Archive for July, 2008

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 longĀ  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.

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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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