Hello, I’m Your Daddy

“Hello Arthur, I’m your Daddy”… I pause the video. I’ve watched the full video only three times. Every other time I pause the video after those five words. I don’t need to hear what comes next. I’ll never forget what I said next in the video, I know it word for word.

I chose to say “Hello” not “Goodbye” I’ve not listened to those five words for months. I probably shouldn’t even open the video, as I suppose it’s quite morbid to look into your own eyes and see your own fear and guilt. I’d accepted that death was a possibility and in many ways I wasn’t scared. Instead I was scared and feeling guilty that if I did die Arthur would have to grow up dealing with having lost his Father. I really wanted him to have a good childhood and not suffer because of me.

I don’t know if the video would have made a big difference. Needless to say I’m glad that it wasn’t needed.

Angela was on her way to be by my side before the Surgery. However things were happening fast and they wanted to operate as soon as they could. A nurse had suggested I “say my goodbyes”

A few days earlier I was happily at home, amazed at how quiet a life outside of a hospital is. Angela was looking after me, i’d even spent some time saying hello to well wishers before being whisked back to bed by either my Mum or Wife. And then I vomited. No warning, no sickness… just a strange sensation like someone pushing into my stomach. After a phonecall I found myself back in hospital on a surgical assessment ward. My tired bruised hands and veins were subject to more needles, more x-rays and another CT Scan.

“Yes Pseudocyst is back, however what really worries us is that it seems the necrosis on your Pancreas has spread and the pancreas itself looks very inflamed with multiple blisters” Things we’re heading downhill and it was made clear that there would be no waiting for the nice gentle surgery through the back of my ribs… for an extra measure of alarm they wanted to wait a day until they had enough time to operate and with the best surgeons.

The following day on the assessment ward was full of ups and downs. The ward was short staffed, I was in a bay with five other patients served by a single newly graduated nurse who also looked after a bay behind hers “Jenny! Jenny!” came the call as patients called her throughout the day. One scared patient on our ward refused all treatment, I had a chat with him and set him at ease to the point whereby he at least let a nurse take his pulse. Another patient kept dropping things. Nurse Jenny* was struggling.

My consultant had told me i’d need a blood transfusion before the operation. I wish i’d simply said “Sure, fine by me!” instead I asked why it was needed, as he started to speak I put two and two together… they expected a lot of blood loss. The Transfusion would go on right through the day and into the surgery. The consultants had told me things had gotten serious and the mortality rate was high… but they were just words, now I was now getting really worried

Shortly a Doctor came to ask me to sign some papers, just routine stuff allowing the hospital to operate. She was a kind middle aged doctor and put me at ease, she helped put the pen in my hand. I was very weak and in pain. Struggling to use the pen I started to tick boxes to confirm i’d understood the various details of the operation… and then there it was. Clear as day a box to tick confirming I understood that the surgery could result in my death. I know they have to put these things in, but I asked her anyway. “The risk is high isn’t it?”

“Given what’s happening to you, yes” came the answer.

“I’ve got a little baby boy”

“What’s his name?”

“Arthur, he’s perfect and he always smiles. I didn’t really want children, but he’s perfect. I won’t see him again until after the operation will I? What happens if I refuse to have the operation?”

“We think that in a day or two you’ll be dead Martin. The rest of your organs will start to fail and there will be nothing we can do. It will be too late”

“That’s not much of a choice” I was very weak. My signature was barely a scrawl. I was scared.

“You will see him again”

I was in tears. Nurse jenny came to speak to me. She has a young daughter, a toddler. She mentioned that patients sometimes like to write letters or make videos. I knew I wasn’t strong enough to write. I was barely strong enough to hold my phone and record a video.

The day continued and I became calm. I felt like I’d signed away all my worries and fears and was feeling quite at ease albeit with a few butterflies. Another consultant came to see me and told me they we’re having one last meeting in readiness for the operation. He told me which members of the team would be performing surgery. I was happy to hear it included some of my favourite doctors.

An older nurse looked over my medication chart. She looked worried and called over Nurse Jenny. The older nurse asked if Jenny had forgotten to fill in the medication chart. Jenny’s face dropped and she looked at me and then at the bag of blood running into my arm. The nurse crossly asked Jenny “why haven’t you given him them?”

My mind raced… the drugs… they were supposed to give me drugs to prevent a reaction to the blood. The nurse called over the Sister. The Sister called over a registrar and a call was put out to get on of my consultants down to see me. Jenny was distraught. The Nurse who spotted the mistake clearly didn’t like Jenny and wasn’t hiding the fact, even the Sister was less than pleased.

“Look I feel fine there has been no reaction” I pleaded

“You need a lot more blood and we cannot safely give it to you unless you’ve had the right medicine” The sister explained

“Are you saying you can’t operate?” I asked, my mind was now racing. If they couldn’t operate today when could they operate?… and how many days until I died according to the doctor who’d asked me to sign the forms?

“I don’t know, that’s why we’ve called your consultants back”

By now a kinder colleague had come to Jenny and tears we’re welling in her eyes. But it seemed she was still being reprimanded.

“Please don’t blame her, have you seen how chaotic it’s been in here today? Jenny it’s not your fault I don’t blame you!” I couldn’t bare to see what was happening to her. I also knew that it wasn’t her fault alone. As a new nurse there were roles she wasn’t yet allowed to perform and the older Nurse had been less than helpful throughout the day as Jenny had called her to help with jobs she couldn’t yet perform alone. My consultant arrived and took away my charts with the sister and registrar doctor.

Jenny was left at the end of the bed. “Jenny, i’m going to be fine.” She cried anyway.

The consultant approached. “It’s not ideal. You’re not going to have as much blood as we’d hoped. However we always plan to give more than is needed and as we said before we’ll continue to give you blood during the operation. Try and rest, we go ahead tonight”

If you receive a letter of apology from a company these days it often reads “We’re sorry to hear that you are unhappy”… that’s not an apology. That’s simply saying “we really didn’t want to hear your complaint.” Jenny however did apologise. I can’t exactly recall what she said, the words were not important she was genuinely sorry.

“I don’t want her to get into trouble for this” I told the Sister. Looks we’re exchanged. I know there are procedures. For the rest of the day the mood on the ward changed. Drama over I tried to sleep.

Time was pushing on and I was told i’d be taken down soon. Angela arrived… I can’t recall what we talked about. The patients in the Bay wished me well. The Patient who refused all help thanked me for chatting to him and Jenny stayed after her shift take me down to surgery with the Porters and Angela. We got as far as Angela was allowed and we hugged and kissed and said our goodbyes, i missed holding her hand already! Angela told me she’d wait. We went further into the Theatres and I waited in a small bay with Jenny while the Theatre nurses looked over my notes. Jenny was still worried. “I’m going to be fine” I told her.

I think by now I told everyone I met I was going to be fine. I’ve never felt so calm… I’d decided that quietly passing away was better than multiple organ failure any day. And who knows. Maybe I’d even survive!

Hello Arthur, I’m your daddy and I love you very much…

…I’m very sorry. I want you to know that it’s ok to be angry. And it’s ok if you hate me for leaving you. But I do love you…”

There is more, I mention some details and tell him his Mummy will try and answer any questions he might have.

I didn’t want to say goodbye. And I didn’t have to. I’d win this fight. Just not the war… I didn’t know it yet but I was only half-way through the war.

The Caring NHS

The NHS seems to take a bashing more often than is justified. It seems that despite the fact that it’s been rated the best healthcare system in the world in 2014 ( http://www.theguardian.com/society/2014/jun/17/nhs-health ) and 18th in the world by the W.H.O in 2000 there is in some corners of the world an Agenda against it. Recently when chatting to an American friend he was shocked to hear that I went straight from an ambulance to intensive care with a patient to nurse ratio of 1:1.

He’d been “told” the NHS was a poor third world rated system.

I was always touched by the kindness shown to me by hospital staff Hospital.

I was always touched by the kindness shown to me by hospital staff Hospital. Doctors, sisters and nurses who came for a social “chat” cleaners and auxiliary nurses who would find time to help, often it’s the little things, the moments of genuine human care that count. Having spent four months in hospital I saw it a lot. I also saw nurses and doctors suffer both from the emotional and physical impact the job had on them. I saw both Doctors and Nurses crying… and I saw that helpless look in their eye as they continued a difficult shift after loosing a patient: often they we’re given no time to deal with the shock and loss… they had to push on. It was often disturbing to know that the nurse stood before me taking my routine observations of temperature, pulse and blood pressure had only moments earlier had failed to in her fight to save a patient. yet here she was, doing the job. Often fighting back the tears. From the extreme of their job to the routine. No break inbetween.

In recounting my time fighting Pancreatitis I’ve not yet mentioned how much I missed my then three month old son Arthur. It was a painful time. I was scared he’d lose his father. He wasn’t allowed to visit me in Intensive Care and unfortunately on my first admission into High Dependancy it was decided I and some of the other patients were too ill.

On the ward however I was lucky to have a private side room and he was allowed to see me. However for our first reunion it was decided to take me off ward. This was a big step as I’d not been anywhere but the wards and CT scans for almost a month. I’d also not seen Arthur for just as long and my last memory of him was as I held onto his tiny calf as they took me to intensive care.

A very nice nurse call Sam came to get me ready. But I was all over the place. I couldn’t stop crying. By now I’d realised I had almost died. Arthur had been so very close to losing his Father. “I don’t want to cry in-front of him. it might upset him”

“Don’t worry about crying he’s just a baby. Give him a great big hug. You’re so lucky” Sam said as she gave me a hug. Sam spent some of her valuable time preparing me, talking to me. “He will know who you are” she said.

I had become worried he wouldn’t remember me, the feeling would continue throughout my stay in Hospital. My wife took me down into the main entrance to meet Arthur where he was with his Grandma. I fought the tears so very hard, I almost succeeded until he gave me his biggest broadest smile.

For weeks i’d listened to people telling me how lucky I was to be alive. I’d heard their words. Now I finally understood them.

A Pancreatic Pseudocyst

I was settling into the ward quite nicely… things we’re becoming less strange. A dietician came to see me and told me that if I didn’t start eating soon they’d put a tube back in my nose. i’d got vague memories of really not enjoying the tube going up my nose in intensive care so I tried to eat. The dietician told me to eat “two spoons of his and two spoons of that”

It seemed a huge amount, I struggled. Physically I just didn’t have the strength and I didn’t feel hungry at all! But I managed it and the tube stayed away!

It’s hard to describe how I felt… “not right” is as good as a description I can give. I still couldn’t go to the toilet despite huge amounts of laxatives, which i’m sure were making me hallucinate, though that could have been the pain medication. The most obvious symptom was the vomiting. It was odd, I didn’t feel nauseous or even sick. At times it seemed to come out of nowhere. Eventually I realised it seemed to come when I changed position or moved. I had a scan, then a very good Heptalogy Doctor called Mr Gomez told me I had a Pseudocyst. “What’s that, a cyst that’s not a cyst?”

“We’ve looked again at your scans and we feel the procedure is too risky for you”

“It’s basically a sack full of Pancreatic enzymes, blood and necrotic tissue that’s formed on your Pancreas” He replied. “So I don’t have Pancreatitis?”

“Yes you do, but now you also have a Pseudocyst, the size of it is what’s casuing you to vomit as it pushes against our stomach. Pseudocysts are complications of Pancreatitis. Don’t worry” he said and gave my leg a pat on his way out. The plan was to drain the cyst via an Endoscopy the next day. I had another scan late that night and anxiously waited.

Next morning I waited for the allotted hour but instead of a hospital porter to take me to surgery a junior doctor (A registrar) came to tell me it was cancelled. I was disappointed, of course I didn’t want any kind of “procedure” but I also didn’t want this “thing” inside me and now i’d seemingly been dropped for a more important patient. Just while I was feeling sorry for myself a  senior consultant, a professor, came to see me. “We’ve looked again at your scans and we feel the procedure is too risky for you, the danger is that the cyst could rupture leaking an infection into your body we’d like to wait”

I was shocked, I think i’d forgotten how bad things had gotten. Later that day I started to finally read about Pancreatitis online. I saw scans, the same type of scans I’d had. I read that as the complications increased so did the mortality rate. Especially if a patient was so bad that they couldn’t wait for the “nice” keyhole surgery through the back that the doctors had in mind for me some long and distant time away.

The vomiting continued. That night a registrar told me that if the vomiting wasn’t under control soon i’d have to have a Nasogastric tube to handle the bile… “In your weak state if you vomit in your sleep you could end up accidentally swallowing and getting vomit in your lungs”

Tired, weak and exhausted I was getting very scared. I didn’t want a tube and so my wife told the doctors i’d sleep in a raised position to prevent swallowing. Sleeping was still uncomfortable. I wasn’t moving very much and was on a special mattress. I’d lost a few stone in weight by now.

Another day and another scan. And then.

“Martin have you eaten today?” My consultant asked “We need to drain the cyst. It’s grown to the size of a football and there is a risk it could rupture”

“Oh yes it is, but you see i’m the best in this hospital, probably the whole country and I wouldn’t do this if I thought failure was possible”

All mention of the dangers of the procedure, were now pushed to one side as they explained the size of the cyst was the real threat. I looked down at my stomach… there was a lump… but it didn’t seem that big. I was expecting to be whisked away at any minute. Yet hours later I was still in my bed. “We’ve shown your scans to the doctors that perform the endoscopies and there’s no one on duty prepared to carry out the drain. There is however a senior consultant, a professor coming on duty tonight, they’ve phoned him and he’s willing to look at the scan and make a decision tonight”

Doctors are very good at putting you at ease, they are also really good at scaring you witless!

As I signed the consent forms with a nurse the Professor came in. He was a kind elderly Indian doctor with wild wispy hair. He was confident to the point of arrogance yet his kindly nature meant I believed him when I asked “Is this dangerous” and he replied “Oh yes it is, but you see i’m the best in this hospital, probably the whole country and I wouldn’t do this if I thought failure was possible”

“he is the best, he’s brilliant” The nurse said as she took me through.

I lay down on my side with the nurse holding my hand and smiling. As the sedative worked I felt calm, the small LED lights on the huge banks of machines twinkled. I woke up with a very sore throat. The same nurse was there and gave me a huge smile “It’s alright, it was a success. You’re going to be ok!” I don’t think I’ve ever felt such relief.

The kindly indian professor came into the room and told me he’d drained a litre from the pseudocyst before they had to stop. “but don’t worry, I’ve inserted a stent, a tube from the pseudocyst into your stomach, the juices will flow into your stomach and be destroyed by stomach acid”

This all sounds rather genius I thought! And it was… the next day I felt great. Weak and unable to walk any distance but great. I was even able to eat a little more. Two days later the Ward Sister gave me permission to attend my brothers wedding. I felt a little guilty that i’d take some attention from them but more than anything I was so very happy not to have missed his big day.

A few days after that and I was back home with our three month old baby and my wife…

… I thought it was finally over.

 

Severe Acute Necrotising Pancreatitis

“We’re flushing his body with the antibiotic equivalent of strong bleach” My body was fighting high temperatures and possible infection, they needed to keep the temperature down and safegaurd against possible septicaemia. At times i’d become very hot, then very cold. My room in the Surgical High Dependancy Unit was air conditioned and I had two fans. It’s odd that at this point I was my most aware but yet my memories are foggy. I was still hooked up to the Oxycodone and able to administer my own doseage by pressing a button. I was offered a meal but it all tasted funny and I really wasn’t hungry anyway… even though I’d not eaten for over a week… I was still confused.

I think it was (what seemed like) the huge bank of monitors behind my bed that made me believe I was in a sleep deprivation study. That and the pain from trying to find a comfortable sleeping position. There was a possibility that my bed was damaged and so the very expensive state of the art bed was swapped for another. The nurses soon set me straight and I began to ask what was going on… what had happened? Explanations by my doctors and wife at this point we’re protective of my mental and emotional state. A specialist nurse from Intensive Care was visiting SHDU on training purposes and I was lucky enough to have her look after me for a day or two. She had a soothing Scottish dialect and set about helping me wash, the act of moving was hard and I couldn’t understand why. She joked conspiratorially with me that I ought to try moving before the Physiotherapists arrived… A nurse friend of mine calls them Physio-terrorists! and I now know why: they push all patients to overcome the pain, to get moving. My task was to sit, to simply sit long enough to eat… even if I couldn’t eat that meal. They push hard and the pain just makes you want to stay still. It felt like the hardest thing i’d ever done. Things would get harder!

It wasn’t long before I was able to walk to the bathroom. Once I got there however nothing was happening. Strange stomach sensations and pain, the desire and need to go: but nothing. I was on tablets to help me go, they were strong but still nothing!

I was very aware of my catheter it was now causing me pain. I didn’t really recall it going in which I found odd because i’d heard they hurt. My Grandfather had a catheter insertion go so badly wrong that the loss of blood it caused led him to pneumonia and eventually death. I was keen to get the catheter out and was a glad a day or two later when it eventually went.

I’d been in SHDU two or three days now and could just about swallow a spoon full of a hot meal and eat a pot of jelly. It was time to move to a ward. Being “moved” is emotionally strange when you are so dependant, it’s scary. My high temperatures we’re still causing me psychological problems and the move to the Heptalogy ward went badly. I needed a new cannula needle for my drip and it’s insertion on the new ward did not go very well: it had been getting increasingly harder to get these small needles into my veins and after the sixth attempt by the Foundation Year Doctor in the new ward I was becoming distressed and confused as my temperatures started to soar again. I needed the drip for liquids, pain relief, temperature control and the antibiotics. A senior doctor came and also failed to get the needle into me and the decision was made to take me back to SHDU. My wife was furious i’d been taken from the specialised ward in the first place especially as my own consultant had suggested I wasn’t yet ready for the move. However limited resources had seen me bumped down as a priority and moved to Heptaology. Attempts to get the needle into me on SHDU also failed and so the clinical lead consultant, a brilliant but often intimidating doctor arrived with his typical great flourish to take over and told me I was going to have a central line inserted.

“Well that’s it. All done, they’ll want to come x-ray you and make sure i’ve hit the right spot but if you need me, me and my ‘dawgs’ will be kicking around for a while”

A central line is a big tube that they stick into your neck and runs all the way down into your chest. It’s useful because it has a number of “taps” that they can run multiple medications into and they can also take blood samples from you. As the pain relief was no longer running into my arm I was in quite some pain by now, but I was also rather delusional from the high temperatures. However I do remember being tilted backward on my bed as they inserted the tube into my neck and I very clearly remember the consultant saying “Well that’s it. All done, they’ll want to come x-ray you and make sure i’ve hit the right spot but if you need me, me and my ‘dawgs’ will be kicking around for a while”

“Did he really just say that?” I asked my wife “yes!” she replied.

He was a younger, slimmer Sir Lancelott Spratt. Dynamic, Terrifying but brilliant.

The plan was to wait for my body to come out of shock and once better bring me back into hospital for keyhole surgery… it all sounded very rosy. Everyone was pleased that I’d made it through intensive care, actually they we’re very pleased… I suppose it was around this time that I started to notice just how relieved everyone was, yet my own memories were so vague and confused I still didn’t know how bad it had been!

A day or two later and my temperature was behaving, so too were the oxygen levels in my blood and a move from SHDU was back on the cards, I was still marginally delusional and confused, I was still not eating and losing weight and the sisters from both wards got together to plan a move with my wife going ahead to the new ward to help too. That they have time for this attention to detail is a real credit to the NHS.

Are you really Lactose or Gluten Intolerant?

Are you sure? I was convinced I was, instead I ended up fighting for my life.

I guess it started around eight years ago (2006) when my then girlfriend and now wife noted that after consuming dairy products I became bloated, experienced abdominal pain, gas, wind and diarrhoea.

It worsened in 2010 when it seemed bread was also a problem.

As the symptoms worsened I went to my doctors and they suggested keeping a food diary to monitor the problem and to identify problem foods. In late 2011 convinced I was coeliac I went for a test… but the results disagreed and the conclusion was that I was suffering from IBS with an intolerance to Lactose and Gluten. However after a while I noticed something quite alarming: Occasionally I could eat without problems!

“I wish I’d pushed all of my doctors more because less than a month later I was in intensive care fighting for my life.”

In 2013 my “intolerance” took a nasty turn. What had been mild gas (Burping) became physically unbearable and the only way to relieve the pain was to vomit. Yet I was in so much pain I couldn’t make myself vomit… instead I had to wait until my stomach could cope no more and would simply “ejected” it’s contents. Unfortunately every-time this happened and by sheer coincidence alone i’d also recently eaten tomatoes. There is some evidence that tomatoes can cause problems for some people but not with the violent symptoms I had. I visited my then Doctor and she said it was possible I had an intolerance to tomatoes, I wish i’d pushed her more. I wish I’d been clearer about the violent nature of the pain and vomiting… I was one very simple test away from the truth

I wish I’d pushed all of my doctors more because less than a month later I was in intensive care fighting for my life.

It was a lovely sunny July morning and I’d been to a local farm shop and tearoom with my wife and three month old baby son, I’d treated myself to a less than healthy organic sausage sandwhich. An hour later and I was stripped naked and in indescribable pain, vomiting into a bucket. I don’t remember removing my clothes. but I do recall being very hot and then very cold, and then very hot again.

“we need to tread carefully, we’ve lost too many like him recently”

I recall speaking and joking with the paramedics… at one point I almost didn’t go to hospital because the pain momentarily vanished. But I did go and was taken to A&E department at Nottingham University Hospitals Queens Medical Centre in Nottingham (In the USA you might know A&E as ER) the vomiting increased and seemingly would not stop, it didn’t seem possible that I could have so much fluid in my body and when the strange brown specks that looked like freeze dried coffee that the nurses told me was blood appeared I realised I didn’t! The last thing I remember before being quickly whisked away to intensive care was reaching out to hold my baby sons little leg: so tiny, perfect and unaware of the troubles around him. I was unconscious when a doctor told my wife “we need to tread carefully, we’ve lost too many like him recently”

I have vague memories of an ultrasound being taken, I remember nurses pleading with me to relax and try not to vomit. I recall a hushed conversation between a doctor and a nurse about my amylase count being higher than anything they’d seen before. I don’t really recall all of the tubes going in and thankfully I don’t recall the pain – they tell me that often when the pain is that bad you just don’t remember, I’m also fortunate that it wasn’t long before I was hooked up to morphine. But this was only the start.

“It’s Pancreatitis” the doctor told me. I don’t recall anything of that day other than this short conversation in which I was asked if I drank alcohol. “rarely”, I replied. “The ultrasound also showed you don’t have gallstones, the only other causes of Pancreatitis are alcohol and very rarely medication.” I’d had perhaps 5 units of Alcohol from January to July. The doctors agreed it wasn’t alcohol. It had to be one of my medications.

I don’t recall the pain or the screaming, but my wife assures me: I did scream.

I knew from school biology that my pancreas had something to do with creating digestive enzymes. I also knew Pancreatitis could be bad and would possibly involve surgery. And then darkness came, I either fell to sleep, passed out or my memory fades because my brain protects me from the pain. As I said before they tell me it’s common for your brain to protect you from these things. I don’t recall the pain or the screaming but my wife assures me: I did scream.

My memory of the next few days is very hazy, the pain and the morphine meant my brain was creating all kinds of stories to protect itself. I had moments of clarity followed by hazy memories. When you are conscious you quickly become aware that Intensive Care is a very noisy place. The machines are noisy, they beep and buzz and ring. The doctors and nurses are noisy, the very few visitors are also noisy… the patients however are quiet. They’re generally either unconscious or very heavily sedated or hazy from strong medication.* You don’t really think it can get any noiser, but it can: The buzzing and beeping becomes intense, it’s followed by shouts, calls and the noise of a very highly skilled hard working team of professionals who are not paid nearly enough. On a number of occasions the noise ended in tears and a look in the eyes of the doctors and nurses that I won’t ever forget. These moments always seemed to be very clear in my memory.

It wouldn’t be long before I was diagnosed with Severe Acute Necrotising Pancreatitis: I’d have to fight for my life not once but twice, undergo two surgical procedures and face feeding through a tube in my nose or stomach for the rest of my life. I wouldn’t see my son until he was almost a month older and i’d still be in hospital four and a half months later.

I really was not Lactose or Gluten intolerant and Tomatoes were definitely not the problem!

If you’d like to read the full story please read on in this and future posts!

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