“…..I felt a bolt of lightening in my chest, as if my heart had twisted itself into a knot with two halves turning in opposite directions…..”
Over the course of the next month I had many appointments and lots of preparation to do for the operation and whatever may come afterwards. Ultimately, I had to make a choice and needed to accept what the outcome may be. My head was a whirlwind of information but I had a simultaneous sense of feeling separated from reality.
I felt increasingly distant from everyone and everything, as if I was on the sideline looking in.I felt as though I was observing them all, a hidden presence watching the world go by at a distance. It was as though I was apart from the conversations.I was physically there but not at the same time. I had a need to retreat within myself to come to begin to be at peace with the choices I made. I felt like a melancholy shadow, my world seemed to only exist within a metre around me. Unless something was immediately relevant and I needed to do something then and there, it didn’t exist to me.
By now my health was rapidly deteriorating, which I think had something to do with the release of emotions, letting go as best I could, but of course the physical decline was inevitable anyway.
The reality of it all dawned after lunch on what turned out to be my last day at work.I started to feel very hazy; struggling to keep my eyes open as the world span before me and I felt increasingly weak.
To some degree this feeling had become the norm in the afternoon, they had started as small signs early on and had gradually increased in intensity and frequency. By the early afternoon my energy levels were depleted and I needed to rest. Some of this was due to the catalogue of medication I was now taking; the beta blockers in particular had drowsy and unpleasant side effects.This time it was different though.
I got up and tried to walk it off, which occasionally worked. Gentling strolling up and down the corridor doing my best to ignore the swaying walls and the river-like curved shape of the floor. I put my hand out to prop me up when I needed it for extra balance.I went into a vacant room and leant on the wall; I felt exhausted and thin, as if I was fading away. My energy had been switched off, unplugged, there was nothing left. I could feel everything draining away from my body, retreating backwards from my limbs towards my chest like water returning to its source; I was shutting down.
I had pins and needles in my left arm and I was losing balance. Part of me wanted to collapse and give up and another, stronger part prompted me to get my phone out of my pocket. With a sense of denial, I called 111, the NHS help line, explaining how I felt and my condition.Immediately the operator told me to put the phone down and call 999.
All of a sudden I felt a bolt of lightening in my chest, as if my heart had twisted itself into a knot with two halves turning in opposite directions. Then two very hard powerful thumps hit me and my heart pounded with a huge shock, as if it was going to burst out of my body.The second jolt was so strong that my legs gave way and I collapsed against the wall.I managed to get my boss’s attention through a window in the door and he called 999 whilst holding me up.With tears streaming down my face because of the shock, all I could think was ‘please, I don’t want to die at work’.
An emergency response biker arrived quickly, shortly followed by the ambulance. I was breathing heavily and quickly by this point and had now hyperventilated.I was instructed to breathe slowly as they ran a quick test, calmed me down and then put me into the ambulance that hurtled towards A&E.My girlfriend had arrived just in time to get into the ambulance with me and I turned to her with heavy weary eyes, dropping my head onto her shoulder and muttering: “that was terrifying.”
By the time we got to hospital I had calmed down and my heart had returned to normal.I was put into a room and we waited for the tests to begin.An Italian doctor greeted us both. He had small round glasses, a roughly shaved face and hair that needed a good brush; in a funny way he reminded me of a young Albert Einstein. I proceeded to inform him what just happened and the condition of my heart.
He got out his stethoscope and listened.His eyes lit up like an inventor having a eureka moment and he got quite excited. The sound of my heart was abnormal, which to a doctor was most intriguing and quite rare.
We went into the details of what was wrong and had a pleasant conversation about it all. It became apparent that my heart had started to fail but had, thankfully, kicked itself back into action so they had to do a few tests to check for tears and blood leakages from the heart.
A few minutes passed and the doctor asked if he could bring in one of his students to listen to my heart and see if she could form a diagnosis. I smiled and said; “sure”.A young, female doctor with blonde hair and a white coat came in. Getting out her stethoscope she placed it on my chest. It was interesting to see the expression on her face change as she listened; a puzzled look came over her and I could see she was scrambling around in her brain for the correct medical term. Could she identify it?Did she know what she was listening to?
Not being able to find the words the doctor asked me to tell her.Nodding at me with recognition she offered a forced smile, wished me well and retreated out the room.I chatted further with the doctor and asked if this meant the operation would be brought forward. He said it wouldn’t but if it happened again or had ‘gone the other way’ they would rush me straight into theatre and operate.
On reflection it made sense; there was only one thing that could happen and anyone who was in line for the operation would be in just as serious a condition so there was no reason I should be moved up the queue.No one would be having this procedure unless it was absolutely necessary, I would have to wait my turn.
I didn’t remain in A&E long and made my way home feeling very shaken up.
“I had just enough air to keep me going but knew I needed more…..”
A week or so after I collapsed I went to visit my godmother for what could feasibly have been the last time.
She lives just on the outskirts of a village called Royal Wotton Basset in a cottage on a farm.It is the epitome of typical English countryside and I love it. Being brought up in the West Country I always get a sense of respite when I visit her. It’s like going home and I refer to her as ‘Mum Number Two’.
When I got there we went for a short walk in the woods nearby to chat and go over everything that was happening. The main topic of conversation was whether I had made a decision on which valve to have. “It would be best to come to terms with that and accept the decision before you go into hospital,” she said.I was leaning towards the tissue valve and could tell this was not what she thought was best. She did well to hide her thoughts but her reaction was clear to me.
We walked for about 10 minutes through the woods. There was a lovely autumnal air indicating that winter was well on its way. The trees had shed all their leaves and provided dominating skeleton structures against the foreground colour of tinged brown, red and yellow of the remaining leaves held on by a thread. Nature, especially woods and forests have a certain magic to them when the seasons are changing.
We walked back to the car and I started yawning, normally to start with but it progressively increased. For every few words I uttered, mid conversation or after a couple of unsure steps I would yawn.I just couldn’t stop yawning.
We drove back to the cottage and the yawning continued. I would take a deep breath of air and then yawn, like a fish gulping to be put back into water.I was struggling to breathe and needed more oxygen.My godmother asked if I was ok as something was obviously up but I didn’t feel tired and although I thought it was a bit strange just answered: “Yeah, I’m ok”.
It was an unusual feeling to yawn continuously and feel out of breath at the same time. I felt like I was underwater wanting to go up for air and not being able to, somehow I was held down. I had just enough air to keep me going but knew I needed more. Desperately I wanted to come up and take a breath, I could never quite take in enough air so kept yawning.Eventually it stopped and I appeared to return to a normal breathing rate with much gratitude.
I spent twenty-four hours there and headed home to London.
“I felt as though I wasn’t talking to a person; I was talking to a screen, a shell of someone I once knew”
Back in London and with only a few weeks to go until the operation I was feeling incredibly drained both physically and emotionally. I felt weaker and weaker and I was permanently operating at fifty percent.
I quite literally needed a shoulder to lean on and very often a simple hug.
It was a strange period where it felt like I was surrounded by ghosts – everyone was just a blank screen to me. It was clear that people were putting on a front with me and were hiding how they truly felt about everything that was happening.They were not allowing their real thoughts, fears and anxieties to come to the surface for me to see.I could only presume they thought they had to put on a brave face; keeping up the appearance of being strong in order to be there for me.However, nothing could have been further from the truth of what I actually needed and puteven more of a barrier between us.
I couldn’t get anything out of anyone which made me feel more alone. I felt as though I wasn’t talking to a person; I was talking to a screen, a shell of someone I once knew – like they were ghosts.
I kept thinking that I wished they would just scream if they needed to. Punch, cry, yell, say, do whatever they wanted. I needed feelings and emotions. I wanted them to tell me how they felt not present this false shadow.I wanted them to show me they were human, show me who they were so we could do this together by helping each other. I wanted them to be honest and break down if they needed to. I could handle that; I could handle them being real.
I concluded I would have to work this one out on my own.
There was only so much advice anyone could have given me. It was having the choice of operations that made it so hard. A friend of mine commented: “you wouldn’t wish that choice on your worst enemy; it’s such a decision I can’t even begin to imagine.”
I wasn’t in a situation where they could say ‘this is the case and this is what we’re going to do about it and you’ll get better’. I was given a choice and I had to work out what was going to be right for me.
It’s an almost unfathomable decision until you are given it; it meant deciding what sort of life I may have after the operation, depending of course on how the operation went.I had to base my answer on unknown factors. What was life going to be like and what life did I want?
I arranged to see people as and when I could, generally during the day as I was too wiped out in the afternoon and evening.I was and still am grateful for the loving friends I had around me who would come to see me. It became quite strange when we were saying goodbye as it could potentially have been for the last time and I had this feeling that I was preparing them for what was coming.
I have decided to include an extra commentary on this chapter as I feelits important to remind the reader that the decision I came to is based on personal experience and the surroundings I had at the time. There is no definitive answer to the question ‘which valve would you choose?’ as the choice will always be personal. My wish is not to influence someone else’s decision, only depict the struggles and questions I was facing at the time and how I came to a peaceful resolution.
No one was willing to give me their answer. What would they do?Which valve would they choose?
I guess they felt their opinion may influence my judgement and they couldn’t accept the responsibility of that.The entire medical world was pushing me towards the mechanical valve on the basis that an operation of that severity would only ever be given as a last resort, so the possibility of two should be avoided at all costs, which I did agree with.
I had three options as I saw it; I could have the mechanical valve, the tissue valve or no valve at all and simply see how long I survived.Even if I had the operation there was no guarantee of surviving.So in fact the part I had to make peace with was that in any scenario I would either wake up or I wouldn’t, and that I could be happy with.
It was something I meditated on daily.I allowed this sense of calm to come over me and carried it on through my activities as best I could.I couldn’t get my head around the idea of Warfarin and the restrictions I felt it would put on life.The mechanical valve seemed like a great idea but nothing else surrounding it did. It was as if I was fixing one problem and creating another one.
I thought ahead in life as best I could, hoping to be able to go snowboarding again as I missed the mountains. I wanted to ride my bike and live life not feeling burdened by monthly hospital appointments with daily medication and injections.Having just turned thirty I still felt the need to embrace a life of living.
The people I communicated with online who had a mechanical valve said it was fine and something they quickly got used to, life changes all the time and you adapt.I felt as though the mechanical valve was like resigning yourself to a certain fate; a definite circumstance that could be avoided.
Medical advances are being made all the time in huge leaps. In ten or twenty years who knew where we would be and what the possibilities could have become?Perhaps by then they would be able to grow my own valve, I thought.
My sister has type one diabetes so she constantly injects herself regularly to balance the levels of insulin in her body. A daily log is kept of her levels and the dose is altered accordingly.Every now and then she goes to hospital or the doctor for check-ups.We lived together for four and a half years so I was very familiar with the disease and how she had to change things because of it. It wasn’t something she was born with; she was diagnosed in her early twenties. Living with a type one diabetic brought the decision I had to make home to me, about what it meant to be continuously beholden to medication, and I imagined how it might be for me in a similar situation.
I had a choice about the future I wanted to have, and she never did. I could have the mechanical valve and be like that or not.
I kept thinking that it wasn’t just about the heart. There was all this emphasis on the heart and the valve but the body is a whole organism, all connected, not one part is separate from the other. It’s about a healthy whole, not just the heart.
It was about two weeks before the operation date and I came to the conclusion I would rather have quality of life over quantity, so I decided to have the tissue valve.
“Music has always been a huge part of my life……creating a playlist for the operation seemed natural.”
At one of the appointments my call on nurse Emma had explained that many people ask for a religious object or something of personal importance to have nearby while they are operated on. Some people have had a special handkerchief, a bible or a family ring on the pillow next to them as they are asleep. The surgeon’s would accommodate any request as best they could to help the peace of mind of the patient. So was there anything I would like?
Music came straight to mind.
Music has always been a huge part of my life. As a child I always latched onto a song and had to find out as much information about an artist as I could.I started clubbing at fourteen going to as many gigs and festivals as I could. It was an inextricable part of my life.Music has always been my ‘go to’ retreat for anything that came along. It is the perfect companion for any mood.
I had been DJing and producing music for years so the idea of creating a playlist for the operation seemed natural.I requested that music be played throughout the operation and asked if I could be the one to make the playlist.Emma gave me a puzzled look and agreed to ask the surgeon, enquiring as to how it would be done.
“I could bring an iPod and speaker in with me which would just need you to press play,” I suggested, adding: “if at any point it distracted any member of the operating team they could turn it off.”
“You will be under general anaesthetic and won’t be able to hear anything,” said Emma.
I wasn’t so sure and imagined it being like a very deep sleep. If this was the case I had heard, read and was aware of things getting into your subconscious so I wanted to put together a mix that meant a lot to me to keep me soothed.
She got back to me with the news the surgeon had agreed, commenting it had never been done before, and I created a four-hour playlist of music that had affected me in some way over my life and felt appropriate at the time. I was producing a lot of dance music and wanted this to be reflected whilst the operation was happening in order to stay relevant in my mind and perhaps bring some new inspiration.
In the end it was more rushed than I would have liked.Time had crept up very quickly, organising everything and everyone.The week before the operation on one afternoon I sat in front of my computer and went through my collection. I drew from anything that had an emotional response.
“it’s a good thing you’re here, you wouldn’t have made it to Christmas.”
After the operation I would need someone to take care of me for at least a month, so we had worked out who was going to look after me on a week-by-week basis. I would need help with everything from showering, to cooking and getting dressed; any activity required supervision as I would be totally dependent on whoever was there that week.
My parents were going to do the first week to ten days, my girlfriend would be with me the following week and my sisters were each allocated a week thereafter.
Things had been tense in the home for some time; my girlfriend and I were not communicating well and no doubt I was coming across as distant.
Mum and Dad were on their way up to stay in the flat with us and the lounge had been turned into an impromptu bedroom for them.I was getting the room ready and went downstairs into the bedroom to grab some sheets where my girlfriend was watching a TV show, and as I grabbed the sheets I made a passing comment along the lines of “you’re not watching that crap are you?” and was very firmly told to: “shut up, I want to watch the program in peace before putting up with all the family.”
I stood there in stunned silence and we both paused for what felt like a long moment.I had overstepped the mark and cautiously apologised, realising there was something else going on. She sat and focused intensely on the screen and I could sense that she wanted to say something but perhaps was in shock at her own abrupt outburst, as if she didn’t know where it had come from.
With no acknowledgment from her I left the room and unfortunately that horrible air lingered without getting resolved. It made for a tense environment and once I had finished preparing the new bedroom I wanted to go and talk to her to clear the air. All of us were under pressure and the situation wasn’t easy. I desperately wanted to see what the real reason for the outburst was but felt I should give her space, it wasn’t long before my parents arrived and we hadn’t managed to speak.
The next day I had arranged for friends and family to have lunch near the hospital. I was told to have a big meal before going in as I wasn’t allowed to eat anything from then on.I coined the phrase ‘the last lunch’ for the meal. We had a table booked in a gourmet burger diner nearby which seemed like a nice and easy option. I sat at one end with my dad opposite me and two mates either side. My girlfriend’s sister had come too as she worked close by.
My mates were chatting with Dad about what they do and sharing their stories while my mum, sister and friends giggled at the other end of the table. This was the first time my parents had met my girlfriend’s sister so there was added excitement to the meal.
There were no toasts and no announcements made, we carried on as if everything was normal. It was so lovely to hear general chatting and laughing and no mention of the operation at all.
When we were done and it was time to leave we all hugged and said good bye. My family, girlfriend and two friends walked over to the hospital with me.
At the entrance to the doors of the lift, which would take me up to the ward, I said goodbye to my mum, sister, dad and mate Ben.
I turned to embrace them and tears were flooding as I hugged them individually.My sister rushed over and gave me a desperate hug whispering: “it’s ok, this had to happen to you as you are the strong one of the family and only one who will survive”.
It was an incredible, loving embrace that paused the surrounding mayhem and gloom for a moment. As we hugged with heads planted firmly on each other’s shoulders with eyes closed, the blackness offered some peace and calm.
I could feel the tears building behind my eyelids which were doing there best to act as dams, although the pressure was mounting to release the floodgates.
Ben came over and told me softly: “don’t cry, it’s OK” and gave me a kiss on the cheek as he hugged me.
My Mum couldn’t bring herself to come near me: “this isn’t goodbye’’ she forced through spluttering tears and a jittering jaw. Dad was quick, saying: “OK Guysee” before patting me on the arm smiling as he rushed back to Mum to offer some support.
There was no point dragging out the moment any further so I got into the lift with my girlfriend and my mate James, I was staring vacantly at the lift, eyes fixed on the space between me and the doors.As we went up I laughed and joked with them both saying: “I’m glad I am not in the taxi with them. Poor Ben!”.
We got out of the lift with our tears dried and went into the ward. The nurses greeted us and showed me to where I would be staying for the night. It was a room with four beds and the other three were already occupied by older gentlemen. It was an old room which, like all the other rooms in this building, needed a good coat of paint and some life brought into what is otherwise a depressing and sombre environment.
I settled down and took in my new surroundings. My girlfriend, James and I joked and laughed about things for a while, filling the time with what conversation we could muster. Occasionally a nurse would come over and check on us to see if I was settled in. Then came the time when James felt he should leave so Tiana and I could be alone for the last hour or so. I was perched on the side of the bed and stood up to embrace him.We hugged, patting each other twice on the back.“See you later” was all I could muster as he left.
Tiana and I hadn’t really spoken at all since the night before. There was a lot going on with people coming and going and the impending circumstances hadn’t left any time to clear the air.When we had spoken there was no substance to it, just simple offerings of help and discussing times of events to come.Even without the incident the night before, what do you say in that situation?
The distance between was palpable. I was putting some of my things away when she turned to me and in a soft, anxious voice asked: “are we ok?”
Not knowing how to respond I looked at her and said: “yeh… we’re fine,” and smiled to offer some reassurance. I meant it, we were ‘fine’ although I felt confused and disappointed and I wasn’t really sure how I was supposed to respond. I was perplexed by the timing of the question and then quickly realised she needed to know and feel at ease with ‘us’ before leaving.
There were two times for the operation the following day, either 7am or early afternoon.
I was hoping for the 7am slot. I didn’t want to wake up and hang around waiting all morning. This in turn would have meant people coming back to the hospital to be with me.The nurse came over and said I would be operated on first so they would wake me up at 5am to prepare. I felt a small bit of relief, it wasn’t much but seemed a great deal considering the situation. There would be no more waiting.
Then came the time for Tiana to leave so I could settle in for the evening with various physicians coming to see me. We kissed, hugged for a few moments taking a last breath close to each other and then she left saying she would call me at 6am to speak just before I went into surgery.
I brought my laptop, book, iPod and speaker with me but before I had the chance to open my laptop a nurse came over and asked some questions followed by another physician and then the anesthetist who discussed the drugs and went over everything again one last time.
They were all friendly and good to chat to. I always did my best to have a conversation with whoever I was with so it wasn’t just medical speak and scenarios. I wanted it to be personal and to relate to who I was talking with.The physician went over the procedure one final time and in mid conversation he smoothly asked “which valve would you like?”
Here was the question I had been pondering on for so long, causing so much torment and making everything seem more complicated than it needed to be; the moment had finally arrived.
With ease and some relief, I answered: “the tissue valve please.”
A momentary silence fell inside of me; a pleasant void of stillness filled me and I couldn’t hear what anyone was saying. I realised that I had said it and it was done.
Abruptly I was pulled out of this peace, as if by an angry alarm clock early in the morning, and back to reality by a document thrust towards me titled ‘Consent Form 1’. Together we read the document word by word going over everything it had to say. It detailed what was about to happen, who the physicians were, the associated risks and that I wouldn’t hold anyone responsible in the event of it going wrong.I am providing my consent.
Right above where I had to sign my name in handwritten words it said ‘Death, Stroke, DVT, Bleeding, Wound Injection, Arnthynium, Pacemaker, Blood Transfusion and other procedure.’
Smiling at these words I chose not to dwell on them and signed my life away.
For a moment I contemplated the document and I realised the full consequences of what could happen. It was written right in front of me and I signed.I never thought too much about all the other possible scenarios, just that I would either wake up or I wouldn’t. This scared me slightly, although I took reassurance from accepting whatever would come. The decision, the choice, had been made.
We carried on chatting for a few minutes and the physician made this casual off the cuff remark: “it’s a good thing you’re here, you wouldn’t have made it to Christmas”.It was said in such a quick way, in the middle of flowing conversation, that I almost didn’t register what he had said. I then realised how lucky I was, to be here at the hospital and not dead already. It was the 11th November.
When things had quietened down for the night and the three gentleman and I were alone in the room, we started talking to each other but there wasn’t too much to say, I got the usual ‘you’re young’ tossed my way like so many times before.
We discussed our operations; they were in for various procedures. The gentleman to my right paid particular attention to me and came over to my bed to speak to me. He was Asian, younger than the other two and slightly overweight.We had a good conversation, talking mostly about business, and he told me this was his fourth operation, having had kidney and liver operations already. He was now in for the last time to hopefully get rid of cancer which had continually spread. I admired his spirit, he came across as a seasoned pro of operations, what courage he had to be back again I felt.
I then thought of his family and remembered how sad they looked as they left. They too were going through this for the fourth time, would he be ok? Would he survive?Would the cancer finally be gone?I felt their pain for a moment as if I was a member of his family and saw it from the perspective of being on the other side of all this.Watching a loved one go through pain and torment, wanting to help but not being able to and saying goodbye whilst wondering if it would be for the last time.
I lay on my bed and rolled over to one side staring out of the window next to me onto a brick wall, doing my best to clear any thoughts.
I mediated briefly and drifted off into a much needed sleep.
“….she knew what was coming; the silent horror was written in front of me.”
I was partially awake when the nurse came over at five am to wake me.Feeling a little slow, I sat up and began to come round.
She came back a few moments later and took me to the nearest shower room where I sat on a plastic fold down chair that was stuck to the wall and she started to shave my chest; I didn’t have a hairy chest but you have to be squeaky clean for surgery. Once the chest has been ‘opened up’ in surgery any loose hairs pose a threat to getting lodged under the skin and causing infection.
As the nurse focused on my chest I could tell she was nervous, she didn’t look me in the eye once. Perhaps it was shaving a thirty-year-old’s chest instead of an eighty-year-old’s for a change. It was clear this was not a part of her job she liked and that she knew what was coming; the silent horror was written in front of me.
I was now in a hospital gown and went back to lie on my bed. I checked my bag and belongings were all together, ready in a bag to be collected, and placed the iPod and speaker at the end of the bed by my feet. I did this three times to be certain everything was ready.
I could hear my phone ringing and saw it was Tiana.
“Hey, morning,” I said.
In a hesitant, soft and distant voice she asked: “are you OK, what’s happening?”
“Not much,” I said, and I explained that I had been prepped and was now ready for surgery.
The conversation had more silence than words and lasted for thirty seconds at the most. I was tired, spaced out and didn’t want to drag it out. I had nothing further to say. Words seemed pointless at this stage. I was here and it was happening.
“Ok, speak later.” I said, finishing the call and going back to methodically checking that I had everything I needed.I was sure that I did but I checked again anyway as a form of distraction.I then sat on the edge of the bed looking out of the window at the wall, doing my best to meditate and keep a sense of stillness present.
The curtain was still drawn around my bed, and a nurse came over to open it and ask me a few more questions. The lights were soft and dim, adding a sense of solemnity to the mood, as if they could feel the atmosphere and had adjusted themselves accordingly.
The other gentlemen were also up by now and I gently greeted each of them good morning.
It wasn’t long before a young doctor dressed in surgery gear came bouncing over.Putting both his hands on the end of the bed and looking up at me he said: “Ready!” – it wasn’t so much a question as a statement, and the effervescent tone made me chuckle to myself as he and another nurse started to turn my bed and wheel me out as I lay there.
I passed my roommates and one by one they each nodded and said “good luck”, “all the best”, “see you later Guy”.There was a wonderful sense of camaraderie in the air, a mutual understanding of what each other was going through, which was comforting.
We went along the corridor and into a small and narrow lift which felt akin to the type you find in an old warehouse.I pointed out the iPod and speaker at the end of the bed to the young doctor and as I did so I noticed that he had a full sleeve tattoo, which I started to discuss with him.
I remember a curious look on his face as he smiled as if to say ‘you have no idea what’s about to happen and I’ll entertain your small talk.’
We got out of the lift and into the anesthetist’s room, which was very brightly lit in contrast to the low lighting of the ward and the old rickety lift.There were three people ready to welcome me; the lady I met previously who was my anesthetist, an older man and a younger man – neither of whom I knew.They introduced themselves and asked if I would mind if the younger man administered the drugs as he was a student in training.
“Yeah ok,” I said, and the student grinned at me and started to play with my left arm.
Meanwhile, I was talking with the older man and scanning the room, having a good look at the surroundings.There were notes stuck to the wall and various medical instruments on the shelves.
I carried on chatting to the doctor and it became clear that the student was struggling.
There were a few glances between the doctors as if to say ‘‘he should be out by now, what’s going on?’’ which gave it away. The anesthetist hurriedly came over, pushing the young student aside and taking over. I noticed another door to my left which would take me to the operating theatre. I carried on chatting with the older doctor and then, mid sentence, I was out.
“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.
‘The most amazing part was being operated on the Tuesday morning and four days later on Saturday afternoon I was at home; I still can’t believe this.’
The following day in the morning I was lying in bed wishing the time away for 14:00 until I could see my family when this big tall dreadlocked dude came over with a wheelchair and the biggest smile I had seen in a while. He bounced over with enthusiasm and said: “I’ve come to take you for some X-Rays, let me help you get in the wheelchair.”
I stood up with his support and got into the chair while he wrapped two blankets around my legs and one across my lap telling me: “it gets cold in the corridors and it’s quite a way.”
This was a refreshing thought; the ward felt like it was constantly at forty degrees and rising.
We set off down a labyrinth of corridors – the kind that only hospitals seem to have; an endless maze of shiny metal pipes covered the ceiling and jutted out at sharp angles without warning.There were arrows of all shapes and sizes pointing in various directions; words I’d never heard of were plastered across the walls in varying sizes, the lighting was dim and flashed on occasions. It reminded me of those movie scenes in underground bunkers and connecting tunnels.We went further down in a cargo style lift, deep into what felt like the belly of the hospital. I lost count of how many doors we passed through; codes were entered and cards were swiped to gain access to the next corridor.
I sat taking it all in and we got chatting.I mentioned what a nice smile he had and how all the doctors, nurses, carers, cleaners; everybody I had met was truly wonderful. I was in awe of them and very grateful for the attention I had received.
“You can’t come and work for the NHS without having a smile on your face, it’s part of the job to care for people and you need to turn up showing that,” he said in a confident manner.Naturally this brought a smile to my face and I thought to myself: “he’s got it”.
We carried on chatting and he explained his love of music and that he still goes searching to find ‘that record’; “it’s all about the hunt in vinyl shops!” he said.He then continued: “I used to go into Shoreditch in East London until it all moved on. The area has changed so much. I now go for weekend trips to Brighton with my partner to check the record stores out. There tends to be a good collection to be found”.
This was quite literally music to my ears and something I could relate to. The search for ‘that record, that tune, that next feeling’ is what it’s about.It was at this point he asked me what I did and I explained my passion for producing music and DJing.
“Ah! So I’m going to see you up there collecting your awards on TV then,” he exclaimed.
I smiled and acknowledged him, feeling just as assured.He was spreading joy with his own happiness which I felt deeply. After having my chest X-rayed he returned me back to my bed and I felt very positive about the future.
There was a moment in hospital where I took some time to reflect on everything. Half upright in my bed I sat in contemplation.A brief moment of calm and clarity came over me and I felt very safe and serene. The noise of my surroundings gentle quietened. No machines humming, nurses asking questions, the sound of shoes skidding along the vinyl floor down the hallway had all been silenced. Somehow I had switched these outside disturbances off and I was deeply in tune with myself. I felt the peace of having my eyes closed and an expansive presence spread through me. It was at this moment of silence two records came into my head as an audible experience:
They were from the playlist I had created and I was projected back into the operating theatre. I remembered a sensual experience; hearing them in the operation.
The time spent in hospital, the procedure and various incidents along the way were incredible and left me feeling awestruck.The most amazing part was being operated on the Tuesday morning and four days later on Saturday afternoon I was at home; I still can’t believe this.
“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.