Breathe Again

In the days following my birthday, the ITU staff began the process of trialling Marc off the ventilator to see how far he was able to breathe on his own. He was put on to a ‘step down breathing circuit’, using a machine called a Drager, which I came to completely despise. It is a piece of equipment which allows a patient to breathe for themselves while still supporting them to some degree, depending on their condition. Basically, it allows the lungs to attempt to work by themselves again, but still gives the patient some assistance with their breathing. The support given by this machine can be increased or reduced, depending on how well the patient is doing.

Some patients who are on a ventilator for a reasonably short period of time can start to breathe again without the aid of a Drager machine. Marc however, by the time they began to feel he was ready to try breathing by himself, had been on the ventilator for around ten days, and his lungs were clearly not up to much. Initially when the purpose of the Drager machine was explained to me, I felt positive about it, sure that it would have Marc breathing again in no time. As it turned out, it took him almost a month before the breathing tube was completely removed and he was deemed able to breathe with no support whatsoever. This period was a kind of hell for both of us.

Clearly struggling

The theory with the Drager is that a patient is transferred on to it for a period of time each day, and those periods of time are increased as the patient becomes stronger and more able to breathe independently for longer stretches of time. Marc started on the breathing circuit for a two hour period each day, which he seemed to manage quite well. After he had done this for a few days, the staff began to increase the amount of time he spent on the Drager to four hours, or sometimes two separate two hour periods. During visits on these days, Marc’s diary is filled with me commenting on how tired he seemed when I saw him, and how much he was concentrating on his breathing, which he was clearly struggling with.

I think the fact that he started on this process just as he began to wake up and become more conscious was, although necessary, actually quite detrimental for us all mentally. It certainly made Marc far less communicative again. After my excitement over his escapades with the communication board on my birthday, when he had tried so hard to speak to and even joke with us, his energy levels seemed to diminish and he was far less able to ‘talk’ to us. I think, looking back, that all his energy was taken up by his total focus on the breathing. It took so much effort just to get through those few hours on the Drager with less support, that he had no energy left over to spend it pointing at letters on a board.

Difficult to take

This left me bitterly disappointed, after my initial burst of hope on July 5th. I couldn’t believe how much of his strength had to be used up in the simple act of breathing, which the majority of us don’t even think about. I suppose when you consider that all of his internal organs had begun to shut down during his initial trauma, it’s easy to see how his lungs had been weakened along with the rest. At the time though, this was difficult to take, and felt like we had taken one step forward and two steps back.

During this period, every day as I visited him, he seemed more listless and tired. I began to worry that he was becoming depressed, as he seemed to be finding the breathing so difficult. In addition to this, he was still struggling to sleep, which created a sort of vicious cycle he didn’t seem to be able to break. No sleep meant less energy for the Drager machine, so he wasn’t able to increase the amount of time he spent on it, and this worried him, so he was less likely to sleep. Every day the staff would attempt to get him to manage longer, to no avail. But we were all very aware that until he could breathe for himself, there was no chance of him leaving ITU. And that meant no chance of him seeing the children. I cannot stress enough how learning to breathe seemed like a completely insurmountable challenge for Marc for such a long time.

The role of the physio

Physiotherapists had begun to visit Marc, although to begin with I didn’t really understand why. I have two friends who are physios, and for years when we spoke about their jobs they referred to working with ‘respiratory’ patients. I could never understand how a physio, who I associated with rehabilitating limbs which had been broken, back injuries or working with patients who were learning to walk again, could support patients with their breathing. They had tried to explain it to me several times, but I don’t think I ever fully understood.

Until Marc needed them. The physiotherapist’s first job was to visit Marc daily and help to clear his chest of all the secretions the body usually takes care of all by itself. At this point Marc’s lungs weren’t strong enough to do this. Then the physiotherapists began to come and ‘work’ his lungs for him, attempting to support him through his periods of time on the Drager machine using a variety of machines and techniques to encourage Marc’s breathing, as well as giving him constant encouragement and advice. The physios were to become key members of the team supporting Marc, and we knew them extremely well by the time he left the hospital.

The tracheostomy

As the doctors realised that Marc was not going to find breathing again very easy, they took further action. On 8th July, one of the doctors spoke to me (in the relatives room I had come to know so well) about Marc having a tracheostomy. This meant taking the large ventilation tube out of Marc’s mouth and replacing it with a smaller tube in his throat. The procedure was a small one, and the doctors would have to sedate him again while it was done, but this would only be for half an hour or so, and he would be much more comfortable after this, although he still would not be able to speak to us.

My first reaction, having almost lost him several times already, was that I didn’t want him to be sedated again. In truth I was a little frightened every time he was unconscious, even though I knew that the doctors were sedating him purposefully, that he would never be conscious again. But Marc’s mouth by this point looked incredibly painful after a fortnight of the huge, invasive tube. He had tender-looking sores around his mouth which the doctor said would be able to heal once he had the trache fitted, and he would be so much more able to move without the massive tube attached to his face. His facial expressions would become clearer, he would be far more comfortable, it would be far easier for him to participate in the physio exercises and the trache tube would work just as well in terms of allowing him to learn to breathe again.

Less invasive

I consented to the operation and spent an anxious hour sitting in the dreaded waiting room while the doctor did the procedure. Thankfully it went as planned, and the doctor came to tell me that Marc was fine, just still sleeping. When I was allowed to return to him he was still out cold, but he did look much better. His face was no longer obscured by the enormous mouthpiece and tube, and the one protruding from his throat was much smaller and seemed less invasive. In a similar way to the removal of the dialysis machine and Bair Hugger blanket, which had made me feel much closer to him, the removal of the tube made him look more like ‘my Marc’.

We still had a long road ahead of us in terms of him breathing independently again, but at least he looked more comfortable now. And, for the first time, I could actually get near enough to his face to be able to kiss him. This made me feel like, little by little, he was coming back to me.

Recovery

I feel like I have spent a lot of time recently describing my concerns about the other things which were going on in my life, outside of Marc’s recovery. But while all these things were going on in the background, Marc’s condition had (almost) stabilised; there was no longer a constantly present, terrifying, could-die-any-moment feeling, and Marc had begun the extremely long and challenging road to recovery. His diary chronicles his progress in brief, but does not go even part of the way towards describing the millions of steps Marc had to go through to begin the process of getting ‘back to normal’.

He was left, after the initial extremely traumatic week in hospital, coming out of a medically induced coma slowly and coming to terms with what had happened. I have to remind myself that I had been present throughout the entire process, while Marc had been out for the count for the majority of it. He tells me now that he remembers parts of the initial illness, the weekend at home, being admitted to hospital, but after that his memories are extremely hazy or non-existent. I cannot imagine what it was like for him to begin to come round, as one would from a general anaesthetic, wondering where he was and what on earth had happened to him.

Something like normal

He was pretty much immobile: the induced coma had saved his life, but also ensured that he lay still, using few of the muscles in his body, for over two weeks. Apparently the body’s muscles begin to waste away after only a forty eight hour period in bed. So two weeks of severe illness and two major operations had taken their toll: Marc’s body was weak and capable of almost nothing. While the correct antibiotics had rid him of the Group A Streptococcus, it wasn’t as simple as that. He had a machine breathing for him, was requiring additional minerals, bloods and lots of painkillers at different times just to restore his body’s levels to something like normal. He was having daily bloods and swabs taken to check his condition wasn’t worsening at all.

Over the early days of July, his condition did alter for the worse several times. His diary records the nurses and doctors trialling him off dialysis several times until he was strong enough to manage without it, and increases of the drugs he was being given for his blood pressure and elevated heart rate were given several times before being decreased more permanently. His painkillers were increased as he became more conscious and the staff realised he was in more pain than they had first assumed.

In addition to this, his temperature was up and down constantly, and the amount of food he could tolerate through the tube to his stomach varied daily: sometimes it stopped absorbing the food altogether for periods of time. All the time, a constant stream of consultants, doctors, nurses, sisters, physiotherapists, microbiologists, nutritionists and tissue viability experts were in and out to examine and further advise on treatments for his condition. It was a massive balancing act.

A growing realisation

As Marc became more conscious, we tried to explain his situation to him. I had been warned by the nursing staff that often when a patient with a ventilator comes round from their coma, they fight against the tube in their mouth. The ventilation equipment is huge, involving a mouthpiece which fits in between the lips and a fairly hefty tube which travels down the airway and into the lungs. All of this is attached to a machine at the side of the bed which makes a constant sort of ‘whooshing’ noise and beeps regularly. When Marc awoke, he didn’t fight against the tube; in fact there are very few episodes where Marc was noted to have any kind of violent or noticeably negative reaction to what was happening to him.

I took the lack of struggle as a good sign. Surely this only meant that he was understanding what we were telling him about the illness and understood what the tube was, and that it was necessary. It was only much later that I considered it could be a negative thing that he didn’t fight it: it was almost as if he didn’t have enough fight left in him to try and reject the tube and attempt to breathe for himself. There are examples of patients who have not been in comas for a very lengthy period of time coming round and having the ventilation tube removed very rapidly, finding themselves breathing normally again within a matter of hours.

Not Marc. Learning to breathe independently again was to be one of his biggest challenges. But more on that later.

Conflicting emotions

Once the momentous occasion of my birthday was passed and he had shown himself capable of taking in information and understanding it, we took to telling him a little more information each day. At first, just that he was in hospital, that he was safe, but that he had been very ill and was recovering. We repeated the same information over and over, feeling unsure about how much of what we said was being understood or taken in properly, to make sure that Marc did understand and was digesting the information we were trying to get across to him.

I personally felt that he would need repetition and reassurance, the things I imagined I would want for myself, were I in his situation. He didn’t begin to respond to us regularly for a long time, so I was never completely sure that he took in what I was telling him, or how he felt about it. I wanted to make sure that he wasn’t frightened when I left him at the end of a visit, and couldn’t be sure how much time the night staff had to speak to him, or even if they would speak to him, perhaps leaving him alone to sleep. I couldn’t imagine a worse nightmare that waking up with a head full of fears and questions and no way of asking anyone for reassurance. Of being left alone in an alien world of blue and white, surrounded by strangers and feeling completely abandoned by all of the people who loved him.

When I left him after evening visiting, it was with a mixture of fear, sadness and relief. And guilt. Relief that I could leave the hospital, a place I knew was utterly necessary, but had grown to dread entering. Guilt at feeling relieved, and also guilt that Marc wasn’t able to leave with me. Fear that he might not still be alive when I returned the next day. Sadness that he had to spend yet another night by himself in ITU. As he communicated with us more (not verbally, but I would ask him questions and he began responding to them with nods and so on, letting me know if I was right or not about how he was feeling and what he was thinking) my understanding of the time he spent in ITU outside of visiting hours grew.

Sleepless nights

I became aware that he couldn’t sleep at night, with all the noisy machines, the ever-present-if-slightly-dimmed lights, the nurses bustling about quietly, plus all the questions he had about his condition which we hadn’t managed to answer for him yet. This made me feel even worse, and I remember quizzing the nurses each day about how he had slept and what the doctors were doing to make sure he could get a better night’s sleep the following night. He was given lots of different sleeping drugs throughout his time in ITU, but claimed that none of them really helped him. This worried me: in my mind, like sufficient nutrients, sleep was a vital part of Marc’s recovery, and if he couldn’t sleep, how could he begin to heal?

He began to be awake during my visits, but could barely lift a hand or arm, never mind his head or body. It required three nurses to ‘roll’ him every few hours, to prevent him getting bedsores. His bed was a special one which moved automatically every few hours (adding another noise to the cacophony of sounds in ITU) making sure that he was never settled in a single position for too long. His legs were supported on air-filled tubes a little like bubble wrap to prevent them from getting sores, which would run the risk of becoming infected and further complicate his condition.

Able to reach him

As he came off the dialysis machine, the nurses removed the Bair Hugger blanket from his body and I felt more able to reach him. This was probably when I became more aware of the state his feet were in. The staff did an extremely good job of not frightening us about them. It took me a long time after Marc left hospital for me to realise how close he came to having them completely amputated. At the time I only remember being shown them once or twice, and aside from acknowledging that they looked an odd black colour, I didn’t really think about it too much.

I’m not sure my brain could cope with it. I think I was so worried about other things that my mind reached a kind of impasse where it said ‘No more!’ and refused to take in any additional information about other issues linked to Marc’s illness which I considered to be ‘non critical’. It was only later that his feet became my major concern, when he was through the worst and his survival was no longer my main focus.

So he lay there. Unable to do anything for himself, even move or breathe. Beginning to comprehend some of what had happened to him. Frustrated that he could do little to improve his own condition, at least for the moment. And, at some point, his long, arduous journey towards recovery began.

A Marathon Challenge

Fitness and weight have played an important role throughout Marc’s period of illness. Before he became ill, he was 42 and had begun training for a half marathon, probably a nod to the ‘mid-life crisis’ turning 40 can bring on. He had felt the need, upon reaching that momentous age, to get fitter and set himself a new and challenging goal. The English Half Marathon was set to take place in Warrington in September 2014, and Marc had signed up to run it, along with a couple of friends, the previous November. He had spent much of the darkest months of winter 2013-14 training in the evenings, and by spring he was running distances of up to 7 or 8 miles. He was, justifiably, proud of himself and well on track to achieve the 13 mile distance he planned to run in the autumn.

When he ended up in hospital, several of the doctors commented on how much of his survival was down to his fitness levels. That someone with the same illness but a higher resting heart rate and carrying more weight would not have stood the same chance, and might not have pulled through as Marc had. It certainly made me think about my own health. Could I honestly say that I was that fit? That, should I contract a sudden and mysterious illness, my body was strong and healthy enough to fight it off?

Difficult to look at

When he entered hospital on 23rd June 2014, Marc weighed around 80 kilograms, or 12 stone 8 pounds. This is not a huge weight anyway, for a man who is 1.9 metres tall, or 6 foot 2. During his hospital stay, losing muscle mass by the day and being fed for the most part by tube up his nose, he lost around 19 kilos, or 3 stone. When he left hospital (and believe me I do not say this lightly), he looked like someone who had come out of a concentration camp: his ribs sticking painfully out from his chest, his skin hanging off him in folds, his arms frail and weak. My first thought when he came home and I saw him without all the bedsheets and covers which had masked his condition for three long months in hospital, was that he had become an old man, wizened and skinny. In truth I found it difficult to look at him without clothing, feeling close to tears whenever I did.

Eating was a major problem from the moment he entered hospital. Fed nasally to begin with, his traumatised stomach eventually began to digest the liquid food being dripped into it, and the nurses taking care of him remarked to me that, slowly, he was becoming more able to tolerate it. Each day they painstakingly recorded the amount which was being absorbed by his gut: tiny, tiny amounts to begin with, and increased the amount of feed being administered accordingly. Several times an optimistic nurse upped the amount too high too quickly, and it had to be reduced again in order to allow his stomach to begin coping again, with only the very smallest increases possible to begin with.

Slow progress

If I have learned anything from Marc’s illness, it is that recovering from a major trauma or illness takes time. So much time. I didn’t expect that it would happen overnight, but I massively underestimated how long it would take every part of his body to return to something like normal. Everything his body had to do in the recovery process happened slowly, and if we tried to rush or fast forward things, we often found ourselves being set back further than we had been in the beginning. His digestive system was one of the things which took the longest to settle down. Even now he has a far smaller appetite than he ever had in the old days, pre-illness. Eating out can be a challenge, as he can’t manage massive meals any more: starters and puddings are a thing of the past: he rarely has anything other than a main meal these days, which he often does not finish.

But his weight loss was such a major issue, to me at least, that once he was home from hospital I tried to force-feed or persuade him to eat every sort of fatty food available. We saw dieticians, who had little advice other than to load his food with cream, full-fat milk, sugar, and take dietary supplements. Most of these only made him sick, or reminded him of the unpleasant time he had spent in hospital, bringing back very negative memories of throwing up every time he had one.

Devastation

It sounds ridiculous, but I spent a good few months being completely paranoid that Marc would die of starvation, or have to receive food through a tube for the rest of his life, he was sick so often. I would watch him eat a meal and then sit, observing him carefully, quizzing him about how his stomach was coping with the food he had just consumed, and then feel a fresh devastation come over me when he headed to the bathroom and I knew he would not keep the food in his stomach.

I despaired of him ever managing to eat a normal meal, of his stomach and bowel functioning correctly enough that he could consume food and keep it in his system long enough to absorb the nutrients and begin to put on weight. Looking back, it was ridiculous. I was so desperate for him to return to normal, and eating is such a necessity for life, that I probably pressured him into consuming more food than he was able, thus making his stomach more likely to reject its contents and continuing the vicious cycle which I had set in motion.

Desperate to return to normal

It didn’t do our mental health or relationship any good either, as he regularly tried to eat more than he could manage, probably partly to please me, and I sometimes even felt angry with him for not managing to keep the food down, even while I was perfectly well aware that it was not his own fault and that he wanted to put the weight back on and return to normal just as much as me.

And none of the medical staff we saw seemed to have an answer. There is plenty of advice out there on how to lose weight, but very little about how to successfully put it on. Any advice there is focuses on eating larger portions and adding more fat and protein to your diet, which was no good to Marc, as the volume of food he could tolerate was so small, and adding to it only exacerbated the issue.

In the end, I have come to realise, the solution was time. Eating small amounts fairly often; adjusting to how much his stomach could manage and not exceeding that amount; gradually increasing the volume of food he ate in infinitesimally small amounts; trying to make sure that what he did eat was high in fat and protein content: these were the ways he managed to increase his food intake and therefore his weight.  It as definitely goodbye to salad and vegetables for the time being!

Clearing my head

Meanwhile, I was losing weight through worry. I somehow believed that weight loss through stress was almost a fallacy, that it wouldn’t happen to me. I was so wrong. I took up running, a sport I used to despise, and found that it did wonders for my mental health. I didn’t run far, and I will never run competitively, but just escaping for twenty minutes allowed me to clear my head and destress a little. I found that once I got going (I’m not very fast but can do distances without stopping at a fair pace) and was out of breath and tired, all I could concentrate on was running and breathing, which was fantastic. I also found that thinking things through outdoors, without anyone else to worry about, was really freeing.

Between the running, which was very good for me, and eating less than perhaps I should have done, I began to lose weight. I didn’t notice at first, and I certainly never got to a worryingly low weight, but I definitely began to notice a difference when I went back to work in the September and my suit trousers almost fell down! Weirdly, it was nice to lose a little weight (I had probably been a little heavier than I should have been) and I certainly got a lot of compliments.

Immensely grateful

But at least one person pointed out to me that my weight loss was not really a good thing, as it meant that I wasn’t eating well. I am certainly immensely grateful that Marc’s situation began to improve when it did, because a prolonged period of time grabbing snacks and half-eaten meals, unfinished because of time pressures or because I was too worried to eat any more, would possibly have left me at a weight which was dangerous.

As for Marc, he came out of hospital on Thursday September 18th 2014. The English Half Marathon took place around Warrington on the following Sunday, and he was immensely proud that one of his very first outings after coming home, in a wheelchair and still extremely weak, was to cheer on the friends who he should have been running with. He had, in effect, run his own ‘marathon’ and to be out of hospital, back at home with his family after his long and arduous struggle to recover, was a major triumph in itself.

Happy Birthday!

I recently celebrated my fortieth birthday, and with it came the celebration of two years since Marc’s illness. It put me in mind of the length of time we were told Marc would take to recover, back when it first started to look like he was going to survive. Healing from the kind of trauma his body had experienced was going to take a long time. I remember speaking to one of the sisters, and I must have been being overly optimistic about getting Marc ‘back to normal’, because she gently informed me that recovery of the sort that Marc was going to have to experience was not going to be fast. She suggested a figure of two years, and I remember thinking two things: one, how ridiculous – it won’t take that long, and two, it’s my fortieth birthday in two years, if that’s how long it will take for Marc to recover, we’re going to have one hell of a party!

And party we did. But a post about my fortieth party can wait for another time. For now, I want to go back to my thirty eighth birthday. It was on a Saturday, just over two weeks after Marc had gone into hospital. The day following my grandma’s funeral, which I had been unable to attend. I didn’t feel much like partying then, I can tell you. I almost wanted to forget it was happening, and get on with visiting as normal. But, in the nicest possible way, my family wouldn’t let me. After the children’s usual Saturday morning clubs, Mum and Dad drove myself and the children to Pizza Hut where we met my sister and my nephews for lunch.

Nicer than it should have been

It was actually nicer than it should have been. The kids, even my two, who understood more about their dad being in hospital than their cousins, acted as kids do normally, they played up, were excited about the prospect of pizza, of spending time with their cousins, of going to the park afterwards. The adults, although weighed down by the severity of what was happening to Marc, made an effort to  have fun for the kids’ sake, and all in all it was a nice lunch. The plan for later was for one grandparent (I don’t remember which) to take the children home to play, or to the park, while the other came with me to the hospital for visiting.

I had received some presents from Mum and Dad, from Janet and the boys, and even from the children (although it certainly wasn’t Marc who bought them, it must have been my mum). I can’t tell you what I got from anyone, I was so distracted. I think there were some sweets involved, and probably a book or two. I’ve no idea, really. The best gift was to come when I got to the hospital.

A marked improvement

After a fortnight of drifting in and out of the medically induced coma, when we arrived at the hospital that day, Marc seemed far more ‘with it’. By this I mean that he was propped up a little higher, his eyes were fully open and alert, and he was able to move his hands and arms a little, although it took a lot of effort. Linda and Matt were at the hospital too, and both remarked on the improvement in Marc as they wished me a happy birthday. I can’t remember which nurse was on duty that day, but I seem to remember there being more than two people around the bed at one point at least, so maybe the nurse was a more lenient one than usual, or perhaps we took advantage because of the special occasion. Even the staff were thrilled that Marc seemed so much better that day.

I told Marc that it was my birthday, knowing that he would have no idea what day it was. He couldn’t speak to wish me a happy birthday of course, but I wanted him to know. Because he was far more alert than he had previously been, the nurse suggested we try something new with him. She brought a kind of laminated booklet over to the bed, ringbound, with a number of different sections all containing images and letters. I think they are called communication boards, and they are extremely useful devices for people who have no speech.

Beginning to communicate

With little difficulty, we managed to instruct Marc that if he was able to point at the different pictures or letters, he would be able to communicate simple messages to us. This was very exciting for me, knowing I might soon have more of an idea how he was feeling, but even more crucial for the nurses, who would be able to clarify things with him and check whether he understood what was going on, or whether he was in any pain. There were all sorts of different images: ones which allowed patients to explain their needs, that they were hungry, thirsty, hot or cold; different parts of the body which might require attention; instructions like ‘fix my pillow’ and ‘turn the lights off’. It seemed a revelation to me that such things existed, and I was heartened at how much of a difference it might make to Marc’s situation.

There was also an alphabet, upon which patients could spell out words to get across less obvious, more complex statements. Once Marc grasped the purpose of this, he tried immediately to form a sentence for me to understand. I can’t tell you how frustrating it was (for myself and for him) waiting for him to spell out the words. Each one took an age, his hands were weak and shaky, it was not always clear which letter he was pointing to, and we had to keep track of each letter in a sequence to work out the word he was trying to spell. What I found even more frustrating was his insistence on spelling out an entire sentence. A single word would have been enough for me to understand his first communication, which was:

W-H-E-R-E  I-S  M-Y  R-I-N-G

I almost burst into tears on the spot. What would you imagine the first communication of an incredibly sick man who wakes up in an unknown hospital bed to be? Where am I? What’s wrong with me? How are the children? But he wanted to know where his wedding ring was.

The same old Marc

But the time it took to get that message across was interminable. He could easily have spelled out the word ‘R-I-N-G’ and I would have understood. But no. He insisted on doing everything in full, proper sentences. Since his illness, I have had people enquire whether Marc’s brain was affected by his condition, whether or not he was still fully functional mentally after what he had gone through.Thankfully, his brain was never affected, and aside from him suffering from some understandable periods of anxiety and depression, which were temporary, mentally he is very much the same Marc. I suppose this spelling out of whole sentences was a good sign, that he was able to communicate properly, clearly, but at the time I was ready to scream.

After I reassured him that I had his ring safely at home, I went on to tell him where we had been for lunch. His second sentence?

I-  W-A-N-T  P-I-Z-Z-A  T-O-O

That had us all laughing. The thought that he could contemplate eating pizza when he was barely tolerating being fed liquid through a tube was pretty funny. It was also quite sad really, as there was no way he would be able to eat pizza for a long time after this point, but the fact was that he had made a joke (he wasn’t being serious, he knew he couldn’t eat pizza) and suddenly, for a tiny moment, there was a flash of the old Marc. I don’t think I’ve made it clear up until this point, but Marc is a very funny man. Usually, he makes me laugh daily, and I had at that point been without that laughter for over a fortnight. As I chuckled, I realised how much I had missed him, and felt like this small amount of communication, this little joke, was his birthday present to me. And it was the best one I’d had all day – perhaps the best one I’ll ever have.

An amazing day

I have to say that it didn’t last. I thought that after having this amazing day, where he had managed to communicate so much to us, things would start to move on a consistently upwards trajectory, but that was not the case. After spelling out the two initial sentences, I was keen for him to tell me more about what he was thinking, and I asked him numerous questions, but they had completely taken it out of him and he couldn’t manage any more. He fell asleep soon afterwards, and was actually far less communicative in the days following my birthday. It certainly took him a long while before he tried the communication board again.

But it had been enough. Enough of a present to lift my spirits, to give me hope that there was a future, that he could recover, that he would be able to make me laugh again. And that’s what I hung on to in the difficult days that followed.

The Right Decision

Aside from worries about Marc’s health, how the children were coping, and how we might cope financially if Marc were ill long term, two weeks into Marc’s hospital stay, my grandma’s funeral took place. If it had been vital for Mum and Dad to take time away to organise it, it was obviously even more important for them to attend it, so on Friday 4th July, they planned to drive over to York to attend it with my sister and the rest of the family.

In the days running up to the 4th, I agonised over what to do. I wanted to be there at the funeral. I wanted to say goodbye to my Dad’s mum, a woman I admired immensely. To pay my respects to the Canadian woman who had left her country of birth during the Second World War to travel to India to be a missionary, met my grandad and married him within the year so that she could legitimately come home to Britain with him at the end of the war. The woman who had baked Anzac cookies for us every time we visited. Who had looked after us in her home for a solid week during our childhood while Mum and Dad moved house, and built snowmen in the garden after a particularly heavy winter storm. My last grandparent.

Lovely memories

We had never lived very close to any of my grandparents. This meant we didn’t have the kind of relationship with them that many children have with their parents’ parents, but we saw them fairly regularly and they spoilt us, as grandparents do, whenever we saw them. My grandmother had been suffering from dementia, and for the past few months had not really known anyone when they visited her, but I have so many lovely memories of the kind, loving woman she was.

One of my fondest last memories of her was taking the children to visit when they were born. When she held Daniel for the first time as a baby she lit up, seeming more animated than she had done for a long while, and it made me so happy that she had got to meet her first great grandchild and been able to hold him in her arms. When Amy was born she was weaker, and couldn’t quite manage to hold her securely enough without support, but the experience of meeting a new baby still seemed to make her very happy.

I wanted very much to attend her funeral and say my goodbyes.

More responsive

On the other hand, Marc needed me. If the funeral had been local it would have been entirely possible to attend it and get back to visit Marc without any issue. But the journey to York is between two and three hours long depending on traffic, which can be horrendous. I couldn’t attend the funeral and guarantee I would be back to visit Marc. In the early days of his illness I really felt like he couldn’t be left for an entire day without seeing me, especially as he was becoming more responsive to us by the day. The doctors continued  to reduce the amount of sedatives he was on in order to let him come out of the coma slowly and see how he coped. I wanted to be there for him in case he came round and was disorientated or frightened.

I spoke to a lot of people about this. Dad reassured me that it was my decision, whatever I decided was ok by him. If I didn’t come, everyone would completely understand, under the circumstances. I knew that the previous week, when they had gone to make the arrangements for the funeral with the minister, they had spoken to him about Marc’s situation.  Following this discussion, the people of my grandma’s church prayed for Marc at their service the following Sunday, which was extremely touching and made me feel like we weren’t alone. Even while mourning the loss of one of their own parishioners, the people of my grandma’s church were reaching out to support strangers, connected to them only by a distant familial bond.

Selfless

I know it meant a lot to my dad too. I can’t imagine how torn he felt during those few days, seeing his daughter going through such trauma yet at the same time grieving for his own parent. I wanted very much to be there at the funeral to support him, the way he had supported me, but as is typical of him, he was incredibly selfless and insisted that I make whatever decision was best for myself and Marc. It was his mum’s funeral, so in this instance it was his opinion I cared the most about. The only other person I really wanted to ask was Marc, and he wasn’t up for comprehending such things at that point. I also didn’t want to worry him, knowing he would feel he should encourage me to attend the funeral, despite wanting me to stay with him.

I spoke to Linda, my mum, my sister, my friend Clare, all the time hoping still for some kind of miracle leap forward in Marc’s recovery which would allow me to attend the funeral guilt-free, knowing that Marc was ‘on the mend’ and could cope without me. Everyone was lovely, and said that it was up to me, they would support me whatever I did. I suppose in a way I just wanted someone to tell me what to do. I was sick of making decisions and feeling alone in them, so used to discussing everything with a husband who was, for now, out of reach.

My decision

By the Wednesday it was clear that no miracle was coming. Marc was still incredibly sick, and on such high levels of support that his survival was still by no means guaranteed. I knew that I would never forgive myself if I found myself miles away in York and received a phone call telling me Marc had taken a turn for the worse and I couldn’t get there in time. So I decided. I would stay in Warrington with Marc.

But even with the decision made, I felt incredibly guilty and sad.

I sat on the Wednesday evening and wrote a letter. A speech, I suppose, that my Dad promised he would read aloud at the funeral. How he managed it I will never know, but he did. The speech tried to explain why I wasn’t present at the funeral, the reason for my absence and the sentiments I would have expressed in person, had I been at the funeral. It took me a little while trying to find the right words, but in the end I was happy with what I had written. I will never know what the response to my words was, but I suspect it greatly added to the tears shed on that day.

The one person who mattered

I said how much I loved my grandma. How sorry I was that I couldn’t be there to say my goodbyes, to pay my respects. To support my dad, and the entire family, on what must be one of the most difficult days for anyone. I explained why I couldn’t be there, and stated the most obvious fact about my grandma: that I think, if we had been able to ask her, she would have told me to stay at home with my husband. Because although I loved my grandmother, there was nothing more I could do for her now. Because Marc was still alive, with a chance of survival, and he needed me. Because she was the kind of woman who would have completely understood. And as I wrote the speech I realised that, when asking all of the people around me, I hadn’t considered the opinion of the one person who mattered. And I don’t think she would have minded at all.

When I visited Marc on the day of the funeral, I talked to him about my grandma, Helen, sharing my memories of the woman I remembered her to be, and the woman I knew stories about from way before my birth. Exciting, romantic stories of her courage and bravery, of her coming to a strange new country to be with the man she loved, and forging a marriage which had spanned almost 50 years. Of bringing up four children, one of whom was my dad, a man I have the utmost respect and admiration for. I’m not sure if Marc listened or could remember any of what I said, but I tried in my own way to remember my grandma in the way I would have done had I been sitting in the church with the rest of the family.

I knew that I had made the right decision. That she would’ve approved of it. I hope she would have been proud of me, of the way I coped during a time of great stress and difficulty. Of the decisions I made and the way I tried to keep everything going. Perhaps she might have felt that I was a part of her and had in me some of the wonderful qualities that were an integral part of her character.

I truly hope so.

Literary Therapy

Many of my posts recently have involved how I was coping with the emotional and practical side of things while Marc was in hospital. And though that side of things is important when contemplating coping with a close family member being ill, the central focus should always be the person who is sick.

So back to Marc. As I have said previously, his condition after the initial trauma remained critical, but once the two emergency bowel operations were over and done with, it was definitely a case of wait and see. He wasn’t better, but he wasn’t as ill, and as the antibiotics for the Group A Streptococcus began to work, his body slowly began to recover from the Sepsis. And I do mean slowly. Day to day it seemed as though nothing was happening: Marc lay there in the bed next to the nurses’ station, tended to by a single nurse now, but one who was incredibly attentive and rarely left his side, an alarming amount of drips and machines surrounding his bed. He remained in the medically induced coma for several days, perhaps up to a fortnight, after the initial crisis, and there was little for myself, Linda and Matt to do but sit and wait.

Positive thoughts

We reacted to the waiting in different ways. Whenever Matt visited, he took to talking very quietly in Marc’s ear. I have no idea what he said. I have never asked him. Marc doesn’t remember either, except to know that his brother was constantly encouraging him with positive thoughts whispered in his ear, letting him know that we were there for him and that he needed to take his time, but to hold on, to heal. He called them his ‘Maff-vibes’. Maff is an affectionate nickname which he is alternately known by to close family and friends. When Daniel was very young, he used to call him ‘Uncle Maff’. The name implies a closeness and I think reflects the value of those positive thoughts he was constantly projecting into Marc’s consciousness whenever he was there.

I know I massively appreciated his presence. Linda did too. He always seemed so calm, so resolute, so determined that Marc was going to be ok, given time and patience. He was a rock to me during some very bleak hours, and whenever he had to return to Brighton for work I felt devastated. His boss had been understanding of what was happening, and agreed that he could work a full day Tuesday to Thursday each week and return to the North for a four day weekend to visit Marc and support the rest of us. This meant he was regularly undertaking the five hour drive from Brighton to Warrington, as well as coping with the stress and worry of Marc’s illness. I’m not sure how he did it. I will never forget the strength and peace he brought with him when he came, and looked forward to him being with us, as having Matt around took just a little bit of the strain away from me.

Bringing him back to us

The two women in Marc’s life, both book lovers, began to read to him. The funny thing is, he’s not that much of a reader himself, but I think it made us feel like we were doing something which might just be a little bit useful. Linda took a Douglas Adams Sci-fi book at first, and read it throughout her visiting sessions while Marc was in the coma. It gave her something to do, and even though the coma was medically induced and we knew it wasn’t something permanent, reading felt like it might bring Marc back to us, make him aware that we were all still here and cared about him. I suppose it allowed us to connect with him at a time when we both felt very separate and distanced from him.

Later on when he was conscious, but still couldn’t talk to us, Linda used to read him bits from the newspaper, keeping him entertained and informed of local and national events. It was difficult for us to find different things to read: we couldn’t really read him the same book because we would never be sure where the other one was up to. I also think our different relationships with him almost required a different reading matter, if that makes any sense. Perhaps we were taking a different tack in our efforts to help him recover: for Linda, the current affairs of the day, to keep him centred in a world he could not currently participate in. She reads the newspaper regularly, so it was a natural choice for her.

Escapism

For me, it was escapism all the way. I’m ashamed to say I don’t read a newspaper and am far more likely to be found reading something fictional than any kind of factual, real life events. My dad despaired of me all throughout my adolescence, as he tried in vain to get me to read a paper or watch the news. Even as an adult, I would far prefer to leap into a fictional world than engage in whatever depressing current affairs fill the news. I know this is a terribly irresponsible attitude, but I’m afraid it’s just me.  Anyway, in an effort to make myself feel like I might be helping Marc emotionally (as I was no help to him at all physically) I also wanted to try reading something to Marc. I’m an English teacher after all, and love to read aloud to people. Marc is not really a big fan of fiction though, and I had no idea what, if anything, he would be able to take in, so I eventually settled on a Charlie Brooker book called ‘I Can Make You Hate’.

I chose this because I knew Marc was a fan of Brooker, and found him funny. I wanted to read something comic, but also something which could be read and understood in small chunks. The Brooker book was just that – short anecdotes written about various televised political or social events with an acerbic commentary by Brooker. It was funny, and sometimes had me laughing out loud in the ward, but it was also extremely rude in parts, and full of swear words. I found myself having to hush my voice or stop reading certain sections due to the language or content, becoming very embarrassed when the nurses were around. I’m sure they had heard far worse, and wouldn’t have been particularly bothered about the content, but I felt extremely self conscious, and often paused in my reading until the nurse or doctor had passed me by. It seems ridiculous to remember it now, my embarrassment, but looking back, this is perhaps one of the more affectionate memories I have of Marc’s time in ITU.

Developing communication

As he became more conscious, I knew the reading was helping him, because he was more able to respond to me. I’m jumping ahead quite a bit here, because there is more to tell you about Marc’s level of consciousness increasing later, but for now understand that, over time, he became able to communicate with us in the simplest of ways. I would ask if he wanted me to read to him and he was able to use his hands or occasionally move his head in a slight nod of assent if he wanted to be read to. The chunks of text which made up the different anecdotes were usually between two and four pages of the book, so I would read one, then ask if he wanted to listen to another. He became quite adept at holding up two or three fingers to indicate how many more sections of the book he wanted to listen to, and I was well used to checking with him how much more he could cope with.

Because at that point he could only cope with so much. Mentally, he was clearly going through a lot: the chaotic dreams; the vague awareness of his condition, but no real understanding of what had happened to him; the frustration of being unable to move, speak or even breathe without the assistance of machines; it must all have been quite mind blowing. I cannot even begin to imagine what it was like waking up in an alien place with no real way of asking questions about what on earth was going on. So in terms of understanding the stories in the Brooker book, it really was a case of what he could manage, depending on how tired he was and how much of his energy that day was taken up by him struggling to heal.

Music therapy

The other thing we tried once he was more conscious was music. Anyone who knows Marc understands what music means to him. Music is to Marc what books are to me. He listens to a wide range of styles and has been a successful house music DJ in his time. So music, I thought, would be something he would find comforting, familiar, helpful. I enlisted the help of his best friend Mark here: the two of them were DJs together for years and he has far more of an idea of the types of tunes Marc likes to listen to. He was a complete star, again I think glad of something he could do which would be helpful.

The day after I asked him, he came to the hospital with his iPod loaded up with tunes that Marc loved. We put some headphones on Marc and pressed play. I think the first tune on the iPod was something from ‘A Tribe Called Quest’, though don’t ask me what. I’m not sure what we expected to happen. I think perhaps we were waiting for the old Marc to leap up from the bed, invigorated by the familiar music, and be magically well again. I’m sure reading this you think that sounds ridiculous. It is, of course. In fact Marc dutifully lay and listened to the music for a couple of hours (he didn’t really have much choice in the matter), but when he was asked if he wanted to listen to more later, he indicated that he didn’t want to.

Cut off from the world

The iPod lay unused for a week or so before Mark took it away. I couldn’t believe that he didn’t want to listen to music, because I can’t stress enough how much music means to him. But he simply couldn’t cope with it. Maybe it was the additional wires from the headphones, which must have felt just like one more tube amongst the many which were connected to Marc’s body to keep him alive. Perhaps he felt so removed from the world that blocking off his hearing meant he was even further cut off. I don’t know. I only know that he rejected the music, the same way he rejected the iPad later on when he would have been able to hold it. His recovery was so demanding, so all-consuming, that he simply could not deal with any extra stimulus that taxed his brain.

So I continued to read to him. I eventually stopped once he could talk to me again. That was over a month later. After that, the Brooker book lay unfinished for a long time. I’m not sure we could cope with the hospital associations it brought, but in the last year I know that has Marc picked it up, worked out where we were up to and finished the whole thing. I think he felt he had to, it was a kind of personal goal.

As for me, I’m not sure I will ever read any of it again.

It’s all about the Money

If thinking about contacting friends to let them know about Marc’s illness was difficult, starting to consider the financial side of things was even more of a challenge. The last thing I wanted to do was look at bank balances or insurance policies. But I quickly realised that facing this kind of thing was important.

I began by speaking to Marc’s boss again. Richard was lovely, considering I had never met him, and expressed nothing but concern for Marc and I, telling me not to worry about work at all. He did put me in contact with a woman from the HR department at the BBC, and she and I began to email one another and have some conversations over the phone about where Marc stood in terms of work.

Finding out what the future held in terms of Marc being seriously ill and potentially, though I don’t like typing it, dying, was imperative. We did have wills, but they had been written years before our marriage and the birth of our children, when we had first bought a house together, and simply stated that if either of us died, all our possessions would go to the other person.

Unexpected catastrophe

I knew that Marc had life insurance that would at the very least pay off the mortgage, and some kind of additional sum, but I had no idea how much that would be. I also knew that the BBC would pay out an amount in the event of Marc’s death, but again, I was pretty hazy on the exact figures. You don’t imagine, at the age of thirty seven, after only eight years of marriage, that you will have to face this kind of catastrophe.

The call to HR told me that Marc was entitled to three months of sick pay, because he had been working at the BBC for less than two years. This was a concern, because even though he had only been ill for a matter of days, his condition was so severe that even if he did fully recover, it wouldn’t happen quickly. The HR manager was extremely supportive however, and told me just to keep in touch in terms of Marc’s condition, and we would reassess the situation later on.

She also referred me to a company which the BBC worked with who would possibly be able to help me with more of the financial and practical things as Marc’s hospital stay continued. All I had to do was get regular doctor’s notes from the hospital to cover the official requirements Marc’s illness triggered with his place of work. This was not too large a chore, and the ITU nurses (as usual) were so helpful in tracking down the extremely busy ITU doctors to sign the appropriate form for me.

Insurance policies

The previous year, our current mortgage term had ended and we had remortgaged the house with the advice of Danny, a friend of mine’s father. He had also helped us to organise the relevant insurance policies to cover the mortgage, and advised us on other policies we might have in place. Prior to this, Marc and I had never had any Critical Illness cover, believing it to be irrelevant and unnecessary while we were young and fairly fit. (How wrong we were!) However, we had decided to take out some Critical Illness cover to give us more security now we had two children to consider as well as ourselves. Danny got in touch as soon as he heard about Marc’s illness, and immediately offered his help in sorting out any financial form filling or contacting insurance companies regarding any payouts.

He reassured me that, should it be necessary, he would take care of contacting the insurance company for me. He also, extremely helpfully, knew the exact terms and conditions of the policy, and said that we were entitled to a small amount of hospital cover. This meant that for every day that Marc was in hospital, we were able to access an amount of money to cover costs like travel to and from the hospital for visiting, car parking fees (I ended up with a kind of ‘frequent flyer’ pass for Warrington Hospital car park I was there so often), childcare costs and all the small amounts which are associated with having someone close to you in the hospital for a prolonged period of time. Arranging the amount relied on more forms being filled in, but Danny accessed and printed them for me, as well as helping me to fill them in correctly. All I then had to do was ask a doctor at the hospital to fill in a section for me.

Feeling guilty

This form was larger than a simple signature on a sick note, and I felt awkward asking for anyone to take time out of their busy routine to complete it. In the end I asked Laura, the female doctor who had been one of the first to deal with me, and fed back to me after Marc’s initial operation. She was very approachable, young and friendly, and despite me feeling guilty for making such demands on her time when she had so many sick people to care for, was happy to help me in any way she could.

I gave her the forms when I saw her close to the start of a visit, and she brought them back to me before I left. I suspect she filled them in during her break. She seemed keen and happy to help me in any way she could, and I think it was because she felt relatively helpless in the traumatic situation I found myself in. Once Marc’s life had been saved, his recovery was slow and arduous, and nothing could be done to speed it up. Again, I found that Laura, like so many others in the hospital, wanted to do nothing more than help me out in any way possible during such a difficult time.

I didn’t let myself think ahead too much. My good friend Clare recently told me how scared she was for me during those first few days, believing that Marc would die. How she couldn’t concentrate at work for worrying about what would happen to me. How her boss let her take some time off and she spent it scouring the internet for advice on what to do to help. She even went as far as to call the Citizen’s Advice Bureau to ask what rights and benefits I would be entitled to if I suddenly became a widow. I cannot express how moved I was when I realised she had done that for me.

Ongoing health problems

Thankfully she didn’t have to support me through Marc’s death. But there were other worries though, ones I didn’t even want to contemplate in the midst of all the chaos. Ones which, looking back, might have paralysed me with fear. The possibility that Marc would survive, but have massive ongoing health problems. Have to have limbs amputated. Be constantly fed through a tube. Have ongoing mobility problems, the cost of which might well have been huge.

And while Marc does have ongoing issues, thankfully in the long run they have not been horrendous. We have coped. They could have been much worse. But what we have been through to get to this point has been extremely difficult. I’m glad when I look back that going into Marc’s recovery, I knew nothing of what we’d have to cope with. Because I’m not sure I’d have been able to cope, knowing. But, not knowing what was ahead, and taking one day at a time, I did cope.

Fully functional

Somehow I found the strength to get on with organising  things. The cooker had broken the week that Marc became ill, and where I would usually have left it to Marc to sort it out, I surprised myself by calling a local repairman we’d used before, and the cooker was fully functional again by the following day. I have a minor phobia about phone calls: I detest calling people I don’t know. I have been known to postpone calls to the bank, the estate agent, the insurance company, even a takeaway, and wait for Marc to do it, simply because I hate beginning a conversation on the telephone and often find I get completely tongue-tied.

It’s a ridiculous fear, I know. I’m quite a confident person generally. People who know me might well be surprised to discover that such a tiny, insignificant thing as a phone call makes me so nervous. But it’s the truth. At such a stressful time, however, when Marc’s life was at risk and things were truly terrifying, a simple call to a tradesman didn’t seem so daunting. And, let’s face it, I had no one else to do it for me. So I just got on with it. Sometimes I feel like the most traumatic situations can bring out the best in people. Somehow, you are just able to cope, because you have to.

No choice

So many people have told me since Marc’s illness how strong I am, how well I coped, how I am (I hesitate and cringe as I type this it makes me so uncomfortable) inspirational. I say this not to brag, because I don’t see myself like that at all. Because I truly feel like, if it happened to you, you too would find the strength from somewhere to cope. Because you wouldn’t have a choice.

Perhaps if I had not had the children, if Marc and I had been simply a couple with no one depending on us, I might have behaved differently. I might have fallen apart, sobbing into the sofa night after night. But that simply wasn’t an option. There were two children who needed me. Children who I didn’t want to frighten. Who I had sworn from the moment of their birth to protect. And protection, in this case, meant carrying on in as normal a manner as possible, so as not to terrify them. Which meant hiding how terrified I was.

I couldn’t allow myself to sink into a pit of depression. Ignore and neglect Daniel and Amy while I spent hours weeping at Marc’s bedside and shouting curses at the sky. So I got on with things, taking one day at a time. And I firmly believe that if you found yourself in a similar situation (and I sincerely hope you never do) you would too.

Passing on the Message

The more I write about the period of Marc’s illness, the more complex my thought patterns become. What started off as a simple chronological account of events has begun to sprawl in my mind. I find myself recalling little things which happened in the early days of Marc’s hospital stay that have been missed out of this blog, because I had forgotten about them until recently.

But that doesn’t mean that I should leave them out. Even though I have moved past them now in terms of my more recent posts, I still feel they warrant inclusion, as every detail of that time seems important to me. There are new details I remember each week which I marvel at, and want to incorporate them in this increasingly complicated tale which describes the most difficult period of my entire life.

Camping

For example, as Marc was first admitted to hospital on Tuesday 24th June, we were due to go camping with friends the following weekend. A large group of our friends, many of whom Marc has known since his university days, go on a weekend’s camping at Shell Island in Wales every year. We had never managed to join them before, the years leading up to this point had been busy with Daniel’s birthday celebrations as he was born in June, around about the date they always go. That year, we were determined to make it. We’d bought a family sized tent (previously we’d only had a small, two-man affair, not being huge fans of camping) and had even gone as far as to purchase some airbeds and junior sleeping bags for the children.

It seems ridiculous now, but even as Marc was in hospital on the Tuesday, I went out and bought a camping stove for our trip, fully believing that Marc would be well and home again within a matter of days. Now, I thought, I would only need a bottle of gas for the stove, and I was determined that when Marc came home I would have everything bought and packed up ready to go.

To this day, I have never bought gas for that stove.

Life-changing event

But with Marc’s situation becoming critical, it actually got to the Thursday before I realised that I needed to let them know that the Littlemore family would, yet again, not be coming on the trip. Informing people of such a life-changing event is complicated. Some of the people we know did not find out about Marc’s illness for weeks. A few didn’t actually realise anything was wrong until he was finally out of hospital three months later and we announced his homecoming on Facebook: the first positive announcement we’d felt able to make so publicly.

It’s funny, but over the course of a lifetime we meet so many different people, and over more than thirty years Marc and I had been lucky enough to build a wide circle of friends from different places: school, sixth form, university, work, hobbies… the list goes on. As the years pass, our relationships change, some remaining closer than others, and inevitably we would see some of our friends on a regular basis, while others we only saw from time to time. This meant it was totally possible for us not to hear from some people for a couple of months.

Overwhelming

In terms of a huge life event then, immediate family and friends know what is going on first, then work colleagues – a strange one, because you might know them far less than others, but you can’t hide an absence from work without explanation. After the essential people know what’s going on, it becomes more complicated. But by the second and third day of Marc’s illness I was beginning to realise that someone needed to let other friends, ones who perhaps we saw less regularly, know that Marc was in a such a critical situation. They cared about him and deserved to know what was going on. But facing the sheer number of people who I would need to contact was overwhelming.

Like I said earlier, at this point I was pretty much completely avoiding Facebook, and didn’t post anything on it the whole time Marc was in hospital. I’m not one for posting the minutiae of my life anyway, and my posts are largely positive, celebrating happy moments or perhaps commenting on or sharing articles I find interesting which are posted by others. I certainly wasn’t going to post on Facebook about the devastating events that were happening to my family. I don’t even know how I would have gone about composing such a post. I also didn’t want people I hardly knew to find out about the situation before potentially close family and friends were aware of it.

A phone tree

But I couldn’t face phone calls either. Between sorting out the children, visiting Marc and dealing with my own emotional state, the days were difficult enough. Phoning numerous friends with such upsetting news and dealing with their potential reactions was something I didn’t relish. So I delegated.

Not intentionally at first. In terms of the Shell Island weekend, I sent a text to Chris, one of Marc’s closest friends, on the Thursday. It was to the point and simply explained what had happened, and that we would not be coming on the trip. He responded with the utter shock and disbelief I was becoming accustomed to, and immediately asked what he could do.

Without thinking, and knowing the party going camping to be a large one, I asked if he would pass on the message about Marc’s condition to the rest of the group so I didn’t have to. He agreed, and so our ‘phone tree’ was born. In the weeks following Marc’s initial illness, I would send Chris regular texts, filling him in on what was happening. Throughout this time, he faithfully forwarded my messages to upwards of twenty people, saving me an awful lot of time and stress doing it myself.

The benefits of text messages

In most of my communication from this point onwards I resorted to text messages, which are so much easier to compose and also ‘copy and paste’ from, as my communication of choice. I would construct a general update every day, which contained the  medical facts of where Marc was up to, his treatments and how he was responding, the levels of support he still needed and so on. Then I would take this core message and, adding various comments at the beginning and end of the text depending on who it was intended for, send it out to whoever needed to receive it: my parents, close friends, whoever had messaged me that day to ask how he was.

If the text was meant for someone close, I might add some comments about my own state of mind that day, how I was coping, what I was thinking. A more distant acquaintance would simply get a pared down version of the facts. And those I had spoken to very recently received only the most up to date information, as they already knew most of the content. It sounds really callous now, thinking about sending almost a blanket text to people, but it was the only way I could cope at the time, and saved me so much time each evening, when the job of replying to messages had become almost hour-long.

A vital support network

Thankfully many others offered to take up the mantle of keeping everyone informed about Marc. My parents kept their respective sides of the family up to date with how Marc was, and Linda did the same with her family. One of my university friends did the same with that branch of people, and work colleagues did the same.

One of the most remarkable information systems was that of my drama group. I was in constant contact with Clare, one of my closest friends, but what I didn’t realise at the time was that every Tuesday, during the regular announcements at our regular musical rehearsal, Dan (Clare’s husband) was giving the entire company of Annie Get Your Gun an update on Marc’s condition. When I found this out it floored me. The fact that so many people cared so much about us that it was necessary to make a weekly announcement was so touching. But they did.

Eternally thankful

I am eternally thankful for those people who realised how difficult it was for me to keep in touch with everyone we knew and offered to be a branch in a phone tree letting everyone who cared about Marc know how he was. I’m also sorry that there were some who, when we announced on Facebook that Marc was finally home from hospital, contacted me in horror to say that they’d had no idea he had been ill, and why hadn’t I let them know, as they would have been there to support me. The simple answer was that I couldn’t have coped with contacting any more people than I already had to. That I didn’t doubt that they would have been there for me had I asked for help, but that for whatever reason I hadn’t contacted them, not letting them know was not a purposeful slight against them.

But as a huge network of friends, old and new, young and not-so-young, near and far, found out about what was happening to us, their reactions began to filter back to me in a variety of ways. I have already mentioned those who offered to give the children lifts to and from various clubs and take care of them while I was visiting the hospital. Others sent gifts of activity books and sweets for the children, perhaps realising that I would need as much help as possible entertaining them during Marc’s absence, my mind occupied with other things. I received texts and cards with offers of help with the grocery shopping, mowing the lawn, cleaning the house even. And a number of friends sent me prayer cards, telling me that we were in their thoughts and that they were constantly asking God to help us. I cannot express how much I appreciated all of this support. It got me through what was the darkest of times, and it meant so much to me that so many people cared.

Avoiding camping

Needless to say, we never made the camping trip. We have still never been to Shell Island, but I hope that one day we will. Recently though, it was Daniel’s ninth birthday and we used our tent for the first time, camping in the garden with the children overnight. It was fun, and made me think one day we will be able to manage family camping holidays.

And now Marc is better and it’s ok to joke about it, many of his friends like to remark on the lengths he is prepared to go to to avoid going camping with them. I’m always grateful that we can finally find humour in the situation.

Life Goes On…

As Marc’s second week in hospital stretched on, real life began to intrude. I considered work. As a teacher, I only had three weeks to go until the summer holidays. One evening, two of my colleagues (and friends), Catherine and Kate, came round to see me, extremely concerned. They brought cake, I think, homemade if I know Catherine, and both enveloped me in their arms as soon as they came through the door. Not a simple ‘nice to see you’ kind of hug. An intense hug which lasted several seconds and tried to convey their care and concern for me, their wonder at how I was holding it all together (sometimes I wasn’t), and their despair at having no real idea of how they could possibly help me through this.

The children were already in bed asleep and we settled on the sofa to talk. I remember how shocked they both were: the genuine horror they felt about my situation was evident every second they sat with me. Seeing work colleagues had brought my mind back to my absence from school. Prior to their visit, I think I had been considering work I could potentially set for my classes, or even the possibility of going into work the following week, at least during the mornings, and teaching, but leaving my classes after lunch to go and visit Marc. I know I was trying to figure out how I might manage work with Marc in hospital.

A huge relief

Catherine, who always tells it like it is, made an off the cuff remark soon after arriving, “So you’re not coming back ‘til September then.”

And that was that. She was right. No one expected me to be in work with Marc in his current situation. She wasn’t asking a question. It was a simple statement, which had been obvious to everyone else except me. How could I go in to work with Marc so very ill? It was a huge relief, both accepting that I wasn’t going to be able to work for a while, and admitting that, actually, that was ok.

With that decided, I spent some of the evening making a note of where every class was up to and what they needed to cover by the end of the year. Thankfully, my year 11 exam classes had all left, having completed the course and their exams, and the rest of my groups were mostly in ‘wind down’ mode for the summer holidays. Otherwise I’m not sure how I would have felt about leaving them all and I’m not sure what would have happened. I certainly wouldn’t have felt good about leaving them if it had happened before the exams.

A Godsend

I also have no idea what I would have done in any other kind of job. Teaching is a full-on, tough career which demands plenty of its employees. But it did mean I had 6 full weeks with no physical work required of me. No actual place where I needed to be each day. No classes needing supervision. No lessons needing to be planned. Few books needing marking. I may have been pencilled in to write a new scheme of work that summer, I can’t remember. I was certainly in no state to start creating a unit of work at that point. Perhaps some other lovely soul undertook the responsibility to do it for me – I honestly don’t know.

There were few things to be thankful for in my situation, but my job, and the six week hiatus I had from work, were Godsends I was hugely thankful for. I made the all-important phonecall to my head teacher the following day and she was hugely supportive, immediately confirming Catherine’s assessment that I was not expected back before the summer holidays, and that I wasn’t to worry about anything. It was called ‘Compassionate Leave’, and if anyone had ever qualified for it, I did. I hung up the phone feeling that at least I didn’t have to concern myself with work for the foreseeable future, which was a huge relief.

Support and sympathy

But back to my friends’ visit. During our conversation I found myself recounting what had happened to Marc in detail, from start to finish. I did this a lot during the first few weeks of Marc’s illness, in fact, I’ve been doing it ever since, whenever we meet anyone new who knows nothing about it. I actually found it quite a release to tell the whole story. Perhaps it was getting the events in order in my own head. Being able to rationalise what had happened properly. Or simply the support and sympathy provided by Catherine and Kate, who listened, incredulous, and confirmed that it was completely ok for me to be falling apart a little bit under the circumstances. I don’t remember crying though. At least, not in front of them. We shared several cups of tea and they just listened to me talk.

Many friends did this for me. I think it was the best support anyone could provide for me at the time. Around 8.30pm, once the children were asleep, someone would arrive at my door simply to sit with me and talk; share what was going on; allow me to air my anger and fear and frustration; occasionally watch a mindless dvd which required little concentration. It was exactly what I needed to fill the emptiness I felt once visiting was finished for the day and the children were in bed, and I had nothing else to fill my mind but fear. Once they left, I would go upstairs and check on the children, call ITU for the usual ‘He’s just the same as he was when you left him,’ conversation, and then go to bed. I did actually manage to sleep usually, which was another Godsend. I know of a lot of people in similar situations who can’t sleep, and this must make things seem a whole lot worse.

Many friends brought gifts, generally of food. To begin with I found myself unable to eat it. I remember cutting up slices of cake brought by one friend as a gesture of support and comfort. My own slice was still sitting on my plate, a single bite taken out of it, when she left. She didn’t bring any the next time she came, realising that I couldn’t cope with eating more than what would sustain me at that point in time. She knew instinctively that what I needed was company (and copious amounts of tea). I massively appreciated these friends, who worked out what I needed the most and provided it without expecting anything in return. I hope I can repay them someday.

A one-sided conversation

Although I was in a constant state of fear and worry, visiting Marc at the hospital became routine, and because I was in ITU for hours at a time, sometimes twice a day, I found myself with nothing to do. Hospital visiting is dull. You have nothing to talk about, you can’t go anywhere. The patient has done nothing other than have various medical procedures and, in my case, couldn’t even reply to my questions, so the conversation was massively one-sided. Also I had absolutely nothing going on in my life. Everything had stopped, barring hospital visiting and keeping the children going. So I had no other topics of discussion other than the kids’ activities and Marc’s current medical condition. And they soon ran out.

I began to build in little tasks to pass the time. I’ve already mentioned crossword puzzles, though once Marc began to be more awake during my visits it seemed rude to ignore him in favour of a puzzle book, so I didn’t do much more of that. I spent two entire days during visiting filling in my Hound of the Baskervilles director’s script with all the notes on my intentions for the play, ready to pass over to my successor. Life was going on as normal for other people and Clare had been busy finding a replacement so the play could go ahead.

Relief and Guilt

A director from another company had kindly agreed to step into the role in my absence. This should have been heart breaking, passing over all my plans for the play, the cast and the way I wanted it to take shape on the stage. In truth with everything that was going on, the play was the least of my worries and I was glad of the distraction during those two sessions, when Marc was still in the coma, which kept my mind from dwelling on morbid thoughts. As with work, I felt extremely relieved once I gave up the additional burden of responsibility and was more free to focus on Marc and the children.

I did feel very guilty though, and I spent time writing a letter to my cast. There were ten roles in the Hound of the Baskervilles play, and I had cast ten actors in the different parts only three weeks earlier. We were half way through setting Act One Scene Three when Marc became ill, and I felt very much like I was abandoning them. I knew in reality that they all understood, but still I felt the need to explain to them in my own words the reason behind my sudden absence. The letter was another task which took up some time during a lengthy visiting session where Marc was completely out of it.

Another thing which often occupied me for at least twenty minutes during visits was my constant interrogation of whichever poor nurse was on duty that day. I would ask question after question until I was satisfied that I had been given a full update and had all the information that was possibly available to me. This could take a while, between the nurse doing Marc’s regular checks and carrying out the different medical procedures he required throughout the day, and definitely made me feel better.

Helplessness

I think my overwhelming feeling, aside from fear that Marc could potentially die at any given moment, was that of helplessness. I had no idea what I could do to help my husband; in fact there was actually nothing I could potentially do at this point. And I hated it. There is truly nothing worse than knowing someone you care about is in trouble and there is nothing you can do to help or assist them. I firmly believe that, by finding out as much as I possibly could about his situation, I felt more involved with his recovery, like I could somehow be of some help to him. In reality, I was no help at all and possibly even got in the way at times.

There was nothing much more for me to do during visits, except stare at the constantly fluctuating numbers on the monitors above his bed. Blood Pressure. Heart Rate. The levels of support being given to Marc by the ventilator. I became a bit of an armchair expert about expected levels of blood pressure and what an acceptably ‘normal’ heart rate was for Marc. I spent entire visits in the early days familiarising myself with what the levels should look like, and then watched them eagle-eyed for any changes, haranguing a nurse about potential reasons why they might to be lower or higher than normal for Marc on any given day.

Neverending red alert

I do not have the words to express my constant state of fear in those early days. Having seen him almost die, I was on a never-ending red alert, convinced if the monitors showed a faster heart rate or lower blood pressure than normal that I had to let someone know immediately, or he might die that very instant. Anyone who has ever experienced a close relative being in a dangerous situation will understand what I’m talking about. Trauma makes you scared of what could happen, and at times it is difficult to return to that old, comfortable state of being where you never imagined anything so awful could happen to you. It is an exhausting and emotionally draining way to live, and took me a long time to shake.

I’m happy to say now that, as life returns to something like normal, I feel that level of worry less and less. Looking back now it is an intense relief to no longer feel that way, because it was my ‘go to’ emotional state for almost a year after Marc’s illness. At times I felt I would live the rest of my life in a constant state of terror. Thankfully, that is not the case.

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.