The Real Heroes

On Monday 30th June Marc was trialled off the dialysis for a second time. This time, his levels held, and it was decided that his kidney function had improved enough to get rid of the dialysis machine. In other words, his kidneys had recovered sufficiently to mean they didn’t need support any more. This was a massive relief, and felt like a real step forward for Marc. I suppose in terms of all the organs which had been ‘broken’ or were functioning at less than 100%, his kidneys were the first to bounce back. And by ‘bounce back’ I mean they took several days to recover enough to be capable of sustaining themselves.

The dialysis machine remained behind his bed for several days, in case he went backwards. The staff in ITU were taking no chances. But thankfully Marc never had to be put on it again. The bloods he was having taken regularly clearly showed that his kidneys were doing enough on their own to keep him going, and eventually I came to visit one afternoon and the great hulking machine which had sat like a giant shadow behind him for so long was gone. So was the persistent alarm which went off every time the machine needed attending to. I didn’t miss that.

Another breakthrough

In addition to this, around the same time he came off dialysis, there was another breakthrough. It didn’t seem like it at the time, in fact I really didn’t understand the significance of what happened, but looking back it was a vital step in his treatment. Marc had a nurse called Craig on this particular day, who is a quiet, unassuming man. He was always lovely, answering any of the questions we had, but otherwise simply got on with the job of caring for Marc in an efficient, unobtrusive manner. You would barely have known that he was there.

I spent a lot of time checking with the ITU staff whether or not I was in the way, and always got the same answer: no. I never had a nurse in the entire 45 day period that Marc spent in ITU make me feel like I was causing a problem. I was told by several nurses that their job was to be there for me as well as for Marc, and to begin with I thought it was just something they said. After several weeks of feeling like I lived there though, I can tell you that the statement is utterly true. Despite attending to Marc’s many, almost constant needs (especially during the early days when he needed constant attention) they always found the time to answer my questions and ask how I was doing.

Detailed updates

An ITU nurse understands how difficult it is for a relative to be away from their loved one overnight, for a day or even sometimes an entire weekend, and expects to give an update, as detailed as is requested, to that relative when they next visit. They are equally good with phonecalls. Whereas when I had phoned the general ward I had not managed to reach anyone who could tell me anything particularly helpful, on ITU if they can put you on to the nurse in charge of your relative when you call, they will. And I phoned them every night for the first few weeks that Marc was in hospital. In fact I couldn’t go to sleep without having phoned to be told that Marc’s condition remained the same and, yes, he was still with us.

Most of those nurses ended up knowing Linda and I very well. We were there so often, and they had all experienced caring for Marc at some point during their shifts over those 45 days, that when I saw them they greeted me warmly and  most of them understood the level of detail I needed to know about Marc’s condition before I could settle down next to him for my visit. Craig was just as good as the rest, and he worked quietly for my entire visit, checking drips, changing bags over, rolling Marc on to his side and back, checking his vital signs regularly and also answering any queries I had.

Significant praise

At around 7.40pm, near to the end of his shift, and also the end of evening visiting, Rebecca (the ward sister that evening) came over to speak to him. I remember her being extremely complimentary of the job Craig had done that day and, despite my general agreement with her, I wondered why she was giving such significant praise on this particular occasion. When I asked her, she replied that he had managed to massively reduce the drugs that Marc was on for his blood pressure throughout the day. Marc had been on drugs called inotropes to increase his blood pressure since the night when I had been called into the hospital at 2am. By this time he had been on them for almost five days. He was on three different types of drug, all at high doses.

The inotropes were the drugs that were causing the problem with Marc’s feet, depriving them of blood so they could redirect the blood to the vital organs and keep him alive. As Marc’s organs began to slowly recover, his blood pressure had stabilised somewhat, and now the nurses were able to reduce the amount of inotropes that Marc was being given. But this had to be done gradually. Slowly enough, while keeping a close eye on Marc’s blood pressure, to ensure that his body didn’t react badly again and further worsen his fragile state of health.

And Craig had done it. Throughout the day, while Linda had visited in the afternoon and I had visited in the evening, Craig had been working away, reducing the drugs little by little. Until from high doses of three different drugs, Marc was now only on one, and a far smaller dose. Rebecca sounded impressed, relieved, thankful. I didn’t understand why at the time. But if the levels of these drugs had not been reduced at that point, Marc would probably have lost his feet, and maybe even part of his legs. So it was a good day. And Craig, though I haven’t seen him since Marc left hospital, was a hero (to our family at least) that day.

Two years

I began to feel quite positive about Marc’s recovery. If his kidneys and blood pressure had recovered in just over a week, things were looking up. And they were. Except I had no concept of how long the rest of him would take. I don’t remember the first nurse who spoke to me about Marc’s long term recovery. It probably didn’t come for a long time after that second week. But when she did, gently, suggest that it might be two years before Marc was truly recovered, I didn’t believe her.

I believe her now. I remember thinking at the time that I was two years away from my fortieth birthday. As I write, I will be forty years old in less than a month and Marc is almost recovered. Well, as recovered as he ever will be. There are some things which we will never get back. But as we celebrate my fortieth in a couple of week’s time, we will also be celebrating an almost-full recovery for Marc. An almost ‘back to normal’, if you like. It has honestly taken that long. But we have made it.

Facebook

But back to Marc’s second week in Intensive Care. I began to realise the enormity of the task in front of us. Marc’s recovery was not going to be quick, and it was not going to be easy. I left the hospital feeling like recovery was possible, but a long way away. Turning on my phone upon leaving the hospital, I made the mistake of checking Facebook. A stupid move. After a whole day coping with potentially failing kidneys, a ventilator breathing for my husband, a dizzying amount of drugs being changed, numbers spinning in my head: blood pressure readings, figures showing Marc’s temperature and heart rate, I wasn’t ready for the effect that the deluge of ‘happy’ Facebook statuses would have on me.

I actually went off Facebook for pretty much the entirety of the time Marc was in hospital. This was because I grew to despise reading the posts of ‘normal people’. The comments of those drinking beer while watching the latest World Cup Game, of people sitting at the airport waiting for flights abroad for their summer holiday, attending christenings and weddings, drunken, debauched nights out, promotions at work, sports day at the kids schools. Don’t get me wrong, if Marc hadn’t been ill, I would have been posting exactly the same information. I didn’t resent my friends’ lives going on as normal, but I did feel immensely jealous that while my life had become a living nightmare, they were off to sunny Spain on a Jet2 flight complaining about the legroom.

A tricky place

Does that make me sound like a horrible person? I suppose it does. But for my own sanity, I pretty much stopped reading my Facebook feed, and certainly didn’t post anything about our lives until Marc came out of hospital in September. I simply couldn’t cope with it. Facebook is a tricky place at the best of times, but I certainly wouldn’t recommend spending hours pouring over it when you are feeling low.

Instead, I tried to focus on the positives. Marc was off dialysis. His blood pressure was much improved. He was on far lower levels of drugs to support him now. Things were slowly beginning to look up.

World Cup Fever

As we stand now in the midst of football fever, England’s performance in the Euros dominating the news, I am reminded of the 2014 World Cup, which had just started when Marc became ill. I remember Daniel had a Wall Chart from the newspaper which he was going to fill in, and he had planned to watch some of the matches with his dad. Not that I want anyone under the impression that Marc is a huge football fan – he isn’t! He’s far more into music than he is football, and prefers running or mountain biking to watching footy. But Dan enjoys it, and plays for a local team, so the two of them were going to have some father-son bonding time watching England’s performance.

England played and lost to Italy on June 14th, and I think I remember Marc and Dan watching that match together. Their second match was on June 19th, the day Marc first became ill, so I know they didn’t see that one. Again, England lost, this time to Uruguay. Sadly, this meant they were out. Their final match took place on 24th June, the Tuesday when Marc was admitted to hospital, and the day before he got sepsis and became gravely ill. So no, in case there was any doubt, we didn’t watch that one either.

Out of the competition

Now I don’t suppose they would have watched many more matches anyway, with England out of the competition, but perhaps they would have watched the final between Germany and Argentina on 13th July, had Marc not been in hospital. It is strange to think what might have been, and neither Daniel or I watched any more of the World Cup that year. Bizarrely, Marc remembers odd moments in ITU where there must have been either a television or a radio on, and he could hear commentary of the various matches. Also, perhaps the doctors and nurses around his bed were discussing the results of different games, and this only added to his confusion about what was going on around him.

In the days following his initial severe illness, the doctors began to sedate him less and less. This meant he began to come out of the medically induced coma little by little, day by day. Occasionally he would have to be sedated again for a particular procedure, but as the days went by, he began to be more alert when I visited. His eyes would be open, he would respond to my touch with a small squeeze of my hand, the expression in his eyes told me whether or not he understood whatever I said, as well as how he felt about it.

Bewildered

Throughout this period, and most of his time in ITU, he describes feeling incredibly bewildered about what was happening to him. Imagine waking up, unsure about where you are, unable to move your body independently, lost in a world of clinical white bedsheets, alien machines making unfamiliar noises, swaying blue curtains and medical staff in uniform who you don’t recognise.

This was the situation Marc found himself in. And I can’t even comprehend the panic he must have experienced. So while he was having his blood pressure, temperature and heart rate constantly monitored, he must have felt stressed and anxious, never quite knowing what was happening to him. It’s no wonder really that his heart rate was elevated for days to come. That’s not to say that the staff didn’t explain to Marc where he was and what had happened. They did this daily, sometimes hourly if he seemed particularly agitated or confused. But the enormity of what had happened to him was difficult for me to comprehend, and I had been there throughout the entire process. Marc had been completely (and thankfully) out of it for the majority of the time.

Calm and positive

Whenever I was there I tried to reassure him about what was happening. So did Linda. We told him about the most vital things one at a time, so as not to overwhelm him. We wanted him to understand why he couldn’t move, for example, and calm him with the idea that the loss of muscle and strength was temporary and completely reversible, with time. We did not tell him about the ileostomy, nor the damage to his feet, for some weeks. He was clearly quite distressed at his current perception of the situation, and did not need to be given further upsetting information to add to what he was already trying to cope with. We wanted to keep his mental state as calm and positive as possible under the circumstances.

If you ask Marc about his mad dreams during his time in ITU, he can keep you entertained for hours. I have told him to write his own book about the different crazy things that went through his mind during this perplexing period. He is incredibly lucky though; many patients who spend time in ITU suffer from severe and incredibly distressing nightmares once they leave hospital. Marc has not really experienced this: his dreams at the time were mad, mixed up collections of the things which were going on around him, mingled with his own fears and confusions thrown in for good measure. Very rarely has he had these kinds of dreams since leaving Intensive Care.

But he can tell you all about the different places he was taken by hospital staff during his stay in ITU: Bristol, London, New England… The list is endless. In reality, he didn’t move from Intensive Care for more than 40 days once his initial operations were over. But in his dreams, he imagined was being taken to this assortment of random locations, often by hospital staff, for a variety of bizarre and senseless reasons.

Holding him hostage

Occasionally, he was being taken to places against his will, and was convinced that the ITU staff were in some way holding him hostage (sometimes for monetary gain). I suppose this was his mind trying to protest against the constant testing and treatment he had absolutely no say over, and the fact that it was difficult for him to comprehend in his pain and distress that they were trying to help him. I remember one visit where he was constantly squeezing my hand, the first time he had managed to do this at all, I believe. I was overwhelmed by this, and returned the gesture by squeezing it back as frequently as I could. I was so happy that he was actually back in the land of the living, and could in some way respond to me at long last.

Marc remembers this very differently. He says that he can quite distinctly recall being terrified that the nurses and doctors were keeping him sedated in order to force him to stay at the hospital, because they wanted to extort some kind of cash from me, or use him as part of some kind of experiment. That he was not actually ill at all, and that I was being told that he was more ill than he really was so that I wouldn’t protest and take him home. The hand squeezing was his desperate plea for attention, his SOS to inform me, the wife who was being lied to by all the medical staff, that I needed to ‘get him out of there’. He frequently believed that he was part of some kind of reality television show, and was being forced to pass a number of trials before they would let him go. All mad, but true. The brain is a strange and fascinating thing.

Feverish and confused

Once Marc was taken off the dialysis for good, and didn’t need the Bair Hugger to keep him warm, he went to the other extreme, and had an almost constantly high temperature. I’m sure this didn’t help his feverish, confused state. The nurses actually filled pillows with ice and rested them either side of his body to keep him cool, and he was on a constant four hourly dose of paracetamol to keep his temperature down. This all seemed very strange to me, mainly because ITU was a freezing cold place, constantly air conditioned.

Outside the World Cup games went on, the temperature was 34° C in Brazil, and 29° C in Britain. I spent my time with a constant cardigan or hoody at the ready; needing to strip off outdoors and in the ITU waiting room, but layer up for the three or four hours per day I spent in ITU. Woe betide me if I forgot the sweater. Leaving the house, the sun blazing down on everyone outside, it was very easily done. But the few times I did forget, I massively regretted it as I spent a miserable few hours shivering by Marc’s bedside. And I could hardly complain about being cold to a man who couldn’t even move.

Anyway suffice to say that Dan’s World Cup chart 2014 didn’t get filled in, and England’s luck that year pretty much mirrored that of the Littlemore family: lousy. But, as I write this, England sit at the top of their group in the Euros, having beaten Wales yesterday. I can only hope that their luck continues, and that Marc and Daniel get to watch more England games together in the future.

Don’t Tell The Children

Over the next few days things started to settle into a pattern. ITU visiting became normality for us, and Marc remained on the same level of support. One of the most difficult things to deal with at the beginning was the children. Not their behaviour. I think I have previously said how amazing they were. Somehow they became complete angels, and I don’t recall having to tell them off about anything in the first few weeks of Marc’s hospital stay. Genuinely.

It was the fact that they couldn’t see their dad. Now I didn’t want them to see him like that. But it was a choice between seeing him in a state that would upset and frighten them, or not seeing him at all. Intensive Care generally does not allow children in, a fact which I was quite glad of. ITU is upsetting enough for an adult with a relative in there, let alone a child who has no concept of what ITU is all about. Later on, as we discussed Marc’s recovery and he was receiving far less support, therefore had fewer tubes coming out of him or machines around him, we started to think about when the children might see him.

ITU will actually allow children in where necessary and in appropriate situations. We never discussed what might constitute an ‘appropriate’ situation, but I suppose if a relative was particularly ill and wanted to see children before potentially passing away, that would be one reason. Another is the fact that prolonged illness has resulted in someone being separated from their children for a long time. This was our case. But in those early days, I couldn’t have allowed them to see him.

Not their daddy

He was a frightening sight. I honestly don’t think they would have recognised him as their daddy. Pale and looking so small, his 6 foot frame seemed dwarfed as he lay there immobile in the bed day after day. An enormous tube leading from a noisy ventilator machine to his mouth, which it completely obscured. A plastic object looking a little like an oversized snorkelling tube-end connecting the tube to his windpipe. Sores around his mouth from the pressure put upon it by the ventilation tube. Thinner tubes coming out of either side of his neck and running across to various drip stands. The cumbersome tubular blanket covering his entire body.

Numerous large alien machines surrounding him, which emitted frightening bleeps and dings at various intervals. The folder at the bottom of the bed, used to file paperwork recording his hourly BP, temperature and heart rate results, plus only slightly less regular blood test results, which was getting thicker by the day. The clinical looking frame behind his bed which contained the numerous drugs and solutions which were keeping him alive.

No. I did not want them terrified. I did not want them remembering Daddy like this.

Keeping life as normal as possible

But he was always an ever-present dad. His job did not take him away for work-related trips, like some people’s do. He had barely spent more than two nights away from them in the past. I knew that not having him there would be strange for them. And I didn’t know what to tell them about where he was. All I was certain of was the fact that I didn’t want to alarm them, and I wanted to keep their lives as normal as possible throughout the ordeal. I felt that this was the best way to protect them from what was happening.

Marc and I as parents believe very much in telling our children the truth. In talking to them in as ‘adult’ a way that is possible for their age. So I didn’t want to lie to them. Instead, I told them what I could without frightening them, and answered their questions as best I could. They were told that Daddy had become quite seriously ill, but that he was in the best place possible for the doctors to make him better. That he was in a special ward in the hospital, not like the one where we had visited him previously, but where children were not allowed. So that, for now, they could not actually see him, but that I would give him a kiss from them each day when I visited, and they could ask me as many questions as they wanted about him.

Complete acceptance

Amazingly, they accepted this with very few questions. I think perhaps they knew that I couldn’t cope with many questions at that point in time, or maybe that they didn’t want to know, as they feared it might be an upsetting truth. I’m no child psychologist. I only know that they were beautifully behaved and accepted what I told them as their new reality. And I set about making sure we had everything in place so that I could keep their lives running as normally as possible.

My parents and Linda were a Godsend, and cared for them almost daily at the beginning, dropping off and collecting from school and nursery, running them about to various clubs and classes, making sure they were fed. My sister and Marc’s brother Matt helped out hugely too, as did my friend Clare, often looking after Amy for the afternoon (alongside her own children) so that I could visit Marc for an hour before having to pick Daniel up from school.

This was also the point where I started to have to ask friends for help. To be honest, I didn’t have to ask. There were plenty of people lining up to offer support as soon as they found out what was happening. Daniel had friends’ parents who were willing to take him to and from football training and matches, parents of Amy’s friends at school offered to take her to ballet. For several weeks they both had people ferrying them about and generally seemed quite happy about it.

I hugely appreciated the support. Every time I thanked these people, they said that it was nothing, such a little thing for them to be doing while our lives were in chaos. I suppose if the situation were reversed I would have been happy to do the same, but I couldn’t have managed without that support in the beginning, and it wasn’t just a one-off. It went on for weeks to come.

A slow recovery

But back to Marc. He was taken off the dialysis for a short period on Monday 30th June, but his levels dipped quite dramatically. It was decided that his kidneys still needed the support for the time being, and the dialysis machine was switched back on. He was being fed via TPN (total parenteral nutrition) at the beginning. This type of food sustains patients when they can’t get their nutrients from any other source. The food is administered through a tube into a vein rather than into the stomach, and I got used to the familiar sight of the solution, which comes in a huge red plastic bag, hanging on the frame with all his drugs behind the bed.

The staff were trying to get Marc’s stomach to start working, by slowly dripping a different feeding solution into his tummy via a tube up his nose. They could control the amount being sent through the tube at any time, and would periodically draw the liquid back up and measure it, to see how much of it was being absorbed. At the beginning, not much was being absorbed at all, and I remember one of my daily questions for the nurse on duty being how much of the solution Marc was currently managing to take in. It was clear that his stomach, like his kidneys, would take time to recover.

A miracle

Looking back, I can see so easily how each of his organs, which had begun to shut down during his sepsis, needed time to recover and would not start working again properly for some time. Back then in the middle of it all, I found it very frustrating and upsetting, and could not really process the agonising sluggishness of his rehabilitation. Marc’s body could only cope with one thing at once, and it was going to take a very long time for every part of him to recover.

I do marvel at the body’s ability to repair itself though. Considering what Marc’s had been through, the fact that all his organs were able to recover was nothing short of a miracle.

The Drugs Don’t Work

After that Friday, the days begin to blur a little. Once Marc was at this stage, the things that were happening to him began to be far more slow, and the progress he made was snail-like. That weekend, we started to follow the usual ITU visiting hours. I remember Linda asking the ward sister if we should stop trying to be there all day every day and being told that now might be a good time to only visit in the afternoons and evenings, for a couple of hours at a time.

At first I resented the staff telling us this, feeling like I should be there by his side all the time I possibly could, but after a few days of this I was totally exhausted and began to see that it was only sensible. That none of us could go on like this, spending day after day sitting by his side while life went on as normal outside the hospital. That we would make ourselves ill by trying to support him. I felt grateful that Linda had realised this and asked the question. The visiting hours restored some kind of routine to our upside-down lives.

Crazy Dreams

It wasn’t like Marc even knew we were there. At least it didn’t appear like he did. In reality he was having all sorts of crazy dreams containing the cast of the characters who appeared by his bedside day after day: visitors, nurses and doctors who he was only just aware of. These dreams were mostly induced by the high levels of drugs he was being given. Anyway, we settled into a pattern. Between us, most days Marc had either his mum or myself sitting by his side, plus some visits from his brother, my sister, my dad (my mum was still quite ill and forbidden to enter the ITU ward, much to her frustration) and his best friend Mark. A lot of people who cared a lot about him.

I had to look in his diary to confirm what was happening medically at this point. I personally felt that the dialysis had really began to work now and was keeping his blood clean and poison-free, but he still needed a machine to do the job that his kidneys would do normally. Marc was still on the same amount of support: the antibiotics, the coma-inducing anaesthetic and various other drugs, the ventilator, dialysis machine, the list goes on and on. He was perhaps not in immediate danger, but still not (to use that phrase I hate) ‘out of the woods’. And now other factors were coming into play.

Complications

As I write today, Marc is still struggling with issues relating to his feet. When I tell people this, they find it difficult to understand. Why, when his original condition was linked to his stomach and bowel, is he having issues with his feet, of all things?

The facts are simple. When a patient is suffering from an extremely low blood pressure they are given drugs to help raise it. Marc’s blood pressure was dangerously low. In fact, he suffered with low blood pressure for a long time even after he came out of hospital. But he required huge amounts of three different drugs to help stabilise his BP. The drugs were incredibly strong. He had now been on them since early Wednesday morning. All drugs have side effects, especially strong ones when given in high doses.

What the drugs do is concentrate the blood flow around the essential organs to make sure they keep working. One of the nurses explained it to me. When a person has sepsis and goes into multi-organ failure, their body starts to shut down organ by organ. The last organ to stop working is the heart. The blood pressure can become so low that the situation is life threatening, and deprives certain parts of the body of blood. The drugs Marc was on were keeping him alive, but at a potential cost. The staff in Intensive Care were beginning to be concerned that the blood supply to Marc’s feet and legs was compromised, and that he might risk losing them if they didn’t manage to reduce the high levels of drugs he was on fairly soon.

Vague memories

I’m not certain that I had any idea about this at the time. I have vague memories of being told about the condition of his feet in the days that followed, but if I was told I don’t think I can have taken it in with everything else that was going on at the time. The first I remember about it was being asked by one of his nurses if I had seen his feet. I replied that I hadn’t, and asked why. She must have told me that they were being affected by the drugs, but no one showed me his feet until much later. I think they were again trying to protect me, trying to cushion the blow a little, as they knew I had dealt with enough shocks that week.

Another medical change over that weekend was linked to food. Again, it is not one I remember being concerned about at the time, but the trusty diary informs me that the nurses had swapped the tube up his nose for a different one now, so that they would be able to feed Marc and make sure that he received “adequate nutrition”. The fact that they were now feeding him (I think prior to that weekend their focus had simply been on saving him) gives me a little ray of hope that they began to believe at this point that he might just pull through.

Coping with one issue at a time

In terms of dealing with trauma, I truly believe that the brain just does what it has to. As Marc began to recover slowly, I was able to cope with more information about the issues he now had. Day by day, a new focus arose, and his stay in hospital over the coming months would bring with it a new challenge to tackle every week it seemed. Marc had to surmount a huge amount of obstacles during his recovery. And I found that he, and I, could only cope with one major issue at a time. Learning to breathe. Learning to eat. Learning to walk again. But we’ll come to that.

At this point I don’t think Marc was really considered to be ‘in recovery’. Suffice to say that in those early days it was all I could do to digest how seriously ill he was and try to understand what all the support he was being given was actually for. Recovering from the trauma that his body had to withstand and dealing with each difficulty was to be our personal challenge for the subsequent months. And even now, I worry. Marc experiencing a simple stomach ache can be enough to send me into a cold sweat. I can’t help it. We both understand why. I wish I could stop myself from feeling that way but have come to realise that I can’t. I think that I will be forever paranoid about any little illness Marc experiences. There is little I can do.

Empathy

The ward sister on that weekend was a woman called Rebecca. On one of the evenings, as I was gathering up my things and saying goodbye to Marc before going home for the evening, she passed by his bed and stopped for a quick word. Not about anything medical. Just to see how I was doing. She was clearly as concerned about me as she was about Marc, and wanted to convey the empathy she felt for our situation. She is a similar age to Marc, and I think she could see herself in his, or my, position. I will never forget our conversation.

Nodding at Marc, she said, “I’ve seen all sorts in here. Nothing gets to me any more. But he has.”

Surprisingly, the fact that an experienced ward sister was finding our situation difficult to deal with actually made me feel a little better. I felt like there were people on our side who cared about us and would do everything in their power to try and help us.

And, going home to see our children, knowing that I was leaving Marc for the night in her hands, was enough for me.

The Bigger Picture

Thursday night passed in a blur. I must have got some kind of sleep, but again it was punctuated by a couple of calls to ITU to check on Marc. The next day was going to be a difficult one – the first where I had very little support. My grandma had died earlier that month, before Marc had become ill, but her funeral had been postponed due to several members of the family (my parents included) being out of the country on holiday. It had now been planned for the following Friday, the 4th July. Since my dad had come home from his holiday he had been waiting to drive over to York, where most of his family live, to make the final arrangements for the funeral with his brother and two sisters. I think he had been putting it off because of my situation, but spoke to me on the Thursday and asked if I minded him and mum being away for the day to go to Yorkshire and make the arrangements.

Of course I didn’t mind at all, I understood the importance of the trip, but I still felt like I wasn’t able to cope alone. My sister had to work (her boss had already allowed her a lot of time off that week) and Linda also had something which meant that she couldn’t be at the hospital that morning. I sent a text to Clare, a very good friend of mine, and asked if she could come and keep me company for a while. I haven’t mentioned her much as yet, but she is a very old friend, in the sense that I have known for around eighteen years. She was the one whose husband worked in the hospital, and he had already been up to see me in the first few days of Marc’s illness to check on me and offer their support.

Uneventful

Her reply to my text was immediate and affirmative. Of course she would come and sit with me. I found out later that her husband had the day off and they had planned a family day out to a local forest where there was a life-sized Gruffalo hunt going on for children which they had been looking forward to. She cancelled this without a thought and arrived at the hospital soon after 9am to meet me. I have never been more grateful.

The morning passed fairly uneventfully, which was weird considering how crazy the past few days had been. Not much was happening to Marc. No operations, no tests. Today they were just allowing him to rest and monitoring how he was responding to the new antibiotics. He was still in the coma, which was difficult, as it didn’t really feel like he was there. He just lay, as if asleep, in the bed. He was still attached to an alarming amount of machines and drips, and buried under the Bair Hugger blanket. He didn’t feel like my Marc.

Passing the time

Clare had not seen Marc until this point, but she appeared to be very calm when she saw him. I don’t actually know what her first thoughts were, as she didn’t share them with me, but I suspect that she was keeping her own feelings to herself so that she didn’t upset me further with a horrified reaction. I’m not sure in her position I would have been able to manage the same. After asking Marc’s assigned nurse that day for an update (she was also called Claire), we sat with Marc for a while and then took a walk to the shop. We bought a wordsearch and a crossword puzzle book and took them back upstairs to the ward.

It sounds ridiculous, but we actually sat there in ITU next to my very sick husband, doing the puzzles. She did the wordsearches while I tried the crosswords. I didn’t manage to finish a single one, but rattled through the questions I could answer on several different crosswords in quite a short period of time, needing something to challenge my brain. I still felt very worried about Marc, but the puzzles helped to distract me from the situation, which was still very difficult.

A lengthy recovery period

Clare is a friend from my drama society. While we sat there, we also talked about the play I was supposed to be directing for them. I had now cancelled two rehearsals, and didn’t really see how I could make the next few with Marc being in hospital. It’s amazing how facts which seem quite clear to me now actually took a while to sink into my brain at the time. I had been so focused on Marc’s immediate situation, which was desperate, that I hadn’t stopped to consider the bigger picture.

I began to realise that perhaps I wouldn’t be able to make rehearsals for some weeks to come. That Marc, if he did pull through, would not simply be able to pop home from hospital and return to normal. The thought that he might have to spend weeks in the hospital had not actually crossed my mind, although other people with more distance from the situation had realised this immediately. Shock does funny things to your brain. I had not even considered that Marc would need a ‘recovery’ period, that this wasn’t simply a stomach bug which would be out of his system within a forty eight hour period. That there was more to consider now than his survival. Whilst the worry that he might die was all that filled my head, none of this had occurred to me.

Best case scenario

It was Clare who gently prompted me to start thinking about what the next few weeks might involve. That the best case scenario was obviously Marc’s survival and recovery in the hospital, but that this would take time. She suggested that I had two options open to me as the director of The Hound of the Baskervilles. Give it up and they could find someone else to direct it instead. Or get a temporary director to take over for now, who could liaise with me and continue with my vision for the play for now, until a time when Marc might be well enough for me to take over the reins again. It was a decision I didn’t really want to make, but I had to consider my options nonetheless.

Looking back, I can’t even believe that I considered trying to cope with a temporary director. A friend of ours who had previous experience of directing and who had heard about Marc’s situation had already offered, which was very thoughtful. So many people wanted to support us throughout those difficult times, and lots of them were simply not in the right place or situation to be able to, but this was one friend’s way of offering some practical help. Accepting his offer might have meant that I didn’t have to give up directing the play. I know he would have been sensitive to what I had been trying to do with the play, and I would have trusted him to do a good job until I was able to take back over.

Sensitively handled

But I don’t think I realised that actually, Marc’s recovery was going to be long and arduous. That he would need me for far longer than the early September date when the play was due to be performed. Continuing with it simply wasn’t practical. So I began to think seriously about giving the play up. Clare asked me to think about it overnight and let her know the next day. She is the society’s secretary, and I appreciated that they needed an answer quite quickly, or risked jeopardising the play’s success.  Nevertheless I appreciated the sensitive way she handled the situation and the fact that the society were prepared to give me the time to come to the decision in my own time.

She told me of the huge numbers of people from my drama group, Centenary Theatre Company, who wanted to send messages to myself and Marc. Because of the extreme situation I know she was holding them back from me, asking them not to text me directly as she understood the pressure I was under. The sheer volume of messages I was having to respond to daily about Marc’s condition was only adding to my stress levels. Not that I wasn’t immensely grateful that we had so many friends that cared, but at the time I felt the pressure to answer every single one, which was just not practical. Clare had told people that she would keep them regularly informed of Marc’s progress, and let them know when the time was right to start sending messages of support and best wishes.

I felt so amazed by the huge amount of love and support I felt from everyone we knew during Marc’s illness, but also know that I couldn’t have coped with any more of those messages so early on in Marc’s illness. It’s difficult to know what to do at such a critical time. I know had the situation have been reversed, I would not have had a clue what was the best way to respond to a friend whose partner was so close to death. ‘Get well soon’ doesn’t really cut it when someone is so seriously ill. And I really needed space in those first few days to deal with the enormity of what was happening to us.

ITU procedure

We were sent out of the ward for a little while. This happened regularly: whenever they had to complete a medical procedure on Marc, the staff would ask us to leave for a few minutes. This was presumably to protect us from what they were doing, which might have caused us upset, and also possibly to avoid us getting in their way. This could be as simple as them ‘rolling him’, a process where the nurses would move Marc on to his side from his back, or vice versa. This avoids patients getting bedsores and developing further complications while they lie in bed immobile. It took at least two nurses to do this and we were generally not allowed to be there while it was happening.

Before asking us to come back into the ward, Claire (Marc’s nurse) told us to go back into the Relatives’ Room. I wondered why, dreading what else she might have to tell me. She seemed a bit uncomfortable, and I wondered what she was going to say. Clare came in with me, and I was extremely glad that she was there. In the end, it was something quite small and simple, yet also very significant. Claire told me that Marc’s body was swelling up due to the high levels of drugs that were being pumped into his body, and the dialysis procedure. His hands particularly had grown in size, and might continue to do so, she told me.

Then she handed me Marc’s wedding ring.

Safekeeping

They had only removed it because they didn’t want to have to cut it off if his hands got so swollen that it couldn’t be removed by normal means. She was giving it to me so that I could take it home for safekeeping and so that it didn’t get lost in the hospital. All of this she explained and I understood. I have seen her again since that day and she has told me several times how terrible she felt handing the ring over to me, even with the explanation of why it was necessary to remove it. I think it’s easy to forget how difficult such situations must be for hospital staff, as well as for the patients and relatives. Although I didn’t know it at the time (she was never anything but professional) that moment with the ring clearly upset her, just as it upset me.

Because, as she handed it to me none of us could fail to see that the situation we were in was a mirror of the one we would have faced if Marc had died.