Archive for the 'Dad' Category



All my… friends I… return to wish you a happy Christmas

I bragged – somewhat precipitously – in work the other day that despite the  huge surge of coughing, sneezing, vomiting, exploding, virulent and infectious patients we’ve had of late that I hadn’t a day off sick in 9 years. So today I broke that duck.

But my friends would have none of it. Just as one is looking forward to an evening feeling sorry for myself and indulging the twin pleasures of beer and theology – they tend to come in and spoil it all with gifts and grace and love beyond words.

They managed to give only books (such wisdom…)  and only one book twice – all very impressive. Both to the ones with the tenacity to show their faces and the ones with the sense and mercy not to bother – I thank you all. You all do what you do in my life exceptionally well and to each I am eternally grateful and will continue to show my love for you by locking myself in the house and ignoring all your acts of gracious kindness toward me. Forgive me.

I am better at preaching the gospel of love and community and fellowship than living it. But at least you give me some examples to learn from.

None of it changes that Dad is not here. Not that any of you expected it. I just don’t tend to do fun anymore. Joy maybe but not fun. Though I’d be willing to give it a go sometime.

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The photo album

Found this photo of Da when he was 20 and kind of scared myself a bit. We used to joke that I was son of the milkman cause I didn’t look like either mum or da. Go figure.

img_0190_2da-1_2

Good time, bad times

I wrote this a few weeks ago and I can’t help thinking it accurately describes the current situation:

i had 27 years of barely interrupted bliss and joy and then Da died and now everything’s shite

I don’t always feel like this, just for now. And what’s a blog for if not for the odd rant.

Grace under pressure

Eventually you have to get back in the boat and get on with life. Maybe that’s what happen when you grieve, you spend more and more time simply doing the business of life and then hopefully, after a while it doesn’t hurt so much. Not particularly profound but it seems to fit for now.

So I’ve moved back to my own house and spent a manic weak painting and cleaning and sorting. If in doubt clean. It’s what we do it seems.

My room is no longer this horrible shade of orange – the previous tenants having daubed the walls like a painting indian elephant. It is now tastefully (and boringly) white. This is oddly satisfying.

But then we thought we should literally get back in the boat and so we did. Now most of you think that the Blackwater is just a dingy little bit of water (stained black from the cow poo…) separating Tyrone from Armagh and stopping them from beating us in football. This may be true, (even the bit about cow poo) but it’s also quite pretty none the less.

Canoeing is almost the perfect Northern Irish sport, requiring large amounts of rainfall and a sport where you’re gonna end up wet anyhow so it may as well be raining. Though I describe it as a sport, it’s certainly not how we approach it. More of a way to get one from one place to the other with nice scenery that takes much more time and effort than simply driving would do.

It has reasonable support in NI with a number of new steps and trails being opened. The one on the Blackwater describes it as being accessible canoeists of all levels.

And while it started well despite the rain, we were soon avoiding discarded fishing tackle and spinners strung over the first bridge – i’m still not sure if they were lost or intentional in their placement.

There was a fair degree of flow on the river, with what could only be described as minor rapids to anyone with any degree of experience. To us this was grade 5 death rapids. Or so it seemed.

Our major mistake was the wrong turn. Some would have thought that making a wrong turn on a river is particularly difficulty if not nigh on impossible, but they would be wrong. Probably most easily seen on this map is the little island created by the diverging paths of the river. All of this came as a bit of a shock and so we did what any sensible person would do and chose to follow the narrow, overgrown river that left at an acute angle as opposed to following that wide, open stretch that lay straight ahead. Err… yes.

I suppose we got a little carried away, used to speeds of up to 2mph on the Bann we were a little dizzy with the adrenaline of 10mph, thinking we were back in the flumes in Portadown pool or something.

Till Simon hit the tree anyhow.

The nose of the canoe wedged under a submerged trunk and the full flow of the river behind meant it wasn’t long till the boat was flipped and wedged under the trunk – with Simon still inside. I’d love to say i paddled swiftly to the rescue but was busy trying to limbo under my own tree somewhat further up the river.

Now when you’re in a canoe, the most important thing is the paddle. With no paddle you’re just an idiot in a skirt in a plastic bathtub with no control.

So of course Simon, now underwater, tries his best to hold true to this idea, despite the lack of oxygen and the entrapment. Thankfully he lets go of canoe, paddle and finally tree and floats down the river. I, at this point a little late to rescue the brother make a sterling job of saving the paddle as Simon drags the canoe to field at the side.

This is all a little dramatic for a wet Tuesday afternoon two weeks after your Dad’s died. We both imagined what would have happened if Simon had actually met an ignominious end under a tree – we could picture Da saying “what the *&^% are you doing here?…”

In the end it was all a little less dramatic than it seemed at the time. We ended up carrying both canoes through a field of cows (sometimes I wonder what the cows make of it all…) to the junction of the river, had a nice cup of coffee from the thermos and paddled onward without further problem.

We haven’t quite got round to telling Liz yet, though she’ll find out eventually no doubt. She worries. Understandably it seems. The next purchase is helmets. Which says more about how much we enjoyed the drama and not so much about regard for safety…

What happens when the heart just stops

30-09-08

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.

4-10-08

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.


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July 2019
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