[Editor’s note – this blog has taken over two months to write, so please forgive any jumps in the timeline. I’m surprised it doesn’t hit the WordPress word limit to be honest!
It has been quite a mission finding the mental strength to get it all down, so I have asked Mr Mummy’s Boys to take on the role of Guest Editor. His comments are in italics.
The story begins on Wednesday 24 June 2020.]
Trigger warning: PTSD
This isn’t going to be a pretty (or short!) read and to be perfectly truthful it’s not really designed to be. This is more of a therapeutic post to process what happened to me, which I’m unlikely to read ever again, but at the very least it’s recorded. For background purposes, I had a tooth extraction on the Wednesday thanks to my wisdom tooth growing at 90 degrees into the molar in front of it and dissolving its roots (despite the molar itself being clean). I have ‘mini 8’ wisdom teeth and have always been told they would cause problems because of their rare angle – it’s very common for them to be tilted but not to this degree. My previous dentist even used photos of them as a case study in a dentistry textbook. However, they were never taken out in the past because the guidance for just whipping them out has now changed and they like to leave them in as long as they can. I can’t bear just how much pain and anguish I would have been spared if they had just removed them a long time ago, like they would have done 40 years ago.
The extraction itself was bearable, considering I have a phobia of the dentist and suffer from medical anxiety. However, a day or so later my jaw and cheek started to swell and the pain increased. By Friday night it was becoming unbearable, the swelling was increasing and I remember likening the pain to childbirth. On Saturday morning I phoned my emergency dentist for antibiotics and he saw me straight away, but due to COVID-19, didn’t actually look in my mouth. I fainted when we got home. He had said the antibiotics would take 24 hours to kick in, so I clung on and hoped and writhed around in agony. By this point my throat had started to swell inside and I was struggling to swallow and breathe when lying down. I’m a very stoical person with a high pain threshold, but in the early hours of Sunday morning I could take no more. I couldn’t swallow water which terrified me, and I knew I needed to go to hospital right then, despite every fibre of my being reacting against it.
I remember being silent all the way to the hospital in the car, partly because I was in so much pain I couldn’t think straight, but also because I was petrified and a sadness came over me as though I knew this wouldn’t be a quick fix. I also couldn’t stop thinking about how similar yet how different it was to when we drove to the hospital in the middle of the night to give birth to all three boys. There was no excitement now, just more fear; I couldn’t help thinking that I wouldn’t come home with a baby this time. The hospital was so quiet. We parked straight away and went into A&E with masks. The place was deserted apart from one other elderly man. Matthew was told he had to wait in the car because of COVID. We argued that I really needed him there for my mental health but they explained they could make no exceptions. We were both devastated.
With medical anxiety – likely to have stemmed from everything I’ve been through with the boys and growing up – I cannot explain how frightening even simple obs are. Days later when I was on the ward I watched the nurses check other people’s obs and I couldn’t understand how calm they were and why they weren’t worried, even when the results were awry. The patients even let them check them when they were half asleep, whereas I was bolt upright most of the night, second guessing when they would come next. Anyway, after the first hell was over and everything seemed normal – to my utter surprise – I tried to make myself relax a little, remembering that none of this – not even the extraction was my fault. This is something my dentist (and everyone who knows me well) has been telling me for two years because I didn’t believe it, but I had actually kept my teeth surprisingly clean since I couldn’t reach them properly.
The max-fax team wanted an X-ray so I dragged myself along. The trouble was, I couldn’t open my mouth from the swelling so I couldn’t bite the white plastic thing. He opted for an around the head one instead. The X-ray looked fine so I went back to the A&E reception, feeling sick, faint and severely dehydrated because I hadn’t been able to drink for who knows how many hours. I waited, and waited. I couldn’t sit on a chair any longer, I needed to get my head down. I asked if I could lie down on the floor (I did this in pregnancy and labour as well – I feel so much safer on the ground and I have to let the oxygen get to my head). It took a while for them to understand me – I had lost my voice from the infection and each grunt was agony. They told me not particularly nicely that it was too dirty and I wasn’t allowed to. Eventually I persuaded them to get me a trolley and they gave me a cubicle in A&E. This was a mixed blessing; I was pleased to be lying down, but it suddenly seemed more serious now because I was stuck in the actual hospital.
Machines were beeping all around the ward and doctors were talking in hushed tones – my ultimate fear. More terrifying obs were required even though I tried to explain they had only just been done and really what is the need to torture me again so quickly. I don’t remember the exact details of everything but I remember a lot of rushed paperwork, an obscene amount of blood being taken, constant temperature checks (I think it was 38.1 at this point), the COVID swab which was particularly challenging as I couldn’t open my mouth, and an MRSA swab. I remember crying to various people and asking if I was going to die. None of them said no.
There was a sense of urgency which I picked up on. Then a really nice man called Ryan (it’s strange what you remember from hospital) came down from the max-fax department. He was lovely and put me at ease in his joggers – much more comforting than scrubs. However, he was carrying a large black tool box that put the fear of God into me. After I had relayed as much information as I could to him and he had calmed me down from my latest panic attack, he explained that this was a particularly nasty infection and I needed surgery immediately to drain the abscess. Antibiotics wouldn’t touch it. The swelling had started to block my airway which was why I couldn’t swallow or breathe properly and if left I would die, which he had seen firsthand. There was also talk of sepsis.
I tried to ask why this had happened and the consultant explained simply that I was ‘bloody unlucky’. Obviously it can happen but this was ‘as rare as it gets’. He also mentioned the heatwave we were in and explained infection numbers tend to increase during low pressure. He asked if I was premature, which I’m not, and a million other questions. I don’t have an especially good immune system, possibly from years of having anorexia and bulimia, but I’m not sure that was enough to cause this and neither were they. He stressed I needed the first theatre slot that morning so he went away to do some jiggery pokery with the timetable after reassuring me as much as he could, which didn’t feel like a great deal but probably was. I think it must have been approximately 6am by this point.
I can’t bear to think of the pain I was in by this stage. They inserted the first cannula and hooked me up to fluids and IV paracetamol, possibly more antibiotics too – I really can’t remember. I do remember thinking that paracetamol wasn’t going to do a lot and I was right. They saved the morphine for later. After another set of terrifying obs – I tend to panic more the more they do – they announced I was moving to ESA – Extended Stay Ward – as a holding area before theatre. If ever there was a grim ward it was this one. I was wheeled up and delivered into a ward full of women groaning in pain and swearing. I lay on my bed in the corner in silence, trembling with fear.
[Guest Ed. (Mr Mummy’s Boys): It was about this time that we made the heartbreaking decision that there really wasn’t any point me sitting in the car park any more and I was more use driving back home to the boys and relieving my aunt who luckily was awake at 4am and shot over from Selby to sit with the boys. There was simply no chance that I was going to be let in, and I was just as much on the end of the phone at home as in the car. It didn’t stop the horrible feeling of seeming to be miles away, despite being only 5 minutes down the road.]
Compression socks arrived, and a gown – it turns out I couldn’t put either of them on by myself. A nurse came over with a thick folder of notes and more paperwork. I tried to tell her they had had all the information in A&E, and she said that was nothing compared with the amount up here. However, these nurses were nice and sympathised over wisdom teeth in the short time we had and tried to distract me by talking about my children. They took more blood, did more obs, weighed me for anaesthetic, and suddenly abandoned all other patients to concentrate on me because I was first into theatre and they hadn’t recorded half the details they needed. Incidentally I had a contact lens stuck in my left eye which I felt I ought to tell them about – they said they’d try to remove it in theatre. I also had nail varnish on but they didn’t seem too bothered about that. In a matter of minutes I was being told dire jokes by the porters who were trying to calm me down on my way to what felt like the basement of the hospital.
Theatre was cold, icy cold, and felt what I can only imagine a mortuary would feel like. There were an alarming amount of people, all trying to talk to me at once, which was overwhelming. My anaesthetist was wonderful – so wonderful she came to visit me on the ward afterwards. This is going to sound bizarre but she was either called Margaret or Geraldine. I made a mental note to remember her name so that I could write a letter thanking her if I ever got out of there alive, as she made me feel as at ease as I was ever going to in that situation. At the time I remember thinking what a distinctive name she had and that I couldn’t possibly forget it, and now I have. She was kind and explained how she always felt sorry for people like me who had to have various tubes inserted through my nose and throat before the anaesthetic. I think this was because I couldn’t open my swollen mouth wide enough for them to gain access to the throat, or perhaps because my airway was blocked. She sprayed some banana-flavoured liquid in my nose vehemently, which was most unpleasant, and I flinched several times at the pain. My next memory was waking up in ICU.
I suppose I felt lucky to be waking up at all. I felt as though days, even weeks had passed, but in reality it was only about 24 hours. They told me that the surgery had been successful, but that my heart rate had dropped in theatre and the swelling in my airways had required me to be intubated and sedated. I was still on a ventilator at this point I recall. There were wires, machines and people everywhere. I had three separate cannulas for two lots of very strong antibiotics, steroids, fluids and painkillers. Each time the drugs flooded into me my hands stung and ached and then a freezing sensation emanated through me. This continued every two hours for the next 4 days, meaning rest was nigh on impossible. Joanna was my ICU nurse and she was lovely.
I remember the exact location of my bed and where all the nurses stations were. There were people watching me all the time – no less than three desks were positioned so they could all see me at once, and Joanna was by my bed most of the time. There was one other patient in the next bay (a considerable distance away, perhaps because of COVID-19), but he moved out quite quickly to leave just me. I remember being pleased for him that he’d made it; he was part of the lucky 50%. Joanna tried to distract me from the pain and my anxiety by talking to me. I couldn’t talk at all so I wrote everything down. She asked me about my job, my children, my favourite colour, my favourite song – she even said she would try to get hold of it for me to listen to, but she never did. I asked her if I’d ever sing again; she said we would have to wait and see. Although this was devastating, I remember feeling lucky to be alive and that put it all into perspective. Now I just had to stay alive.
Joanna also tried to distract me with TV. Anyone who knows me well will know this doesn’t work at all, and this was no exception. I couldn’t move my head or neck and the TV refused to move into a place where I could see it without being in utter agony, so I rested my eyes instead. Nevertheless, she insisted talking me through the inane drivel we were watching. I remember it was ITV2, which I’d never set eyes on in my life for longer than five minutes, and she explained about this transgender American comedienne/presenter (who according to Joanna was filthy rich) hosting a game show, which as far as I could tell from my limited perspective seemed to involve answering trivia questions and then getting dropped into a vat full of gunk when you answered them wrong. Essentially it was a poor man’s Swashbuckle and I would have taken CBeebies any day.
Time passed, somehow, and I was moved onto an oxygen mask successfully. They raised their concerns about pneumonia, which I rather wished they hadn’t. I was injected with God knows what to prevent blood clots. Little did I know this had to take place every 24 hours while I was still in hospital and it became more painful each time, despite them all just calling it ‘a sharp scratch’. The sharp scratch didn’t account for the next hour of additional pain. I was told I would need to learn how to swallow again and how to talk again; these were the priorities. I had to start my throat muscles working so they didn’t forget how to operate, but I also had to rest them. I was offered extra pain relief every so often and I took the lot. Worryingly, morphine didn’t seem to do anything, but that may have been because the pain of swallowing the liquid was so great.
I was asked to cough repeatedly so duly obeyed. I was told I had a ‘strong cough’ – a good sign – which they had to keep checking. This was to make sure the remaining poison, which was at that time draining into a chest bag from my throat, didn’t get into my airway. The smell made me feel sick and it hung heavy on my jaw. They told me they had drained 279ml of infection just in theatre, and it was still coming. There were three, quite large plastic drains in my throat, unbeknown to me at that time. My throat was raw, far worse than any tonsillitis I’ve had, my left ear was throbbing, and my mouth was silently screaming in pain. It is now three and a half weeks later and my throat and ear still hurt, but considerably less thank goodness, so I no longer need to max out on pain relief. I was also shivering violently. I shivered like this a lot during all three labours with my boys, so I wondered if this could be adrenaline. I was wrapped up in blankets and my feet were still numb. I have poor circulation anyway and I later learned that ICU has to be kept cold to constantly circulate fresh air.
A physio called Tom came to see me later that day and he was a breath of fresh air. He symbolised a speck of normality and hope. He was also a really nice guy and we chatted running and compared Strava routes around York for quite some time. He was confident I’d run again in time; I wasn’t convinced. Tom was right of course. He went through the motions and refreshingly minimal paperwork, then asked if I wanted to sit in a chair. I said I’d rather go for a walk, so that’s what we did – very, very slowly and with support on both sides. He said he wasn’t used to ICU patients walking so was extremely careful not to push me. He took me on a tour of the COVID-19 ward adjoined to ICU, an image I’ll never forget. It reminded me of a Victorian hospital – sparse and clinical yet simultaneously well equipped if that makes sense. There were giant white bubble screens with zips separating the wards, which reminded me of my prep school’s zip up outdoor swimming pool we had to rush in and out of to keep the heat in. The empty ward made much more of an impression on me (even under the influence of anaesthetic and drugs) than an occupied one would have done.
Later that day I was told I needed to try to start drinking and intaking liquid foods if possible. I couldn’t think of anything worse. You would think in a life-threatening condition that a long-term eating disorder would take a backseat. You would be wrong, and what’s worse I knew it was coming. I was presented with orange squash on a sponge for starters – I could still barely swallow so had to wet my lips. Next came melted hospital ice cream and a shockingly vile vanilla custard type thing which Joanna called soup; I think something got lost in translation! This completely confused me as I assumed it must be chicken soup from its colour and got rather a shock on tasting it. The whole thing was just wrong on all levels to me, especially when I was told I had to finish it. As far as I recall the rest of my time in ICU was spent practising breathing, coughing on demand, shivering, and being monitored and poked left, right and centre. That afternoon the joyous news came that I was waiting for a bed on a normal ward – it felt like Christmas!
The bed took ages but I didn’t mind because I knew I was going up in the world which had to mean they thought I was strong enough to survive. I finally arrived on Ward 14 – a Surgical Assessment ward – later that night and everything felt so alien. Bizarrely I felt less at home than I did in ICU, perhaps because I was left to my own devices more and everyone was there for such varied reasons. The wards had all changed because of Coronavirus so there was a fair amount of confusion amongst the staff too, which wasn’t particularly reassuring. Mealtimes were horrendous, mainly because they just expected me to eat like the next person who had had a hip replacement – that was how diverse the ward was. I could barely open my mouth, never mind chew, and I still have to use baby spoons now. At one point it took me four-and-a-half hours to eat half a yoghurt.
[You missed this bit of the tale!…
There was also quite a brouhaha when, despite the Consultant saying she needed to eat as much (liquid) food as she could, one of the nurses insisted she had to be nil-by-mouth until she had been assessed by the Speech and Language Team (the specialists in all of the physiology in the throat) to ensure she wouldn’t choke. Needless to say they never arrived. Eventually, after being deprived of everything for the whole day, she begged for another yoghurt so that she could at least nibble on something. When the Consultant next did his rounds, he went apoplectic at the nursing staff. Apparently the S&L team said it could be a few days before they could come and assess her, so luckily they abandoned all talk of nil-by-mouth, as I think she would still be waiting.]
As always, there were some nurses who clearly loved their job and others, sadly, who clearly didn’t. In general I was treated well, although leaving empty drips in for much longer than necessary when they had finished and not bothering to check until I buzzed each time wasn’t particularly clever or kind. I had to have each antibiotic administered separately, followed by steroids, followed by pain relief. Each drip took roughly 45 minutes (unless I moved by accident, dislodged the tubes and nobody noticed in which case it took a hell of a lot longer) and the pain stopped me sleeping throughout. By the time all four drugs had been administered every 3.5 hours, it was time for the first antibiotic again and I still hadn’t had any rest. On the odd occasion I grasped to shut my eyes I was awoken with obs or bloods or physio or speech and language therapy or meals I couldn’t eat and drinks I couldn’t drink.
I couldn’t lie down at this point either – in fact it has taken me five weeks since surgery to get down to two pillows – mainly from fear of not being able to breathe again. I only ever normally sleep on one pillow and used to detest any more. I still wake up most nights, purely to panic that I can’t swallow properly. I remember one night in hospital I was so uncomfortable, in so much pain, and just feeling so lonely and trapped that I buzzed to ask for help just to get comfortable. It felt ridiculous and took me ages to pluck up the courage to buzz because I didn’t want to waste their time. I’m glad I did though. I was propped up with pillows and day by day felt a little more human.
I was discharged a few days earlier than I should have been owing to COVID-19. They wanted as few people as possible on the ward so we were all sent home at the same time, which seemed a little arbitrary. I still had a catheter, the neck drain and three cannulas still in just hours before I had to make my way out of the hospital by myself. There were no porters or wheelchairs allowed to discharge us (bearing in mind I had only taken a few steps in days), and I even had to ask for a face mask as mine had been used on the way in. I felt awful and by all accounts I looked even worse – as white as a sheet. The nurse who discharged me rattled through so much information so quickly I didn’t have a clue what I was doing with all the medication and dressings [a hodgepodge of various tablets, liquids and mouthwashes, prescribed at various points during the stay, with no instructions on when, how, or which were substitutes for each other or if we could force the lot into her. We just guessed and hoped for the best]. Although I was relieved to be going home, I was also terrified. Thankfully I met a kind nurse downstairs in the hospital who clearly thought I should still be on a ward, and she carried my bags and helped me to the exit, evidently maddened by the staff on Ward 14.
That first night at home was hell. My children didn’t want to come anywhere near me, unsurprisingly, but all I wanted was them. I didn’t look like Mummy, I couldn’t move my head, I could barely walk, Mr Mummy’s boys had to bathe me for the first two weeks or so, I couldn’t eat, I was extremely weak and it was painful to talk. My open wound [quite a sizeable wound at this point, a letter-box approx 2.5″ long and 0.5″ wide but we didn’t tell Mummy this, in fact she probably still doesn’t know…] was still constantly leaking infection and the dressing had to be changed every few hours which was incredibly painful. That was on a good dressing; the position on the neck meant that, although it required the biggest dressing, with extra padding, it was next to impossible to get any adhesion on the dressing. [It looked like Mummy was being held together with micropore tape most of the time]. I spent most of the first week or so crying. I was very lucky my mum had come up to help as Mr Mummy’s Boys was supposed to be doing his first week of work since lockdown. I had been told to practise swallowing and coughing but the pain was unreal. I hardly slept that first night and at 4am declared to Matthew that I needed to go back to hospital because I couldn’t swallow water and I couldn’t breathe lying down – my airway was still swollen. We got everything ready and then came downstairs to my mum – we both knew I had been discharged too early. I was having a full-on panic attack.
Thank goodness my mum saw sense. She knew how terrified I was about going back into hospital, sat me down, and made me drink orange squash, milk, chocolate milk, water, orange juice – any fluids we had (I wasn’t allowed hot drinks for a long time) until I had started to learn how to swallow again. It was painful and took several hours. It was also one of the most frightening things I have ever done because each time I took a tiny sip, I was petrified I’d choke. And I did choke plenty of times, which made the next mouthful harder, but eventually I realised I had finished half a cup and I was so proud of myself. I just wanted to sleep, I was completely exhausted but I had to keep drinking as I was also severely dehydrated and the drips were no longer providing me with fluids. Little by little, my confidence grew and I eventually started on liquid foods such as soup.
Each day, I tried to do something more – to shampoo my hair instead of someone else doing it for me, to walk a bit further, to eat more textured food, to talk more, to reply to messages. Each day I became a little stronger, although there were plenty of setbacks along the way and I was still terrified it would come back, as there was still a risk of the infection taking hold again. I became frustrated with myself because I couldn’t do such simple things and I had to rest all the time because I was so weak. Slowly, the boys started to recognise me again; they were still scared and it took a long time before they were back to normal with me, but I’m pleased to say they love me [and argue with you] more than ever now!
Six weeks later, when I was more rejuvenated and functioning relatively normally, I felt what I thought was an ulcer on my gum near my wisdom tooth on the offending side. It was sore, but I didn’t think much of it and religiously applied Bonjela. Over the next few days it grew bigger, sharper and seriously painful. Every time I spoke or moved my mouth it was cutting my tongue, so much so that I couldn’t eat. The boys had a routine dentist appointment so I asked him to check it (he does owe me after all) and it turned out to be a tiny fragment of jawbone that had been chipped off during the extraction. He said it would most likely grow out on its own and fall off, but if it doesn’t he’ll take it out in four weeks’ time which was the first appointment he could find. I couldn’t believe I had to spend the next four weeks in more agony after everything I had been through.
A week or so later it did indeed fall out and I was ecstatic. Slightly terrified at its strange sensation and bizarre happening, but ecstatic nonetheless. I dared to think this hellish episode might actually be over. I was wrong. The following week the same spot started to become sore again and low and behold, I found another fragment of bone protruding through the gum. How many more could there be? How did it know to come through the exact same spot on the gum – are there directions down there? How had he chipped so much bone off in the first place? I fired all these questions at my worried looking dentist, who to be fair to him had been brilliant throughout and rung me most days after I was discharged from hospital. He explained that this bone was the cause of the infection in the first place.
I suddenly felt a weight lifted from me. I had been worried all along that I was more susceptible to infections with a low immune system and now I was being told the cause was nothing to do with my body – apart from that it detected a foreign body and fought against it, which I can’t really fault it for. I finally had answers, despite having been in pain for the last three months, and I was so relieved. I was of course still desperately unlucky. According to the professionals, they chip off bone quite frequently in extractions (one would hope by accident), and it almost always works itself out before it becomes a problem. Of course I had to be the extremely rare exception. The fragments were too small to show up on X-rays apparently so the hospital didn’t pick up on it, although they would have drained several other bone fragments out in theatre with the infection. The second fragment pushed itself out only a few days ago, and I am now hoping there are no more to come.
Whilst the pain has largely dissipated, my wound – which only closed a week or so ago – and my throat are still decidedly painful at times and swallowing is sometimes harder than it used to be. Certain positions aggravate the pain too, and I still have no feeling in part of my neck and throat. I still wake in the night for water and panic I won’t be able to swallow it, I still have flashbacks and the occasional nightmare about theatre or ICU, I have a mental (and physical) scar that isn’t the kind of thing you can forget about, and I won’t be healed internally for 18 months. It has also affected my work as a singer and singing teacher. At present, my vocal range is vastly diminished and I shall need to retrain gradually to get my voice back to where it was. On the (rare!) occasion I have to raise my voice to the boys, it then hurts for a couple of hours afterwards. Life as we knew it changed and it won’t go back, it will never be the same. This will always be here and it’s simply about coming to terms with that. Despite everything, I am so pleased to have won this battle and am thankful for both my mum and Mr Mummy’s Boys for putting up with me being such a terrible patient! [You’re welcome!]
Mummy's boys 