Chapter 6 : The Surgeon

“you know how you hear of young people just dropping dead? Well this is why!”

One day a letter arrived in the post from the hospital, I was getting used to these by now but this one was unlike any I’d had before.

As I read through the opening paragraph the words ‘bicuspid aortic valve with severely dilated left ventricle and regurgitation’ jump out the page at me. I carried on reading to see that a meeting with the surgeon would be ‘soon’. What did that mean? It didn’t make sense to me, what were they talking about and what did ‘soon’ mean?

The letter went on to mention that the size of my heart was a major factor in the decision to operate as it was now larger than what they considered to be a normal safe size.

I didn’t know how to come to terms with this information, I still didn’t really know what was going on. It was now obvious none of the tests had brought back good results and it became clear that it was a major problem.

The next day another letter arrived. I sat down and opened the envelope as if I was going through the same routine, although I felt nervous. What would this letter reveal after the shock of yesterday’s news. I started reading and found that a date was set to meet the surgeon to discuss options. It appeared ‘soon’ was in fact ‘very soon’.

I made my way to St. Bart’s Hospital in central London. It was an old building with big stone walls at its flanks and a courtyard in the centre adding to the grand feeling of the place. It was like an old relic of the British Empire standing tall and mighty in a fast moving and developing city.

Barts
Barts

I had been here once for an examination and as I had done so many times before at other hospitals I navigated through endless corridors to find the level, and then the room, that I need.

The waiting room had an old musky smell and feel to it. The decor didn’t seem to have changed since the sixties. The walls were a dull, pale brown. The seats were large with faded pink plastic covers and there were two large tall windows with a view straight out onto a wall. The air was thick with sad and bad news.

I settled in a seat hoping I wouldn’t be there for long and played on my phone. The room felt like the embodiment of depression, and I felt the occasional glance from the other people waiting. They were old and seemed inquisitive about why I was there, sitting on my own in the corner.

I didn’t wait long before I was called into a room where I was introduced to Dr Li and Nurse Emma.

The room was small and narrow with a bed on one side. It was in stark contrast to the grand exterior of the building. Dr Li was directly opposite me and Emma to my left as I sat down.

Dr Li introduced himself as the surgeon and quickly went into the results from all the tests, saying they needed to operate and remove my aortic valve as its was not working due to a defect, so open heart surgery needed to take place. He came across as a firm decisive man with a strong presence in the room.

He went on to briefly explain that I needed to make a decision on the type of operation they would perform. The valve could be replaced with either a mechanical titanium valve or a tissue valve. If I chose the mechanical valve I would need to be on a drug called Warfarin for the rest of my life and the valve would ‘outlast’ me, whereas if I decided on the tissue valve it was not certain how long it would last and so they would need to do the whole procedure again, facing the same decision further down the line.

The difference with a second open heart surgery operation is that I would be less likely to make it through due to the trauma. This all rolled off his tongue like he was reciting it for the thousandth time and it was all perfectly normal.

He then explained that Emma would be my one-on-one twenty-hour nurse throughout the process. I could call her at any time to ask questions. She would see me a few more times for various tests and help prepare for the operation. Despite the dominance of Dr Li in the room with his authoritarian knowledge, Emma added her own subtle presence which I felt strongly. She was a soft and gentle soul who sat patiently in the corner.

“Oh. Right OK…” was all that I managed to say.

He asked if I had any questions. In a confused and nervous state I said, “have you done this many times before?”

In a quick unfaltering way he chuckled to himself and told me he has been doing it for many years.

“There is lots of information about me and the procedures online. It would be best to check it all out and then come to a decision.” Pausing for a moment he continued; “we want to get you in in eight weeks’ time.”

This final sentence felt like he was putting an end to it and the matter had been dealt with. It was time to move on, ‘pack your bags and get on with it lad’.

The first thought I had was of my parents who I knew where arriving back from a holiday on that date so I naively asked, “can we move it?”

He gave me a surprised look. I could sense his disbelief at requesting the date be put back.

“How about the following week?” he said.

“Ok thanks,” and it was done, the date was set.

I asked if there is anything I should be doing or not doing. By now it seemed he felt the need to impress the seriousness of what was going on and calmly said, “you know how you hear of young people just dropping dead? Well this is why.” A sudden weight of air slammed down on me and it became very real.

I realised then I should stop riding my bike and do everything I could to help ease my heart on any level.

The meeting took no longer than fifteen minutes. It was quick and to the point which I appreciated, although shaken up by it. At last I had someone who was being upfront with me and had laid it bare in simple language; no covering up with medical terms or test results.

In a nutshell he explained, “your heart has had enough. It’s over stressed and we need to operate on you ASAP otherwise it will stop working, and that could be at any moment.”

I thanked them for their time and got up to leave in a haze. I walked down the corridor like I was gliding smoothly along, a few inches above the ground, sailing along on an air of uncertainty. People were moving around me and I was in the same space, although I felt like a distant shadow.

I unlocked my bike from the hospital railings and gently rode home.

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Chapter 8 : Questions

“He provided true care and attention when it was needed, for which I am eternally grateful.”

 

After dwelling on all this and researching as much as I could, I decided to arrange a meeting at the hospital to see the surgeon again and ask the many questions which had now come to me, so I called through to the department to get an appointment.

It wasn’t the easiest of calls to make as it appears the surgeons are kept at a distance from their patients. Getting past the receptionist took some time but she eventually agreed to my request and booked me in.

I was all set to see Dr Li to get as much information out of him and clear all the confusion I had (at least I hoped so).

I went back to St. Bart’s and waited in the same depressing room, although this time the decor and atmosphere didn’t bother me. I felt enthused to be here and get the answers I so dearly wanted.

I was called through to meet with Dr Hall who was the surgeon’s right hand man. He would be in the operating theatre working alongside the surgeon. I was fine with that, I just wanted to see a professional face to face and talk to them.

Dr Hall was younger than the surgeon and very open to all my questions, even the ones challenging the current medical view. He admired that I had come back to ask so much and felt it was the right thing to do, saying “it’s important you are as comfortable and as clear as possible, so if I can help in anyway, that’s good!”

My main concern was over Warfarin and what do they mean it’s a ‘blood thinning agent’? I wondered how this would affect the circulation of blood around the body and whether the organs may be slightly starved of blood. The idea of a getting a simple cut and being at risk of a haemorrhage horrified me, surely that was just lunacy!

Dr Hall went on to explain that blood goes through various stages before it starts to clot, these are detections the body has in place which need to occur in order to start the process. Warfarin prevents a few of these stages from happening thus slowing the clotting process but not stopping it entirely. It does not ‘thin the blood,’ that is just an expression that people use. There is no damage to other organs through taking Warfarin as the blood consistency remains the same.

I had written down a series of questions, what ifs and all possible scenarios that I could think of. How life might be afterwards and what options or limitations there would be for me. As we discussed the questions and went into more and more detail the doctor/patient relationship seemed to have blurred a little. It felt more like a discussion between two friends, one sharing his new found curiosity over a subject and the other providing knowledge and wisdom. We were like two old men sitting in their armchairs nattering away.

Without thinking I suddenly asked: “which valve would you take?”

I hadn’t written the question down and had never thought to ask but I immediately felt the need to reassure him that I would not hold it against him and understood if was not at liberty to say due to professional commitments.

Looking at me he gently smiled and said: “that’s OK. I suggest the mechanical valve to prevent going through the operation again. You are young and this is a major consideration. That’s what I would do”.

He went on to say that for the very elderly they suggest the tissue valve as they are likely to die before the valve wears out. This would give them a better way of life for however long they had left.

As the meeting came to a close I felt clearer in my understanding of the procedures and the positives and negatives of each. I felt relieved to have answers to all my questions and a few more I wasn’t expecting. If it came down to it I didn’t have to make my mind up until the night before the operation.

We had a wonderful flowing conversation which went on for about an hour and a half. I felt so much better for seeing him and I think he did too. I could sense he was open to my concerns and wanted to reassure me, not only because it was his job but also simply because he was a fellow human being. He provided true care and attention when it was needed, for which I am eternally grateful.

Chapter 9 : My Parents

“The shock on their faces was evident and I knew it would take time to digest.”

So far only my girlfriend and sister knew what had been going on. I had six weeks to decide on the operation, tell everyone and to prepare for an unknown outcome. What would life be like after the operation? Did I know what life I wanted after the operation? Would I even make it to the operation? Where did I begin with all this?

I knew the choice I would make would ultimately determine the life I would then go on to live and I wondered greatly what that would be.

Each procedure had a different set of answers and many other questions which is why it was such a hard decision to contemplate. It was also impossible for me to know the answers as, quite simply, I hadn’t had the operation yet. Everything was based on (assuming I survived) how life would be after the operation.

The first conundrum I faced was how to tell my parents.

I was on the train heading home to Devon from London and feeling lonesome, almost spacial. I kept thinking that people get older and you accept that things happen. They go into hospital and your parents come to you with life events ‘such and such isn’t well and will need an operation’ or ‘ such and such is struggling to walk so now needs constant care’. This was the other way round. How was I going to say to them that my heart was in really bad shape, that I had to make a decision on what operation I had, I may not survive and ultimately may not even make it to the operation date?

I didn’t go home much so my parents were inquisitive about the surprise visit when I got there. We started talking about the normal how things are and then my mother wanting to get to the real reason I was home said “so what’s going on?”

I broke down in tears as the emotion hit me. I curled up, leaning forward in the armchair and tried to speak but through the tears I spluttered a few words with short sharp breaths. The realisation of telling them had now taken over. They rushed to my side hugging me and offering comfort as loving parents. With a few steady breaths and a moment’s silence I composed myself and started to explain.

The shock on their faces was evident and I knew it would take time to digest.

It was an emotional day full of silence, contemplation and utter despondency. My parents were doing their best to remain strong and keep that brave parent face on when it was clear they were more fragile than I was. I could sense there were questions they wanted to ask but didn’t know how. I managed to get a bit out of Dad when Mum wasn’t there, although as soon as she was back in the room his Yorkshire front and closed Britishness came back over him.

We spent the weekend going over it all as I explained both procedures and the decision I had to make over the valve. I felt relieved to have told them and could now move onto the next thing. I was one stage further along in the preparation I thought.

Chapter 10 : The Email

“Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.”

I kept thinking I didn’t want to go through the same experience that I had with my parents every time I told someone about what was happening. It was emotionally draining and I could imagine it being the same; the looks on their faces, a silent pause while it sank in, followed by an awkward conversation. I couldn’t go through that every time.

When I got back to London I discussed the weekend and the despair I felt with my sister, and she suggested sending an email to everyone I wanted to explain things to.  It seemed like the perfect solution so I took some time and late one evening in my studio (I did a lot of music production and my studio had always been my sanctuary) I sat down and wrote the best email I could. I wanted to offer a clear explanation of what I was going through and what was going to happen so that everyone could come to their own understanding of it all in their own time and space.

Here’s a copy of the email I sent.  The subject line read simply :  ‘ :) ’

Yoooooo,

You’ll have to excuse the ‘generic-ness’ of this email but it’s the best way of emailing a bunch of people together to let you know of some news from me.

There’s no easy way of saying this, I have some serious issues with my heart and need to have surgery.

The medical term is a bicuspid aortic valve and servilely over dilated left ventricle.

In the heart there are 4 valves which pump blood from your lungs to the heart and then throughout to the body. On each of these valves there are cusps, think of flaps, which open and close to pump the blood.

You and like everybody else will have three cusps (tricuspid) on your aortic valve where as I have two (bicuspid).

This is something that about only 1% of the population have. It happened whilst ‘the process of life’ was going on in the womb and basically didn’t develop correctly.

As there are only two ‘flaps’ they have been working overtime to pump the blood around my body, they are now very weak so when they open/close they are not shutting properly to seal close and are in effect flapping backwards so blood is now re-entering the heart the wrong way, which is not good news. This means the heart is again working harder than normal to correct this, so whilst all this is going on the heart has increased in size (think of an overworked muscle getting bigger) to what is now a dangerous size. At least I have a big heart! :)

So the cycle goes on and on.

All this has come about after different tests and finally I saw the surgeon a few weeks ago who explain everything and the urgency to operate. I have known what’s going on but not quite how severe until seeing the surgeon.

As he pointed out, you know how you hear about young people just dropping dead, well this why. The heart will have a spasm and that’s it.

So this is where I am, the operation is on the 11/10 and ill be in  St Barts hospital in central (Farringdon)London.

I have done a lot of research and joined forums , checked blogs etc to speak with people who are in a similar way or have had the op etc. I do feel very knowledgeable and aware to all this, I feel a bit of an expert! ha ha

I have a few meetings with the hospital in between now and then and I have already been back to see the surgeon to quiz him on all my questions.

What’s left to decide now is I have two options for surgery. During this procedure they replace the whole valve not the just the cusps.

The choice I have is either a tissue valve or a mechanical valve replacement.

The tissue valve will be from either a pig/cow or human if available and the mechanical made from Titanium.

The titanium valve will ‘out last me’ which is good, although I need to take medication everyday for the rest of my life called Warfarin or another anticoagulant. The reason for this is the blood will form clots on the mechanical valve and for obvious reasons this is not good. They will either lodge there or break off and get stuck somewhere in the body which leads to strokes and other things.

Warfarin prevents the blood from clotting, the term they use is it ‘thins’ the blood. This way there are no clots to form.

This carries other issues as there are certain foods which you can’t eat, possible side effects and you have to change your life to a certain degree. As Warfarin prevents the blood from clotting ( basically stops the development of vitamin K) If I have a cut this could be an issue, bruises are three times bigger than normal, things like going to dentist are a problem and you can’t do anything that involves contact.

I would need regular visits to the hospital to have blood checks so the dose is constantly managed etc.

With the tissue valve I don’t need to take any medication after the post op tests etc.

The only thing with the tissue valve is they don’t last, somewhere between 15-20 years and then the process has to be repeated and the second heart surgery is riskier as you have already been through it so the body has scar tissue and will be going through the whole trauma again which is not recommended, again having to decide on a tissue or mechanical valve.

Having just turned 30 I am very young to be going through all this and to then have another open heart surgery in 15-20 years I still won’t be old! :)

Either way both options are huge life changing things to deal with and I have to make this choice.

As mentioned I have been on blogging sites and spoken with people who take warfarin etc as its not too uncommon.

I could go on and on, in a nutshell that’s it.

If you would like to go over any of this on the phone that’s fine as I am happy to speak about it, in fact I feel very calm.

I am really good and have had time to deal with this, to be honest I don’t think it’s sunk in yet, more the recovery its very long and I will need to be looked after for some time.

I’ll be in Barts Hospital from the 11/10 for a week to 10 days, depends how the body heals. If you do want to come to visit it would be great to see you, in terms of times etc that’ll be sussed out nearer the time.

From then i’ll be at home recovering, Tiana is going to look after me and then my parents. It looks like i’ll be away from work for approx. 3 months.

Whilst I am in hospital if you are looking for news etc Tiana can be contacted on……………….

I should have my mobile on me, not too sure how it will all go though.

I appreciate this will come as sudden news, I felt the best way to let you all know is via email as I can explain fully what’s going on and having this conversation face to face is not easy.

This way I hope you’ll have time to digest and get in contact with me if you feel you want to.

As mentioned I am more than happy to talk about this and the plans in place, if you have any questions etc etc.

Most importantly I am very thankful to have you all in my life and look forward to seeing you soon.

BIG LOVE

Guy

x

I pressed send and the email was done. As people started to contact me in response it was pointed out that the operation date I had stated was in a few days’ time rather than the month that it actually was. Clearly my head wasn’t in the right space so I sent a follow up email correcting the date to 11/11/13.

Chapter 12 : Country Walks

“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.

Secret woods
Secret woods

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.

Chapter 13 : Ghosts

“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 put even 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. 

Ghosts

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.

Chapter 14 : The Answer

I have decided to include an extra commentary on this chapter as I feel its 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.

Chapter 15 : The Request

“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.

The playlist is below and is called: Music for the Soul

Leftfield: Melt
Leftfield: Dusted
Massive Attack: Angel
Massive Attack: Teardrop
Leftfield: Chant of a Poorman
Leftfield: Inspection Check one
Leftfield: Song of Life
Leftfield: Phat Planet
Chemical Brothers: Saturate
Chemical Brothers: Setting Sun
Chemical Brothers: Galvanize
Chemical Brothers: Do it again
Mylo: Doctor Pressure Rmx
Kosheen: Hungry
Gossip: Heavy Cross
Gossip: Dimestore Diamond
Gorillaz: Dirty Harry
Timbaland: The way I are
Busta Rhymes: Turn it up
Busta Rhymes: Woo Haa! Got you all in check
Busta Rhymes: Gimme Some more
Timbaland: Oh Timbaland
Roni Size: Friends
Sia: Drink to get drunk RMX
Florence and the Machine: You’ve got the love (Mark Knight rmx)
Wolfgang Gartner: Menage A Trois
Wolfgang Gartner: Shrunken heads
Truegold: DAWN (test master) – This is a track I was producing at the time, which I never finished.
Leftfield: Storm 3000
Leftfield: Swords
Leftfield: 6/8 War
Leftfield: Rhinos Prayer
Mylo: Emotion 98.6
Bill Withers: Live at Carnegie Hall (Full album) (Best listened to on Spotify
Otis Redding: Love Man
Rage Against The Machine: Ghost Of Tom Joad

Chapter 16 : Twenty-Four Hours Before The Operation

“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. 

The Entrance
The Entrance

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.

Consent Form 1
Consent Form 1

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.

Chapter 17 : 11/12/13

“….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.