’m speechless why do they think I’m here?  Surely they know why each patient is here? Or at least the ones they’re allocated to? I assumed perhaps wrongly it would be known/ in my notes that I’m here because of an issue with my implant? Otherwise what do they think is the reason I’m here? What is it they’re treating me for? ..well maybe that’s why I’ve not had the best care if they’re unsure why I’m here?

Sorry. I wouldn’t usually get this annoyed, but it just feels this is massive,key information that they should already know and be aware of from my admission.. It’s also not overly impressive given that I’ve been in hospital since yesterday lunchtime and on the ward. I’m not much shy of 24 hours now.

20:58–  I’m tempted to make a plaquard with ” I’M DEAF’ in captital letters to wear around my neck.  I’ve just been asked what my name is,I totally understand when new staff take over shift and your care they  sometimes ask what yoy like to be known as such as Elizabeth might want to be Liz, or Robert might want to be Bob,however she doesn’t seem aware of my name just my bed number. I tell her my name is  Bethan I’m asked ” how do you spell that” I understand nobody knows how to spell every name and there can be variations, despite spelling it  and the nurse checking my admission band  she’s still written it on the board as ” BEITHIAN” what? … that’s a new one on me ,I’ve seen my name spelt ” Beth-Anne” ” Bethanne” “Bethann”  and “Bethen” but never Beithian..

21:30– oooh. I know what I didn’t mention this morning I asked for a toothbrush and paste at 8am as some silly person may or may not have forgotten to pack one.. not sure exactly who that bright spark would be..  but ermm I’m asking for these items again as the person in question hasn’t had them yet..

22:00– Right, I’m being a grump. I’m going to call it a night and try to be a bit more myself, upbeat and positive tomorrow . night all and sorry ..

UCLH admission 24/02/24

2:45am– I’m still awake, i can’t sleep,i just can’t get comfortable. lots of tenderness, and there’s a couple of squashy areas to the osia site. As far as I can see with my phone camera ,everything looks normal, I can’t see anything abnormal in the slightest .I’m fairly certain it’s absolutely nothing. However, I know the right thing to do is to head to London to get it checked anyway. Other parts of me are saying I shouldn’t bother going as I’m just wasting time.. I just can’t shake the feeling though that something isn’t adding up that I’ve had four days worth of IV antibiotics,  10 days of oral antibiotics ,so 14 days in total of antibiotics yet I’ve still got symptoms ( localised headaches and tenderness)

The A&E letter from my GP says I have an abscess (I know I absolutely do not). However, I do need to find out why this is happening again and what exactly it is.

Whatever is going on I just hope it’s worth mum and dad coming home early from their weekend away, as I feel awful and so guilty that they’re coming back so soon after arriving.

6:30am– My daughter wakes me by crawling all over me ,she apparently needs a wee and this is of course is the best way to get out of bed.. I’m up,we both are wide awake now. Our morning has begun. I get on with a typical morning routine breakfast, baths, showers, cleaning and tidying before starting to pack a bag for my daughter as she will be going to my parents and a bag for myself- I’m absolutely taking all the underwear and toiletries this time ( I would’ve last time had I known) I’m partially tempted to perhaps just leave a bag of emergency essentials in Joe’s office just in case..

10am– my parents arrive on my doorstep.. my daughter goes running to the door telling them ” mummy poorly ear, mummy go London, mummy go hospital” It’s go time.. I finish packing the last of my things into my bag.   I feel very mixed about everything, to be honest. Especially as my daughter is pretty switched on and clued up, she’s not daft she knows somethings going on and is beginning to get upset, crying saying “mummy I need you,I don’t want Nanna house” which in turn upsets me,but I hold it together. I reassure her mummy’s OK the ear doctor will make mummy’s poorly head better. (Ear doctor meaning Joe) she repeats to me ” mummy ear doctor make you better again? Ear doctor give me my mummy back again” “Mummy more sleepover lomdon” that’s right darling I continue to reassure her telling her and you’re going to have sp much fun with Nanna and grandad.

I felt mixed because it feels very much de ja vu ,it doesn’t feel like this is really happening again, mixed because my daughter is upset and is getting more switched on with what it essentially means now when mummy’s ear/ head is poorly abd its affecting her as she’s now become very anxious, mixed because I’ve no idea the outcome- will I be home tonight? Will I be home in a matter of hours? Will I be home in a few days? Few weeks essentially I’m throwing myself into utter unknown as I’m still not really fully sure what the situation even is- or has been neither is anyone. I can’t lie part of me is feeling everything’s fine and it’s panic stations for no reason an all just been escalated unnecessarily, but the other says this cpild be another mark drawn for losing the implant all together.

Once I’ve got the final bits together, it’s time. We all get into my dad’s car and drive to my parents house where we drop off mum and my daughter, I can’t lie it was hard saying bye to my daughter essentially when she gave me the biggest cuddle and she didn’t want to let go,I knew she was worrying but I knew she knew this was the right thing,  she whispered mummy I love you mummy come home soon better. I will, I promise, and I love you lots too,I love you the most I tell her , love you more mummy comes her reply. I tell her she can call me whenever she wants and send me photos ” I will mummy I love you most I miss you” I love you to incite and beyond baby I tell her and I miss you more but mummy’s OK you be good and have lots of fun ” ok mummy I will”.

Mum also gave me a massive hug before I left, the kind where she didn’t want to let go and I could sense she was getting upset and emotional , she was defintely fighting back tears – I’ve not had a hug like that from her in years

With that, I walked back out of my parents’ front door and got back into my dad’s car and were off for the second time. This time London is our destination. Let’s go. Let’s do this so I can get back to my baby ASAP.

13:00 – im here and I’m officially checked into A&E  with my red band  ( red band= allergies- I’m allergic to morphine) checking in was relatively straightforward ,when I arrived I can’t lie it felt a little surreal to be walking back through the doors I had only walked out off 2 weeks and 2 days ago (well if we want to get technical it wasn’t actually these doors but you get my point) there was absolutely no queue, this actually caught me by surprise I’d expected with it being a Saturday lunchtime that there would be a lot of drunken injuries or sporting injuries. I was the only waiting to check in and i had the choice of 3 members of staff at the desk too…

Once called forward to one of the desks I explained how I had a letter from my GP ,which they were really nice about (much friendlier than my local A&E) they asked to see the letter, so of course I handed this over ,she had a read through the letter and types notes as she does so. Upon accessing my notes/ file she says “you were recently admitted wasn’t you?” To which I said yes,I was discharged two weeks ago. “What was that admission for? Was it for the same thing? She questions kindly. It was indeed.

I asked if she wanted to see a copy of my discharge letter which she accepts and has a read through to make more notes I had brought it with me in case it was needed for any reason. Once she had finished updating the notes she hands the discharge letter back to me and hands me my red band before scanning in a copy of the GP letter which is added to my file/ notes/ admission before the original is given back to me. I’m then told to take a seat and how it shouldn’t be too long.

I thank her and head over to find a seat. There aren’t any free ,it’s pretty busy with people waiting though it seems quiet on the incoming patients,so instead I stand, if I end up having a bit of a wait then I’ll sit on the floor ,but for now I’m OK standing I’ve sat long enough in the car anyway.

checked in, been told it shouldn’t be too long 

13:05– I am called over by one of the triage nurses, it turns out I was actually triaged by the deputy charge nurse . He didn’t seem to understand why I was even here. Brilliant..  off to a good start.. I explain about my recent admission and how as per discharge instructions I had gone to my GP who wasn’t happy with how the Osia site looked and how I was presenting, explaining she felt I needed further IV. He asks why I had come here and not a more local hospital ,I again explain this is because this is where my specialists are and how I need their care.  He asked how long I’ve had the implant, I tell him it was implanted 27th November last year  ( he wanted specific dates) and activated early January.

He goes on to ask if I’ve spoken to ENT, I explain last nights fiasco trying to hold of anyone and how switchboard were very unhelpful saying that I couldn’t speak to on call as there wasn’t an on call team- he wasn’t impressed by this ,  telling me I absolutely can speak to on call if I request to do so, he then asked if ENT are aware im here, again no. I’m asked about symptoms, so I explain I have increasing pain/ discomfort since finishing antibiotics and how the oral ones don’t appear to have made much or any difference.  He checks my temperature and my left ear before having a quick look at the osia site.  My numbers all look good. he  tells me to leave it with him he will contact  ENT on call and get back to me.

I thank him and head back out to the waiting area and resume standing as there’s still no seats.

13:10– a seat has become free ,it’s not ideal location hearing wise as its facing away from the main seating area (it’s essentially by the A&E reception/ check in area facing the window so I’ve got my back to the actual waiting area and wherever I could be called from)

13:15–  The deputy charge nurse comes over to me and tells me that he has spoken to ENT on call , they have agreed to see me. I’m directed to the Emergency Same Day Care Unit .. I know the way.. I walk through the automated double doors ( they’re automated but have to be activated by staff)  and walk through to the ESDCU ..spookily I’m allocated the same chair as I was 2 weeks ago ( chair 6 if you were wondering)

14:00– One of the nurses comes over and asks me to come with her. I gather my things and follow her, in led into a side room where a cannula is fitted in my right arm, slightly more off centre towards my elbow this time, which is much better position in terms of movement and bending my arm etc. She then takes some bloods for testing before asking me to return to my allocated seat to await the doctors

14:20– Dario , one of the nurses who cared for me when last admitted to the ESDCU ( he did my cannula and iv last time) has just come over to do my observations and said how he recognised me from before asking “are you the girl who came in with the cochlear implant before” bingo that’s me..  he asks why I’m here again so soon,I say I’m here for the same thing.  He looks gutted but equally annoyed and tells me how they will take good care of me this time and how he hope’s the doctors take it seriously this time and get me sorted before asking what happened last time. I explained that I stayed in for 4 days on IV antibiotics.  He asks how im feeling ,I tell him I’ve got a raging headache, lots of tenderness  and I’m feeling very nauseous, so he’s gone to find some kind of pain relief that may hopefully help with the headache

16:00–  I have just seen one of the ENT doctors,  who I feel is very junior (nothing wrong with junior doctors they have to learn somewhere) lots of forgetting things or asking the same questions and she didn’t fully understand the implant (kept referring to it as a BAHA and asking about healing caps/ cleaning routines  and other non aplicable things )..  she is going to  prescribe some pain relief  as I’ve said about  the raging localised  headaches and anti sickness medications  as I’ve said I’ve had increased nausea that isn’t shifting ( Dario never came back with anything) usually it comes in waves,however the couple days it isn’t going  she tells me that she is going to speak to some colleagues to see what they do with me . Whether it’s a case of admission for IV as per GP request or further antibiotics to take home and some new follow-up appointments with the team.

I can’t lie I don’t feel reassured or confident to go home with another course or oral antibiotics- I know this is a massive flip of switch from what I was saying yesterday, but I just don’t. Gut instinct tells me I need to stay and that I’m staying put. However, I’ll wait and see what her colleagues say. I asked her if she could inform Mr Manjaly that I’m here as he’s my consultant and I’m under his care, she reassured me that she would do this.

16:35 – The Doctor has came back and has asked me to follow her, i grab my things, but im told ” don’t worry you can leave your things we will be coming back” ok. Seems odd as last admission I was told to take all my belongings with me,I start wondering if maybe I’m going to talk to someone more senior? Or perhaps I’m going home? I opt to take my handbag with me just because it has my phone, keys, and purse in it. I do, however, leave my jacket and my bag of clothes and toiletries – I’m hoping I’ve overpacked on clothes. I’ve got quite a lot with me just in case. Nobody better pinch it I won’t be happy if I’m being admitted with no change of underwear or deodorant ..

Anyway I follow her and I’m taken into a side room where she tells me that she has spoken to Joe and her colleagues . They  have given me two options as to what I do, its in my hands.

1) I go home tonight  with another course of  oral antibiotics, and I’ll be reviewed again by my team in a week-two weeks.

Or what she said in her opinion  is the more sensible option ..

2) Admit me to a ward where they can keep an eye on me to ensure I don’t deteriorate ,  they will administer  IV antibiotics,IV painkillers, and arrange scans to be done to try get to the bottom of what is going on.

She explains that my GP has said in her  letter to them that she suspects an abscess. The doctor tells me as I too had said I don’t have an abscess ,however she tells me she does however believe that there is a collection forming. She explains she’s not entirely sure what and won’t be able to without a scan but her guess is I have a haematoma  ( collection of blood) or fluid building up around the internal implant

So .. It’s an absolute no-brainer.. option 2 it is..

As a result, she tells me she will  arrange for scans to take place, but due to it being the weekend, she can’t guarantee when it will happen however shes hoping and going to push for it to be done tomorrow. There’s also talk of possibly aspirating ( inserting a needle to see if anything comes out) tomorrow.

It’s official that I’m being admitted, and  a request for a bed has been placed.

Mum texts asking what’s going on and I tell her about the two options I’ve got I think she too is in agreement that I stay put. I think she’s feeling more reassured that it’s not been a wasted journey home. Although the osia site looks better this time around- well at least I think so, my symptoms are worse.  I’m just relieved that I was able to slightly prepare my daughter, as I had forewarned her last night it could be someone else sitting with her in the morning- Nana,grandad or a close friend of ours ,explaining that mummy’s head is poorly again snd that I need to go to see the ear doctor in hospital for a sleepover.

17:00 – A trolley  came around to those of us who have been here a few hours with sandwiches and small cartons of juice. I’ve accepted both but have put in my bag as nausea is still getting the better of me to want to eat right now. I get some odd looks from other patients for placing it into my bag, but hey at least I didn’t send half a sandwich flying again like last time.

I was able to video call my daughter tonight before she went to bed so I’m hoping this helps reassure her that mummy is ok- she hasn’t quite got the hang of phone calls thinking I can see her, not understanding why she can hear me but not see me,plus to be honest its easier for me being deaf to face time/ video call anyway.

19:09– Dario has just done some more observations and has said something about moving but he’s put his mask back on so I  didn’t fully catch it beside “it won’t be too long”.. at least that’s what I think he has said..  I’m not sure if he  means a bed? Whether that’s a bed  down here on the emergency care unit or  on the ward? Otherwise, I’m not sure what he means. ” it won’t be long?” Pain relief, maybe? I am still yet to have anything . I know I should have  advocated for myself and asked him to take his mask off again or asked to repeat, but I didn’t.. or even for my pain relief and antisickness that hasn’t happened despite being told numerous times it would be.

19:15 The ENT doctor I saw, has come to call a patient through and stopped to ask if I was OK. It’s a rarity ,but I’m only wearing one ear, and with a raging headache and a  head that’s generally not  with it . I asked her to repeat herself for me at least 3 times, before I realised  she’s telling me she’s  arranging for more anti sickness but through IV instead of oral.. I haven’t even had oral yet.. 

She has suggested that we ask  the nurses  if I can try something to eat,  although I just don’t feel hungry or have an appetite. The last time I ate was yesterday breakfast time  (There’s been 3 of us ENT patients since I’ve been here, one has gone home. I’m waiting for a bed, and the other lady im guessing is something to do with neck/throat as she’s been sitting with a neck hot water bottle)

19:45– Dario has just told me the ENT doctor wants me to try to eat and drink so he’s just gone and brought me a whole selection of sandwiches too choose from, a yoghurt, water, tea and a juice. I still have no appetite, and I don’t want to eat.

19:57– work take the absolute biscuit. I’ve of course had to notify work to let them know that I’m currently in hospital, just in case I’m home for my shift Monday as its looking highly unlikely,  my manager has text asking how I am ,which of course is absolutely fine,however upon me explaining the situation her reply has come ” well I hope its nothing sinister keep me posted” essentially in a read between the lines you better be in work Monday, or at least thats the way I’m interpreting it

20:05 – Dario has just stood behind me talking to me, he removed his mask an repeated a few times but still didn’t work out what he was saying all I caught was something “good” and a thumbs up before he walked off.. ermm, yeah.. I think I don’t know… 🤷‍♀️🤔🤣

20:28– I will never understand soke patients. One of the ladies who is also awaiting a bed has just refused one,because she says she doesn’t like the staff on that ward.. I get it of course you want the best possible care, really I do get that, however you’ve presented at A&E or been sent/ taken into A&E for a reason,whatever that reason may be,you can’t look after yourself and you need help to do so. Hospitals don’t keep you for the joy of it,if they need to keep you they need to do so because that’s what’s best care for you.

Not only is it she doesn’t like the staff on the ward they’ve found her a bed on,but she’s requesting to go to a specific ward ,over at  Grafton Way.  Admittedly the Ward,or at least the one I stayed on for Osia implantation were fabulous.

The nurse has told her how difficult it is to find a bed for patients ,she explains in the last few days there have been patients waiting in these chairs for 48hrs before they’ve managed to get a bed- essentially telling her how lucky she is to have been found one within a matter of hours,not days. The nurse has told her if she refuses someone else will get the bed and she will essentially move to the bottom of the list and is highly likely to be waiting hours potentially she could still be sat here in the morning.

I’m not being funny, but surely you can’t be that unwell if you feel able to pick and choose wards/ beds..

20:30– I’ve managed half a tuna Sandwich and about half of the apple juice, its a minor win. I’m counting it as a win anyway.  

20:49–  I’m the last woman,or man or anyone standing…well sitting if we want to get technical .. everyone else has gone home or been taken to the wards,even silly refusal lady has decided to accept the bed and go..

I feel rather unwell I can’t lie,I constantly feel sick ,like I’m about to throw up,I have absolutely zero appetite whatsoever as soon as i have 1-2 mouthfuls of anything I feel full .

21:00– A nurse comes over and tells me that they have a bed for me on the ward. They are  just going to put a call out for a porter, and then as soon as a porter is available, I’ll be moved to the ward.

Last person sitting..

21:05– A Porter  has turned up with  a wheelchair to take me to the ward. I said I’d walk, but apparently, it’s protocol that I have to go in a wheelchair.I don’t want to waste resources but equally I can’t go against policy and my head is still absolutely pounding.

21.10– I arrived on the ward, I’m on  floor 14 today. One of the nurses very quickly comes over and does my  observations  and tells that she will get me pain relief.. I’m a little more hopeful that I may get some now that  I’m on the ward. The nurse  asks my name and date of birth. They’re struggling to find me on the system

21:15– A nurse called Blessing comes and introduces herself and says she’s looking after me tonight. I’m a bit confused as the other nurse said she is, but hey, maybe I have 2? Can’t complain at that, right? She tells me if I need anything to let her know, and her colleague will sort it out. I can’t lie. I do quietly laugh to myself at that one, im not sure if i misheard her or if she genuinely said that. Blessing  offers me a  gown ,but I’m good, I have my pyjamas with me today. I can’t wait to change into them once I’m settled onto the ward and everyone has done what they need to do.

21:20–  My original nurse , I haven’t yet caught her name comes back and tells me that she needs to weigh me unless I know my weight- i don’t, i don’t weigh myself or own scales as my sister had/ has an eating disorder. I’m absolutely fine about her weighing me, it’s absolutely fine. I hop off of the bed and onto the scales to be weighed. Once completed I get back on the bed and tge nurse goes to record my weight.

The comes back a moment later to say I need to do an MRSA swab ,she  asks if I’ve done one before, I  said yes ,my most  recent was before my operation in November, possibly September  time? she seems surprised and says “oh in that case, you don’t need to dp one then.” she tells me how they have no record of this. She goes to tell Blessing, and I can hear them both debating it, Blessing comes over and asks, “Are you sure you’ve definitely had an MRSA swab in September? Yes, I had one before I had my Osia implanted in November, I tell her . Oh OK we don’t have a record of that,but if you say you’ve had one, then that’s fine.

21:22– Blessing comes back. There’s been a lot of a discrepancy as to who I am.  I’ve heard them spell my name a few times and essentially say computer says no, so Blessing has come to get details from my name band.im asked numerous times to confirm my name,middle name and surname and spellings of this and my date of birth, they check my patient and hospital number, there’s a lot of scribbling down information. Uh oh. This isn’t going well,without this, they can not access my records, and I can’t have any pain relief or antibiotics.

A moment or  so later, the original nurse comes back and asks if I want anything to eat or a hot drink. I thank her but say I’m OK, she disappeared for a couple of minutes then returns and asks me again, again I thank her but say u don’t want anything . The nurse said it’s free of charge,  no payment for it. That’s not why I declined , but again, I thank her and decline the offer . Honestly, I just want pain relief and bed,but it doesn’t look like I’m getting the pain relief I have just asked again, so we shall see…

I wasn’t impressed with nobody being able to locate me in the system or lack of medication, and in pain, I promise I’m not usually such a grump 🤣

21:44– I’m a little annoyed, ok I’m not,more accurately I’m anxious/ worried ,I’ve been admitted as its suspected that I have a haematoma (collection of blood building around the implant) so I’ve been told I need to stay in hospital on IV antibiotics and pain killers and to have scans and investigations as to what the full situation is. Despite this I’m still yet to be prescribed anything all I’ve had is 1 anti sickness tablet and a couple of paracetamol ..the ward staff still as of yet have no idea who I am and cannot locate me in the system..

I’m hoping I see Joe Monday as I know he doesn’t work weekends. I suspect Joe has many questions as to why I’m here and what’s going on. I can’t say I blame him if he does because to be honest I’ve the exact same questions too. I’m not much more in the loop myself as to what’s going on.

22:00- according to the UCLH website I’m on an oncology and care of the elderly ward..I mean I know I’m getting on a bit but blimey do I really look quite that awful?! I wouldn’t quite say I’m geriatric just yet.. mind you In pregnancy terms I probably would be ,so perhaps I am ? I’m also most certainly not under oncology care.. what is going on? I can’t lie I feel like perhaps I should have stood my ground with my parents and held off until Monday when I could  have spoken to Joe to find out if any of this is even necessary.  This is crazy. I suspect wards haven’t been updated on the website as I’m actually in a 4 bed bay where the other 3 patients are all here for stomach/ bowel/ gastro related issues so I’m guessing I’m on a mixed or general ward ?

22:30– I haven’t heard anymore or seen anyone else, so I’m assuming they have my identity confirmed now? Though still no pain relief ,anti sickness or antibiotics . I decided to go in search of the toilets to get changed,take my makeup off, and generally call it a night . I’m hoping I may be able to sleep off this raging headache, seeing as it’s not looking like I’m getting any medication tonight.