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Tuesday, December 14, 2010

Diary Newcastle, December 2009 [Rough Notes 18 December 2009]

As a kind of anniversary of sorts, I'll write about the post-operative conditions following the craniotomy performed on me on 17 December last year, as I wrote it down straight after – well, mainly the events afterwards. I don’t recall too much of what they were doing to my brain at the time, as I wasn't awake!, but their task was to remove as much of the tumour as they could safely reach – which unfortunately wasn’t all of it. Tracey’s view would be somewhat different, as she knew things that were happening that I didn’t.

Immediately after waking
   I don't remember falling asleep - or the point at which I did - though the last time I had anaesthetic I remember a slip-sliding feeling into oblivion. Not this time. I woke up coughing and spluttering from the effects of some tube they must have put into my throat, causing congestion to my lungs and my throat was sore. But I gradually became aware of my existence once again, and cautiously tested out my reactions to things, knowing at least that I could think and feel. Soon they put me through the normal reaction tests and established all was as well as it could be.
   I had a sore head but I don't remember its being too painful. Tracey came in and was well pleased to see that I was doing OK, as she knew that even in successful operations of this type there is sometimes some temporary problem with some brain function.
   The time for sending me to a ward came and went, and it soon became obvious that there was a problem of finding a space for me. Even a bed! I was on a very narrow recovery bed suitable for a child, with my arms hanging over the sides.

Off to ‘recovery’
   It must have been nearly an hour later when they took me off to a ward where there was a space. Tracey was there all this time, right with them.

My companions
   The only way to describe the scene in the ward is bedlam. In one corner of the 4 bed room was a woman called Carol who was clearly brain damaged and said she was paraplegic. That wasn't strictly true as she had crushed vertebrae and couldn't walk, but she had some control over her limbs. She had been there for some weeks. In the other corner was an elderly chap called Bill, who had just had a shunt replaced in his head. Unfortunately for Bill this had interfered with his ability to control his bodily functions, which meant a lot of work for the nurses and tremendous embarrassment for him, as it was clear he had never been in such a position before.

   Carol was on the mobile phone to someone giving him a right piece of her scrambled mind while loudly giving poor Bill a bollocking for not being able to control his body. She was telling him how lazy and self-centred he was to give the nurses this extra work, on what was an unusually busy night. The nurses were of course simply embarrassed by the gratuitous advice Carol was giving Bill.

   In the third corner was Colin, who had been involved in a car accident. Colin was in a lot of trouble. His neck and part of his body were in a rigid brace, so he was in a half-sitting position in which he could not move. He was disorientated, probably from the drugs he had been given to control the pain, calling out constantly, trying to get out of bed and with no idea where he was - and coughing terribly. He had a massive amount of congestion in his lungs which was choking him and he couldn't spit it out - he had a sucker thing like at the dentist's to drain any fluid he coughed up, but of course that made him terribly thirsty and dehydrated - and he was not allowed to drink water as it probably would go down the wrong passage.

   In short, he was in dire straits, and I really felt for him. He had to get rid of the congestion in his chest which was likely to turn to pneumonia at any stage, but was unable to, yet he had to be free of pneumonia before they could operate for the condition that had him in the body brace. Apparently, he was not quite bad enough to be taken to intensive care, which makes you realise how bloody desperately ill you have to be to be put in there.

   But I was sharing a 4 bed room with three cases that meant alarms were constantly going off, as Colin was pulling out cannulas and trying to cough up gunk from his chest and dying of thirst, and Carol giving unhelpful advice to everyone - including Colin - about what they should be doing. It was like one of those hospitals in a war zone, where everyone is running round and people who need treatment are made to wait because there’s simply no choice.

Lucky me!
   In these circumstances I was quite fortunate on a number of counts. I was not in undue pain or discomfort, in spite of the fact that I was still in my bloody surgical clothing, and on a child's bed with little space for my arms. It was also fortunate in that if I *had* been in some difficulties, the nurses were in such strife with the other patients that they couldn't have attended to me anyway. Tracey was doing what she could, mercifully, and I can only imagine what my night would have been like had she not been there to do something about it. Naturally she shouldn't help with anyone else in there as that is against the rules, but she stayed with me, hoping that the other crises would settle down long enough for me to be changed into better sleeping gear than a bloodied hospital gown used for surgery. There was no hope of having me cleaned up post-surgery by the nursing staff, of course; they had life-saving things to do and I respected their priorities. Under the circumstances I didn’t really expect to be attended to.

   We were both very conscious that time was ticking on and family would be anxiously waiting for news, but Tracey knew that she couldn't leave me in the middle of that debacle. Finally, we changed my clothing into something more comfortable (and warm) because the air conditioning was quite cold, and as nothing was changing in terms of the difficulties the nurses were in, she got the nurses to show her the kitchen, and made me some tea and toast (as I hadn't eaten since 6:00 am and was quite hungry, and there was no-one to get me food).

Contacting family
   I was anxious that she contact family, so she left with great reluctance and tears in her eyes knowing that it was going to be the night from hell for me and there was nothing she could do about it. She was also utterly worn out as we had started at 6 am and had been spending most of the day either waiting around in apprehension or fighting for some better conditions for me. It was a terrible end of the day for her and I knew that when she got back to the motel she wouldn't sleep a wink (which was obviously the case when I saw her the next morning - very early.)

A fun night
   So the night started. I could see a clock on the wall and it must have been after 9:00 pm by then. I watched the hands of the clock go round minute by minute as the nurses battled with and for Colin, cleaned up Bill, and attended in between to Carol's demands for coffee, lozenges, drinks of other sorts with strict instructions as to what should be in them and being thoroughly pissed off that the attention of the nurses was focused on the others. At times, doctors were called when Colin got into serious trouble with his breathing and they fought to settle him down when he was panicking. I could hardly blame him for that. In his situation, I would have been too, and with good reason.

   In short, I was in the room with a man who was going through continuous torture and no hope of relief, begging for water which couldn't be given. I learned for the first time in my life how to use a 'bottle' and by the end of the night was pretty expert at it. That was just as well as the drip in my arm turned me into a sort of water recycling plant. Physically I was fairly comfortable and really conscious only of the fact that of the 4 people in the room, I was way the best off, in the short term at least.

   The nurses were also grateful for that, but they came round every hour or so and asked me the same questions - what day is it today? Month? Year? Who is the Prime Minister? So the night wore on, turned into grey, and by 4 am it was first light, this being one of the shortest night of the year. I had maybe dozed a few times for a couple of minutes. Yet I felt surprisingly clear and sharp.

   Colin's condition deteriorated at last to the point later in the morning that they decided he was sick enough to go into Intensive Care, and Bill's condition was stabilising. He was far from perfect but better off than he was. Carol had closed all her curtains as she was cranky with me for saying at one stage through the night to Colin when he was in desperate straits, "Hang in there, Colin, the nurse is coming shortly." I hoped that were true. I heard him give a little sigh as if to say, at least someone understands. But up till then it had been Carol's job to make helpful comments like. "You'll be right, mate" and I was trespassing on her turf. At least she was in sympathy with him, unlike with 'lazy, selfish' 80 year old Bill in the bed next to me.

    I shouldn’t be too hard on Carol. She had her own issues and was a brick or two short of a load for whatever reason. It wasn’t my place to know, but I hadn’t forgiven her for her attack on Bill the night before, however irrational she may have been.

   All this is of course from my perspective alone, and doesn't give the real credit to what Tracey was doing unbeknownst to me in badgering staff for a real bed for me, one even insisting that all beds were all the same! (They weren’t....) And a hundred other things to try to ensure that I would be as comfortable as I could be for the night.

No ordinary night
   I should also say that this was one of those nights  - a freak one where all sorts of emergencies had come in at once. It happens. Tracey hammered them into giving me a decent room for the rest of my stay in the hospital – which was one day. The morning after, we discharged ourselves, drove up to Armidale immediately, and started our own recovery programme.

   I simply cannot imagine what would have happened had Tracey not been there. I don’t blame the hospital staff in the least. It wasn’t their fault. But I do now understand what it is like to be in a hospital under near-crisis conditions. Many would say what I experienced was not all that far from ‘normal’.

Remember: we get the hospital (and aged care) facilities we deserve. If we don’t demand better from our elected representatives and tell them what we’re willing to sacrifice to have them, then there’ll always be something more important to spend public money on. Like gifts to everyone to buy big TVs. Well, it won’t do you much good if you’re in a car crash over Christmas and wind up in a 4 person room with not enough staff to cope….

   Until about twelve months ago I didn’t think much about it either. Mea culpa too.


  1. There are other situations we don't think about unless we are personally involved -those who are full time carers, sometimes for decades for disabled children;those within the prison system; traumatised people in detention centres; what's happening in our aged care facilities, etc etc!!! Let alone other countries - wars, starvation, disease. Oh dear. The thin edge of the wedge has been inserted! Your tale describes so well the distress we humans can suddenly encounter despite the oh-so-comfortable lives we usually lead. But then -to be too aware of all this requires a very selfless or very strong mentality.Perhaps we all need to exercise those muscles, then, in whatever way we can.

  2. Well said, Julie. There are always worthy competing interests for the contents of the limited public purse. Divide and rule sometimes makes it worse.
    Sometimes I think elderly people looking after their disabled children are on the worst ride of all in this country. If enough people don't care enough, the message doesn't get through.
    My experience in this case was nothing compared with what some go through. What chills me to the bone is the thought of a horribly maimed child in [name a place in the world where this happens every day] taken somewhere where nothing can ease their suffering.

  3. The lioness was looking after her mate in the best way she could
    As she continues to do
    Ain't love grand

  4. And with all the misery, you can see some of the most beautiful sights in hospitals - a stroke victim who is learning to walk again trying to help a room mate who cannot breathe well enough to reach for the food tray. Same everywhere -people look out for each other. All the same, if you have a loved one in hospital, stay with them as much as possible.

  5. Yes, the bond between cancer victims when they come together is almost palpable. And you always feel there's always someone else worse off than you....
    To go to the Peter Mac in central Melbourne is a salutary experience. You start to get some kind of idea of just how many very sick people there are in just one city - and then you think of the millions who must be just as ill worldwide who don't have the fantastic treatment available to them we have.
    And then , you go out on to the street and say hello to the 'real' world you used to inhabit - where only OTHER people got sick.....

  6. Such a poignant story ... reminds me of a night Mum spent in a palliative care ward. The sense of powerlessness was numbing. And yet you see love, real love in action. :)

  7. I've been up to my eyeballs in markets, etc., so have lost track of your blog, Denis. Saw this posting and read it with fascination. I know how horrid these hospital wards can be, for when Carl was in intensive care, he was surrounded by very sick and dying people. Where we all end up, eventually, unless something sudden happens.

    The people in your ward, Denis. Where are they now? No doubt for some of them, their experience was a bad dream and life has stabilised and they have adjusted to whatever outcome came. These are crisis places, and crises pass. Often, certainly in Carl's case, things aren't as bad as they at first seem. Sometimes, of course, they do not improve.

    The problem I've found when dealing with hospitals, etc., is the total absence of any spiritual help. I walked in to the ICU when my mother was having her fatal heart attack, and just when they were all around her with the paddles. A nurse came to rush me away, and I kept asking if that was my mother. She wouldn't tell me!!!! Finally, I got angry and she did. They she put me in a tiny, windowless room, with a bare table and two chairs, and I waited for the news. It was not the high moment of my life. For my mother, it was the last moment. Then I had to phone my father to tell him what had happened. There was not much care going on at that point, and the feeling was brutal and mechanical.

    As for getting the hospital care we deserve and having to share around the resources, well, there is a bottomless pit of money for war, but somehow, there is never enough for health, education, and welfare.

    I think sometimes, though, that without these experiences, we would never develop compassion and continue to live as though, if we're not suffering, no one is.

  8. Hi Joan - we all have periods in our lives when priorities have to change, even if temporarily. You, Julie L, Julie M, - EVERYONE - needing to focus on other parts of or other people in our lives at some stage. It's how things are. But everyone needs their own space as well. Some people give too much of themselves, though they are comparatively rare. I can think of a couple very close to home. One right here.
    Interesting your comments on intensive care... a place where I don't intend to end up if I can help it. It presumes the purpose is recovery to a point where you have a decent quality of life again. In my circumstances, there will be a point at which that's not going to happen, but here's not the place to raise it. Looking at Carl, now fit enough to get up on the roof and do most of the things he could before, Intensive Care was the right option for him, it goes without saying.
    Where are the people in that ward? I don't have a clue. I don't even know if Colin survived. Once we left the hospital, that sort of information becomes confidential and we were none of us in any position to swap phone numbers. I sincerely hope each one of them has no greater worry now than what to get their family for Christmas....
    Your experience with your mother's death must have been ghastly. That must not have been in Australia, though I don't know if here would be any more compassionate. I suppose they don't want potentially hysterical relatives becoming a factor in their emergency procedures, which is understandable, but there's something very wrong with what you describe.
    I wish I could say you were wrong in what you said in the last two paragraphs, but it's true. But the need for compassion is also bottomless.
    In the end, I guess Mother Teresa's words are most apt - something like, if you feel overwhelmed by trying to help millions in need, then at least help just one.

  9. With regard to Mother Theresa's comment: how does the song go, for all us baby boomers: "Do you only care about the bleeding crowd? How about a needing friend?"

    My mother's experience wasn't in Australia. Oddly, it was in the Canadian province which first introduced medicare into Canada. Health care was completely free; you did not even have to produce a medicare card to get treated by a doctor or a hospital. Health care was covered by the government's share of 51% of the natural resources of the province: oil, uranium, potash, natural gas. The province was awash with money. But as the famous book says, "you cannot live by bread alone."

    I couldn't walk right into the ICU at Armidale hospital in order to see Carl the way I could in Canada. I had to buzz and tell someone through a microphone whom I wanted to see. Then I had to wait for someone to come and get me. Oddly, it was nearly 30 years to the day of my mother's fatal heart attack. The longer I stood in the hallway outside the ICU at Armidale, the louder my heart pounded, the clammier my hands became.


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