Fleeting Relief

Sometime mid-afternoon, we watched a trolley with a multitude of equipment being wheeled past the door of the ITU waiting room. Marc was being brought back from surgery, having been down there for between three and four hours. I felt a huge sense of relief: the possibility that he would not come back from the operation alive had never been far from my mind.

I seem to remember the waiting room being much busier by then. Certainly, the visiting hours of 1.30-4.30 were in full swing, and whilst on Intensive Care this does not imply the mad rush of visitors caused by the single-hour window in other wards, there were certainly more people around. I expected to be ushered in to see him straight away (how foolishly ignorant I was of the needs of Intensive Care patients at that point) but was instead simply told by one of the nurses that Marc had survived the operation and, once he was settled back into ITU and reattached to all the relevant machines, someone would come and speak to me. This process took over an hour. Necessary, but none the less agony for those of us sitting outside with no idea what the operation might have revealed to the consultant.

To this day, I marvel at what the medical profession are capable of. Marc was in a medically induced coma, with machines breathing for him, IVs with various antibiotics, anaesthetics and fluids attached to him. The staff had managed to make all of this mobile, transported him to an operating theatre somewhere else in the hospital, kept him attached to all the relevant drips throughout his abdomen being cut open and completed the journey in reverse, hooking him back up to all the relevant equipment once he returned to ITU. All whilst keeping a dangerously ill man alive. It’s no wonder that it took a while for them to settle him back into ITU.

An Update

Once they were ready, they asked us to come into the Relatives Room. This was another space, slightly smaller than the waiting room, on the other side of the hallway leading into ITU. I can’t exactly remember who was there at this point, probably just myself, Linda and my mum. I know my dad was taking care of the children and don’t think that my sister had arrived at that point. We were joined by Laura, the female doctor who had been so nice earlier on, and the current ward sister on duty in ITU, Rebecca.

They told us that the operation had revealed that part of Marc’s bowel was ischaemic. When the consultant had examined it, some of it was the wrong colour and did not look healthy. Basically, it was dying. The operation had not revealed the cause of the ischaemia, but the consultant had acted rapidly to remove the part of the bowel which was damaged to prevent it from spreading. We were told that Marc now had a stoma. (This is basically when the end of the intestine which has been cut is directed outside of the body and an external bag is attached to collect the waste product.) Looking back, this seems like a pretty shocking fact to have learned without warning. At the time, it hardly registered. All that mattered to the three women sitting in that room was that he had survived.

No closer to a solution

The fact remained though, that the removal of part of the bowel had not solved the problem of what was wrong with Marc. He was still very ill and the medical staff were no closer to working out how best to treat him. At first I had taken comfort in the fact that Marc had got through the operation, but the faces of the doctor and sister across from us told a different story. They told us that he was now back in Intensive Care, still very much in the same state he had been the previous night, if not a little worse due to the added trauma of the operation. They were continuing to monitor him and would see how he went on through the rest of the day and night.

The point at which I realised his chances of survival were still extremely low was when I asked if I could go home for a while, to get a little sleep and see the children. Their faces told me they still had no expectations of a positive outcome from the situation, and they both immediately said no, I should not go home. I instinctively knew from this that they didn’t want me to be away from Marc, as his condition could very easily worsen.

Stress and exhaustion

We were left in the Relatives Room for a little while to gather ourselves. Someone must have contacted my dad. I think my mum probably did. He had collected the children and all was well at home at least, but the stress and exhaustion was getting to me and all I wanted to do was leave. That sounds selfish to me now, writing it down. I should have wanted nothing but to stay with Marc and be there for him, but I honestly just wanted to get out of the hospital at that moment.

I went in to see Marc again. He looked much the same, except for the addition of a strange, thick blanket which seemed to be made of some kind of soft plastic tubes and a large new machine at the back of Marc’s bed. Laura had told me that Marc was now on dialysis, which was removing the blood from his body and cleaning it before placing it back inside. Dialysis was something I associated with people without kidneys, and I was concerned that his kidneys were damaged: another thing to be frightened about. At this point there was no telling what kind of state Marc would be in even if he did survive.

Shutting down

Laura explained that when a patient suffers from sepsis, as Marc was doing, their body begins to shut down, one organ at a time. The heart would be the last organ to give up, should the patient not survive. Marc’s lungs were being supported by the ventilator and his kidneys also now needed some help to keep on functioning properly. The staff had no way of knowing whether or not Marc’s kidneys would recover, and I began to wonder whether or not Marc would need constant dialysis for the rest of his life, should he ever make it out of the hospital.

Anyway the dialysis machine seemed huge, and Marc had tubes coming from either side of his neck (I suppose a little ‘Frankenstein’ in style, if I can look back with a touch of gallows humour). These tubes were literally carrying the blood out of one side of his neck, across to the machine, through it (while it did its magic) and then allowing it to flow back into his body via the tube at the other side. The dialysis machine is a truly amazing piece of machinery, and I firmly believe that this process, which helped to purify Marc’s blood and rid it of the poisoning caused by the sepsis, allowed Marc’s organs the time and space they needed to begin to recover.

Distant

The only thing I hated about the process was the blanket. It was called a ‘Bair Hugger’. (Though I prefer to spell it ‘bear hugger’.) Patients undergoing dialysis can get very cold, and the blanket helps to retain the body’s temperature whilst the process is going on. I found the name of the blanket comforting, and it clearly helped to keep Marc warm and alive, but what it did was reinforce to me how distant my husband was from me. I was told I could hold his hand whilst he was under the blanket, but it was difficult to find, what with all the thickness of the blanket and the multitude of tubes and cables running in and out of Marc’s body and around the bed. Also, I was terrified that if I moved him at all, I might dislodge one of the tubes and potentially kill him.

This sounds extremely melodramatic, but at the time he was in such a poor state that I believed it would not take much to send him over the edge, so when I did hold his hand during those first few days it was extremely gingerly and with great trepidation. I met the two nurses who had taken over Marc’s care that morning, and who I had met during the briefing with the consultant that morning. I remember one of them was called Amy, as she has the same name as our daughter. The fact that Marc had two nurses assigned to him was significant. It was yet another demonstration of how sick he was.

Asking questions

I must have driven them mad asking constant questions. As I have previously said, I didn’t cry much during those first few days (although I know I did sit by his bedside and cry at least a little that day) but I think I distracted myself by asking every question I could possibly think of about Marc’s care. I wanted to know about every tube, every machine, every IV solution that was being pumped into his body. The nurses were brilliant, and clearly understood that I needed to know, in order to be able to cope with what was happening. They patiently answered all my questions and allayed my fears about the constant noises made by all the different machines.

But they refused to say that Marc’s condition was stable and avoided any of my attempts to get reassurance that it was looking like he was going to be ok. It would not have been responsible for them to do so, as he was still so very ill. And so I sat, for most of the afternoon, not able to go home and see the children or sleep, waiting again to see what would happen next.

Operation Endurance

After that it was just a case of waiting for them to take Marc to surgery. I say ‘just a case’, but in reality those hours spent waiting for something to happen were agony. We had very little to occupy our minds, other than frightening thoughts about what might happen to him. At this point, my memories of what happened begin to become a little mixed up, so where up until now I have been quite clear on the order that things happened, from this point on I may be less so.

My mum arrived at the hospital after taking the children to school. It must have been around 9.45. We filled her in on what had been happening. I think she went into ‘looking after everyone’ mode and probably offered to go and fetch tea from the Costa coffee shop in the entrance to the hospital. Possibly I went with her. I knew I couldn’t spend all day sitting in that awful waiting room, sweating and worrying and feeling sick.

Nowhere to go

There are very few places to go in a hospital. Despite Warrington hospital being fairly large, many of the places, such as wards and operating theatres, consulting rooms and offices, are out of bounds for obvious reasons. When I was in the hospital waiting for my daughter (who was thirteen days overdue) to be born, I remember walking up and down the same corridors, unable to leave as I had been given a drug to induce the birth, but feeling incredibly frustrated that there was nowhere to escape from the clinical surroundings while I waited for Amy to make an appearance. And that was a happy time, as we prepared to welcome our second child into the world. This was an entirely different kind of waiting.

Not that I am critical of the hospital at all. It has a function, and a vital one, and all of the relevant spaces and equipment are in place to save lives and improve people’s health. It does even have some spaces, a garden with sculptures of animals and a small ‘playground’ type area, which try to be peaceful and create some kind of escape from the hell that a hospital can be for those trapped within it, either as patient or relative. In reality though, nothing can distract from a traumatic situation, no matter how pretty the surroundings. We walked to the entrance where the hospital shops and cafes are. We wandered a maze of different corridors and walked outside the hospital a little, around the edges of the carpark. I think Linda went to the chapel at some point: there is a small one somewhere inside the hospital. But ultimately there is nowhere which takes away the intense feeling of being trapped, because there is no way of escaping when you are waiting for potentially life-changing news. Perhaps the real trap is inside your head.

Someone must have contacted Marc’s brother. I know it wasn’t me. It must have been Linda, his mum. He lives in Brighton, which is a good five hour drive from the North West, but I was told that he had dropped everything and was in his trusty van on the way up. I cannot imagine the journey was a pleasant one for him, wondering if Marc would still be with us by the time he got here. My sister must have been told too, presumably by my parents. Again, other than informing those closest to the situation, the people I had needed to get me through the night, I hadn’t been capable of much more. I found myself feeling intensely glad that someone else had taken care of this for me. My sister was in work, but planned to come in later, and she did arrive sometime in the afternoon, having left work early with the permission of her very understanding boss. She took over from my parents in terms of ‘looking after’ me later on, as mum and dad must have been as exhausted as me, having been up all night too.

Visiting Hours

The waiting room, having been completely deserted up until this point, began to house some other visitors at some point. Being as traumatised as I was, I hadn’t really had the chance to rationalise that there were other patients in ITU, and that, like any other ward, ITU had visiting hours. Now hospital visiting hours can be very difficult things to navigate. Most surgical or general wards have only a couple of hours available for visiting: one in the afternoon and another in the evening. This can make visiting quite tricky, as the time is so limited. Because patients in ITU are usually very seriously ill, their visiting hours are much longer, to allow more people more choice over visiting times.

One of the sisters told me later that most of the ITU patients can’t cope with long visits because they are so sick. The hours, she said, are set to make it as easy as possible for family and friends to have access to visiting, but that there was no expectation that there would always be a visitor by the patient’s bedside during visiting hours. That said, once we were visiting Marc regularly in ITU we did feel an intense pressure (probably self imposed) that we weren’t being as supportive as we could be unless there was someone there constantly. I know that Marc’s mum and I always tried to make sure that one of us was there in the afternoon and the other in the evening, but this in itself became extremely stressful at times.

The ITU visiting hours are 1.30pm – 4.30pm and 6 – 8pm. The same sister who told me about the visiting expectations also told me that actually, if a patient was sick enough, the visiting hours could be completely relaxed and family could visit at whatever hour they needed to. And, having sat in the ITU waiting room all night, I realised that the families of patients who the staff feared would not survive for much longer could spend all day every day in ITU if they wanted to.

An intrusion

A group of three women came into the waiting room at some point mid-morning. This was outside of visiting hours (although I didn’t realise it at the time). They settled themselves in the waiting room and began to take turns going into the ward (the limit of two to a bedside meant they had to alternate, as we had done with Marc) always leaving one in the waiting room with us. At first I found this quite distressing. At least earlier, when we were alone, we had not had to consider the fact that we were on show to others and worry what their reactions might be. Why I cared what other people thought of me at such a time I have no idea – I’m not sure I would any more. But then, it seemed like they were intruding on our trauma and our potential grief.

At first, we didn’t speak to them at all. We just tried to smile in way of a greeting and stayed at opposite ends of the waiting room to allow each other some privacy. Eventually I realised that they were in a very similar situation to us: their dad was in ITU and had been for weeks, and now they had been called and told he had become extremely ill. The staff were basically not expecting him to survive, and his family were determined to be there for him at the end. I did not discover all of this until much later, but the women were actually present in the ITU waiting room for days to come, so we got to know them quite well: they were kindred spirits to us in the end.

Unthinkable

But back to Marc. Eventually, he was taken down for the operation on a trolley, hooked up to all the machines, drips and a ventilator being wheeled along beside him by the plethora of medical experts who were going with him into the operating theatre. I had no idea what to expect. No idea whether he would be coming back from the operation or not. I was told by someone medical that the longer he was down there, the better. This was because if they opened him up and found something disastrous was wrong and they could do little about it, they would just sew him up again and bring him back very quickly. So when he was gone for over three hours, I tried to take a little comfort. But the waiting was horrendous.

And all the time we still had to consider the practical things. Amy was only in nursery at the time, not full time school, so my dad offered to go and pick her up at 11.30am, when she was finished. He would take her home and look after her, and then collect Daniel at 3pm when he finished school. I don’t know what I would have done if he hadn’t been able to do that for me, as the idea of leaving the hospital to collect her while Marc was in surgery was unthinkable. My dad left with no idea of how Marc was, and myself, my mum and Linda waited behind with nothing else to do but wander the hospital corridors and worry.

Breaking Dawn

I don’t remember much about the rest of the night. We sat alternately with Marc and in the waiting room. When I was in with him, I had no idea what to do. There were nurses flitting around the almost silent ward throughout the night, and those assigned to Marc attended to him regularly, administering drugs and drips and making regular checks on his levels, which didn’t show any signs of improvement. I felt useless in comparison.

I seem to have more memories of the waiting room. Once the doctors had induced the coma and my dad and Linda arrived, we all went in to see Marc in turn. After that, it must have been early morning. There was nothing else we could do until the consultant came in to see Marc and made a decision about what to do next. My thoughts turned to Marc’s work, and I began to realise that I would need to contact them at some point. As they were already aware that he was in hospital and were not expecting him in work that day, I decided that I could get away with waiting until later before I tried to call someone, when perhaps I would have something more to tell them.

Invasion of privacy

I had Marc’s phone, which was weird in itself. I didn’t want to go through it – it felt like a strange invasion of his privacy – but began the process of trying to work out who I might contact at the BBC. Marc is a computer programmer, and had started a job with the BBC at Media City in Salford around a year and a half before he became ill. Since the job was relatively new and I hadn’t really attended any work events with him, I was a little unsure of who to call. Knowing his boss’ first name for certain, I began to trawl through the contacts in his phone, and eventually worked out by a process of elimination (possibly also checking Facebook to make sure) which person I would need to call. I wasn’t looking forward to my first conversation with Marc’s boss being one with such shocking content, and felt relieved to be able to put it off for the time being.

I must have checked my own email and ascertained at some point around 7am that my own work had received the messages I had sent in the middle of the night. The replies I received were full of concern and the first experience I had of dealing with the reactions of others to our situation. No one knew quite what to say, and it was evident that all those who heard the news were in a complete state of shock. Talking to people now, they all remember that particular day and the surprise with which they responded to my messages. There was also a fair amount of disbelief that I had spent part of my night in hospital actually planning work for my classes!

Life-or-death situations

I don’t recall anything else other than standing in the corridor outside ITU feeling surprised that the sun had come up and the night was over. We must have tried to eat at some point. I definitely remember a lovely tea-tray containing a white teapot with red flowers, a set of pretty tea cups and some toast which one of the nurses brought us. These were clearly saved for traumatic situations where there was a life-or-death situation involved. I don’t remember seeing them again after that first night, though I became extremely used to the taste of the ITU waiting room’s machine-made beverages.

We were told at around 8.45am that the consultant was in the hospital, but that he would need some time to see Marc and get up to date with his records before he made any decisions and came to speak to us. It was agonising sitting there, knowing that the only person who had any say in Marc’s treatment was in the building but not yet ready to speak to us. We had arranged for my mum to take the children to school, and she also had the responsibility of letting them know why Mummy and Daddy were both absent. I must have spoken to her at some point, because I know she asked what I wanted the children to be told. All I remember is feeling very strongly that things needed to be kept as normal as possible for them.

Continuing as normal

In the end my mum simply told them that Mummy was with Daddy in hospital as he had become a bit more poorly during the night, but that she would be home to see them later. This they accepted without question, perfectly happy that it was the truth. I felt better that they were not concerned, although it seemed odd that life was continuing as normal for them while such traumatic events were taking place.

Thankfully my parents have cared for them one day a week since they were very young, so having mum there was a fairly normal occurrence for them, which helped. It wasn’t usually only my mum looking after them though (my parents tend to come as a pair and do most things together), and I wonder to this day whether something instinctive told them to continue as normal and not to make a fuss. They were both angelic over those first few weeks of Marc’s illness, as though they somehow understood that Mummy couldn’t have coped if they had played up or behaved badly at all.

Overwhelmed

At 9.30am we were gathered in the waiting room of ITU and a large group of people came in to speak to us. I remember being quite overwhelmed by how many medical personnel entered the previously empty room at once, and wondered why they were all there. The consultant did most of the talking. He was dressed in a suit, and was an older, serious-looking man. He explained that he was going to operate on Marc in order to have a look inside his abdomen and see if he could shed any light on what was making him so ill, since all of the other tests done so far had been inconclusive. He had brought all of the other people into the room to introduce his medical team to us, I suppose to reassure us that he would have the support of a large number of experienced medical staff while he operated on Marc.

There were several nurses, at least two of whom were from ITU. He explained that they would be in charge of ensuring that Marc got to the operating theatre from ITU and back safely, as well as caring for him for the remainder of the day. There must have been other nurses, specific theatre nurses, but I don’t really remember them. There was an anaesthetist, who introduced himself, and at least one other doctor who was called Laura, a woman who for some reason reminded me very much of a friend of mine and was extremely approachable. She looked around my own age, and throughout Marc’s stay in hospital she made a huge effort to fill me in and ensure that I was kept up to date with Marc’s progress at all times, which I was extremely grateful for.

Running out of time

Suffice to say I listened to their explanation of what was going to happen in the operating theatre. I don’t think I asked any questions, although I’m certain I was asked if I had any. I don’t think I was capable of much more than making sure I understood the information they were giving me. The operation sounds fairly vague to me writing about it now, and I suppose it was. The staff had little other choice other than to cut Marc open to see what might be the matter with him, as all other methods of investigation had proved useless up to now, and he was running out of time. I accepted what they were suggesting without argument, grateful that there was something to do other than wait for him to die of whatever infection was invading his body. The large group of medical staff left the room full of sympathetic looks, which told me that they were not at all certain of what the outcome of the investigative operation would be.

As they left, the sister from the ITU who had taken over from Lesley when the morning shift had started at 8am (I cannot for the life of me remember what her name was) squeezed my arm reassuringly. She then said something along the lines of, “He’s the best. If I had to have someone operating on me, I’d want him.”

I tried to take as much comfort as I could from the fact that the consultant who was about to cut Marc open, for better or for worse, was clearly well respected by his colleagues.

An Alien Place

At some point later, Marc arrived up in ITU on a trolley. I saw them wheeling him past the waiting room door and taking him into the Intensive Care ward. I think maybe Claire came back in to speak to me briefly, but there was nothing much else to say apart from to repeat that Marc needed to be ‘settled in’ to ITU, and this, apparently, would take a while. At some point (I can’t recall when) I was told that the scan had shown nothing other than some fluid in the stomach which, although notable, did not reveal the mysterious cause of the illness. This meant that Marc was still struggling on with no concrete diagnosis and therefore no further ideas for how to deal with whatever was attacking his body.

Deteriorating fast

Eventually Lesley came out to speak to me again in the waiting room. Before I went into ITU, she updated on Marc’s condition. She told me that, since I had last seen him, his condition had deteriorated and that he was ‘really struggling’. The doctors had made a decision to put him into a medically induced coma, which they believed would help to give his body some respite, as it had now been struggling against the infection for several hours.

This, she explained, meant that he would have a tube inserted in his throat and be attached to a ventilator which would breathe for him, in addition to being sedated so that he would appear as though asleep. I’m not sure if I was given a choice about this – I don’t remember signing anything to give my permission – but again I was certain that the staff at the hospital were not taking this decision lightly, and would only do this if they felt it might help Marc.

Lesley explained that I could come in to see him before they put him under. It struck me that I was being brought in to see him whilst he was still awake in case once they induced the coma, he didn’t actually wake up again. This was an extremely frightening thought. She didn’t sound at all hopeful about Marc’s chances. With this in my mind, I was led in to see him, wondering what on earth I was supposed to say.

The sickest person in the hospital

When I entered the ward for the first time, I don’t think I took it in properly. I was far more concerned with seeing Marc than focusing on my surroundings, but suffice to say for now that ITU feels like a very alien place when you first enter. Marc had been placed in a bed to the immediate right of the nurses’ station. At the time this meant nothing, but later I realised that he was placed there because he was so very ill. The sickest people need to be within the closest reach of the medical staff. I was told several times over the coming days that Marc was by far the sickest person in the entire hospital.

When I reached his bed he was conscious, just, but extremely disorientated and I’m not sure that he knew who I was, or even that I was there. I don’t think I was allowed to stay with him for long. He was very distressed and clearly in a lot of pain, almost raving. It was difficult to see him like that. You know in the films, when people are brought to the bedside of their loved ones before death and say the most poignant and beautiful things before the person’s time comes? When all the loose ends get tied up and everyone gets to make confessions and say those things they always meant to say but never got around to? Those kind of scenes?

Well they’re absolute rubbish.

Last words

If Marc had died that night, our last words would have been ones of confusion and agony. Our last memories, ones of pain and suffering. The last words he said to me before I left? I don’t want to type them. He swore, which he doesn’t do very often, suggesting that words to describe his pain were difficult to grasp. I probably stammered that I loved him and would see him soon, once he was better, believing these sentiments less and less with every second that passed but not knowing what else to say. And I was escorted back out of the ward with what could so easily have been his final words ringing in my ears. Not ‘I love you’ or ‘My darling’. Not ‘I’m so happy to have spent thirteen years of my life with you’ or ‘tell the children I love them’, but an expletive which left me in no doubt about the amount of pain he was in.

I was escorted back out to the waiting room by a different nurse. For a long time I did not remember meeting anyone else that night other than Lesley, but there was a nurse on duty who escorted me back and forth between Marc’s bed and that waiting room several times that night. I found out weeks later that she was called Regi and she remembered me very well, but when she looked after Marc on her shift weeks later I introduced myself to her, as I believed that we had never met. It’s funny what the brain does – some people I remembered perfectly from that night, whilst my mind could clearly not cope with recalling the names or faces of others who played just as important a part in saving Marc’s life.

What will I do without him?

I sat for another agonising period of time in the waiting room. My dad and Marc’s mum Linda arrived at some point, and I filled them in on what had happened, painfully aware that if Marc did not survive the induction of the coma, his mum would never get to speak to him again. We were all in shock. I didn’t cry often during those first few days in the hospital. I have no idea why. Something must have kept me going: crying wasn’t going to help anyone, so it wasn’t really an option. I also think that when you are in shock, tears are not necessarily your first response. But I do know that in that stupid waiting room, after I had told my dad and Linda what was happening to Marc, and she had gone in to sit with him, I broke down on my dad and asked, ‘What will I do without him?’

This is the one time I ever recall admitting that he might die.

A horrendous call to make

And Dad told me that, while there was still a chance of him living, I had to stay positive and believe that he would be alright. So I did my best to pull myself together and carry on. I went in to see Marc again. This time he was asleep, and at least looked more peaceful than he previously had when awake, which was a relief in one way, but the thought that I might never get to hear his voice again was always in the back of my mind. I found out later that it was touch and go whether the act of inducing the coma in itself would kill him, but they felt that if they hadn’t induced the coma he would have died anyway. Doctors have to make some horrendous calls sometimes, and this has to have been one of them. I can only thank them profusely for having the courage to make the decision to induce the coma. I am certain that it helped him to survive those vital few hours through the night.

Lesley said that it was just a case now of (you guessed it) waiting. Waiting until the consultant came on duty in the morning, when he would make a decision about what was best for Marc, which might involve an operation. Hospitals are staffed by excellent general doctors during twilight hours, and have consultants on call, but to my knowledge consultants and surgeons don’t generally work nights. The doctors on ITU had spoken to the consultant and taken advice, and he was due in at 9am. Until then, all they could do was keep Marc comfortable and hope that inducing the coma would allow his body to keep fighting.