“there was an uneasy expression on her face as she said, “I am not at liberty to say right now”.
One day a letter arrived in the post saying I had an appointment at the cardiology department at Homerton Hospital and I had to allow up to two hours.
I arrived at the hospital and started to navigate my way through the endless corridors. A colour coded sign was used for each department and to my curious fascination the colour red was for cardiology. I found the receptionist and as I handed over the letter she gestured that I sit on the nearby chairs and wait to be called.
I made a point of being on time, in fact a few minutes early so I could get out of there as quickly as possible. I sat down and did my best to clear any thoughts. It was a hectic environment of impatient people rushing around, complaining they needed this or that person and asking why they hadn’t been seen yet. The first thing I noticed was that everyone was a lot older than me, double my age at least and I felt out of place.
Thankfully it wasn’t long before I was called forward.
“How are you today sir?” the nurse enquired.
“Very well thank you and how are you?”
“Oh yes I’m doing well thank you,” she said with a broad smile.
She took me through to sit on a chair behind a curtain where they weighed me, took my blood pressure and heart rate.
“Thank you, now please take a seat through there and wait for your name to be called,” she said and went on her way.
I moved to another waiting area and shortly after sitting down my name was called; it was a relief not having to wait long.
A different nurse then explained that I was going to have an Echo (Echocardiogram) and I needed to lie there and take off my top.
Next to me was a machine with lots of wires and I got the sense I was about to be plugged in. Lots of sticky plaster-like patches were positioned on various parts of my body, each with a connecting wire. I was then asked to lie on my side facing the wall so my back was to the nurse.
“There’s going to be a cold feeling from the gel,” she said as an instrument was placed on my chest which she started to move slowly around in small circular motions, pausing occasionally.
She has one hand on the instrument on my chest and the other on the machine moving a ball in the palm of her hand, which I presumed was similar to a mouse and used to focus on certain areas on the screen.
Strange sounds were coming from the machine behind me, like rain drops in a bucket only more metallic and in a regular rhythm. Drop, drop. Various bleeps with a constant beat and a whooshing sound. I glanced over my shoulder to see the specialist staring hard at the screen, clicking away with the ‘mouse ball’. I couldn’t tell what any of it was although I gathered that on the screen was an image of my heart and the sounds were of it beating.
She took the instrument away and I then started to turn over when she said, “just a moment I need some more gel, we’re not finished yet”.
The small handheld instrument was being pivoted in all directions on or under my rib cage to get a clear shot of the heart. The process lasted for approximately 15-20 minutes when she then asked me to lie on my back to get an image of the top of the heart, for which she pointed the metal instrument down under my neck in between my collar bone.
The whole process felt very odd. My body was being prodded, I had patches connected to wires all over me and the remains of the gel on different parts of my chest and neck.
“All done,” she said and started to pull off the sticky plaster wire patches. Some were caught on the odd hair and I twitched as they were removed suddenly.
She handed me some blue tissue paper which was very rough on the skin, more like fine sandpaper then ‘tissue paper’, to clean up the gel which had now formed into a clear play doh like paste stuck to my body.
I put on my t-shirt and asked, “so… how did it all look?”.She paused and before responding there was an uneasy expression on her face as she said, “I am not at liberty to say right now”.
“Oh, ok,” I said and I gathered up the rest of my things and exited the room.
Over the next few months a familiar pattern evolved. I had a test and then received a letter in the post from a specialist saying I need to go and see another specialist for more tests.
It started to become clear that I was getting escalated from one department to another, whilst not being made aware what was going on.
Some of these appointments were in the evening and there came a point when my girlfriend asked why was I leaving home at that time:“where are you going?” came the question, and I didn’t know what to say to her. I wasn’t sure how to say it but I also didn’t know what was going on, I hadn’t really been told yet, just more tests.I did my best to play down the symptoms and said that I was getting ‘an MOT’ as the doctor put it.
“It’s ok, they are just running some tests and we’ll see,” I said as I got my coat and left the flat.
I had a similar unexpected run in with my sister one afternoon. I was home early from work after an appointment and we met at the front door. Feeling flustered, I couldn’t think quick enough on my feet and so told her where I had been and what was going on.
“The hardest part of this period was feeling truly insane and out of it.I knew I couldn’t control the delusion and mind wandering.”
I came round with my eyes still closed, feeling hazy, almost drunk and quite giggly. I was engulfed in a warm fuzzy feeling. I felt quite happy and blissfully unaware of the harsh physical reality that laid before me, or rather, was me. I had a tube down my throat which started to make me choke and I did my best to gesture that I wanted it taken out but I couldn’t move my arms, they felt like limp fins on an exhausted washed up sea turtle.A gentle flap was all I could muster.
I could sense that I had a body but it felt as though I wasn’t wired to it. The connections were just short of each other, like a gap in a bridge.One by one I felt parts of my body come back to life again; where there was nothing before now a presence occupied that space and I realised I could move a bit more, so now I was more like a very drunk sea turtle, flapping about on the beach with no sense of direction.
I tried to signal again that I would like the tube removed, and was now coughing and spluttering as it became more uncomfortable.I heard my mother say: “I think he wants the tube out”, and at the same moment it was removed.
My head felt like it was full of stars, a glistening haze of sparkles in a thick warm darkness; I was back in my own head again.I opened my eyes or at least, I felt as if I did, and all I could see was three vertical strips of colour.They were red, green and brown from left to right.There was no outline, no shape and no texture, just three bold stripes. A three-colour rainbow was all I could see and each colour shone with warmth as if lit from behind by a soft glowing lantern.In an instant I knew that the red, green and brown were Mum, Dad and Tiana respectively and I was reassured by their presence.With an internal sigh of relief, I felt secure.
There was some talking and muttering; my parents were speaking to the surgeon and I sensed stress in their voice but had no idea what was being discussed. It turned out that the first thing the surgeon said to them was: “we listened to the music, it wasn’t really my thing”
I closed my eyes and I could feel the nurses moving around me.Once again, all I could sense was the immediate space around me; I became a dome of space which occupied a circumference of one metre around my body. Again I was disconnected from the physical ‘me’. I felt broad and wide, big empty open space was my nature and I felt so peaceful. Then a feeling in my hand started to come back and like an electric current I felt parts of my body waking up and I was back in my body. I am not sure how long this lasted but I could sense I was going between my body in the physical form of it and then back out above it, spread out, overlooking an infinite horizon.
I had a small plastic morphine drip control button in my hand which I had been told about before the operation andI could administer at will to ease any pain. If I pressed it, it would allow a controlled amount of the drug to enter my bloodstream every few minutes.I wasn’t in any pain but kept pressing it anyway, thinking a few minutes had lapsed each time when in fact it was probably every five seconds given my distorted sense of time.I didn’t want to feel anything anyway.
The next time I came round I was in a room with two nurses fussing over me. I opened my eyes and this time I could see, although it was blurry and I let my eyes adjust. It felt like I was on a ship in stormy seas; my bed was swaying, or was it the room?
Seeing me stir, a nurse came over to ask how I was doing and if there was anything I needed.
I requested a drink, which she got hurriedly.
It felt as though the nurse was continuously fussing over me and saying things.She seemed like a character in a cartoon who was darting from one scene to the next in a tornado of blurred colour and confusion. Whizzing around me from one end of the room to the other, my bed turned into a boat and spun chaotically it seemed.I had no idea what she was doing and remembered thinking to myself ‘this nurse is crazy; she seems so frantic. What is she doing moving so rapidly and what is she saying?’ I felt the motion pause for a moment and having a brief moment of clarity I told myself to calm down.
From then on I gave her the nickname ‘crazy nurse’.It was at this point that I had a personal nurse for twenty-four hours and I have a vague memory of opening my eyes once and then closing them to go back to the familiar blackness where I felt safe.
I woke up as I was moving into another room with three other people nearby.Two of them were my roommates from the first night.I was starting to feel a lot more with it now, or at least I thought I was.We were each propped up slightly by the back of our beds, and were facing each other in a diagonal four-bed cross. There were bright lights on us but the room itself was dimly lit in neon green.
There were lots of wires connected to us from multiple machines and the sounds coming from them seemed deafening. There were bleeps every few moments, the sound of air moving, the oxygen tubes in my nose, nurses coming over and sticking things in me every moment or so, lights flashing, the room spinning.Was I tumbling down a rabbit hole?
It felt like I was in this room for an eternity and it was mental torture.
I looked at the clock on the wall hanging above the door. It was silver with thick, straight black lines on its pale face indicating the time. It felt menacing and as though it commanded the room, like an army sergeant bearing down on me. Slowly it kept time.
I pressed the buzzer in my hand for a nurse to come over and I desperately asked: “can you switch these machines off?Or at least the sounds, the bleeps are driving me mad!”.
It turned out she was new to her position so went away and asked. She came back and politely said: “no”.
Having then dwelled on it for a few moments I realised it was probably a good idea not to turn them off.I looked back at the sergeant on the wall, feeling like a few hours had gone by but not even five minutes had passed.
I came round after closing my eyes for a while and had a sudden realisationthat I didn’t know what was going on. I felt safe but confused.
‘Something’s wrong I shouldn’t be here,’ I thought. Looking around I then started pulling off some of the wires which were attached to me and to generally unplug myself from the spaghetti junction of cables.All of a sudden the bleeping sounds were a lot louder and there were new, more urgent ones as well.A nurse came rushing over seeing me sat half up right and said: “what are you doing?”
In a tone that was perfectly natural and self assured I responded: “It’s alright luv, I’m fine. It’s those three you have to worry to about.I’m off to the loo, where is it?”I thought I had been on a big night out and had woken up somewhere strange. I didn’t need looking after, it was the others that did.I just needed the loo.
Propping myself upright and struggling to move I saw the look of sympathy on the nurse’s face and she gently said: “no, just lie here, you can’t go anywhere.”Which brought my train of thought to a crashing halt, as if a door had slammed in my face.“Maybe she’s right,” I thought, and I lay my head back on the bed as I realised where I was and what was going on.
Every few seconds I was passing liquid, trying to close my eyes to sleep and then sharply opening them without warning. I did my best to ignore the barrage of sounds and generally tripped out feeling which was paralyzing.I looked up at the sergeant timekeeper and couldn’t believe it, only another five minutes had passed.
The hardest part of this period was feeling truly insane and out of it.I knew I couldn’t control the delusion and mind wandering. My mind felt as if it was tripping out and running away with itself.I had moments of realisation which felt like coming up for air, a gasp of sanity which then quickly dissipated as I fell back into crazy town.Without those pockets of sanity, I wouldn’t have known whether I was insane or not. When I came up for ‘air’ it was a welcome relief and offered a moment’s reflection.
I came round and we were being moved to another ward. I was very relieved to not be in that room.
There was a window next to me allowing light to come in bringing a sense of warmth and ‘life’ with it.
I could feel that things were getting better and the sense of urgency was diminishing. I was on the level below where I started and knew that the next stop would be back in the original ward.
I had a new nurse looking after me called Matt. He was slightly overweight with a few days growth of stubble which was encroaching on his goatee and looked Filipino. At first I thought he was a doctor and I addressed him as such to which he quickly corrected me. He was extremely attentive and calm. On one occasion I remember the look he gave me after I asked the same thing ten times in an hour. It was a look of ‘Oh dear, you’re really not with it’ softened with a smile. He had the wonderful patience to provide the same answer in a clear and calm manner again and again. It was from his expression I then realised I had asked him a few times already and chuckled to myself, “Oh dear” I thought.
I had a few more visits from various doctors and nurses. A young female doctor seemed to have been assigned to me who had long dark hair, a pretty smile (which reminded me of Julia Roberts) and warm light chocolate skin tone. She wore glasses that highlighted rich brown eyes and despite the ‘white overcoat’ everyone was wearing, she had a bright coloured shirt underneath which shone through adding a welcomed warmth. I took an instant liking to her, she was kind and caring whilst being professional.
Another time a different doctor was joking and laughing with me. He was of medium height and round shaped with a bubbly demeanour seeming to bob along as he walked. With small glasses perched on his nose he reminded me of a mole.
He recalled a story when he was in training to me and some nurses. “Part of the learning process is to understand how things feel to a patient, what their position is like. When we were learning about the ECG process we had to have the wires attached to ourselves. I have a very hairy chest, so if these wires were stuck to my chest and ripped off, well, that would be painful. So I chickened out of trying this!”
The nurses and I chuckled as he told the story, sympathizing with him.
I was moved to the last remaining ward and all I could think of was two o’clock when visiting hours started.It was the only thing I could look forward to and the clock wasn’t moving fast enough.
I tried to kill time by going for a hobble around the room which the nurses actively promoted. A snail’s race was more exciting than me cranking the cogs of each limb. However, slow as it was it felt good to move and particularly to stand upright.
At the end of the room on the left there was a big window looking out over London. The sun was shining and bathing the room in bright light that reflected off the ceiling and walls. The heating in the ward was set to desert temperatures and along with the sun it was hot but soothing.
I sat up in bed and looked over towards the window to see a huge swarm of flies buzzing in a giant ball of organised chaos just inside the window. With military accuracy they stayed fixed to their position.
“That’s not good,” I thought and looked back around the room to see what was being done about it.
Everyone was calm, lying in their beds being seen too by someone and the nurses were doing their checks as if everything was normal. A pleasant murmur of chit chat filled the room.
I thought to myself how strange it was and when I looked back at the window the giant ball of flies was still hovering in mid air; a bustle of darting confusion and noise. I glanced back into the room and again saw that no one was paying any attention to it and it struck me that I was hallucinating.
Feeling fragile I stared at the end of my bed; it was more comforting.
Throughout the rest of the day I started to notice other patients were losing it too. In a bed opposite and slightly to the right of me was an elderly gentleman who was starting to break up.I could see he thought people were out to make it hard for him; he was being held against his will and wanted out. Everyone was his enemy it seemed. Our eyes met on a few occasions and all I could see was despair.
With a vacant stare, his pupils were large and misty black. His eyes looked like they were popping out of his head, being pushed forward as though his mind was trying to break free. A series of creases cut into his forehead in intense, compact ridges, creating highways of thought on his skin. The pressure was evident on his face.
I imagined he just wanted to get out of here, as I did, but the drugs had consumed his sense of normality.
I found it distressing to see someone being restrained by the nurses and then having to remain in the same environment as them. I took comfort in the thought that at least I wasn’t like that and sympathised as best I could.
It is only from then that I remember seeing visitors. My family had come in during the first two days but I have no recollection of it.Apparently I was sitting upright, quite alert and chatting away to them.
The below image was taken on the fourth day in hospital before I was about to leave.
“I hadn’t realised …….. the amount of pain and discomfort that was kept at bay in hospital by the drugs. All across my back it felt like I had taken a pounding with a baseball bat; a pummelling all over.”
When it was time to leave, my dad and girlfriend came to collect me from the hospital. After a wait for the medication, my own small pharmacy of fourteen daily pills, to be signed off, I was on my way home.
When we arrived I hobbled slowly from the car, up the few steps to the front door and I was in and very grateful to be out of the mental institution.My sister, mum and Gizmo the family dog were there to greet me; I was home, I had made it.
I hadn’t eaten a thing in hospital and was very weak. The food was disgusting and I didn’t understand why. It may have been produced en masse but I didn’t think it was an excuse because it seemed that the most important thing for me, and everyone else on the ward, was to eat healthy food to regain strength and start to heal whilst also keeping any infections away.
I was never very hungry after the operation; it was something to do to break up the monotony of the day and on the odd occasion where I had felt like eating it would have been nice to have something that didn’t resemble cardboard.I had been confused about why the hospital hadn’t put more emphasis on providing healthy (or even edible) food, my tastes buds may have been off with all the medication, but it was still horrible. All I had managed was a sandwich the day before I left, which Dad had brought in.
An added issue as a result of all this was that a particular nurse had constantly nagged me, saying that I needed to pass solids before being allowed to go home. I explained to her that I hadn’t eaten in four days so there was nothing to come out!
That evening I sat down to eat a wonderful home-cooked meal which Mum had prepared. On the plate in front of me there happened to be an array of green vegetables and in particular I noticed the cabbage. Looking at the plate I smiled and lifting my head I quietly said to everyone around the table: “I couldn’t have eaten this if I had chosen the titanium valve,” and feeling reassured I ate the whole plate of food, enjoying every mouthful.
Another thing that added to the sense of insanity that surrounded my experience in hospital was the lack of sleep. At best I had been passing out through sheer exhaustion and intoxication; it was never natural sleep.
The first night I was at home I started to settle down in bed which, a very slow process where I moved at a sloth’s pace, if that, because everything was so uncomfortable.I had instructions to lie on my back and not to roll over onto my side or front for twelve weeks to allow the ribs to fuse together and avoid extra pressure to the chest but I found myself unconsciously starting to roll over in the night and would wake up mid roll to correct myself.
It was hard and very uncomfortable as I preferred sleeping on my side. I had pillows propping me up because I struggled to breathe when I was lying completely flat; it felt like someone was sitting on my chest and the pressure would become unbearable. I didn’t get any sleep for a long time.
I hadn’t realised until I got home the amount of pain and discomfort that was kept at bay in hospital by the drugs. All across my back it felt like I had taken a pounding with a baseball bat; a pummelling all over. It was the ache of many small hard bruises constantly tweaking. I had thought my chest would hurt but it didn’t once.I had to get extra strong (pass-out-strong) painkillers to cope for a few days and nights.
Of course the pain was a side effect of the procedure.Sawing through the rib cage to get access to the organs, the ribs had to be put somewhere to stay out the way, so they ram each rib cage to either side of the body which then causes massive pressure on the back muscles which are squashed together.
Something else I didn’t realise was the extent to which I would have to encourage myself to breathe deeply to open up the lungs and reach full capacity again.They had been deflated during the operation so that now only a small amount of their volume was being used. The nurses advised me to take big deep breaths and inhale as much as I could to inflate them again. As soon as I would start to inhale more air I felt full up and out of breath at the same time.It was like going for an intense training session and really pushing yourself to the point of gasping for air, only I couldn’t inhale enough and when I did I was full.
This gradually got easier as the lungs started to stretch.My gulps for air became longer until I built up to holding my breath for a few seconds. I used daily walks (for want of a better word), twice a day, to practice this deep breathing and get the most out of being outside.On the first walk I managed ten metres to the tree outside my home and I remember saying to Dad: “that’s ok for today,” then turning around and coming back.
Each day I would look forward to my morning and afternoon strolls as it was a chance to be outside and feel the open space. It was the most important part of my recovery to start being active as soon as possible. I enjoyed the feeling of my body moving, even if it was at a snail’s pace, the important thing was that I was moving.
With each walk I would make sure I went that one step or a few paces further, so by the end of the week I had reached the top of the street.There would be a point whilst walking when I would suddenly have no strength and I knew it was time to turn back. It wasn’t a gradual loss of strength; it was immediate, as if I had used all the energy my body was going to provide and a switch had been flipped telling me that I was done for the day.
It was slow going but never felt that way. I stayed focused on just doing the task at hand, without any distractions. All I had to do was walk as best I could and take some deep breaths.
My parents had been looking after me for the first week I was at home and quickly worked out that the day would be based around when I was not passed out, which would happen at any instant.
I would be up early and relaxing on the couch, then I would drift off for a while and then come back around for a bit. I was never fully with it because I was still taking a lot of medication which gave me a strange spaced out feeling. I couldn’t make any decisions, all I could do was be awake for a while and then pass out without warning.
I have a wonderful memory of watching Clint Eastwood films with Dad in the afternoon; it felt so special just spending time with my parents with nothing to do but get better.
Mum’s cooking and both my parents’ love was what I needed and it helped more than I knew.
The following week my girlfriend was there to care for me; it was still a full time routine of helping me shower, get dressed and then general support when I was awake.
She had started her dream job only a few months before and I could sense a struggle in her between wanting to do well at work and passing the probation period as well as giving me the care that I needed.She had never been emotionally strong and it became clear that it was all too much for her.
One day we went for a morning stroll as normal, reaching the park common at the end of the road by now, and as we turned to head back I recognised a figure coming towards us; it was my friend Ben.
Ben lived nearby and happened to be going through the common so came over to say hello. He remarked that when he had first seen me from afar he had thought I must have been a very old, crippled person because everything looked like a complete struggle.It was only when he got nearer that with some shock he realised it was me. We smiled and chatted for a few brief moments and all of a sudden, as usual, the switch had flipped and my energy drained away, so we said goodbye and started to make our way back to the flat.
On the way Tiana asked how I was doing and if I knew whether I would like some food when we got in as she wanted to get some work done.I said that I wasn’t sure and that I need to get back to the flat to see how I felt and go from there.
She pressed further asking if I could give an indication and saying: “I need to know to plan the day and to get things done.”I let her know that all I could do was focus on walking and getting home as I felt very weak, and asked for a moment to just do that first.In an instant she became annoyed and seemed wound up asking: “how do you not know? Can’t you answer this?”
I started to feel unsure about what was going on, I felt as though I was surrounded by a tense cloud of confusion.I explained that at that moment it was a struggle simply walking and it was taking all my concentration, anything beyond that was unanswerable until I was back in the flat. If she could just help me to get home and we could go from there.Muttering under her breath she impatiently walked a few steps ahead and said: “I think you’re being selfish.”
I froze on the spot and stared at the pavement in front of me in disbelief. I couldn’t comprehend what had just been said; it seemed that my slow walking and lack of clarity had got to her.
We got home and I didn’t speak to her. I tried to do things for myself; making a cup of tea and even getting into the shower to wash but it was a waste of time as I couldn’t lift my arms more than a few inches from the side of my body.Not only did I not have the strength to lift them, but I also wasn’t allowed to raise my arms that high as it would stretch the skin across my chest, opening up the wound and splitting the ribs underneath as they healed. For the same reason I couldn’t turn my body appropriately to wash; unable to bend down I was still rigid and feeble like an old man.
She was in the lounge on her laptop and tried to speak to me when I came in but I ignored her. She tried to talk to me a few more times but I didn’t know what to say and sat in silence. My head was spinning with confusion, like a whirlwind it was a complete emotional mess.
There was now this void, like a glass wall separating us as I sat on the other side of the lounge.I tried to understand the reasons for her reaction. Perhaps she felt the operation had come at a bad time. At last she had something to work for and was extremely interested in; not just a normal job, and taking care of me had come at the worst time for her.
She had spoken to her boss and he was happy for her to take a week off to care for me, saying she could do some work as and when she could.
Looking up from the laptop she said: “I can’t do this, you won’t let me help so there’s no point being here.”I was still in shock and barely acknowledging her I shrugged my shoulders and she went downstairs to pack her bags.
My sister was in the flat and about to leave to start her shift at work. She came into the lounge to say goodbye and immediately sensed something was up as I sat there.She was late and rushing out the door so went downstairs to leave. I heard voices from downstair and then the front door opened and closed. There was a long pause and I waited to hear my sister’s car start.
Tiana then called up the stairs to say she was leaving.I didn’t know what was going on and I desperately wanted to. Not knowing if I had imagined the whole thing or done something terrible to upset her. I mustered all my strength and cried out: “what’s going on? I dont know whats happening, please, am I imagining this?!”
I heard the door close.
There was a short pause followed by the sound of footsteps coming slowly up the stairs. Tiana came into the lounge and sheepishly sat on the end of the couch with her bag.
Looking at her and feeling as though I had finally lost my mind I explained how confused I felt and that I didn’t know what was going on. I carried on to say that I understood the job was very important to her and that I was sorry I couldn’t be more specific about how I felt: ‘‘I’m tired one minute, hungry the next, then passing out, feeling sick, exhausted, emotional, in pain; it changes so quickly. That’s why I can’t tell you that I’m going to sleep or that now is a good time for you to work, I genuinely don’t know. My emotions and body are all over the place, everything is really hard right now and I can’t think constructively, or at all. I just need some help please; to be looked after.’’
She timidly nodded her head in acknowledgment, heading downstairs to unpack her bag. Perhaps I needed to explain all this for her to understand how I felt and what was going on.
My sister checked in with me shortly afterwards and I let her know everything was ok and that she didn’t need to come back from work as Tiana was staying. I later realised she had hung around outside in her car for a while to see if Tiana left.