Comfortably Numb

I don’t remember a lot about that evening. It was a Monday, which meant no clubs for the children – it’s our one free night where there is no Beavers, football, swimming, taekwondo, ballet… I must have collected the children from after school club and explained to them that Daddy was in hospital where the doctors could keep a close eye on him. I think I tried hard to reassure them that it was all going to be ok. But to them ‘hospital’ meant nothing. They accepted what I said completely and without question: Daddy was being looked after and would be home with us again soon.

Children have no option but to accept what they are told. Their main source of knowledge is their parents and if they are told by them that chocolate tastes disgusting and have no one contradict this fact, they will believe it. I’m a great believer in telling children the truth and explaining things properly to them, not babying them or sugar-coating the facts. I probably spent a long time that evening explaining that Marc was weak from not eating for days. Telling them about the drip the doctors had put him on, which was restoring him to health. I’m not sure how much they took in, but I do know that neither of them got upset, as I thought they might. I said Daddy was away for a couple of days and would be back good as new very soon. They simply accepted it.

I wasn’t so sure.

I got up the next day and took the children to Link Club before school. This was usually Marc’s job, but that day I took them for the first time ever. I called work and told them I was coming in, but might be a bit late, due to having to drop off the children. I also asked if I could leave early (I had a free period towards the end of the day anyway) and go to visit Marc in the hospital. Colleagues asked why I was coming in at all, but to me, staying off would have been like admitting that something was seriously wrong, and I didn’t want to do that. Also, being in work would take my mind off Marc for the time being, and I welcomed that.

Shocked

I taught all day, although I’m not sure how well, and spoke to a couple of friends at work about Marc. Most of them were shocked that he was in hospital. I remember playing it down, again refusing to give my fears credit. Instead, I constantly repeated the mantra: he was only there to have fluids. He would be home again soon, right as rain, in a couple of days. How wrong I was.

I left work around lunchtime and drove straight to the hospital. Visiting time was something like 3-4pm, and I managed to get there in time to spend the whole hour with him. And what an hour it was. I had hoped that I would find him sitting up in bed, with more colour, telling me that the fluids had done their job and he was on the road to recovery now.

Severe pain

Instead I faced a man who still had constant sickness, though he hadn’t eaten anything to actually throw up any more. A man with a bedside commode which he was using because he didn’t have the strength to get to and from the toilet further down the ward, and because the staff didn’t want him infecting anyone else with his mystery illness. A man who was on morphine.

Morphine. Now I’m not a medical person, and my first thought when Marc told me that he was on morphine was that it was used as a painkiller when people were dying and there was nothing that could be done other than to reduce pain levels and make them comfortable. This was terrifying. I didn’t really understand at the time that morphine was used as a painkiller after operations or when someone’s pain required a stronger drug. The one thing I was sure of was that morphine was powerful, which had to mean that Marc’s pain was severe.

Hallucinating

It also made him have a form of hallucination where he believed things that were blatantly not true. That couldn’t be true. But he was utterly convinced that they were. He spoke to me half way through the visit about the child of a friend of ours, a boy just a few months younger than our own son. He was convinced, he told me, that he had been in a terrible road accident and was seriously injured or dying. I have no idea where he got this from, and to this day don’t really understand it, but he was so convinced that it was true.

He insisted quite forcibly that I get on the internet and Google the child’s name, and only when I had shown him that there were no reported accidents on the news websites of this terrible crash, would he let it rest. This was extremely odd behaviour, and coupled with the fact that he was occasionally still being sick and could not tell me what the doctors had said to him, made my concern increase. He couldn’t tell me anything, other than the fact that the doctors had decided to keep administering fluids and to give him morphine for the pain. He didn’t seem to have any idea how long they thought he would be in, or what was wrong.

Making themselves scarce

The frustrating thing about visiting time is that the doctors are not present on the wards, having done their rounds prior to visiting, and the nurses also make themselves scarce. They do this to allow families spend time with their loved ones without interruption, and probably to have a quiet hour where they can catch up on paperwork and perhaps have a cup of tea and a little peace. General wards are hugely understaffed – usually one nurse is in charge of two bays of patients with six patients in each. Twelve people. That’s a lot for one person to take care of. So any ‘down’ time they might get is hugely appreciated. And actually I don’t believe for a minute that they sit with their feet up drinking a cuppa during visiting hours.

Why am I telling you this? Well because that day I needed to speak to someone. A nurse. A doctor. Anyone who might fill me in on what was actually wrong with my husband. But there was no one to be found. I was determined not to leave without speaking to someone, as my worry was quickly turning to fear. Eventually I found one of the Health Care Assistants, who pointed me in the direction of the ward sister.

I found her attending to a patient at the other end of the ward and had to wait about another fifteen minutes until she was finished and could talk to me. I explained who I was and asked what the diagnosis was for Marc. She took me to one side and basically said that he had been in a lot of pain, hence the morphine, and that he had a constant temperature, but that despite sending off bloods for investigation, the doctors still had no idea what was the matter with him.

Fear began to turn to terror as I realised that the medical staff at the hospital (the ones I had had faith would know what to do to help Marc) were actually completely stumped as to the cause of his illness. The look on the sister’s face was not comforting. She clearly didn’t want to alarm me, but her expression showed me how concerned she was that she had a very sick man on her ward with no real explanation why. She almost looked as though she pitied me. I asked what would happen next, and she didn’t really have an answer.

Listless

I felt guilty taking up so much of her time and also worried that I was still on the ward long after visiting time was finished. Not knowing what else to do, I told the sister that I would return for evening visiting at 6 and bring the children with me. She managed a weak smile as I left but it didn’t give me much comfort. As I passed the door to Marc’s little room I could see him, pale and sweaty, lying listlessly on the bed. I think I tried to wave at him but can’t remember if I got a response.

For the second time in two days I walked away feeling as though I was abandoning him. The situation was beginning to feel nightmarish: I just couldn’t see where this was all going and felt extremely helpless. Thoughts crowded my head as I left, all jostling for pole position.

You can’t treat an illness you don’t understand. If the doctors didn’t know what it was, how were they going to manage to treat him for it?

Difficult to admit

That day felt like the longest day ever. We sat for an hour in A&E waiting to be seen. To be fair to the staff at the hospital, it was only an hour – like I said the doctor’s letter went a long way towards cutting our waiting time. But Marc was in such a bad way that by the time his name was called I was ready to scream.

He saw the triage nurse first, who took his temperature, blood pressure and did some other preliminary tests. I can’t actually remember what they all were, I just remember her asking what was the matter, and reading the doctor’s letter. She seemed to be taking us seriously, and I again felt vindicated: we weren’t making a fuss over nothing. He was ill!

Imposter’s Syndrome

I have often thought that both Marc and myself suffer from Imposter’s Syndrome. Good old Wikipedia definition? “Despite external evidence of their competence, those exhibiting the syndrome remain convinced that they are frauds.” In our case at the hospital, we felt as though people wouldn’t believe that Marc’s illness was genuine. We worried that someone might challenge us, express doubt at our appearing in A&E on a Monday morning with a simple case of gastroenteritis.

One doctor did actually ask, almost accusingly, why we had come to A&E with a stomach bug. As he examined Marc he couldn’t seem to find anything which suggested that Marc had anything other than sickness and diarrhoea. I think the only reason he admitted Marc was to administer fluids, as he could see that he was weak. Whatever the reason, I’m glad that despite his doubts he saw fit to find him a bed.

Grateful for the privacy

It wasn’t an easy day though. Firstly, and I believe this was the reason for the accusatory question, if Marc had a stomach bug then it was probably contagious and we were in a hospital full of sick people. Sick people who didn’t need to catch a stomach bug. So we were bundled into a private space at the rear of the A&E department. A tiny room with no windows which was separated from the rest of the beds in A&E by a wall and a door. It had its own bathroom and I remember at first feeling grateful for the privacy, until I realised they were keeping us away from the other patients.

Marc lay on a trolley-style bed which was far too short for his 6 foot frame. He was in pain and needed to lie down, but the bed was not comfortable and I remember him constantly moving around trying to find a position in which he could feel at ease. The doctor who examined Marc was very over-cautious, wearing a face mask and an apron. It made me feel guilty, like we had contracted some horrendous disease and were purposefully trying to spread it around the hospital. I think the doctor was probably just following protocol, but at the time it seemed very clinical and only added to my fear.

Waiting for a bed

The nurses were less judgemental, and far more sympathetic to Marc’s pain and my increasing sense of anxiety. They introduced themselves and came to check on Marc as often as they could. However, far from hospital proving to be the answer to everything, so far it had been stressful and tiring. It also seemed lonely. In between the short visits from various nurses to check on Marc, there was no one around and nothing to distract us from the pain he was suffering from. Someone set up a drip and Marc began to receive the fluids I was hoping so desperately would help him, and they may have given him some painkillers too. We were told he would be admitted, but they were waiting for a bed. It took longer because they needed a bed which was isolated – in a room on its own – so that Marc couldn’t infect anyone else.

Eventually I left the hospital to go home and gather some things for him. If he was staying, he would need an overnight bag. Again I was torn by a desperation to leave the tiny, quiet room where there was no one but myself, an increasingly sick man and the feeling that I might be going mad, and the relief I felt at being able to leave the hospital, even for just a little while.

A complete blur

I went home and packed Marc a bag. I can’t really remember what else happened. I must have done all this before the children needed collecting from school. Or perhaps I arranged for Marc’s mum to get them. I honestly don’t know. A lot of it is a blur, but I remember driving back in to see Marc to find he was about to be moved as a bed had become available. I suppose this was some time around mid-afternoon. Marc seemed no different really. He did speak to me and was still on the drip, but I don’t recall us having a particularly detailed conversation. I think it mostly consisted of me trying to reassure us both that now he had the fluids and a room for the night where medical staff could keep an eye on him, everything would be ok.

After another short wait in the room-from-hell, a porter came with a trolley and transferred Marc on to it. I followed with the bags as he wheeled Marc along corridors and into a lift. We trundled along, attempting to make small talk and joke with the porter, and a short time later arrived in a general ward where Marc was settled into a bed in a small single room. I made sure he had everything he needed unpacked and tried to make him comfortable before leaving to get the children.

At around 4pm, with the visiting hours for the ward clutched in my hand, I left for home. I walked back slowly back to the car, unable to shake the feeling that with every step away from the hospital I was abandoning him.

Waiting

The hospital is not far from our house – around 15 minutes with no traffic. It shouldn’t have been a difficult journey really. Marc and I went home from the doctors and gathered a few things (well I gathered a few things – he was incapable of doing much at all). We spoke to Marc’s mum, who had come over to see how he was. I tried to reassure her that the hospital was what he needed and things would get better once he was treated there. Then we set off.

Speed bumps

I remember every speed bump caused Marc pain. It sounds ridiculous, but there are several along our road, and even driving at the pace of a snail made him cry out. He didn’t speak much, just moaned every now and then. I think I tried to chat to him, reassuring him that the hospital was where he needed to be, and once we got there things would be sorted out quickly, so he would feel better and we could bring him home. I think I was more trying to reassure myself. This man slumped in the car-seat next to me was not my husband. He was in agony and there was little I could do to help him.

Reaching the hospital, I paid for the car park and we got ready to walk to Accident and Emergency. It wasn’t far, maybe a minute’s walk from the car park, and I didn’t for a moment consider parking up outside on the double yellow lines or in the ambulance bay. When Marc tried to get out of the car however, I did consider going to ask if there was a wheelchair I could use. I mentioned this to him and he dismissed the idea, typically. Instead, I supported him under his arm and together we limped towards the emergency department.

I called work at some point. Part of me felt bad that I wasn’t going to make it in that day. The other part felt relieved – that my taking the morning off to drive Marc to the doctor was vindicated – there was something serious wrong with him! Then I just started worrying again, wishing so badly that there was nothing wrong with him, or that the doctor knew exactly what it was and had acted to sort Marc out with an injection or a course of antibiotics. Not knowing was infinitely more terrifying.

Naive

The more I deal with doctors, the more I realise how naive my expectations of medical experts were before all this. I have the utmost respect for the staff of the NHS. They were there when we needed them. They saved Marc’s life.  But I think I used to believe that doctors were an authority on everything and could solve all problems. That they could somehow diagnose an illness or condition and would know what to do.

Now I know differently.

Every doctor wants the best for their patient. But sometimes all they can do is consider the symptoms and make a best guess at what is wrong. They can treat the patient for whatever they believe is the problem. And if this doesn’t work, they can look again and try something different. But they do not always know what is wrong. Some illnesses are very hard to spot.

On that day, no-one knew what was wrong with Marc.

Struggling

We entered A&E and I left Marc to go and speak to the receptionist. If I had thought he was struggling to walk at the doctors earlier, I had seen nothing yet. As I let go of his arm he staggered – literally staggered – and I thought he was going to hit the deck. Several people reacted with surprise at this staggering, stumbling man. Perhaps they thought he was drunk. Whatever they thought, I had to hurry back to his side and assist him into a chair before returning to the reception desk.

I spoke to the woman, glad of the letter we had been given by our doctor, which seemed to move us up the waiting list. She noted Marc’s details, then asked me to take a seat and wait to be called. I went outside briefly and sent a text to a friend of mine whose husband worked in the hospital. He wasn’t medical, but I knew he might have some influence over the staff and the situation in A&E. I had never asked for special treatment before this, but that day I was willing to do anything – literally anything – to have Marc seen by someone who might help him as soon as possible.

The concern of friends

When she got back to me it was to say that he didn’t really have any influence over A&E any more, as his job had changed. She expressed her concern and asked me to let her know how Marc was later. I remember desperately wanting to speak to my parents and realising with devastation that I couldn’t because they were abroad on holiday. I dreaded going back in to see Marc, fearful that he would be worse, but also didn’t want to leave him for long, as I knew he needed me.

Taking a very deep breath, I walked back inside the A&E department. We continued to wait.

Hospital-bound

So, that first weekend. I can’t recall many of the details, but suffice to say, it was miserable.

I had my first taste of running the house and getting both children to their clubs and back, whilst looking after a sick husband completely on my own. This was to become very familiar over the coming months, but up until this point was completely alien to me.

Marc and I are a very equal couple. We each share in the majority of the household jobs and there are very few ‘stereotypical’ traits to our relationship. Marc, for example, is a brilliant cook, and if I’m honest, although I am perfectly capable of cooking, I’m a little lazy. It’s very easy to leave Marc to cook, and know that the result will not be an easy fish fingers and chips, or some kind of pasta sauce out of a jar, but a delicious, home cooked meal. Equally, I’m not especially ‘girly’ and am quite happy (unlike many women I know)to get ready for an evening out in around twenty minutes. Mind you, as many of you will know, once you have children you never have more than twenty minutes to get ready for a night out!

A wreck

So having to take care of everything came as quite a shock to me. I know that sounds spoilt – I’m well aware that many women out there always do absolutely everything in terms of the children, but I wasn’t used to it at all. Add to that trying to care for a man who was quite seriously ill, plus worrying myself sick about why he wasn’t getting any better, and I was a bit of a wreck by the time Sunday arrived.

But on Sunday morning Marc seemed to improve slightly. He managed to eat a small amount and was more ‘with it’ when I asked about how he was feeling. Looking back, he clearly can’t have been much better. I think perhaps between us it was just wishful thinking that he was starting to get better. We were still making the presumption that it was a simple sickness bug, and most people would be well on the way to recovery once this kind of illness had lasted 3 days. So surely, we reasoned, Marc would get better soon.

I took the children to swimming lessons, an activity which lasts all morning due to one lesson being at 10am and the other at 11.30. I sat and did homework with each child while the other was in the pool, all the time hoping against hope that when we got back Marc would be sitting up in bed or better still, downstairs on the sofa eating some toast or soup.

No fuss

He was still in bed. He had been sick again and seemed very weak. I determined that if he didn’t improve by the Monday morning, we were going back to the doctor and not taking no for an answer. He continued to insist (as he does – never wanting fuss and always worrying if he thinks he is causing anyone too much trouble) that he would be fine and up and about by the morning.

I continued with the day as best I could, packing bags up for school, signing homework and reading diaries, putting the children to bed and preparing myself for work the following day. Periodically I checked on Marc, desperately hoping that there would be an improvement, something which would stop the nagging ache in my stomach which I knew was linked to my concern for him. At around 11pm I went to bed.

Neither of us slept particularly well. In the morning I rang for a doctor’s appointment, dropped the children off at breakfast club and called work to tell them I might be in later, but not first thing. I was taking Marc to the doctors. Now, like Marc, I don’t like to cause trouble. I felt incredibly guilty ringing in and saying the reason for my absence was accompanying Marc to the doctor. Here was yet another sign that it was more serious than we were admitting, because no one takes the morning off to drive their 43 year old husband to the doctor’s surgery. But am I glad I did.

Extremely sick

As we entered the surgery I was concerned that Marc wouldn’t even make it into a chair. He looked so weak I feared he might fall over. I reported in with the receptionist and took a seat next to Marc. Other patients in the waiting room looked quite concerned at inhabiting the same space as him, so he must have looked bad. The man we sat next to actually stood up and moved away on the pretence of reading some leaflets, but I’m convinced that Marc looked so ill people were terrified he had something they might catch and wanted to put distance between themselves and this extremely sick-looking man.

We spent a long time in the waiting room. It seemed like forever. Every moment Marc sank lower in his seat and it was clear to me that all he wanted to do was crawl back into bed and stay there. The waiting room cleared a little and eventually the man who had moved away from Marc began speaking to us. I remember him asking what was wrong with Marc and when we explained that we had been in to see the doctor on the Friday he proceeded to tell us a horror story about someone he knew who had been suffering from a serious illness which the doctor has missed. Not what we wanted to hear at that point. Eventually Marc’s name was called and we knocked on the doctor’s door.

This time we saw a different doctor. A locum who was filling in. My heart sank as I realised that it was not our usual doctor, not the doctor who had seen us on the Friday, and I was terrified that again we wouldn’t be taken very seriously. Thankfully I was wrong. The doctor examined Marc very closely, asked  us lots of questions about his condition and made him lie on the bed where he proceeded to press on Marc’s stomach.

Marc yelled the place down.

Newly qualified

I later found out that the doctor was newly qualified. This made him less experienced, but worked in our favour. It meant he was massively thorough and asked every question going to make sure he didn’t miss anything. It also meant that he had only recently completed his medical training in a hospital. He told us that he had previously examined patients with stomach and bowel problems and he wasn’t happy with Marc’s condition. He could send of a sample of faeces but this was likely to take at least 3 days to come back from the lab and, in the meantime, the complaint had been going on for too long.

I am convinced that the decision he made saved Marc’s life.

He suggested we go straight to Accident and Emergency. He would give us a letter which would allow us to take priority and be seen more quickly than less serious patients. He asked if we wanted him to send for an ambulance. I remember being so happy that he actually had taken us seriously and was taking some action. We refused the ambulance, not wanting to take up an emergency vehicle when someone else might need it. We took the letter, drove home and packed a few things to take with us to the hospital.

Dizzy and weak

I had spoken to quite a few people over the weekend who had reassured me that sometimes a severe stomach bug weakened the body and the lack of fluids would be causing Marc to feel dizzy and weak. I set off for the hospital feeling that, once he was seen and given some IV fluids he would be restored and strong enough to get over the bug more quickly. I felt sure that, now we were headed for the hospital, we would be in the right place and things would begin to improve.

How wrong I was.

The Beginning

So I’ll start at the beginning.

In June 2014, my family and I were living a very nice, very normal life. My husband Marc and I had been married almost 8 years. We had two children, Daniel, who had just turned 7 and Amy who was 4. On Wednesday June 18th Marc had returned late in the evening from a trip to London with work, and he sent me a text on Thursday 19th explaining that he had come home from work ill and was going to bed with what seemed to be a stomach bug. I continued with my day and didn’t see him until I returned from school with the children at around 3.30.

On our arrival home I went up to see him, a little surprised that he was still in bed. He did get up and attempted to speak to the children about their day while I ran around doing the usual mad after-school stuff. I drove my son and daughter to their taekwondo lesson and, when we got back, made some tea. When the meal was ready, we ate, but he couldn’t.

Angry with him

I remember being almost angry with him: I had the Annual General Meeting of my drama society that night, which I hadn’t missed in over fifteen years of membership. I know it was fifteen years, as I was due to be given an award that night for my length of service to the society. Sounds silly, but I was really looking forward to that small recognition. Seems pretty selfish now. I kept glancing over at Marc, slumped under a blanket on the sofa, and asking him how he was feeling, desperately hoping that he would ‘man up’ and make some kind of recovery so that I could attend the meeting.

He didn’t. By 7.15 he was clearly no better, and I had to admit defeat and text a friend to let her know I wouldn’t be able to make it. It seems ridiculous looking back that I was cross about this – such a small thing in the grand scheme of life. He was ill and I wasn’t taking it seriously. But at that time it really did just present itself as an ordinary tummy bug. We would just have to sit it out and wait until he got better.

More serious than it appeared

But by the next morning he wasn’t any better. If fact he was worse. So bad, in fact, that I made him go to the doctor and I actually went with him. Now this should have given me some kind of idea that the illness was more serious than it had first appeared. Who goes to the doctor with a simple stomach bug? And who takes their wife with them?

But I felt the need to take him. Which should have told me something.

It was a fairly uneventful visit in truth, and the doctor pretty much dismissed his illness as the simple bug we believed it to be. Sending us away with a prescription for rehydration sachets, she instructed Marc to stay in bed and make sure he drank plenty of fluids, and to start to eat plain foods when he felt up to it. We went home and did as she had instructed. This was Friday the 20th June.

Looking back, I felt frustrated that she had not examined Marc more closely. That she hadn’t taken the time to see if there was anything more to the condition than appeared obvious. But it took most of the medical professionals that dealt with Marc (including expert, experienced consultants and surgeons) another week before they had actually diagnosed what was wrong with him, so I can’t judge her too harshly.

Not a simple case of food poisoning

But I am so glad that we did go to the doctor that day. It meant that on our second visit the following Monday the complaint was taken more seriously because the sickness had been going on too long to be a simple case of food poisoning or gastroenteritis. The fact that there was a record of the first visit meant that he was examined more closely and more questions were asked.

But I’m jumping ahead. We went home from the doctors on the Friday and I fetched the rehydration sachets from the chemist. Marc went back to bed and tried to rest between bouts of sickness and diarrhoea. And we settled in for a hellish weekend of illness and anxiety.