CHAPTER 6. 30.Dec.2022
Hold My Hand: A Journey Back to Life
If you missed the previous chapters of Hold My Hand: A Journey Back to Life then you click on these links to quickly jump to the Prologue, Chapter 1, Chapter 2, Chapter 3, Chapter 4, and Chapter 5 and catch up on any chapters that you haven’t read before continuing. Thanks for reading!
OPERATION #4: HEARTSTOPPER
It wasn’t easy to bring me out of the sedation. My body wasn’t ready. They tried. They failed. They tried again. Finally, they made progress.
I have blurred flashes in my memory of a night and darkness that seemed to last forever. The night between the 29th and 30th December – I think. I was fretting about the discomfort of the nasogastric tube in my nose and the sticky plaster holding it in place. Trying to peel off the tape and pull it out. An impossibility when my hands weren’t functioning – not that I had any idea of that at that stage. I couldn’t work out why I couldn’t do it. The nurse told me off repeatedly as if I was a small child. Her tone grumpy and frustrated.
There were multiple people around me. Voices of the nurse – female – and also a male voice. Another nurse? A doctor? Someone else? The female was looking after me. They moved me around. Changed the sheets and my diaper repeatedly. It seemed like every five minutes. There was no peace in my world.
They’re not warm or nurturing memories. I felt like a piece of meat being pulled around. I have no memory of a kind touch. No empathy. Just sharp words. And a night that seemed like it would never end.
Morning must have dawned in the end. I have no recollection of that or of where I was or what was around me.
It felt like someone was attempting to tune me in to the right channel - just the way that you’d try to tune in the channels on an old TV set by twisting a dial. The fuzzy picture coming and going before dissolving into wobbly lines or a fog of black and white static.
Kim and Mum were there. When had they arrived? People were talking about me. It seemed they were waiting for me to go down for surgery again. I started to pick up bits and pieces – discussions about whether I would come back to ICU after this surgery. They seemed to be hopeful that I wouldn’t. But they weren’t sure. I didn’t like that.
I desperately didn’t want to go back to ICU. I don’t know why. I just knew it will be ‘bad’ if I had to come back. I panicked. I was so scared – though I had no reason to be. I felt so strongly that didn’t want to come back to this place. My reaction was utterly irrational.
The medical person that looked after me (I had no idea if he was a doctor or a nurse) was waiting for another patient to arrive. I had no concept of where I was. I knew I was in a bed. But I had no spatial awareness of where my bed might be – in a room large or small – no sense of whether there are other patients around me. There was a folding screen standing across the bottom of the bed.
I was terrified. Convinced the new patient would replace me and nobody would look after me anymore. They’re sicker. More important. I’m nothing. They’ll forget about me. I’ll be alone. The panic overwhelmed me. I said nothing.
Authors Note. Much of my reaction I think can be explained by the phenomenon I mentioned earlier – ‘intensive care delirium’. Patients experience intense feelings of isolation, confusion, neglect, and loss of control. Plus, a distrust of ICU staff. Survivors recall it as distinctly unpleasant and frightening experience creating both stress and distress. These are vivid memories with factual and fictional elements. I can’t be sure as again I didn’t tell anybody how I was feeling. I could hardly communicate at this stage. But I feel certain that this is part of what I experienced.
I was so tired. So sleepy. I was vaguely aware my adult diaper was full. They changed me. No sooner had they done that and there was another abdominal earthquake. Time for another repeat performance. I felt like I annoyed the nurses. I was so sorry. I felt bad. I didn’t mean to make work for them. I couldn’t help it. My body was no longer under my own conscious control.
30 DEC 2022 @ 11.44
She is more awake today and opens her eyes when we speak to her. She can also squeeze my hand a little today. So small steps in the right direction. She will be moved out of ICU in a couple of hours and will be operated on again at 15.30 where they’ll change the drain / dressings on her thigh. I was so worried yesterday as it all seemed to go backwards. Kim
I was thirsty. Kim fed me ice chips.
Within minutes I was retching. Vomiting horrific jet-black liquid.
More ice chips. More black vomit.
According to my medical journal they managed to give me an anti-emetic and the retching subsided.
Unknown to us the nurse that has been looking after me added another entry in my medical journal. He described the vomiting but also included another important note that my heart rate had fallen to just 32 beats per minute (bpm), yet my BP seemed ok.
Authors Note. The normal resting heart rate for an adult is somewhere between 60 and 100 bpm. But there’s some natural variation in there and for athletes and young fit adults it’s not uncommon to be between 40 and 60 bpm. I wasn’t young, but I was fit for my age and so I know that before I got sick my resting heart rate was in the low 60s or even 50s. But 32 bpm – that was off the bottom of anyone’s scale and classified as abnormally low – something called bradycardia. My brain would not have been getting enough oxygen.
STUFF NIGHTMARES ARE MADE OF…
After what seemed to be hours, they finally wheeled me down for surgery.
Mum and Kim came too. Why? I had no idea. In my head I kept asking myself - couldn’t they just leave? Then I could sink back into oblivion. With them there I had to try and stay awake. It was all too much. I was exhausted.
We went down in a lift. Along long dark corridors. We went down in another lift. More long dark corridors. Soft, silky, black curtains wafted in the breeze as my bed rolled by. Darkness. Were we down in the basement? In the bowels of the earth? There seemed to be almost no light.
It was like a scene from a horror movie where the lights go out progressively down a corridor until something hideous comes screaming at you out of the darkness,
I was scared. I didn’t like this place. I felt suffocated.
I just wanted to close my eyes and for it all to go away.
We stopped in a room with some kind of weird screen at the end. Kim and Mum sat down while the medics compared notes, standing either side of my bed, and talking over me.
I tried to understand what was going on. What were they saying? I grasped that it was about the operation. But I was so confused. I couldn’t make sense of any of it.
We rolled on again. Back into the darkness. More endless corridors.
Another lift. Mum and Kim stepped out and finally left. I felt relieved that they’d gone.
We stopped in yet another room. A different set of medics and more talk. The nurse who had been looking after me earlier had disappeared. I didn’t recognize any of these people. I felt totally out of control. Literally my life in their hands.
I wondered if we would ever get to the operating theatre?
Yet another dark corridor.
And finally, we were in the operating room. They dragged me physically from my bed over on to the operating table.
I wanted to escape. The anxiety overwhelmed me. I just wanted to sleep.
A female anesthetist was talking to me from behind my head. I didn’t like her. I didn’t trust her. I have no idea why. Very probably there was no real reason for that dislike or my distrust of her. More delusions.
I remember the panicky feeling of claustrophobia as she crushed the oxygen mask on to my face. I couldn’t breathe. And then nothing…
Oblivion again.
Authors Note. When you’re going through this kind of experience, sometimes it’s really hard to know what’s real and what’s not. When you’re lying there in a hospital bed, you don’t even question whether what’s happening, what you can see, what you can hear is genuine or not. You just assume at the time that it is indeed true. Why wouldn’t it be? You know nothing of delusions or that your experience may be seriously affected by whatever is happening to your body.
The images of being wheeled through that terrifying, dark, scary environment have stuck with me and have been one of the hardest things to work through psychologically in my recovery. Having now read through my medical journal and various other sources on this type of hallucination – which it most definitely was as the whole operating theatre area is light, bright, white, and glass – I think the experience was likely a product of my heart not functioning properly and therefore a lack of oxygen to my brain. Especially as I know my heart was already beating too slowly before they even started to move me for the operation.
As with so many things that I felt or experienced in my time in hospital I told nobody about the ‘darkness’ and the terror / panic / anxiety that I felt that day until much later after I’d left hospital.
My heart stopped early in the operation. Not long after they’d knocked me out as far as I can gather from my medical journal. It dropped to 25 bpm and then it stopped entirely. I didn’t know. There was no white light. No dead relative coming to escort me to another realm. No out-of-body experience. Well, not as far as I remember. Hopefully that means it just wasn’t my time.
My heart went into something called ‘asystole’ – a type of cardiac arrest where your heart stops beating entirely. It means that the line you usually see going up and down on the heart monitor stopped moving. I flatlined. The line went straight across the entire screen.
Like me you probably think they’d have gotten the paddles out to shock my heart back into action. But that’s not the case when your heart stops in this way. In this situation it’s all about administering drugs and a quick prayer.
Another sliding doors moment in my survival. They got me back. With a combination of drugs – atropine and ephedrine. Atropine was originally produced from the plant Atropa belladonna (also known as deadly nightshade). It acts by improving the electrical conduction of nerve impulses in the heart muscles and increases the heart rate.
They hadn’t even started the operation itself. But once they got me back they made the decision to keep going. I was already anesthetized, and it wasn’t a long procedure so they decided to just get it done.
They noted again that my heart showed signs of AF level one which was not on my diagnosis list yet even though it had already been identified on December 24th when Cardiology were called in the first time. If only someone could have kept track of my medical journal which by this point was huge and continuing to grow by the hour.
Nobody told Kim what happened. Not a single word. Nobody even told him how the operation went.
We’d find out by accident two days later about the issue with my heart.
ICE LOLLIES
After the operation I was wheeled out to the recovery area – right by a big nurse’s desk. The ‘darkness’ I was seeing before the operation was gone. The environment was light and bright.
I was thirsty again, but it was too soon for me to drink water. So, the nurse offered me an ice lolly.
Authors Note. Kim and I have had a lot of discussions about whether this memory is real or perhaps another part of my delusions. The memory is so multi-faceted for me I’m convinced it is real – but who knows? Here’s what I think happened.
The nurse came back with an ice lolly in her hand. Just the kind you’d remember from when you were a child. Frozen water on a stick – horizontal stripes in assorted bright colors. As a kid I was always disappointed when I found out that all the stripes tasted the same.
She stuck it in my hand. I immediately dropped it. I couldn’t hold it. It was the first time I started to register that my hands didn’t work.
The lolly slid off sideways on to my hospital-issue white cotton top. I tried to pull my chin right down into my chest so I could get my lips to it and pull it back up. I managed a lick. Then another.
The nurse came back and put a bunch of paper towels around the stick and tried to put it in my hand again. I managed a few more licks before it slid off again.
Most of it ended up as a watery rainbow adorning my previously white hospital-issue top. It melted into the fabric until the nurse reappeared and dabbed away to soak up the mess with more paper towels.
While I was lying there, I heard someone talking on the phone – he was standing by the nurses’ desk holding a phone to his ear. I think it was the nurse, or whatever he was, that had looked after me earlier – before I went for the operation. He was angry. Very angry. It scared me. I didn’t need to understand the Danish to get the tone he was using.
I tried hard to work out what he was saying. I was absolutely convinced he had to be talking about me. I started to panic. He was asking how the surgeons couldn’t have finished the job properly. No. No. No.
They couldn’t operate on my again now. I was certain I was going to have to have another big operation. Convinced they’d found something in my abdomen that they missed before. Scared to death of more surgery.
He hung up.
I fell asleep.
Did that phone conversation actually happen or was it perhaps another delusion?
Finally I was wheeled away… with no idea where they were taking me this time.
30 DEC 2022 @ 19.26
… flesh-eating bacteria had started damaging her leg and it was removed by removing the flesh around that area and she has not shown any left in blood tests after the 3 pressure chamber treatments and tons of antibiotics and other drugs. We don’t know where it came from and will probably not find out. … This was a close one. Now she needs to recover over the next months. Kim
A NEW HOME FROM HOME
They seemed to drive me around for hours, this way and that, though I’m sure it was just a matter of minutes.
Finally, the bed stopped moving. I was in a corridor. Kim and Mum appeared from nowhere.
I was confused, disorientated, and asking myself: why am I still lying in a corridor? There was what seemed to be a temporary plywood wall in front of me. A set of double doors behind me.
I had no idea where I was. Why had they left me here instead of putting me in a room?
But relief flooded over me – at least this didn’t seem to be the ICU. Not that I had any memory of what that looked like. I just felt this had to be a different place.
A nurse came up with a clipboard to admit me to my new ward – a place called ‘semi-intensive’ here in Denmark and I guess ‘high dependency’ in the UK and other countries. The first step down from the ICU.
She talked to Kim. About what had happened to me. They talked about my care. I was so tired I couldn’t focus. The Danish too hard to try and follow.
Authors Note. I didn’t see that nurse again for days and so I became convinced that she was another part of the delusions that I experienced that day. Until she walked into my room just a couple of hours before my discharge!
Another nurse came in. Warm. Kind. She asked if I wanted something to eat? A yogurt?
“Yes,” I must have whispered. The next thing I knew she was back with a small pot in her hand.
She slowly fed me a yogurt. Spoonful by spoonful. Like a baby. My first real food for over a week.
“Want another?” she asked. I managed a nod and a weak smile.
I was pathetically grateful.
Her English was non-existent. My Danish had gone AWOL in my muddled brain. We worked it out. She exuded kindness.
Over the coming days she got progressively more nervous about looking after me or even coming into my room. The need to speak English to communicate with me made her anxious, I think. Even though I didn’t care – we could have found a way to communicate.
My hands didn’t work. They just flopped around on the end of my arms. I had no control over them. I felt nothing in them. I couldn’t have fed myself or picked up a glass of water even if I had felt strong enough.
I was so weak. I couldn’t move. I couldn’t even change my position in the bed. I couldn’t even attempt to roll over. I just lay there.
Somehow, I didn’t panic. I didn’t cry. I didn’t even ask many questions. I couldn’t use my phone. I couldn’t watch TV. I couldn’t even press the buzzer to call the nurse. I couldn’t do anything. I didn’t even have the energy to care.
Kim and Mum must have left at some point – I don’t remember.
I looked around. Confused. Disorientated. Head foggy. I remember asking myself – why I was still lying in a corridor? Weren’t they going to put me in a room of my own? Was someone going to come through the double doors behind me? It felt like I was going to be in the way.
Authors Note. It took at least 24 hours for me to be able to orientate myself and recognize that I was lying in my own hospital room. I wasn’t lying in a corridor. I wasn’t lying in a room that had some kind of temporary wooden wall. It was all a delusion. I was in fact lying in a completely normal hospital room with a door to the corridor and a door to a private bathroom.
Of course there was no double doors behind me. My bed was pushed up against the wall with all the usual hospital paraphernalia, screens, and tubes and leads behind me.
Again, I didn’t even think to complain or verbalize my anxiety. I didn’t question why I was lying where I was at that time. I just continued to lay there thinking they simply didn’t have room for me until my little world gradually came back into focus.
30 DEC 2022 @ 23.01
This evening after surgery she is more awake and could talk to us. She even said “I love you” back to me today for the first time since the 25th. Kim
I tried to sleep. I lay there thinking I must sleep – that’s what I need most to help me recover. But every time I closed my eyes I saw all of these weird images. They scared me so much that all I could do was to open my eyes again.
Massive stone temples replacing the walls of my room. Crazy forests full of animals. Huge wooden carved monkey faces. A strange children’s playground – swings moving, kids running around, people walking. It looked for all the world as if wallpaper had covered the plain white wall and come to life.
Every time I closed my eyes it all started again. So, I lay there and stared at the ceiling hoping my eyes wouldn’t close again.
Authors Note. I’m not sure what created these hallucinations. Maybe it was some sort of symptom of withdrawal from the fentanyl that they’d been giving me. I don’t know for certain. But they made me so anxious and frightened. The same feelings as the awful nightmares you can sometimes get as a child.
It took at least three or four days for them to stop. I felt like I got no sleep, yet I must have got some in the end. And yes, you guessed it – I told no one. I didn’t ask for any help. I just continued to be terrified every time I closed my eyes – day or night...
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Thank you!
If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read any previous chapters that you might have missed.
Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.
Next week I’ll be posting Chapter 7. New Year’s Eve 31.Dec.2022 - my world starts to slowly come into focus again.
Oh gosh , the more I read the more terrifying it gets. This is what nightmares are made of. It must have been so difficult for your mum , and Kim. I can’t believe your heart rate was so low, that’s so scary. I hope it helps you to write about it all and make sense of it somehow.
Wow Jacqui! This is definitely the terrifying low point of your illness/ ordeal. Sliding doors moments and hallucinations plus overwhelming exhaustion, claustrophobia, fear of ICU and staff!! All those possible withdrawal symptoms from fentanyl that my son describes after back surgery when he was recovering from having been on the highest dose. You were so close to not making it ! - flatlining. You describe it very well. I have felt every minute !