A Diary

I spent much of the Thursday afternoon answering questions. I suppose this made a change from incessantly asking them. Now that they knew Marc had Strep A and his drugs had been altered accordingly, they wanted to know how he got it. This meant me attempting to deal with a barrage of queries about Marc’s habits and his routine over the past few weeks. I found it quite frustrating that my answers didn’t ever seem to satisfy the doctors and (to this day actually) we still don’t know how Marc picked up the bacteria.

The questions ranged from the fairly mundane to the downright bizarre. I was asked things such as ‘Has Marc been on holiday or a work trip anywhere recently? Where to?’ The answer to this was simple: our last holiday had been to Disneyland Paris three months earlier, so hardly exotic, and the only work trip he had taken was to London. But then they asked me if Marc injected drugs, if he had been swimming in open water, if he could have come into contact with anyone who could have had Strep A, and if he had any open sores or wounds on his body. Mostly the answers I gave were negative: Marc and I are fairly ordinary people, we don’t participate in any extreme sports which might have involved him swimming anywhere suspect, we don’t travel anywhere particularly exotic and the idea of us injecting drugs would have been laughable under any other circumstances.

A mystery

The nurses checked Marc for wounds or sores themselves and found that he did not have any. When I asked why, they told me they were trying to work out how the Strep A could have entered Marc’s body – it had to have been ingested or entered through the site of an open wound. The problem was, it had taken so long to work out what was wrong, that any cuts or sores he might have had on his body would probably have healed by the time they went looking for them. Apparently it would only have taken a small scratch for the body to be ‘open’ enough for the bacteria to get in, but this was only half of the question.

The other half was how on earth Marc had come into contact with the Strep A in the first place. Like I said, this was a mystery we never solved, which is quite scary to consider. Marc had done nothing out of the ordinary: our family life is quite predictable and unsurprising. I had to try and answer the questions without feeling insulted to be quite honest, as they implied things about Marc which I sometime found upsetting. But the doctors and nurses assured me that they had to ask, and that they were simply trying to work out where the infection had originated from. I don’t think we ever even got to the bottom of where it started: the stomach or the bowel.

Theories

There was also a theory at one point that Marc had perhaps been suffering from some kind of ordinary stomach bug which had masked the Strep A infection and worked as another red herring to lead medical staff away from a correct diagnosis. The sickness and diarrhoea he had been suffering from could have been caused by the Strep A infection, or something else, and perhaps only as he recovered from a stomach bug, did the underlying infection reveal itself. Either way, it’s a sobering thought to consider. Marc acted completely normally, did nothing out of the ordinary, nothing risky, and the bug managed to get into his system anyway.

In addition to all the questions from the doctors in ITU, I was also called to the phone to speak to the Public Health department. This was also pretty terrifying. All hospitals are required to report any instances of Streptococcus A occurring in their premises to this government department: that’s how serious the infection is. The man on the phone wanted to ask me all the same questions that the doctors had asked, and more frightening ones too. He asked about people Marc would have come into contact with since the illness had begun. Where had he been? Who had he seen?

Fear of contagion

This started a fresh terror in my mind, of whether the infection was contagious or not. Images of my fears that first night in the ITU waiting room crowded into my head again: could I have the same infection? Could the children? The man from Public Health said the staff at the hospital would print me out a checklist of symptoms, and that I had to keep a close eye on the entire family and anyone who Marc had been in contact with in the days leading up to the illness. If anyone of us showed the symptoms, particularly more than one, we were to come to the hospital or visit our GP immediately.

I was even asked about my children’s schools. I began to feel quite guilty: could we have put others at risk? Had we acted irresponsibly? These thoughts were quickly followed by anger. No – we had not. Marc had been living an entirely ordinary life when he had been attacked by the Strep A. I had acted just as anyone who had a very sick relative would, taking them to a doctor, to the hospital. Why would I have prevented the children from going to school? No one had hinted that we might all be infected or instructed me to do keep them at home. But all the questions left me feeling uneasy.

Just a precaution

I asked if I needed to inform the school, fearing some kind of nightmarish scenario whereby the infection could potentially have been passed on to hundreds of people through my children, but the man did not seem that concerned. I presume the questions were just a precaution to cover all eventualities. Still, I came off the phone feeling a little like a criminal. Worried that I hadn’t been able to give a satisfactory answer to the man’s questions, and that Marc’s illness might somehow have been our fault.

Looking at the list of symptoms, the main thing it seemed I needed to keep an eye on was if any of us had a temperature. My sister went immediately to buy me a proper thermometer, since I didn’t own one at the time. The only people who were considered to be at risk were myself, the children and Marc’s mum, since we were the only ones who had been in very close contact with Marc since the previous week. Luckily, his sickness had prevented him from going very far, so the only other people he had been near were anyone in the doctor’s surgery on the two occasions we had been, and other than the doctor, Marc hadn’t been particularly close to anyone in there. The most comforting thing, I suppose, was that if any of us did become ill, we would know instantly what it was and be able to treat it straight away.

A diary

As well as discovering the cause of Marc’s illness, that Thursday was the day that the ITU staff began his diary. This is something which a lot of ITU departments use to track the progress of patients who may be in ITU for a significant length of time. It is filled in by the medical staff to chart what is happening to a patient in terms of their treatment and recovery, but also by family and friends who are visiting. Once the diary was in operation, I wrote in it every day, mostly with very little to say. There was absolutely nothing happening in my life for those few months, other than taking care of the children and visiting Marc. Somehow though, I managed to scribble a paragraph each time, writing about what the children had been doing at school, as well as what kind of progress Marc was making. I was often grateful for the distraction during those lengthy visiting hours: at least it gave me something to do.

The idea of the diary is so that patients can come to terms with what has happened to them during their time in ITU, later on when they are well again. Often in Intensive Care patients are sedated, in pain and on many different drugs, so they are not aware at all of what is going on around them. The ITU environment is strange enough to someone who is fully conscious and understands where they are, but to Marc, unaware of where he was or how he got there, I think ITU was a pretty terrifying place at times. The diary can help to fill in missing periods of time and allow patients to understand what was happening to them during their stay, and has been proven to help patients deal with the trauma afterwards.

Survival by no means certain

Knowing that they didn’t start Marc’s diary until the Thursday is another indication of how very sick Marc was. Clearly upon Marc’s entrance to ITU, they didn’t feel it appropriate to start a diary as he wasn’t expected to survive for long enough to be able to read it. Despite what I had considered good news that day in the discovery of what was causing the infection, the medical entries for the diary those first few days state that Marc is ‘very sick, unstable and in multi organ failure’ and ‘still deteriorating despite increased support’. The first time we were asked to write in it was 30th June, several days later, so again, this reinforces the idea that until several days into Marc’s ITU stay, his survival was by no means certain.

The diary is quite factual. It states what is happening to Marc and what is being done to help him and is all written in second person, directed at Marc himself. ‘The decision was made to sedate you so that you are not aware’; ‘a tube has been inserted up your nose into your tummy so that we can keep your stomach empty and rest your gut’; ‘you developed a fast, irregular heart rhythm and this was treated with medication’. It makes for difficult reading: when getting it out just now (for the first time in months) to write about it, I actually burst into tears. I’m certainly happy that we weren’t having to read it at the time, but I’m glad that it was kept and that we have an accurate record of what was happening to Marc medically throughout his stay in ITU.

Hands I could trust

Aside from answering the many questions, the rest of Thursday was spent sitting by Marc’s bedside again and I was glad to go home to the children late afternoon / early evening. Marc’s nurse that day, Andrea, actually gave me a hug and told me to go home and ‘cuddle those children’. I really felt how much she (and so many of the ITU staff) empathised with my situation, perhaps imagining themselves in a similar position and not knowing how they themselves would have coped with it. I appreciated her concern and knew I was leaving Marc in hands I could trust.

I went home and took both mine and the children’s temperatures, which were normal. In fact, I spent the next fortnight taking the temperatures of everyone in the house, morning and night. In the end, none of us ever had anything like Strep A. That didn’t stop me having the added worry that one of the children might suddenly come down with it. The thought that Daniel or Amy might become ill too was just to difficult to bear.

Daisies

I don’t know to this day what made me ask such difficult questions of the doctors, I only know that once I realised that Marc was seriously ill, something inside of me kicked in and I had to know everything, as if my understanding more about Marc’s condition could save his life. On speaking to Linda about that day, I can now see how differently we were dealing with things; that she did not want to hear that her son was ‘unlikely to survive’ when I asked the question. She understood that I was attempting to cope with what was happening in whatever way I could, but found this difficult to hear. She was doing the same as me: just trying to cope with her son’s sudden illness in whatever way she could, it was just that she was doing it in a very different way. She says that while I went into ‘fighting mode’ and wanted to take action, her reaction was more of a spiritual one, to pray for help for Marc.

Soon after our conversation with the doctor, Marc was again taken down to surgery. We prepared ourselves for another lengthy wait to see whether he would make it through and what, if anything, the second operation would reveal. The wait during this second operation seemed more agonising if anything, I think perhaps because I was less tired, not suffering as much from the initial shock, and more aware of what was at stake. I had let myself relax a little after the first operation, thinking that the worst was over, so to be told the following morning that Marc had to undergo a second procedure was difficult to bear. I just kept imagining his weakened body having to withstand even more trauma, after all he had already managed to survive, and the thought made me feel physically sick.

So many people who cared

The entire family was there that day, aside from my sister at first, although she actually somehow managed to persuade her boss to let her out of work early and arrived sometime late morning while Marc was down in the operating theatre. Linda and Matt went to the hospital chapel for a while and once my mum left to collect Amy from nursery, my dad sat with me. I never visited the hospital chapel the entire time that Marc was ill, in fact it’s probably the one room in the hospital that I couldn’t locate, but I hugely appreciated its importance to Linda. Throughout Marc’s illness, I know that many people prayed for him, and I felt extremely thankful that there were so many people who cared enough to ask their God to help him.

I only recently talked to Linda a little more about her visits to the chapel. To my knowledge at the time, she only visited it once or twice, but I have since found out that she actually went there regularly, and it helped her a lot. There was a notice board in there where people could leave messages about the people they wanted others to pray for, and apparently by the time Marc had been in the hospital for a couple of weeks, the board was filled with her notes about him. This was her taking action to help her son survive. However, the first time she went there and discovered the board, there was actually a note on it about someone she knew. Her nephew’s wife’s brother had recently passed away at a fairly young age, and the message on the board related to him, saying that he had been ‘taken too soon’. I can well imagine how upsetting she found it to encounter a note which mourned the loss of someone she vaguely knew and who was not that far in age from her own son, at a time when he was himself so close to death.

Daisy chains

It was a stiflingly hot day and my dad and I ended up sitting on the grass just outside the main hospital entrance, where we were joined by Matt and Linda, and finally Janet. I remember picking daisies from the grass as we sat there, to try and pass the time. Our daughter Amy had been collecting flowers for me to make a daisy chain a few days earlier, before Marc became ill, and for some reason it stuck in my mind. I am not a person who believes in miracles or destiny, and I’m not at all religious, yet that day those daisies took on a significance I cannot explain. I ended up with two daisies in my pocket which I carried around for the rest of the day.

Somehow I began to believe that if only I could protect the daisies, keep them alive for the day, Marc would make it through the operation. As I type, it sounds ridiculous, but I suppose looking back I needed some kind of talisman to get me through what was happening. I know that my overriding feeling while Marc was in the operation was one of powerlessness, and from the way I incessantly asked questions of the nurses I can see now that my main reaction to Marc being ill was (like I said) one of wanting to be active. I needed always to feel like I was doing something useful, and by asking questions and investigating what was wrong with Marc, and also by taking care of those tiny, delicate flowers, I felt that I was doing something which could somehow help my husband. Perhaps I felt that the daisies were something that I actually had some influence over, something which I could control the outcome of. Either way, I would not let go of them for the rest of the day, and went to bed that night with them sitting on my bedside cabinet.

Good news

We spent a little time sitting outside and some more wandering the corridors. I couldn’t sit still for more than a few minutes, so we found ourselves back up in the waiting room after about an hour. We had only been sitting in there for a matter of minutes when a trolley was wheeled past and we realised that Marc was back from surgery. I went cold, thinking back to the advice I had been given the previous day about being reassured if someone was down in surgery for a long period of time. If Marc had only been in surgery for an hour, it couldn’t be good. Again, settling Marc back into ITU took ages, and I sat, horrified that whatever the news from the doctors was, it couldn’t be anything positive.

When they finally came through and called us into the Relatives’ Room, my heart was pounding. We were spoken to by the same male doctor who had talked to us before the operation, and I appreciated the continuity of it. He had talked us through what would happen at the start, had been there throughout the procedure and was still there at the end to let us know what had happened. Thankfully, we were told, the operation had only been short because when they had opened Marc up again, there was no further damage to his bowel, so they hadn’t needed to remove any more of it. This was good news, as Marc was still alive and, aside from having his abdomen opened up for a second time, he had not required any further surgery. I felt a huge sense of relief. That said, he was still in the exact same position he had been in the previous day, and no one knew what was wrong with him.

A breakthrough

But it was actually the Thursday when the doctors finally had a breakthrough. They called us into the ward and told us that the microbiology department had phoned down with some information. They had tested the fluid withdrawn from Marc’s stomach after the emergency CT scan in the early hours of Wednesday morning. The results showed that the fluid contained a bacteria called Streptococcus Group A, which was causing a severe infection.

I had never heard of Strep A at the time. It can apparently be pretty harmless if found on the surface of the skin or in the throat. In fact this was my only previous knowledge of Streptococcus, as I had heard of the American term ‘Strep throat’ for an illness which in Britain we might call ‘pharyngitis’. Also, the name of the throat soothing lozenges ‘Strepsils’. Anyway, though a Strep infection in your throat can be nasty, if the Strep A bacteria gets into an internal part of the body, such as the stomach or bowel (as they had with Marc) it becomes a much more serious illness. Also, it is rare for this to happen, so far more difficult to spot, which is why Marc’s symptoms had been so difficult to diagnose from the start.

Given the best care

I have often spent time thinking what might have happened if one of the first doctors who saw Marc had identified his infection. I am actually a strong believer that it is a waste of time looking back and regretting things, and daily we move forwards to make progress rather than looking back, but it was quite a difficult principle to apply in this case. Having said that, I don’t blame anyone. Clearly Strep A is incredibly difficult to spot, and the amount of doctors who saw Marc, as well as the number of tests he was given to investigate the cause, leave me in no doubt that he was given the best care. The important thing is that it was spotted, and that he was strong enough to hold on until they knew what was attacking his body and could take the right action to solve it.

So, on Thursday 26th June 2014, Marc’s illness was finally identified. He was given new antibiotics on the advice of the microbiology department (none of whom I ever met, but who were the critical department in solving the mystery) and I had fresh hope that he could actually pull through this, now the doctors knew what they were dealing with.

A Sense of Protection

I made it through to early morning with only one more phone call to ITU to reassure me. Janet stayed with me overnight, sleeping in the spare bedroom, and I was eternally grateful for her support. In taking the phone away from me she protected me from numerous other messages of concern and allowed me the relative peace I desperately needed. In total, I got around 4 or 5 hours of sleep in two separate sessions, the ITU phone call (again telling me there had been no change) sandwiched in the middle. By 6.30am, I was wide awake and ready again to be back at Marc’s side.

I must have made sure that the children were up, dressed, fed and ready for school. Or perhaps Janet did all this for me. I know she stayed as long as she could before leaving for work, and made sure that we didn’t need anything else before she went. I usually took the children to school on Thursday, so me being there was just normal routine for them, as though their dad had already left for work and it was an ordinary day. I’m not sure if I spoke to any of their teachers when I dropped them off. My memories of anything other than Marc at that point are fairly hazy.

Very understanding

I know that my mum and dad had already undertaken the process of informing the school of the situation. They had asked to speak to the headteacher on the morning of the first day that Marc was taken into Intensive Care, and had given her all the relevant information. She had been very understanding, and reassured them that the school would deal sensitively with both children and follow any guidelines we gave them about what the children had been told and what we were trying to protect them from. She told them of another child in school who had lost his father the previous year, and stated this as an example of the school being used to handling such events.

I suppose this was supposed to be comforting, but the thought that they might have to somehow support my children through the death of their father was more than I could cope with at that moment and I tried not to think about it. As an aside though, I do remember the staff at school being wonderful throughout the whole period, enquiring discreetly after Marc’s health whilst at all times maintaining a professional demeanor towards Daniel and Amy, who at the time had no idea just how ill their father was. It was reassuring to find, whenever I asked, that both children were showing no sign of being upset at school, even after several weeks of their dad’s lengthy stay in hospital.

Feeling increasingly guilty

After dropping them off, I headed straight for the hospital again. Mum and Dad met me there, somewhat rested but my mum still quite ill with a terrible sore throat and cough. I felt increasingly guilty over the coming days that my mum was more ill than I had known her to be in quite a while, yet was having to spend all her time running around between home and hospital, alternately comforting me and taking care of her grandchildren. But there was nothing I could do about it. I needed her more than I ever had in my entire life.

When I arrived, Marc’s brother Matt was already in the Intensive Care ward and Linda met us in the waiting room. I immediately headed in to see Marc and his brother, wanting to know how they both were. Matt had driven for more than 6 hours the previous day, only to be faced with the strange experience of ITU and an incredibly sick brother at the end of the lengthy journey. I couldn’t imagine that he was a in a great frame of mind.

A shared sense of shock and devastation

When I entered the ward and began to cross to Marc’s bed, which was towards the rear of Intensive Care, Matt must have spotted me, or perhaps he was already on his way out. I have an incredibly clear memory of meeting him halfway across the room, and him just hugging me right in the middle of the ward. I don’t think we spoke, not at first, and I was just really aware that he shared the same sense of shock and devastation that I myself felt: that we were in the same boat, desperately wanting Marc’s survival and recovery. I also felt a huge sense of protection, so that not only did I know that he shared and understood my feelings, he also wanted to be there for and support me as much as he possibly could.

We spent some time sitting by Marc’s bedside discussing what had happened to him and catching up on the moments that the other had spent with Marc the previous day. I must have greeted Marc in some way, spoken to him, but he was asleep, still in the coma, and again felt very removed from us under the Bair Hugger blanket. The nurse on duty that day was called Andrea. She spent a lot of time that day answering my many questions as I continued in my quest to learn everything about Marc’s treatment in an effort to arm myself against the tears that threatened to pour down my cheeks each time I thought about what was happening to my husband.

The red herring

Sometime mid morning we were asked to come into the Relatives Room again. This time a male doctor and the sister on duty joined us. I’m afraid I can’t remember the name of the sister that day. The update was given to a full room this time: myself, Marc’s mum, his brother and my mum and dad. The doctor began by saying that although the operation the day before had been successful in terms of the removal of the diseased part of Marc’s bowel (successful presumably because they had managed to remove it without killing him) they were still no nearer to finding out the cause of Marc’s illness. Without knowing what had happened to him, they were unable to be certain that the treatment they were giving to him would work.

Every doctor I spoke to kept harking back to what we now (un)affectionately call the ‘red herring’. On the previous Wednesday, just before returning from his work trip to London, Marc had eaten with some colleagues at an African restaurant close to Euston Station. He had eaten Jerk Chicken, which he said was delicious, but which  every doctor we saw seemed keen to blame the illness on. Since the very beginning, from our own GP to the first doctor we spoke to in A&E, each new physician was convinced that the African restaurant must have provided Marc with suspect food that had led to his gastroenteritis symptoms. The fact that he had contacted people he had eaten with in the days following his initial illness only to discover that there was nothing wrong with them, didn’t seem to register. I suppose that doctors are just looking for the most likely cause of an illness, and an unknown African restaurant must have seemed a likely candidate, but we had even spoken to a friend of Marc’s who had eaten the same dish, and he was absolutely fine.

The benefits outweigh the risks

The doctor concluded that they were going to have to operate on Marc for a second time. His actual words implied that under normal circumstances, there was no way they would operate on an extremely sick man twice in 48 hours, but in Marc’s case the benefits outweighed the risks, meaning that only by opening him up again would they be certain whether or not the bowel had sustained further damage overnight. Their fear, I suppose, was that whatever it was had been slowly eating away at Marc’s bowel all the time he had been ill, and might still be causing similar damage to it even as his body fought for life.

So we sat in the Relatives Room and were told that having survived the first emergency operation, Marc would now have to undergo another, despite still being incredibly sick. Unable to help myself, I continued to probe, asking questions I found out later were not as welcome to everyone’s ears. I asked the doctor what would happen if they discovered that more of Marc’s bowel was damaged. He replied that if a small amount was ischaemic, they would remove another section. I couldn’t let it go, and asked what would happen if a large additional section was damaged. I will never forget his answer.

If a large part of his bowel is affected, he will not survive.

Dazed and Confused

At some point my sister Janet arrived. I’m not sure when. I’m pretty certain she came straight from work, leaving her husband or in laws to collect her own children from school and nursery. We must have begun to let other people know what was happening, because I knew that Marc’s best friend (also called Mark) was on his way and his brother Matthew was still somewhere on the M1 or M6 driving the 250 miles between Brighton and Warrington. Most of that afternoon is a complete daze to me.

I was immersed in a world that was completely foreign to me, a place which was unnaturally cold, a sea of white sheets and blue curtains, only broken up by occasional flashes of maroon as the nurses and doctors whisked silently by in their scrubs. The sounds made by all the different machines were the hardest to adjust to though. ITU is never silent. Even at night, when the lights are dimmed and the patients are resting, there is always noise: the different pitches of the shrill alarms alerting staff to bags of drugs coming to an end; the rapid bleeping sound notifying that an IV needs to be swapped over; the rhythmic ‘darth vader’-style heavy-breathing sound of the ventilator. It’s hard to convey the multitude of alien sounds which assault the ears when you sit in ITU for any length of time. And I was hardly in the best frame of mind to deal with such a new and unfamiliar place.

Panicking

At first I spent quite a lot of time panicking when the nurses seemed to ignore some of the alarms. It often seemed that I was the only one to be paying attention when a rapid series of high pitched beeps echoed out across the ward. But I learned fairly quickly that most of the alarms only delivered information to staff so that they were aware of machines which needed attention, and that this attention did not necessarily have to be instant. When a patient really did need urgent emergency treatment, the alarms were urgent and the staff’s reaction immediate.

When Janet arrived, she must have come in to see Marc. I can’t remember at what point she came, but I know she was there for the remainder of the afternoon. She immediately assumed a caretaking role over me which I could only appreciate distantly, and I’m sure I wasn’t able to convey this to her at the time. She has a very natural instinct that kicks in when others are in need, and seemed to know instantly what to do to support me. She, unlike my parents and myself, had had the benefit of preparing herself mentally for what she might face at the hospital, and when she arrived she was able to take over from my parents and give them a break, as I’m certain they were completely wrung out worrying about Marc and the effect that his illness was having on me.

A lack of privacy

I finally made the call to Marc’s work. As I said, things begin to get a little hazy around about Wednesday, but I know I called Marc’s boss in the afternoon, and I presume that I didn’t leave it until the Thursday to call and let them know how bad Marc’s situation now was. I distinctly recall making the call, standing in the corridor of the hospital just outside the doors to ITU. I’m never one for making public phone calls, in fact I despise phoning people I don’t know, but there was really no place that was particularly private and I knew that this was a necessary call that I had to get over with.

I spoke to Marc’s boss Richard for the very first time. I don’t know what I said to him. Presumably I confirmed what he already knew (that Marc was in hospital) and went on to explain how ill he had become. I must have conveyed that Marc’s life was still very much in danger and I didn’t know what the outcome of his illness would be. I know I cried during the conversation, despite beginning the conversation calmly, and by the end of the phone call I’m not sure that I was able to get through a full sentence and have it make sense. I remember feeling embarrassed whilst at the same time being aware that me crying was perfectly acceptable in such a situation.

I know that I did a lot of lip biting and deep breathing in an effort to get the important points across without breaking down. I think just saying out loud what a poor condition Marc was in made it more real and therefore harder to deal with. Speaking the words out loud rather than simply typing them in a text was so much harder. It was strange, speaking to someone I had never met about such a personal crisis. Richard was very nice, extremely shocked, and reassured me that I should not concern myself with work at all, and just to keep him informed about Marc’s condition, as a friend and not as his manager.

Making practical arrangements

I didn’t need to contact my own work at that point, because I was working part time then and did not work on a Thursday, which was the next day. Still, friends and even vague acquaintances from work were sending me texts asking how Marc was, and offering all sorts of support. I did have a rehearsal planned for that night, for the play I was directing, The Hound of the Baskervilles. I sent a couple of texts out to my drama society’s secretary, who is also a very close friend, knowing that she would take care of cancelling the rehearsal for the ten cast members who would otherwise be showing up to a rehearsal with no-one to direct them. Practical things seemed so pointless at the time, but were nonetheless necessary.

Towards the early evening one of the nurses told me that Marc’s ‘levels were improving’. To tell the truth, I wasn’t sure at all what that meant, and the staff were still extremely cagey about how extremely sick Marc still was, but it did seem like he was doing better than he had previously been. They were constantly monitoring his temperature, blood pressure and heart rate, among other things, so I can only assume that these were all more stable. The sepsis he was suffering from had been causing his organs to start shutting down, but I am convinced that the dialysis, which was the only ‘new’ treatment he was being given since returning from the operation, had begun to take effect.

Blood poisoning

Sepsis is also known as blood poisoning, and now Marc was having his blood cleaned and purified by the dialysis machine, he really seemed to improve. It was as though the machine acting to give his kidneys a helping hand was just what Marc needed to give him a little extra help and allow his body a little room to recover. And by recover, I mean slightly. He was by no means better. But by 7.30pm, the nurses began to suggest that it might be alright for me to go home for a few hours. I don’t know whether this stemmed from them genuinely believing that Marc was improving, or the fact that they could see how exhausted I was, but by 8pm they had pretty much told me that I could go home if I wanted, and that they would call immediately should there be any change.

Linda had already left by this point. She remembers quite clearly that she was looking after a friend’s fish and became suddenly obsessed with the need to go and take care of them. Again, I think she felt the same as I did – that overwhelming urge to escape from the hospital, even for a few short hours. My mum and dad were also exhausted and at least one of them was at home with the children. Marc’s best friend Mark arrived. He was visibly floored when he went in to see Marc, the shock etched on his face. I suppose he hadn’t seen Marc going downhill gradually as I had, and looking at his best friend lying motionless and attached to so many drips and machines was incredibly upsetting for him. Nevertheless, he offered his support and said he would wait in the hospital until Matt, Marc’s brother, arrived. He was coming straight to the hospital and we didn’t want him to have to face seeing Marc alone. He was expected about 9.30pm, and the nurses had agreed to let him in to see Marc, knowing how far and for how long he had travelled to get there.

Conflicted

At 8.30pm I left Mark sitting with my Marc, waiting for Matt, and said my goodbyes for the night. I don’t remember if I kissed Marc. Probably not: I couldn’t get near him. He was also still in the coma, so looked like he was asleep. I told him goodbye, probably said something about me giving the children a cuddle from him, said that I would be back to see him in the morning, and left the ward. I had been awake since 2am the previous night: around about 19 hours, after only 4 hours sleep. I felt exhausted, dazed, confused, completely drained. I was so relieved to be leaving the confines of the hospital, but terrified at what might happen to Marc when I wasn’t there. In my hand I was clutching a piece of paper with two telephone numbers for ITU on it, having been reassured that I could call at any time.

I must have driven home. I know Janet came with me. Once we got there, my mum and dad must have left for their own house, after filling me in on the children’s day. They, of course, were fast asleep. I think Janet must have picked up some kind of food for us on the way home. I don’t remember eating it. I do remember getting into a pair of pyjamas and climbing into our bed. It felt incredibly surreal that I had leapt up out of this very bed less than 24 hours ago and raced to the hospital. So much had happened since then.

The most difficult thing was trying to reply to all the messages I had received, asking how Marc was. At that point, relatively few people knew that Marc was ill, (my own work, Marc’s work, people at my drama group, a few close friends) but even those few people sending texts meant I felt the need to reply. I started to cut and paste parts of texts, composing a general ‘update’ which would suffice to let most of the people who were concerned know how Marc was. Every minute that I sat on the edge of my bed sending text after text I felt more and more exhausted. In the end, Janet came and took the phone away from me, saying that I would never get any rest if I kept sending people messages all night, no matter how well meaning and supportive they were.

No change

The last thing I did before lying down was call ITU. The phone was answered and whoever answered it went off to call the nurse on duty for Marc. I found this very reassuring, and knew that if I was speaking to the actual nurse who was caring for Marc himself, I would be getting a realistic picture of his condition, unlike the previous night. Still, I dreaded the moment that the nurse came to the phone, terrified that she might say that Marc’s condition had worsened, or that he had just died. Ridiculous, as they had assured me that they would call the instant that anything important happened. To my immense relief, the nurse simply said that there was no change, which although meant no improvement, meant at least that Marc was no worse than he had been when I left him.

I took as much comfort from this as possible. My mind and body were completely exhausted and eventually, after much tossing and turning, my mind alert and ready for the phone to ring again, I managed to get some kind of sleep.