Last night I nearly died

Below is what I’d been writing about Dad being sick, since all this started back in August:

He’d been itchy for a week. And I’d not really been paying attention. I’m not a good quality of life doctor. All the minor things, that cause disruption to people’s everyday life I’m probably not that good with. If you’ve had a sore toe for 7 years, and you’ve no idea why, then not only do I not care, I won’t have a clue what’s causing it either. If you’re dying, if you’re blood pressure’s disappearing, if you’re heading towards that bright light, then I’m probably your man. (on reflection that sounds like the intro monologue to the A-team, that was not my intention).

So he was itchy, and I didn’t know why, and frankly I didn’t much care.

And then his eyes turned yellow, and he was itchy. And all of a sudden everything changed. When it’s your own father, everything’s different.

Painless jaundice is not a good diagnosis. For a start it’s not even a diagnosis at all. It’s more a sign of something else. But painless jaundice is also not a good sign, because the majority of people with painless jaundice will be dead in a year.

I got him to lie down on the sofa and I examined him, noticing his liver was bigger than it should have been. Noticing that no matter how hard I pushed on his gallbladder he wasn’t sore.

I’d agreed to do a few shifts in Craigavon A&E while I was back in the country. Mostly for social reasons, as working there was a good way to catch up with everyone. But also cause I just missed the place. I noticed dad was yellow at 7pm. I had him in A&E at 9pm. My shift began at 10pm. One of the other docs saw dad, for which I am eternally grateful. I took his blood and ordered the tests, but having someone else ‘in charge’ of your dad’s care makes all the difference even if it was only on paper.

I got offered the night off. I refused. I knew if I went home I would just worry. I was already trying not to worry Dad too much. I stayed and did my night shift, and worked myself into the ground, working as hard and as fast as I possibly could to avoid the thought that kept relentlessly forcing itself upon me. That my Dad probably had some form of horrible widespread cancer and that he’d be dead in six months.

I worked, and worked. I did not stop. I did my best with the lonely, and the suicidal, with the alcoholics, even with the girl who’d waited 3 and a half hours with a sore ear (which I confess I gave antibiotics for, even though she didn’t need them, just cause I felt sorry for her…) and the poor guy who waited 4 hours for me to put one stitch in his chin at 3.30am.

And at 6.30 there was no one left. And I went and sat down in the tea room. And I cried. I got up and went outside. I cried some more. My hands shook. I told the Sister about my Dad. She said did I mean the young, well-looking man she’d seen me with earlier and told me he looked far too well to be dead in 6 months. And for that I am eternally grateful.

I went back and drank tea and stared at the wall till 7.30am when a mum walked in with her ‘packed and ready to depart this world’ 9 month old baby, with patches of the meningitis rash all over it. Baby was awake but crying feebly. Funny how quickly you slip into the ‘calm and in control doctor’ mode. I find this works whether or not I am either calm or in control.

Within 2 minutes of arriving he had a drip and a dose of antibiotics and half a bag of fluid. In 30 minutes he was covered in the rash. By this stage he had 6 doctors huddled round his tiny frame. Within an hour he was on a breathing machine with ever increasing amounts of drugs to keep his blood pressure up. In two hours he was on his way to ICU in Belfast.

I realise I have learnt a few things in the past year. If nothing else how much I love this stuff.

From here it snowballs. Dad gets three different scans in five days – the queen doesn’t get this kind of treatment said the radiologist – and he wasn’t far wrong. For the first three days I cannot get the image of my Dad – my Dad dying – out of my head. I don’t sleep or eat. My stomach feels sick the whole time.

I wrote in my journal – how big is my god? Big enough  for me to realise that no one but him is in charge? To understand that he has not fallen asleep on the job? To come to terms with what it means to follow JESUS CHRIST? Is my god sufficient? Can I love a god this big? On whose terms do I trust GOD?

After three days he gets a CT scan done. And I breathe out a long held breath. That he does not have metastatic cancer. We still don’t know what is causing the obstruction to his liver. For that we must wait another week.

And in the meantime there is my daddy. My poor, itchy, yellow daddy. Who cannot sleep because of the itch, who would take his skin off with a potato peeler given the chance. Who paces the house at night and rubs the tops of his feet off the rims of the carpeted stairs for relief. Whose stomach is sick, because none of the bile can get out of his liver to break down his food.

Me and Dad come back from the CT scan and I tell Mum that it’s not the worst case scenario, that we still don’t know what it is, but that it’s not horrible. And she breaks down, and I suppose we all do. And it’s the first real family release of emotion. We huddle and pray and cry. We can do no other.

Two weeks after I notice he’s yellow, he has a camera test to look at his bile duct and there’s a tumour there. A small one no doubt but it’s there. And now we know. Now we know it’s not good (though could be worse), that I’m going to have to start using the ‘C word’, the word that every patient over the age of 60, admitted to hospital worries about.

I’ve told a few people they have cancer. A universally difficult thing to do. And every time, I know I have to say it. I have to say ‘the biopsy shows that it’s cancer’. I can’t use any nonsense about masses or tumours or growths. Unless I say cancer then no one gets it. It sticks in my throat like a dirty word. Like something in a foreign language that shouldn’t be coming out of my mouth.

I find it hard not to see horrible things round every corner. This is the kind of medicine I practice – and I do mean practice. I am paid to look for the worst diagnoses and test for those and if it’s nothing serious then to be frank – I don’t really care.

And so we leave Dad in hospital and me and Mum go home and watch Hot Fuzz, anything to keep our minds off things. But I can do nothing but picture a lonely future for Mum, watching DVDs of an evening, knowing Dad’s no longer there. Few things upset me more than to see loneliness in people’s lives.

So now we know it’s cancer, a word I find difficult even to type. Now I know he needs an operation, a fairly major one. Where he’ll lose half his pancreas, half his stomach, his gall bladder and a bit of bowel. This is major re-plumbing. This is a big deal. It is not easy to picture your own Dad on an operating table. To picture your own Dad in an ICU, with a line like a zipper across his belly. Through all this I have fluctuated between being glad that I know as much as I do and hating that I know too much.

The Chinese whispers of inter-hospital transfers (Dad needs to go to Belfast for the op), leaves us with possibility he might have the surgery done on Friday, two days after we’ve found out it’s cancer. Everything seems too quick. They talk about stages in acceptance of bad news. And I see now it takes time. The enormity of what is happening to our small family unit is slowly dawning. That from now on everything will be different.

When we leave for Belfast on Thursday I look at my Dad – who apart from looking like Homer with a bad case of fleas – is the picture of health. He is not sick. Now of course I know he’s sick, but he’s not sick in the way I think of sick. And on Thursday I think – is this the last time I’m gonna see my Dad healthy? Thursday is a big deal and there are a lot of tears.

When we get there we realise the operation won’t be until the Monday. A last minute reprieve – in our minds anyhow. Dad rings a guy from church to let him know and gets a ‘oh it’s a voice from beyond the grave’ response.

Of note, we could not get through this without being able to take the piss along the way. Our family exists on banter and sarcasm and taking the hand out of each other. If we could not laugh then it would be a thousand times more difficult.

So we all go home for the weekend. Two days reprieve, two days for the slow dawning of what might lie ahead. I’m so glad he came home. That he didn’t spend a pointless weekend in a Belfast hospital, alone. With half crazy men in the beds beside him and nurses who don’t acknowledge his even existence never mind his pain.

Brief note, we have had almost without exception, fantastic care, from truly dedicated people, just the odd bad apple…

I left mum and dad alone for the weekend and went to Donegal for a weekend with almost 20 of my best mates. To sit in a cottage and play silly games on the beach and sit up till the wee small hours of the morning putting the world to rights. I needed that. I needed their ‘tears and sweet amens‘, I needed to know they were with me.

Me, Mum and Si went up on Monday morning to see Da before the operation. That was not easy. We left before the porter arrived to take him down. There would be no painful family processions behind the bed. As if there was something to be mourned.

When someone has surgery, the relatives are always most concerned and worried while the patient is ‘under the knife‘ so to speak (when in fact the ‘knife‘ is only really used for skin incisions and all the ‘real’ surgery is done with fingers and ‘blunt dissection’). Their biggest concern is that they might die ‘on the table‘. (which is more of a bed anyhow…)

This is another fallacy. People do not die during surgery, well of course some do, people who bleed out for example, but percentage wise it’s tiny. Medically I know this. I know that the worrying time is the time after surgery, not the surgery itself.

I know this. It matters not a jot. I worry I might never see my dad again. I worry that he won’t make it. I can think of nothing else.

We go home (it’s a five hour operation) and try to watch the Two Towers to take our minds off things. Anything except to brood. Where the disaster that is only ‘vaguely possible’, moves to the ‘just might happen’ into the ‘more than likely’ before becoming the ‘almost certain’.

It doesn’t really work but it’s a valiant effort. Dad sleeps through all of this. Some people…

That night we drive up and see him in the intensive care unit. Still regaled in his blue paper gown and with pin point pupils from the morphine, he just keeps telling us again and again how much he loves us and how lucky he’s been to have the life he’s had. And I wish he wouldn’t cause it just makes me cry all the more.

Three days later and he’s in trouble. Cause what was left of his pancreas has rotted and gone gangrenous and then he bled into it. No one expected this. Not even the surgeon who’s been doing these for 15 years. He goes for another major operation.

For the first time I really panic. I really go to pieces. I had this all thought out – I suppose. I’d been through it all with dad and mum, of what might happen of what could go wrong. And I was prepared for that. But not this.

Now watching my dad, now on a ventilator (the fictitiously named ‘life support machine‘ – there being no such thing) with tubes and wires everywhere, with bags of blood and plasma dripping in. With no response from him but a drunken looking grimace on occasion.

People on ventilators generally look like they’re dying. Whether they are or not. I have been working in an intensive care unit for 15 months in a row. I can think of few things worse than seeing my dad on a ventilator with a dropping blood pressure (again why ‘What Sarah said‘ is such a good song) and fighting to believe what I know. That he can get through this. That yes this is a big deal, but he can get through this.

This was all the nightmares I’d had about being on ‘the other side’. The nurses bringing you into the ‘relatives room’ with comforting lighting and the nice sofa. Being the one receiving the bad news.

Not being the doctor that opens the door of the relatives room, introducing himself delicately, politely and gravely. With a family’s collective gaze fixed on every gesture, expression and word that you make. Not being the one that says ‘I can’t begin to imagine how hard this is for you‘, not being the one that says ‘we have to take one day at a time‘. Not being the one that gets to say all the kind, compassionate words of encouragement – sleeping at night only because I get to say them and not receive them.

So this is what it’s like then.

We leave the ICU eventually. When it seems clear he’s ‘stable’. I have seen too many 24hr bedside vigils. With relatives wearing themselves to pieces just to ‘be there‘. Part of me doesn’t want to leave. Part of me has more sense. Another part of me screams ‘give him some norad you fools… can’t you see he needs more fluid… if you lose his kidneys he’s stuffed, can’t you see this…’ but I stifle the screams. This is not my ICU, this is not my job, this is not my patient.
I ring up the next morning at 6am. Dad has been very ‘naughty’ according to his nurse. Having ‘surfaced’ from his sedation at 4am and not liking the breathing tube in his throat, he pulled it out. This is quite impressive. His first words, as they prepare to put him to sleep to put it back in, are ‘it’s good to be back’. In the end they leave him be.

At 6am on the phone I get to speak to him. To hear a weak, slightly horse voice tell me he loves me. Maybe the ‘voice beyond the grave‘ wasn’t such a facile comment after all…

Everything changes. We all smile. We laugh. We make jokes. Clinically, medically, not much has changed. In our lives everything has changed. ‘rollercoaster’ is too twee a word to describe it but it’s the best I have.

Four days later we get the pathology back. This is the results of some tests on what they cut out. Where they make slides of the cancer ’tissue’ and look at them under microscopes, and put funny dye on them to work out which cells are which. I’m glad someone does this job. I’m glad it’s not me.

To know exactly what type of cancer it is is important. People can be cured with certain types of cancer and not with others. They talk of 5 year survival rates. That if you’re still alive five years later then it’s probably not gonna come back and you’re probably ‘cured‘.

Brief note on ‘cured‘. No one is ever cured. Mortality rates among human beings remain rather high at just under 100%, taking into account some rather exceptional circumstances over 2000 years ago. Indeed the ‘human condition’ itself is to die. ‘Please don’t cry, we’re designed to die‘ sings Jeff Tweedy. My boss in NZ describes oxygen as a toxic substance that causes pain, misery, suffering and occasional euphoria, that eventually brings about decay, decline and death over a period of roughly 70 years.

We knew dad had one of two types of cancer: pancreatic or ampullary (an area of the bile duct). The difference was (roughly) 10% versus 70% 5 year survival. So now you see why it matters. The poor wee first year doctor who they dragged down to tell me was smiling (and no this is not darling lorraine) when she came in. I prayed this meant it was good news and not naievity on her part.

When she told me it was ampullary and that there was no spread to the lymph nodes, I could have hugged her, even though I didn’t know her from eve. I told her this, though in the end I still just shook her hand.

I never thought being told your dad had cancer could be such good news. I went back to the bed smiling and told dad it was the cancer we were hoping for. And he prayed and thanked GOD. And we cried. Tears need not always be bitter.

We needed that. Needed to know that the fight was worth winning. When you’ve been through two major operations in a week, lost half your blood volume, lost an organ or two and had your insides replumbed, then you need the prospect of light at the end of the tunnel. When you haven’t slept for weeks thinking that maybe all this is a bit pointless, maybe I’m going through all these horrible things for no good reason. You need a bit of good news.

After two weeks in ICU he got moved to the ward. And the change in him was noticeable. The freedom and independence he now had in being able to get up and walk around himself, the fact that he could finally sleep changed everything. He was weak and tired, but there was joy and hope in his face. That yes we’re going to get through this. He’s gonna come home soon.

Each day seemed busier than the last. With seemingly queues of staff waiting to speak to him each morning. Between surgeons, doctors, nurses, physios, dieticians. A lot of information to take in. And then there was (is) the diabetes to get used to. With no pancreas, Dad has no insulin and therefore has very high sugar levels in his blood. So now he has to poke and inject himself with various needles to keep the sugars under control. He took to it like a duck to water.

On Monday we think we might be getting him home by Friday. On Thursday it turns out it won’t be till Monday. On Friday it turns out it might be six weeks. On Friday it might be not at all.

On Friday he had a scan (an ultrtasound of his heart) to look for an infection and on it they see what is described technically as a ‘vegetation’. A little clump of bacteria and platelets attached to his aortic valve in his heart. This is again, kind of a big deal.

This is like having a knife plunged into your stomach. The rug pulled out from under you. 2 steps forward and 8 back. In my head I know that this is it. That this is not going to end well. All I can picture is poor sweet Herbie, the Maori with the Bono glasses and the exquistie giggle, like he was being tickled, who became our most frequent flyer in ICU till his dialysis line got infected (he’d been through five lines, two of which were mine…) and his heart valves got infected and quickly rotted away. And that was all she wrote. I know too much sometimes.

This feels worse than realising he had cancer. Whether or not it is worse is another question.
I think I’d just got used to the idea of my Dad living through all this. I’d just got used to the idea of him being alive. And then I was thrust back into the awful visions of my Dad lying there, colour fading from his cheeks, his chest no longer rising and falling, the pulse in his neck no longer throbbing. The painful, miserable finality of it all.

Left thinking of funerals and kind words and of the pain and anger I would carry with me and nurture and water until my self-pity is fully grown into bitterness. Till GOD eventually gets fed up with me and takes me home.

Why the up and down? Why bring him this far, why make it so hard, why make it so $%^&*() hard?

I’m just left angry. At what I don’t know, my thoughts aren’t organised to find an appropriate target. Truth will not let me stick it on GOD.

It was a horrible weekend. Waiting for another test on Monday that we all believed was merely to confirm what we already knew. He spiked high temperatures, he felt woeful, his blood pressure dropped. I found it hard to watch my Dad get sicker. To watch and not to do something about it.

Sunday evening I had a quick word with one of the junior docs, desperately not trying to seem to be telling them their job but needing to know that they knew he was getting sick again. It is an awkward position to be in. Doctor’s relatives are often the hardest to treat, I have no desire to be a difficult relative, but when it’s your own Dad then the great Kiwi maxim ‘She’ll be right’ is simply not good enough.

I graduated from baby doctor to grown up doctor (well maybe pre-school doctor…) by getting things wrong, by making bad decisions, by screwing up. Rarely resulting in any significant consequence. Perhaps sailing a little close to the wind is more appropriate. This is how you become a better doctor. By making lots of silly mistakes. It was fine for me but when it’s your own Dad then I’m having none of it. This makes me no more self-centred than the next person, merely someone in a position to do something about it.

At some point in the weekend I let go. Let go of diagnoses and drugs and numbers and survival rates and just repeat ‘Thy will be done’ over and over to myself. I realise that Dad not making it would still be grace – he gets away from sickness and into eternal joy he does not deserve. That the pain we would go through would still be grace – each of us desperate sinners, deserving of punishment for our neglect and rejection of GOD as the whole point of the universe.

As a brief aside I find myself unable to reconcile these two aspects of prayer: 1) thy will be done, and 2) if you have faith as small as a mustard seed… I don’t know which to pray and find myself unable to pray both. Never have I once doubted that GOD could simply and quickly heal him. I have doubted every day whether or not he will. When I first noticed Dad was jaundiced, I knew what that meant. My first thought was not ‘GOD heal him’, but ‘Thy will be done’. I instantly gravitate to 1). Perhaps this makes me fatalistic. I’m not sure that’s a good or a bad thing. When I say ‘thy will be done’ it is with gritted teeth, with a clenched fist.

On Monday, about lunch time, Dad rings. Telling us he’s had the test. Telling us that the doctor told him that they could find no infection on his heart valves and that the ‘vegetation’ on the first test was something called ‘artefact’ (an image on the screen to do with funny reflections of ultrasonic signals). All of a sudden the sun comes out, the room warms up and everything changes. Again.

What this means is the infection is not in his heart but coming from an abscess in his belly. This is wonderful news. In the way that finding out what type of cancer Dad had was good news. Everything is relative.

I sat at my desk and cried, no wept. For a good 15 minutes. Something I haven’t done since all this started.

Thinking about it I’m really not that sure how much more bad news I can take. The thumping of the adrenaline as the phone rings when it’s not meant to, or a blood test or a scan result. Each one like losing him all over again. I’m not sure how much we can take of all this.

And so began the slow windy, hilly road to ‘recovery’, whatever that means. It means eating, and blood sugars, and insulin, and wounds healing, and 5 laps a day round the ward.

It means starting to get on with all the other things in our lives, thinking about jobs and cars and other people. All the people I neglected and turned away from to be with Dad. So it goes. I have no regrets on that.

It means, not worrying about him, not sleeping with the phone beside me so that if it rings with bad news at 3am then mum won’t have to hear it first.

At one point shortly after the operation, the phone kept ringing, good, kind-hearted people ringing to give support and prayers and find out things were going. And I was frequently terse and brief in my replies because I had neither the energy or (to my shame) the inclination to talk to that many people. At the time I came up with the idea of Ronniewatch, a nightly five minute TV program, perhaps just before the ten o-clock news, possibly presented by Huw Edwards or the lovely Sarah Travers. They could have the guy from Big Brother say “Day 7 in the ICU, Ronnie takes his first steps…” and that kind of thing. Just so that everyone would know he was getting better.

And he is getting better, and I know he will. Though I debate in my head whether this is faith in GOD, or faith in modern medicine, or (much more likely) faith in the fact that there comes a point when human beings will just get better, no matter what you do or how you feel about it.

But oh what it would mean to get him home. Days become weeks and all of a sudden 2 months have passed. The word home comes out of my mouth with a tremble and a sigh, my lungs emptied so I need to breathe before I can make another sentence. Like it does when Luke Skywalker says, “but that will lead them straight… home” in the first Star Wars, just after they find the slaughtered Jawas in the desert. Home in the way Sam means when he says, “well, I’m back” at the end of the Lord of the Rings. Home in the way Paul Simon meant when he sang, “I’m sittin in a railway station, got a ticket for a destination… I wish I was homeward bound…

10 Responses to “Last night I nearly died”

  1. 1 Roads October 19, 2007 at 8:12 am

    I loved this post, and it must have been so hard for you to write.

    And if you look at my blog, you’ll see exactly why. My story is just a few short lines from diagnosis, and all that it brings. The ‘beyond the grave’ responses, the shock, the fear – and the theft of a family’s future.

    I am a scientist and a doctor, too – so I can appreciate the perspective, even though I’m only the type of scientist who works with rocks.

    My screw-ups may be highly costly, and very embarrassing, but they’re not on the same scale.

    Your post is simply marvellous, exactly because it crosses that doctor / patient / family divide. It should be compulsory reading for doctors everywhere.

    And I really mean that.

    Best wishes to you and your Dad and all your family. I’m so sorry that this happened, but a lot of good will come out of it, through your writing.

    You’ve done good here – you really have, so thanks again.

  2. 2 soapbox October 19, 2007 at 9:54 am

    I want to comment but I don’t quite know what to say, such a raw and moving post – thanks for sharing it all, I concur (as a fake doctor once said) required reading for doctors everywhere.

  3. 3 lilytodd October 25, 2007 at 8:45 pm

    I watched my dad go through a liver transplant, I’m not a doctor but I read everything I could get my hands on and knowlegde is scary thing. So much of this is familiar; the sinister jaundice, ICU vigils and ventilators. Sometimes I can’t help and stare and my Dad in disbelief that he is still here. I had prepared myself for the worst.

  4. 4 shadowlands1501 January 16, 2008 at 9:09 pm

    Thank you for putting down the words that all of who every are in the medical profession but find ourselves on the “other side” experiences when their love one is the “patient”.
    Roller Coaster is the only term that remotely begins to explain the emotional experience. The great highs, the deep lows that rest on every word the proceeds out of the doctor’s, surgeon’s, specialist’s mouth…”Truely the power of life and death is in the tongue”….
    Then to evaluate what you see and equate whether what you see corelates to what has been said, checking, observing, evaluating…there are times, being medically trained works against your faith.
    And in the middle of everything, there is the theological discussion and debate that is never ending in your mind. Knowing that God can, but will He and if He won’t, Why????
    You captured it all and thank you for the great effort for reliving it so as to tell others what it is like….
    For me, I am two years after living this with my husband. He went through a 12 hour surgery and was “cancer free” for 3 months. That is not long, but it was heaven just to hear the words. His cancer occurs in the genreral population 1 in 280,000, so there is no research for his appendiceal cancer. He is still hear, but I see his energy waining and our hopes fading. We knew from the start that 2 years was the most that the medical world had to offer and he has exceeded those 2 years. We know that he is on borrowed time, yet we can’t stop ourselves from hoping for a miracle…
    This is why I blog, I can’t continue to keep these moments in my heart or in my mind. It is too much and it is good to find another who is walking this “Valley of the Shadow”
    Thanks again for sharing. Thank you for allowing us to walk that moment with you.

  5. 5 Anonymous January 9, 2013 at 12:40 pm

    i love you nelly

  1. 1 Country Roads « Nelly And I Trackback on October 31, 2007 at 3:09 pm
  2. 2 Come on pilgrim « Nelly And I Trackback on February 27, 2008 at 12:03 am
  3. 3 Finish your collapse and stay for breakfast « Nelly And I Trackback on May 4, 2008 at 12:33 am
  4. 4 What happens when the heart just stops « Nelly And I Trackback on October 7, 2008 at 10:15 pm
  5. 5 The impossible dream « Nelly And I Trackback on August 17, 2010 at 1:04 pm

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October 2007
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