Archive for the 'cancer' Category

What happens when the heart just stops


So it goes.

I sit in the by window of the bedroom, listening to him breathe. Noisy, rattly breaths. He wakes only occasionally now. To pee. To take a few sips. He knows us. He knows what’s happening. He even makes the odd sarcastic one-worder (not having the energy for a full one liner).

But his voice is slurred and weak and he hasn’t even the energy to get the blankets off him on his own. This is what the sickness does to you. Leaves people the shell of what they used to be. I’ve seen it happen before. Just not to him.

So it goes.

Not like we didn’t know it was coming. Either from 4 months ago or even last year. We’ve thought about this. We’ve talked about this. We’ve planned for this. I don’t mean it makes it easier. I don’t know what it means. I’m not sure I have to.

Slowly (insidious as medics would say) he’s gone down hill. As the cancer grows and robs more of his energy and leaves him with more and more nausea and kinks and twists in his gut. As tiny blood clots lodge in the blood vessels in his lungs. As his poor starved liver stops making protein and all the fluid collects wherever gravity will draw it to. Week by week he could do a bit less.

There was of course the odd notable exception. Like the day they went to Newcastle and he ate a steak sandwich. Or the day the palliative care consultant came to see him and he was outside cleaning the drains. As mum said to the consultant: “this is gonna look bad…” I told dad they’d take his Graseby off him.

We’re grateful for what we had. He was glad to be here and we were glad to have him. I think that’s changed now.

I am remarkably calm. Though that’s not the right word. I’m not freaking out for some reason – I know I have done previously. The whole thing is a decidedly odd (and equisitely painful) experience.


And now he’s gone.

In the same way I’ve watched them all go before. We looked after him at home. We did everything. No nurse cared more than we did (and the nurses were great), rarely have I been so proud of my family, doing what they’ve had no training or experience to do before. I do this for a living in many ways, it is completely foreign to them.

I could watch all the signs that go with the event of dying. All the medicalised aspects of it. Knowing that there wasn’t enough blood and oxygen to his brain to deliver any kind of conscious awareness of what was going on. He was already gone. I knew this, but still… it’s my Da. He looked like all the other poor dying souls I’ve watched, but still… this was my Da.

Watching someone die is a strange and profound enough experience to start with, never mind watching it happen to someone you love dearly. I think this is part of why it has such a profound experience on people, and perhaps why it didn’t have such a big effect on me. His act of dying (the three or so hours form when he wouldn’t wake up until he was gone) wasn’t anything special. It was, as we’ve described it to people: “peaceful”. The bit that gets you is the sheer finality of it all. That the eyes won’t open again. That there’ll not be the sarcastic comments and the steely determination.

Amazing how quick something can go from being someone you have an intimate relationship to an odd looking body that bears little resemblance to the man you once knew.

I don’t understand emotion – I’m a man, none of us do apparently… But I mean on a physiological basis – the constriction at the back of your throat, such that you can’t even swallow, the pain, the sheer physical pain in your chest, the headaches, the inability to complete sentences, the way your face curls up like (to quote dear Ronnie…) “a bulldog chewing a wasp”. Why does loss affect us poor creatures so?

I wouldn’t want to have kept him here. At least not the last week or two, they’ve not been pretty. In some ways there’s this selfish desire just to keep them here, even if it’s only for a smile and a word. But you think about it and then you realise you wouldn’t want to keep them, not like this anyhow.

And then we were sitting there. With all that was left of Da. And what do you do. Where do you start? Simon phoned the doctor and all the important people, I sorted out Dad and all the medical stuff. Mum baked a pie. What else would you do? I was hungry. I don’t know why, but I was hungry. It was the best pie I’ve ever eaten.

The undertaker asked us would the house be “open” or “private” – Though according to Ruth ,when it says “private” in the paper it actually means anyone can come to the house, but if it says “strictly private” then it’s private. That seems perverse. But it is Norn Iron I suppose.

People started to turn up at the house. And then more people, and more people. And here’s the difficult bit…

I am glad that so many people turned up to wish us well and grieve and tell stories. I am truly grateful for the hundreds of cups of tea and buns and sandwhiches. But there were frequent points when I was very close to standing up in the middle of the room swearing loudly “would you *&^%$£$% all go home and just leave us in peace…”

I didn’t.

Instead I went out to the garage to stroke the dog. The dog is therapeutic. Safer and cheaper than drugs and booze. The dog helps us cope. The dog has been walked and stroked within an inch of its life in the past few weeks. The dog is the single most happy and contented thing/creature I have ever met. Like colin the robot in the Hitchhiker’s guide to the galaxy after Ford has rewired its pleasure circuits (for those who’ve read Hitchhiker’s then you’re with me, if not please read it…) Dog’s are good listeners. We could learn a thing or two…

I am sorry for thinking about such thoughts about such dear people who would come only to “pay respects” and encourage. In one of those odd ways I am both glad that you were there while at the same time I wished you weren’t. I think i’m allowed such confusion.

We bury them quick in Ireland. Two days later. I like to think it’s on the third day and all that… I don’t know why we bury them two days later. Makes the whole thing a bit more intense, but I think it’s a good idea none the less. Though how should I know, it’s not like I do this a lot…

We had a short service in the house before the trip to the church. 25 of us – pretty much the whole family, well those of us old enough to know what was going on – packed into the living room. An unbreakable and terrible tension in the room. Me and Simon waited outside for the minister to come. Both of us in our suits, white shirts and ties, greeting mourners as they arrived. I remember thinking we looked like bouncers. Like a skinny, more weedy version of Max and Paddy.

And then we followed the hearse.

To the church, along the road that Dad walked every sunday afternoon when he was a kid, turning just before we passed the house he grew up in, up roads where he walked every sunday morning with the aging BB old boys.

To the church he’d gone to since he was a baby, that both his and mum’s parents had gone to for all the generations we can trace. [And all of a sudden I realise why roots are so important. Da always said, as if stuck on repeat, “who you are, where you are from, to whom you belong…”]

Carried under the flags of the BB he’d been a founding member of, where he’d served for 40 years. Carried down the same aisle that he’d watched mum walk down on their wedding day so many years before. [Funny how funerals are so like, and unlike, weddings…]

To lie in his coffin at the front of the church filled with the 500 or so people who came to say that they knew and loved him.

To listen to the hymns that neither, me, Simy or Liz could even begin to sing without choking up on tears. We just stood as if the sheer volume and meaning from the crowd behind us could hold us up. [“From life’s first cry to final breath..” is always a killer – i have watched lots of “life’s first cry” waiting to resuscitate babies as they come out. I have watched my own Fathers “final breath” – this is a lyric with depth and meaning…]

To listen and watch as Dad’s best friend gave a eulogy where we all got reminded who he was – someone who loved well and was first class when it came to taking the piss out of people. People got insulted – Da would’ve been happy, he wouldn’t have had it any other way…

And then carried. By those who knew and loved him best, by those who were his family, as we walked behind, careful to look only at the coffin and not side to side, knowing that if we made eye contact we’d come to pieces. Odd that – on the one day designed for mourning, you spend the whole day trying to keep it together for the sake of those around you.

Then taken. Out into the pissing rain (good day for a funeral…) And me and Simy take the coffin, down the path to where we’ve buried the rest of his family. And I just repeat over and over in my head “thank you for the life you gave me, thank you for the happiness, thank you for the discipline, thank you for what you made me, thank you for everything… I’m gonna miss you.”

This and the horrible practicality that if I have to walk much further on a slippy path in these shoes then I’m gonna drop the coffin.

I remember my Granda’s funeral, the same grave, 15 years before. When, as they lowered the coffin they struggled to fit the coffin into the hole and I remember it being remarked that it was just “Billy (Da’s Dad) – stubborn to the last…”

Dust to dust, just like every funeral.

[Liz is for being cremated- she says she’s scared of enclosed spaces and scared of being buried alive. I’m being cremated to save space. Or possibly cut up into tiny pieces by inept medical students with my stolen fingers being used in tasteless pranks… I fugure if GOD raises the dead, then the spread of my individual molecules, atoms, protons, electrons and Higgs Bosons throughout the diaspora shouldn’t pose too much of a challenge…]

As we walk away, the BB old boys gather round the grave to do what they always do, to do what I’ve done before, and “bury their own”.

In the hall, there is tea. Cups of tea like you’ve never seen before. Trolleys of buns and huge vats of tea, all arranged and moving with military precision. There is nothing quite like dear church folk doing catering at a funeral.

We took up a position in the corner and waited for the onslaught. Two hours of handshakes, embraces and tears we were still there as the queue slowly diminshed. Most of it was a bit of a blur. People I had never met, hugged me, good country men shook my hand till the bones cracked. Almost everyone called me Simon. I developed a layer of foundation on my shoulder from all the embraces. It was, in the strangest way, enjoyable. Listening to people tell me stories about Da, from long before I was born.

You see, this is what I didn’t get. I considere myself an authority on my own Da. I had reason to think so. But I forgot that Dad had this whole other life before I turned up. He had 20 years before he even met Liz. This life where he met and loved people and did all kinds of stuff that I knew nothing about. People knew Da in all kinds of ways that I didn’t even think were possible. I am humbled.

For most of the time I was OK. I smiled and laughed and joked and practised our “funeral soundbytes” – it is impossible to say something original every time someone asks you a question about it so you come up with a few choice truths which somehow lose their depth of meaning with repitition.

But every now and again someone would appear in the queue who I hadn’t quite expected or someone who didn’t even know Da and had come solely for my benefit – and then I’d begin to wobble a bit. It goes down as one of the strangest experiences yet.

Your wedding day is cool cause you know and love everyone there, your funeral is the same, except you don’t get to be there. Da would’ve enjoyed it. Just shame he wasn’t there.

We only seem to get this many together if someone gets born, married or dies. Odd that. Odd, the traditions we have.

That night we all got letters from him. We knew we were getting letters. And that wasn’t the easiest. To read his handwriting, with all the nice things and him taking the piss (“Andrew, you knew you were always meant to be a girl…” Cheers Da) and at the end he’s signed it and I can’t go downstairs and say thanks. That’s the tricky bit…

Cheers Da.

Ronnie Neill

Born 29-3-48

Died 2-10-08

Bad diary days

[Following is some of the stuff I’d been writing over the past 6 weeks or so, leading up to the surgery and finding out the cancer was back. At one point it was titled “the curious incident of the chinese seaweed in the anastamosis” but that was back when I was a bit more optimistic.

This does not make for pretty reading. So it goes. I tend to write only on the bad days. And they are not all bad. GOD is good. I have no doubt. How and why he does this I’m still working out. I will be for a while.]

I don’t seem to have either the grace, strength or understanding to deal with all this. Be it life in general or life in the specifics. I used to think when I was 16 that there was only so much my little mind could take and life continued on as crazy as it seemed then, then my head would explode with overload. I suppose that’s just universal teenage angst and paranoia. But maybe I still think the same. “Life is funny but not ha ha funny, peculiar I guess.”

The older I get the more perplexed and bewildered I seem to become and find myself in frequent awe of the chaos and bitter-sweet experience of life. I cannot handle this, I cannot handle the ups and downs and the continual pressure of a mere 27 years of memories. I’ll never make 50. Unless I get a jacket without sleeves and some valium.

Maybe it’s only today I feel like that. Sitting on a bench on the edge of Craigavon lakes, which on a day like today could be lake Garda it’s that pretty. Post-night shift, of a week where I’ve worried as much as I have done in a long time.

Dad is not well. The past month has not been good. Pain, sickness, loss of appetite, loss of energy. He remains a textbook of cancer diagnosis. This is like watching a tortoise approach you from a mile away through binoculars. Slow, inevitable.

We were never given any guarantees. And seeing as he was so well I took the optimistic side of every piece of clinical info. Not that it matters a jot. Not that there’s a single thing we can do about it. The sheer helplessness and impotence of the situation. Of waiting to be told that this will not end well.

Every day has been a fight to trust that GOD knows what he is doing. To trust that his love is more important and has more of a call on my heart than anything I can cling to. Every day I lose that fight many times over.

My head floods with a hundred images of people I have known or treated. The slow inevitable decay of time as things get worse. I know (as much as one can) what this will be like. Anticipation of the needle is the worst bit I think. When the needle’s in it’s never that bad. Maybe that’s optimistic.

Everyday life goes out the window. I could care less for what happens in anyone else’s life. All I care about is what will happen to our little family unit. Everything changes. Everyone goes eventually.


I find myself continually angry. At who or what I do not know. At friends when they ask, at friends when they don’t ask. At mum and dad, at GOD, fate, karma, at whatever I latch onto.

All of life is so desperately fragile. That we live and love, grow attached to each other and learn how to love each other and then we do not know what to do when they are no longer there. We love each other desperately, though I doubt that this is how we’re meant to.

The older we get the more entrenched we get in our own personalities and lives and loves and tendencies. And we do not like change.

All there is left is emptiness and bitterness and long grey silent afternoons staring at the walls with a heavy heart.

All that I devoted and gave myself to goes out the window. The books, the music, living here, working in the hospital, holidays, relationships, commitments. Everything is off the table.

You make plans and say GOD willing, and then he wills otherwise.

Vonnegut said that the reason everyone was so lonely and unhappy was that we had forgotten about extended families and our families were shrinking and becoming more and more separated and independent and all of a sudden when part of family goes then there’s nothing left to fill the gap, and that everyone would be happier if we just had bigger families.

Mum and dad are there to look after me and Simon. And then Simon and Ruth are there to look after each other and when Dad’s not there then me and Mum will look after each other and Simon and Ruth. And Si and Ruth will look after us. Families are there to stop people being alone.

All this gives me a dismal view of love and relationships. If any of us gets sick and dies then we are all affected. We have no choice to be dispassionate about each other’s fate. We are all in this (life that is) together.

Which makes me want to avoid loving anyone. As soon as you love someone you end up in the same shit together. So that whatever happens to them affects you and whatever happens to you affects them. The fact that loving someone hurts so damn much makes me want to sever all ties to anyone who may possibly care for me or who I might possibly care for. Cause that way I can’t hurt them (however unintentionally) and they can’t hurt me.

This is a miserable lonely view of life. As much as it appeals I will have no part of it – though it is a fight to run from it.

I don’t plan too far ahead. I say no to every request for appointment, commitment or meeting. Thinking I’m too fed up of letting people down at the last minute. I’ve applied for a job I’m not sure I want any longer and living in a house I’m not sure I’m gonna want to keep and going on trips I’m pretty sure I don’t even want to go on.

I’ve committed myself to a life of bitterness and sadness and holding onto all my grief and resentment as I neglect every opportunity and gift that GOD leads me too.

I’m OK alone. It’s just everyone else I worry about.


I’m sitting here in the house with Dad’s medical notes (shh don’t tell anyone) and my computer searching journals, pinning together all the scan results, all the info, putting it altogether to form a “probability judgement”, or in essence an educated guess as to how worried I should be.

I have spent all day fluctuating between optimism and pessimism (always ending up pessimistic of course…) over what might lie ahead. I am no oncologist, indeed I’m not much of anything but I am at least obsessive. There are 6 cases per million people of ampullary cancer. It is not top of our list of differential diagnoses. People say “glad you told me what that was” when I give my little Ronnie spiel. The ampulla of vater is a long forgotten piece of anatomical trivia lost in the memory banks of medical info.

I am somewhat of an (relative) expert. When it comes to Dad then I am the expert. I know all his scan results, all his blood tests, what his scans look like (little pictures in my head), all the procedures he’s had done. I know whose opinion to trust and I know whose to consider lightly (or simply ignore). This is only partly arrogance on my part. Though it may be largely denial.


A few days down the line and I “woke up feeling hungover and old” though I am neither. Two weeks of near constant fretting and anxiety, fluctuating between thinking dad is going to die horribly like all the other cancer patients (though they do not all die horribly, that is just how I remember it)- and thinking that he’s gonna be OK (well it’s a relative term). Not that there are ever any guarantees. “Medicine is not nearly as scientific as you think” as I tell all my patients. It’s “complicated, multi factorial and varies from patient to patient” as one of my old registrars told all his.

I had somewhat of a revelation on Friday, when dad told me he’d been vomiting up 2 day old food. All of a sudden light bulb’s pinged on above my head – a gastric outlet obstruction. A narrowing at where the stomach enters the bowel – possibly a complication of all the surgery (and all the associated complications) dad had 10 months ago. And so I descend into a frantic search of medical journals, books and google trying to find reasons to believe he can still be fixed. He went to hospital and they put a tube in his nose into his stomach and drained over 2 litres of green fluid that hadn’t been going anywhere, along with recognisable green Chinese seaweed that he’d eaten almost 3 weeks ago.

One of my Paeds colleagues was chatting the other day about the relation of personalities to doctors choice of profession. That paediatricians choose paeds cause they generally had stable childhoods and find themselves empathetic to kids. Though that got us thinking towards all the screwed up specialities (like EM and ICU) and what that made us. I think I had a pretty stable childhood, yet how come I ended up in the screwed up specialities, lying awake thinking about the continual tragedy and pain of all the people I deal with everyday.

I think I can fix everyone, I think that just given the time and the space and “let me do everything” then I can save everyone. Again and again (and again) I have been proved wrong. Yet the megalomania continues.

and after 10 months we’re back where we started. Waiting on decisions about surgery. Hoping above else that it’s fixable, hoping that this surgery will be the last, that this one will be a bit more straightforward. We try to joke and quip but this is harder. Or at least it seems that way.


I’m not sure I’m entirely well. All this thinking has done me no favours, the perpetual worry has changed nothing. I always find myself thinking is it worse or better to know what I know. Tonight it’s worse.

Is this what an “anxiety disorder” feels like? Is this what “not coping” feels like? I am too used to being invincible, I am too used to taking responsibility and bearing burdens and looking out for people. I know how to do that. I think.

My fear, or maybe resigned acceptance, is that maybe this is just life, maybe this is just what loving someone means. That this is just the way it works when you love someone.

I am back to fearing hearing the phone ring. Though he’s so much better now than he was 10 months ago. This is supposed to be easier. It just seems like it isn’t. Or maybe my memory is just that bad that i don’t remember what it was like.

GOD says trust me. I say I’m not so sure I do. Medicine is a losing battle.


It is hard to sit there everyday and watch him slowly come to pieces, losing weight, losing energy, losing hope. Or maybe that’s just me. My heart breaks to watch him. Yet I can’t do anything else. It hurts more not to be there. Tonight I’m not hopeful, tonight I’m not optimistic. Tonight I worry. I doubt anyone else’s ability to look after him properly, that each night I leave him, some muppet might screw up or miss something. I want to go on the ward and scream at someone that why don’t you fix him. Though this is all nonsense I know.

I’d be shouting at the wrong person. I was thinking how this would all be so different if he hadn’t got pancreatitis following the surgery. How he’d be so well and have none of the complications. But then I slowly realised the stupidity of the question. It shouldn’t be “why did he have to get pancreatitis?” but “why did he get cancer?” We ask the dumbest questions when it comes to fate and providence.


I find myself often as the appointed representative of the medical profession, of health care in general. I find myself standing in defence of all the idiots and all the mistakes that get made when you’re in hospital. I’m not sure quite why I feel the need to defend these people, and above all to defend “the system”. The system sucks. I know that.

I don’t find myself stuck in the middle, I put myself in the middle, defending an inefficient system, defending assholes who don’t seem to have the grace or wit to give patients the dignity they deserve. Maybe I’m just too much of a part of the system to criticize it, that somehow I’d be criticizing myself.


when anything happens to Dad, I withdraw. I give up on all the commitments in my life, all the relationships, everything goes on hold, down to all the little random jobs like buying loo roll. Yes of course I want the time and effort to dedicate to those I love the most, but do I occasionally use it as an excuse to simply withdraw into my little isolationist world? Yes I do.


Everyday we fail our patients. We get stuff wrong, we forget the dignity and respect that they deserve. We communicate badly, we ignore (instead of respectfully lay aside) their concerns. We blame this on a system which neglects the health of its citizens in pursuit of efficiency and budgets. And we are partly right to do so. But then we fail patients merely because we’re lazy, inconsiderate bastards. There are certain ways that we can’t avoid failing our patients and there are certain ways that we can. I have given up being the appointed representative of the medical profession. Shower of bastards the lot of them…

And so he’s back in the Mater. I’m reminded of John McClane‘s immortal line “How can the same shit happen to the same guy twice?” I try to reassure him that things can’t go as badly wrong as last time. Comforting, encouraging things like “sure you can’t get pancreatitis again, you don’t have a pancreas.” He’d be lost without my words of encouragement.


It’s the waiting that’s getting to him. He’s a smart guy. He knows that everything they’ve tried to get him feeding isn’t working. He knows that nothing is getting out of his stomach. He knows he needs an operation – and all that that entails. He just wishes they’d get on with it. I’m talking about Dad but then I think I could just be talking about myself in the third person.

This is unimaginably hard for him. I don’t consider that often enough. I don’t consider how long  day is in hospital. When you’re well enough to cut the lawn (as he is) but tied to a hospital bed by a central line and a tube in your nose. How long a day is when you’re woke at 5.30 from a sleep you only got to at 1am and were woken from once at 3am to check your blood sugar level. How long a day is when all you have to do is think about what lies ahead.

I like working in hospitals. This changes my mind about them.


Dad calls it Mater Mk II. I try to make it seem less than that. Though maybe it feels the same. Waiting. So much waiting. Dad has his operation tomorrow. And we’re not sure what that will bring. The fear remains – cancer. The dirty “C” word. If it’s there then we know we’re not going to win this battle. I’m not sure how I’ll be able to take that. I know I feel like I’ll not be able to handle it. Though I also know GOD gives and provides such for situations. Fear is desperately uncomfortable.

What I worry about tonight is that maybe this is the last day that I can think that he doesn’t have cancer, that he isn’t going to die (I mean sooner rather than later), that he’s still “fixable”. That I’m going to have to think seriously about when he’s not there. I just don’t want to have to think about that.


and so now I have to think about it. The word inescapable comes to mind. Today Dad his third major operation in 10 months and with the resounding clang of inevitability it appears the cancer has returned. Not that it returned today. The malignant (never a better word was uttered…) cells were there in the mesentery from the time of the first operation if not before. This was always a losing battle. We just didn’t know it was.

And so with one phone call from the surgeon, in the most wonderful and matter of fact medical language I find this out – I would choose no other way. I can no longer pretend that this is not happening. He said that statistically, recurrence of the cancer was what he was likely to find. And I think that maybe I was telling everyone the wrong thing. Maybe it was pure delusion to think that it was a complication of surgery and not the cancer returning.It’s just that living without hope isn’t much of a life. It’s hard to fight when you know you’re not going to win.

Everything changes but nothing changes. We get him home, we get him well. Life is left to be lived and lived well. And our lives on this earth are not to be so precious to us to be dragged out indefinitely, it is more about quality than quantity. “Living well is the best revenge…”

I phoned Simon and told him over the phone, feeling bad that he’s on his own in work. We went into the hospital at visiting time, trying to keep it together but knowing that he can read our faces like an open book. He was doped on morphine and still full of the anaesthetic. He asked had anyone spoken to the surgeon and I told him that the operation went well but that it was cancer that had caused the obstruction. Just like that. I told him. One of the hardest things I’ve ever had to do (though I have many ahead..) and he just smiles and says that he kind of hoped that it wasn’t going to be cancer.


Today he was more awake. To be honest he’d remembered little of yesterday, barely remembered me talking about cancer, lying there in a daze hoping it wasn’t so. But he knows. And he knows what it means. And I haven’t the slightest idea what that must feel like.

Today I am strangely calm. I know how this ends. I have an idea what lies ahead but we deal with that as it comes. None of us doubt that GOD is good. As odd as that sounds. None of us think that GOD has not been paying attention, or worse, that he wasn’t able to do anything about this. There will be anger and bitterness and resentment and questions (there has been already in my own heart), but it is possible to feel two ways at once and hold only one as true.

The nurse in charge of his morphine asking him questions about pain and was he too sore to cough and was he a smoker and he replied no, but he might start soon.


first of July and the oddest of days. We went up to visit dad and have a meeting with the surgeon regarding all that’s happened. And it’s not that we didn’t already know that time was short but to have someone, professional explain it to you makes it seem all the more like it’s happening. Lots of answers we knew were coming but still so hard to take all the same. Maybe we hoped someone would tell us that we had a good chance of having a reasonable amount of time. Maybe that was me just deluding myself.

Today was tough. All our eyes are puffy from too many tears and our heads are sore from too much crying. People write sad songs about their girlfriends leaving them or their seventh album only went silver instead of platinum. Maybe that’s only playing at sadness. Maybe that’s why people write far less songs about people dying, cause it hurts so much more.

I think I said before that we’ve in no way been unlucky in our “share” of suffering. But how do people deal and cope with even more than this. I suppose no one “copes” they just keep waking up each day and getting on with life and eventually maybe it doesn’t hurt so bad.

We (I keep writing “we” though it’s not as if anyone but Dad is sick. Though we all feel it. We all hurt.) do not know how much time we have left together. This breaks my heart even to type. But it’s to be spent as well as we can possibly spend it. “Dying well” is something to strive for, as horrible as it sounds.

We brought him home. Not that he’s perhaps medically quite ready for it but nothing we can’t deal with at home. And home has such a powerful pull, a word that seems to have become so much more full of meaning than simply where we lay our heads at night.

I don’t just mean the house and the family, I mean home where/when things will be put right. When all that is wrong is put right, when all will be changed, transformed, renewed, when life in all its fullness really gets going. The way to look at it is not “I’m gonna miss all this” but “I’m looking forward to finally enjoying it”.

So now he’s home I keep saying that we work it out from here. I have no idea what that means.

Cancer for the cure

So. Cancer it is then.

But he’s back home with us. We work it out from here.

Fixing a hole

Dad is having another operation in the morning. (what’s left of ) his stomach isn’t emptying because of a narrowing at the bottom of the stomach. He’s been in hospital for about 2 weeks losing weight. We’re back to drips and tubes and scans and tests. This is hopefully a complication of all his surgery last year but it could also be (as the surgeon put it today) “return of the disease”. So it goes.

Life is never straightforward. I’m not sure we’ve been any more “unlucky” than any other family. I know plenty who’ve had much worse. Not that that makes it any easier.

I’ve moved back home for a bit to stay with wee Liz and sleep with the phone beside me and try and take all the phone calls. I’m glad I’m here.

I have written much more over the past few weeks, I’m just not sure I’m ready to put it up yet.

[PS I love the blog titles, even if no one else does… I have this fantasy that somebody somewhere is googling them all. Sigh…]

Finish your collapse and stay for breakfast

I suppose it’s been an eventful week, a confusing, often bewildering one. Just when you think you’ve got things sorted…

Da got sick again, collapsing in a shopping centre (and not at the checkout at the size of the bill either as he keeps saying to people) and subsequently had a rigor without obvious source. And so it was back to hospitals and needles and blood tests and scans and antibiotics and all the usual that we’ve come to be so scared of. And so it’s been a rough few days in a way, having to realise that maybe we’ll not “get away with it” the way we thought.

It was odd cause there were all these thoughts of sickness and pain and there he was as fit as he’d been the day before. All our hospital memories were in the Mater when he was proper sick, and struggled to do a lap round the ward. Funny how quickly me and Liz fit back into hospital visiting and little routines. The really odd bit is Dad being in the same hospital as where I work, so I can call in to see him every hour or so, and bring him a coffee and the paper, only heading back when I get paged.

I suppose I’d stopped thinking of the idea of the cancer returning, of all that that might entail. I’d filed that in the compartment at the back of my head of things I can avoid and don’t want to think about it. But this week I had no choice. There’s not the slightest thing we can do to stop it coming back (if it ever does), we are at the mercies of the gods. But when he’s so well, when he’s canoeing, and cutting grass and doing everything he ever used to do then it’s easier to avoid thinking about the possibility.

And then in the midst of this I find a house. I mean I find a house to rent, somewhere to live, the wait being the biggest bug bear in my so called life over the past few months, and of course I find it the very week I could care less for it.

But I have the keys to an end terrace house, that smells of month old cigarettes and has piles of mobile phone bills addressed to various Eastern European names in the hallway. With a slightly disconcerting dent in the bathroom door, looking distinctly like it’s been punched in. Maybe they were just impatient for the toilet in the mornings.

I move in next week all being well, to spend a week scrubbing sinks and vacuuming – if not a neat freak then I could easily be a clean freak. It’s stocked with wonderful charity shop furniture and even a fantastic 80’s TV with one of those crazy convex screens and individual buttons down the right side for each station. I love the place. I am excited.

And just back this evening from my first (well the other one I mostly missed) barbecue of the year at Rab’s, sitting squat on the ground in front of a charcoal fire, making African tea as the daylight disappears, pretending we’re all back in Africa and life is much more straightforward. My hands and clothes stink of smoke, my throat like after a cigar, my eyes tired and sore from the carbon, my heart warmed from the bant and the graceful conversation.

Ronniewatch – day hundred and something…

I suppose you’re all due a quick update for Ronniewatch. I have perhaps been neglecting him on the writing front. Though I think he probably appreciates that.

He’s been home for about a month now and seems to have managed to stop losing weight, if not put any on quite yet. He reminds me less of a concentration camp escapee now that he’s recovering from his Nelly inflicted hair do.

Food is such an issue he’s taken up cooking, sparking a series of Ronnie’s kitchen nightmares jokes and generating yet more dishes for wee Liz to clean up. It has meant a hugely increased amount of fried-chinese style food is being consumed by yours truly – it wouldn’t do to see the left overs go to waste now would it?

He now has a clot in his leg. Or more accurately he’s probably had it for a month or two, but it’s only becoming apparent now. Note the photo below shows a DVT. Not twins.
dvt.jpg On a medical note, it’s one of those things that we’re probably discovering more often cause we scan more often for them now. Which brings up the whole question of is it or is it not worth treating? Large parts of medicine are made up of what is know as plausible theory. For example if someone is a bit short on oxygen then giving them oxygen must be good for them. Right? [Hint: if anyone ever asks you such a question then the answer is “not necessarily”, though if you’re in Sunday school at the time then it’s probably GOD, JESUS or Moses…]

To complicate the example (and I will try to keep it simple), if someone dies from Pneumonia (pronounced of course “p-new-monia”, all that silent “p” stuff is just what we use to make lay-people look stupid. Next time a doctor uses the silent “p” be sure to correct him. What, do you think I’m trying to make you look stoopid or something…?), then generally what’s done it will be the lack of oxygen to the tissues (particularly heart, brain, kidneys etc…) of the body.

The plausible theory would be that providing supplementary oxygen should help prevent them dying. Surely we have lots of evidence to confirm this? [See “Hint” above]

There’s a guy (admittedly I paraphrase to the point of invention. This is the type of thing I picked up on the morning ward round in NZ, along with how you can use coconuts as IV fluids if you need to, so I’m dubious if it actually happened) in South Africa trying to conduct a study comparing the treatment of kids with pneumonia, where the only difference in treatment is the availability of supplementary oxygen (in many parts of SA this is common). In the less well-equipped areas, where no oxygen is available the kids who run low on oxygen either get better or die.

The interesting question is that whether giving oxygen actually makes any difference to survival. Does giving oxygen simply make the numbers on the monitor look better? In other words if your pneumonia is bad enough for you to need oxygen then giving you oxygen isn’t gonna make a difference.

I feel I may have lost even some of the early readers with that little foray, even the enthusiastic ones who started off with appropriate footwear and a flask of warm lemon drink.


The problems with clots in the leg is that they fire off and travel round the body and get stuck in the lungs and stop the blood flow from the heart – which is unsurprisingly kind of bad. Sort of like sticking your finger in the end of a running hose.

The treatment to stop that happening is good old fashioned rat poison (minus the crushed glass of course). Of all the nasty drugs patients come in on, I hate that more that all the others.

Incidentally I’m doing well on my list of things I never wanted to see happen to my family:

“The biopsy tells us it’s cancer” – Check

The “sit down in the relatives room and wait for the surgeon” chat – Check

Relative on a ventilator – Check

Relative on warfarin – Check

But I suppose it does work despite all the complications so maybe I shouldn’t diss it quite so much…

Consider it added to Dad’s ever growing list of “every complication possible” (though no matter what he says, he’s got all kinds of options left to explore!).

It does give him a busy week, 4 hospital appointments in 5 days, 3 sets of blood tests. I tend to underestimate the effect of all these diagnoses on people. To me a clot in the leg is “not a big deal”, just cause it won’t kill him. Again confirming that I have a lot to learn about quality of life.

We were also back for an appointment in the Belfast hospital where Dad had the surgery. Walking along the corridors was not a pleasant experience. I went down the wee spiral stairs in the atrium to get a cup of coffee and it all hit me again, the waiting, the phone calls, the fear.

On a positive note we did get to meet some of the staff who’d looked after him, and that was cool. For them and us I think.

To end on a positive note, he got behind the wheel of a car again (the mighty volvo of course) and we drove down to the shop for some milk. Winner.

Hidden in the back of my mind, somewhere under all the blogs and the books and the new Broken Social Scene album is the likelihood of the odd bad day ahead.

Not that I expect them, not that I’m being negative. Just that the road to recovery has lots of chances for wrong turns along the way.

[Note: I admit that last one is a tad clicheed, hope it doesn’t leave you sick as a parrot… Just take me away from the keyboard before I hurt myself…]

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…

Two stories

Two stories.

One. I’m walking into work and meet my consultant on his way in. I ask if he’d had a quiet night on call and as I said it his phone rang. Quiet up till now I suppose. So there’s a patient in the GP hospital 30 mins flight north who’s not too well and could the helicopter come and pick them up. And so that becomes my job for the morning. I grab the trolley with all the gear, enough to run an ICU in the middle of nowhere, and go to the hangar.

In Wairoa (referred to as the wild west of Hawke’s Bay) there’s a poor wee 62 year old Maori lady with not enough breath to utter a word and so sweaty and cold she feels like death. She’s now confused and wanting to stand up and sit down and then stand up again. Not a good option in a helicopter. I fill her with drugs for half an hour and if anything she’s worse. For once it’s probably not my fault.

I ring my boss and tell him the only way I’m getting her back is paralyzed and ventilated. I feel I ought to tell him cause I’ve never done this on my own before, and if I’m gonna kill someone then I’d prefer he knew.

And so I open the mini-icu in a bag and get my bits and pieces together. Now what I’m proposing to do is give an anaesthetic, play the role of the gas man. Now usually this is in a nice controlled environment with lots of flashy screens showing nice normal numbers. I have a portable monitor that would give me most of this. If it wasn’t for the fact that her blood pressure is so low that the only pulse I can feel is in her neck so I know her blood pressure’s not good. And that the probe for measuring oxygen content doesn’t work cause her fingers are so cold and the only number it gave us was 78% and I really hoped that wasn’t right.

The idea is to give her some sleepy stuff and then some stuff to paralyze every muscle in her body (apart from her heart – which is kind of stuffed already) so I can put a tube down her throat into her lungs and breathe for her.

So that’s straight forward enough, the nurse gives the drugs (half the big syringe, all the little syringe…) and she stops breathing. And the tube goes in easy enough and I squeeze the bag and her chest goes up and down. I feel the pulse in her neck and realize it’s not there any more. In my head I swear and curse that I’ve killed her. So I stick a big hose pipe of a needle in her neck and give her some adrenaline and the pulse comes back at a thready rapid rate, wait no, maybe that’s just mine. But no, it is there, just about…

And I talk my way through this in a strangely calm tone of voice, asking for this and that, betraying the cold sweat that’s just come out on me.

We stick her on the stretcher load her in the chopper while I sit at her head with my finger on the pulse and nothing to monitor except a read out of the electrical activity in her heart. And I search through the drug bag, cracking open amps of bicarb and calcium and adrenaline to keep that pulse there.

And we land and get her into the unit and I stick some more needles and drips and tubes in her. The boss wanders over and I give him the handover and he says I did pretty well even if the induction was a bit ‘vetinary’.

You see in many ways it’s easy to keep people alive. With enough tubes in the right places and enough drugs you can keep that little sack of muscle in their chest going for well past it’s sell by date. But most of the time, in cases like this it’s ‘futile’ (as I say to the family), cause they don’t get better and you never get rid of the drugs or get the tubes out.

My only comment to the boss is that it’s another successful resuscitation of a dead person.

Story two. Again, I’ve just arrived in work (it’s been a chaotic few mornings), and there’s a patient in the fire exit (our emergency extra bed space when the unit’s full) who’s just arrived. He’s been sent down from the ward cause he’s been unwell night and no one can get a needle into him to give him some drugs to make him a bit better. He’s got some horrible advanced cancer in his belly that he only found out about yesterday.

An hour of needles and x-rays and blood tests and fluid later it’s clear he’s dying. He’s in the process of having a heart attack, his kidneys have shut down cause his belly’s so swollen with fluid that they’re blocked. He can barely get a breath cause of the fluid in his lungs and the pressure pushing up from his belly underneath.

I only look at the name on his chart after the first hour’s over. I kneel at the bedside and look in his eyes and he knows his time is up, he just nods when I ask is he comfortable. I know he’s lying. I take his family into a room and sit them down and explain things. They already knew about the cancer but they hoped he might have had a bit time. I say he won’t and I use the ‘futile’ word again. And it echoes through my head that I said the same thing two days ago about the other one. And I curse myself (though I know not why) for having the same conversation over and over.

I take them back to the patient and everyone cries and I ask him again if he’s comfortable, and again he lies and I give him some morphine anyhow.

Two hours later his nurse calls me in cause he’s ‘going’. And he’s breathing his last, and it looks horrible. The deaths I’ve watched (I’ve forced myself to watch, to be there cause they deserve that much, looking away and standing outside would be too easy, cause maybe a few days earlier I’d said it would be OK and now it’s not gonna be) are mostly not peaceful. At least they don’t seem that way. The patient would have lost consciousness a long time before it happens, often uttering their last words days before it comes. But it’s not peaceful for the families. 24 hour vigils at the bedside, resolved to what’s happening but determined that they’ll not be alone when it comes.

And so this guy breathed his last with his wife holding his hand and sobbing that he was a good man and didn’t deserve to suffer. And I stand with my arm round her and let my eyes fill with tears and I pray – though I know not what. The pastor in the room closes his eyes and prays out loud in Maori and I pray along not understanding any of it except the amen at the end. I just say sorry. Sorry it had to happen, sorry we couldn’t do more, sorry it had to be this way. I prayed again, more of an empty ache for God’s presence than a cohesive worded sentence of petition.

Why do I tell you these stories? I tell them cause I like telling stories, cause the retelling of them has been in my head for days.

One of the guys I work with is a fairly thoughtful interested guy and asks why we do the job/ He asks is it cause I get a ‘jolly’ out of it? And yeah, I admit that’s true. I do this cause it’s a buzz. I do this cause in some ways it reminds me I’m alive, cause it seems important and something of significance in a world and society of mostly meaningless dross.

And I know I do it cause of who I can be. Cause of how it portrays me. And I know I tell these stories cause of how it makes me appear. And if I use ‘me’ any more in this paragraph I’ll scream.

And I hate myself for the motives in my heart for telling these stories. I used to make deals with myself that when I did something I knew would make me look good that I’d not tell people. That I’d keep it to myself, but it never happened, I always had to let it slip into conversation at some point. I hate myself for being the self-absorbed, self-referencing prick that I am. That no matter what I touch I corrupt. That the only thing I can contribute to my own salvation is my need of it.

In ‘the great divorce’, probably my favorite CS Lewis book (though please don’t make me choose…), it talks of how when we get to heaven there’ll be such laughter. Laughter at ourselves, at our histories, at how we got so worked up over so little. That we’ll laugh at our own petty little quests for significance in all the wrong places. All our self-righteous rants and arguments, how it was so important that we were right. We’ll laugh just cause we have a better view, a better perspective on our existence and purpose. Kind of like I can’t believe that I had my hair in curtains when I was 16. It seemed like a good idea at the time. I still think our parents made worse choices in the fashion department…

So why do I tell these stories? Maybe I just needed to stand back and have a bit of a laugh at myself…

Bread and butter

Today was a funny day in work. Maria and Otto (my hungarian bosses) were both off. They actually had to be forced to take a day off cause they’re kind of workaholics. Maria even rang in at one thirty in the morning to make sure a patient got a certain drug.

I work in an AAU (acute admissions unit) where we see folks who usually need a few investigations and chucked out the next day. An attempt to cut prolonged admissions to hospital. It’s a decent place to work. Fewer old demented crocks than usual.

So today the AAU was me and Bob (the ED/A&E boss). Bob spent most of the time running the ED so I was kind of my on my own. And i’ve been kind of baby sat since I started. I think maria and otto have me sussed as a bit of a muppet doc and are trying to stop me killing people. They’re probably right.

Today there was no such baby sitting so I kind of had free reign with the patients. Which is more what i’m used to. First guy. Mr A. He’s fat, a smoker, a diabetic, knackered kidneys, dodgy ticker and low on blood. His lungs are knackered from smoking. This is your standard medical patient. This is my bread and butter.

Except Mr A has a 10p piece on his chest x-ray. And I don’t mean he choked on it. It’s what’s described as a ‘coin lesion’. Lesion is a word doctors use to disguise cancer when we’re talking about it. Everyone knows what tumor and malignancy means these days so we use ‘lesion’ or ‘neoplasm’ to hide it from people.

Mr A doesn’t know this yet. I know this. I know it’s not definite, few things are in medicine but i’ve seen enough to know i’m not wrong. He’s a dead man. So he gets a scan of his chest and it shows he’s got one lesion on the periphery of his lung that’s spread from another one near his wind pipes. I know this. He doesn’t yet. This means he’ll be a dead man in a few months and there’s little anyone can offer him.

Mr A is fed up with hospital. He’s had his blood transfusion and Hawke’s bay are playing rugby tonight and he has work to do in the garden. He has no intention of staying. Mr A can’t complete a sentence without stopping for breath. He’s going no where.

He has to know some time. And Bob (the boss) has gone to a funeral and there’s just me. If it were me i’d want to know. So I go in and I sit down and explain that we saw a ‘shadow’ on his lung and we did a scan to check it out and that we think he has cancer. And that last word sticks in my throat. Like my voice has never said it before. Like it’s not quite sure it should be forming the sounds. The atmosphere changes. We make eye contact. And it’s not like there wasn’t eye contact before but it’s clear now he’s really listening.

He rolls his eyes and sighs. Then mutters an angry comment about how long he’ll have to stay in hospital then he looks at me again and he’s petrified. Anger, denial, acceptance and fear in seconds.

He asks me to ring his daughter and tell her to come over. I ring her. I fear she’ll ask me why I rang her. But she spares me that.

I have this fear of unexpected phone calls form unknown numbers from people I don’t know at odd times. I’m convinced the worst has happened. My heart thumps till the person on the other end of the line explains why they’re ringing.

So his daughters turn up, and his wife. And I tell them and him the same thing as before. I use the word cancer again. And still it sticks in my throat. If I didn’t say it then they wouldn’t get it. Until you mention the word everything you say to them will be meaningless. His wife cries, he cries. He thanks me. He thanks me. He thanks me for telling him he has cancer. My eyes fill with tears and I make myself look in his eyes and I make myself hold his hand cause he deserves it and so much more.

Bread and butter

Today was a funny day in work. Maria and Otto (my hungarian bosses) were both off. They actually had to be forced to take a day off cause they’re kind of workaholics. Maria even rang in at one thirty in the morning to make sure a patient got a certain drug.

I work in an AAU (acute admissions unit) where we see folks who usually need a few investigations and chucked out the next day. An attempt to cut prolonged admissions to hospital. It’s a decent place to work. Fewer old demented crocks than usual.

So today the AAU was me and Bob (the ED/A&E boss). Bob spent most of the time running the ED so I was kind of my on my own. And i’ve been kind of baby sat since I started. I think maria and otto have me sussed as a bit of a muppet doc and are trying to stop me killing people. They’re probably right.

Today there was no such baby sitting so I kind of had free reign with the patients. Which is more what i’m used to. First guy. Mr A. He’s fat, a smoker, a diabetic, knackered kidneys, dodgy ticker and low on blood. His lungs are knackered from smoking. This is your standard medical patient. This is my bread and butter.

Except Mr A has a 10p piece on his chest x-ray. And I don’t mean he choked on it. It’s what’s described as a ‘coin lesion’. Lesion is a word doctors use to disguise cancer when we’re talking about it. Everyone knows what tumor and malignancy means these days so we use ‘lesion’ or ‘neoplasm’ to hide it from people.

Mr A doesn’t know this yet. I know this. I know it’s not definite, few things are in medicine but i’ve seen enough to know i’m not wrong. He’s a dead man. So he gets a scan of his chest and it shows he’s got one lesion on the periphery of his lung that’s spread from another one near his wind pipes. I know this. He doesn’t yet. This means he’ll be a dead man in a few months and there’s little anyone can offer him.

Mr A is fed up with hospital. He’s had his blood transfusion and Hawke’s bay are playing rugby tonight and he has work to do in the garden. He has no intention of staying. Mr A can’t complete a sentence without stopping for breath. He’s going no where.

He has to know some time. And Bob (the boss) has gone to a funeral and there’s just me. If it were me i’d want to know. So I go in and I sit down and explain that we saw a ‘shadow’ on his lung and we did a scan to check it out and that we think he has cancer. And that last word sticks in my throat. Like my voice has never said it before. Like it’s not quite sure it should be forming the sounds. The atmosphere changes. We make eye contact. And it’s not like there wasn’t eye contact before but it’s clear now he’s really listening.

He rolls his eyes and sighs. Then mutters an angry comment about how long he’ll have to stay in hospital then he looks at me again and he’s petrified. Anger, denial, acceptance and fear in seconds.

He asks me to ring his daughter and tell her to come over. I ring her. I fear she’ll ask me why I rang her. But she spares me that.

I have this fear of unexpected phone calls form unknown numbers from people I don’t know at odd times. I’m convinced the worst has happened. My heart thumps till the person on the other end of the line explains why they’re ringing.

So his daughters turn up, and his wife. And I tell them and him the same thing as before. I use the word cancer again. And still it sticks in my throat. If I didn’t say it then they wouldn’t get it. Until you mention the word everything you say to them will be meaningless. His wife cries, he cries. He thanks me. He thanks me. He thanks me for telling him he has cancer. My eyes fill with tears and I make myself look in his eyes and I make myself hold his hand cause he deserves it and so much more.


July 2022