Facing the light

Had an appointment this afternoon at a hospital to get my leg checked on. It was a small private hospital further out from where I live. I sat in the waiting room watching the comings and goings around me. Maybe it was the suburb, or maybe it’s because more old people get sick than young people, but it was hard not to notice that everyone waiting to be called to the doctor were to some degree old. There was certainly no-one younger than me. The next oldest might have been 15 years my senior.

I’ve never liked hospitals. They’ve always depressed me. It’s the clinical nature of them, the scent of disinfectant, nurses bustling around to serve people not in the best of health. I’ve always walked into hospital and felt my spirits dim just a little. Unfortunately as you get older there’s no reason it should improve, just the opposite. There’s all of that still, but as I get older myself something I never considered before begins to loom larger in front of me. Is this where, or how, I might end up? It puts the fear of god into me.

I watched as patients shuffled and hobbled and wheezed and gasped and got wheeled around seeming half dead. The best of them listlessly read magazines in the waiting room, or tended to the dear other half in much worse health than themselves. You have to expect some decline – I know I won’t always be as sprightly or healthy as I am today. Nor as handsome. I’m sure I’ll come to terms with most of that. I have to anticipate that there will be the odd health concern. That’s life, and I think I can manage that too.

What really scares me is the thought of chronic illness. One thing to another, never quite well, on a steady, but inevitable decline.

I think I’m as determined a man as there walks the earth. I hate losing, and have a perverse streak a mile wide running through me. For many years I refused to countenance the possibility that I might be mortal. I’m made to fight, and too often relish the contest. In theory I’m the guy who will rage against the light with every breath in my body. But then I look about me in hospital waiting rooms like today. I feel a creeping dread. I ask myself, is that how I want to be? Am I happy to ‘live’ like that?

I seriously wonder. I want to live on my feet, and go out that way. That may be an overly romanticised and unrealistic attitude. I’m fit and healthy now – my mind may change as my health does. Fair enough if it does. Yet I wonder what is the point of living a life diminished? I’ve done so much, had so many adventures, I’ve lived big. I don’t need that always. Hell, I couldn’t manage it always. I’m happy to settle into a sedate, pleasurable lifestyle. Fine, but what happens when I lose the capacity to enjoy that life?

I feel almost embarrassed to admit that there are circumstances I think when I will give way. I want to live my way, and go out the same. Maybe that means I let it happen rather than fighting it.

Of course it’s all academic if I turn out to be immortal after all. I still haven’t given up on that altogether.

Such is nature

Robert Plutchik's Wheel of Emotions

Robert Plutchik's Wheel of Emotions (Photo credit: Wikipedia)

I slept another 9 hours last night without thinking about it, which is another sign that I’m recovering from some energy deficit. A few weeks back, just after I shifted house, I was sleeping 9-10 hours every night and fading each afternoon. In the weeks preceding I had driven myself as I never have before, by necessity as it was, needing to pack up a very full house and get it shifted while at the same time ministering to all of mum’s needs, visiting her, meeting doctors, taking care of her administrative needs. It was a sustained period of activity like I had never experienced before, both quite physical – I packed about a hundred boxes and was exhausted each night by the effort – and emotional.

In my experience physical exhaustion is easier to recover from than the emotional. Muscles in fact become stronger with exertion, and heal with rest. It’s not so easy with the emotions, particularly as often there is no respite from the cause of their stress. For much of mum’s illness, and particularly in the last 7 weeks, I felt the strange combination of being on perpetual tenterhooks whilst forever treading upon thin ice. Add in my own personal challenges and it was a lot to deal with.

Mum has gone now. It’s a sad eventuality, but it represents a kind of resolution. Whatever was to happen has now happened. The tenterhooks are gone, the ground beneath my feet now solid. There remain challenges, and new ones as well, but by and large it is easier than before. The body, the mind, seeks to heal itself. The adrenalin that sustained me throughout this effort has now leached out of my system. Sleep claims me longer and more readily in order to recharge batteries run down. And so I sleep 9-10 hours a night until such a time I am replenished again.

Last tears

It’s been a while since I last wrote. I’ve been very busy. I’m due to move out of home tomorrow and have been frantically packing up the house. I might have had that sorted sooner but for the fact that other things have taken me away. Foremost amongst all of them is mum.

The pattern for the last 10 days or so is that I’ll be up and out early with the car packed. I’ll drive the few suburbs over where I’ll deposit the contents of the car – clothes, wine, food from the pantry, books & work stuff – in mum’s empty home. I’ll then visit mum in hospital for about an hour. One day – Tuesday – I even brought her home, only for for her to return to hospital, too ill to remain alone. After visiting mum, or sometimes before, I’ll attend to other things. One day I had to take my two rifles to a local gunshop for storage. On another day I dropped by the funeral parlour to arrange things. Other times I pay bills for mum. or drop a load of stuff off at the nearest charity. Generally I’m home by 1pm.

For the most part I work through the afternoon packing. I’ve barely looked at anything work related for the last month. I’m meant to be studying for Six Sigma, but it’s been weeks since I’ve done that. Nor have I contributed much to this journal. I pack and I organise things – cancelling services, organising removalists, and storage, liaising with people who come to collect my rubbish, or to patch up the walls from where I’ve taken down prints. By the end of each day I’m tired and sore. More than anything I’m mentally exhausted because I’ve crammed so much into my head. Much of that is a kind of grief.

The end is near for mum, though it can be deceptive. I visited her on Friday and she was out of bed reading the newspaper in the chair. She was as good as she gets. I left her a Chinese guide book to go through, and later in the day she called me to talk about it, even searching through the index at my prompting.

I saw her again Saturday morning. The streets are always quiet and the hospital more peaceful on a weekend. Mum was asleep when I walked in. I sat and listened to her breathe. It was uncomfortable. Her breath was deeply drawn and crackly, and would pause sometimes. Facing me, her pale blonde hair across her face, she looked cadaverous. When she woke she could barely speak, though her eyes were bright. Her voice was slurred, her lips thick. It was distressing. I remembered she was going to die, and thought then what an awful way to go. I began to cry, turning to the window to hide my tears. Quickly I regained control. The nurse came in and announced that they were moving mum that afternoon to a hospice, as we had all agreed. Another visitor arrived and I took a break. I walked outside in the cool fresh air and I cried again.

Yesterday I visited her at the hospice in Wantirna. She was worse again. It was terrible. She lay there with her eyes half open, neither asleep nor quite conscious. One eye was more open than the other. Her mouth moved as if to speak, but no words came. I sat beside her holding her hand and talking just to make noise. When the doctor arrived there were tears in my eyes again.

We went to another room and I asked what had happened – the decline had been so rapid. She was a young and sympathetic Asian doctor searching for answers as I was. I was surprised to find that there had been little communication with the hospital – they were relying on what we had to tell them. I explained how well mum had been Friday. She told me that the hospital had upped my mum’s dose of morphine from 60 to 100 on Friday. I had not known this, and didn’t know why. The dose had been reduced down to 60 whiule I sat besides mum, and maybe that might make a different. To my inexpert mind it seemed more than coincidental that mum should become virtually comatose at the same time that her dose had been increased. I found hope thinking that she might recover, if only briefly.

I left after an hour. As I sat in the car in the carpark different things came into my head. I thought how I never wanted to see mum like that. No child should see their mother in that state. Given a choice I knew I’d have stayed away. Even as I thought that though it hit me that I might have seen my mum for the very last time. It seemed so unfair, so wrong. I wanted to say my goodbyes to the mum I remembered. I wanted her bright and knowing. I wanted to take my leave properly. That was denied to me – life is not that neat. On Friday I had bought her a packet of snakes – she liked snakes – and had left giving one to her and taking one for myself. If only I had known then.

In my pocket as I drove away where some of her jewels. I had left her rings, but on the nurses advice had taken the bracelets and mum’s watch from her, total value about 30 grand. It was sensible advice, but I felt terrible about it. It was almost like acknowledging, you’re done now, you don”t need these, I’ll take them from you. It seemed wrong that she should not be wearing them – bling is so much a part of her. It felt like I was stripping the dead, and I felt guilty at that.

Guilt is present, even if irrational. Last night after packing more I sat down to watch TV and a program I knew mum had been watching. I couldn’t help thinking how she was lying there alone in her bed, suffering, confused probably, dying. It seemed wrong that I should be taking my ease while she has trapped somewhere between life and death.

One thing has changed in me through this: I’ve come to term with my tears. I’m not a man who likes to cry. Sure, some of it is embarrassment, but more is the loss of control it heralds. I’ve got used to my tears now, and understand their need. I still don’t like to be seen like that, but realise it is normal. I break down sometimes. I’m sensitive to nuance and feeling. I pack something away that reminds me of mum and I am sad again. I call people to tell them of mum and in response to their kind words find myself choking up and unable to speak while they comfort me from a distance. I’ve cried as I’ve been writing this. To lose your mother at any time is pretty overwhelming. To do so like this is cruel and inhumane. Tears are one of the few outlets we have.

Growing old

About a month ago I went through a heavy training load that left me feeling sore and weary pretty well ever day. I pushed on knowing that it was my body adjusting to the stresses I was exerting upon it, but there were days when I felt such an old man that I had to have a break to allow my body the chance to properly recover. In truth the breaks between sessions are as important as the sessions themselves. In the month since I’ve dialled it back quite a bit – psychologically, as well as physically it’s hard to maintain such a high level, but then we’re not meant to.

That’s all well and good, but I’ve found the few days getting out of bed that I’m as creaky as an old gate. I feel every fibre of every muscle; it seems to take me minutes to properly straighten up, and I tread lightly as if upon eggs. I’m pretty fine after about an hour, but this weariness is unexpected and without obvious justification.

The other night I met up with an acquaintance within a group of friends. As you do I asked her how she was, the sort of anodyne pap that fulfills a meaningless convention whereby the respondent is supposed to respond with a “fine”, or a “not bad”, regardless of whether they’ve just had a leg amputated or been diagnosed with scurvy. Of course she failed to follow convention, and instead began telling me about the mysterious pains in the back of her head which no doctor can help her diagnose. Rather helpfully I thought, I suggested it might be a brain tumour.

Now this not a person I’m particularly close too or fond of. She’s one of those people who take pleasure in being outrageous or provocative, something which I’ve always found a little tedious – but I’m happy to share her company in a convivial group. She has a history of ailments which baffle medical science. For many years now she has complained of a multitude of symptoms that don’t really marry up to any particular disease, and tests on her are inconclusive. One doctor at least, an expert in his field, thinks it’s all in her mind, and much of her family think likewise. I’ve never had an opinion on the matter. I was never that close to her to really care, and it seemed largely immaterial to me.

The other night as she reported her latest ailment I began to think that perhaps it is imaginary, though I’m too ignorant of these things to be confident of that. What if it is though? What does it mean? Is it some cry for help, for attention? Or is it more simply a case of common symptoms becoming exaggerated in grandiose terms in her head? Sure, there’s a small pain there, but it’s only small and the sort of thing that most people will feel at some point without giving it a second thought. It’s not a brain tumour Mildred.

The reality is that as you grow older the aches and pains increase. There should be no surprise in that. Wear and tear is almost a given in nature, and we are part of nature. Years of exerting ourselves, of stressing our system with random exercise and inadequate diets, of simple and consistent use, must have consequences. I’m strong and reasonably fit, but these muscles have been well used over the years. They’ll report for duty, but sometimes they’re slower to get there.

Likewise in the little bugs, infections and ailments along the way. We all know people who find cause for concern, even panic, in these mostly trivial complaints. I may be blase, but I see those things as being pretty much a part of normal life. When are you ever 100% healthy? Just about never. I’ll take them in my stride, as most people do, unless they become so intrusive as to impact on my quality of life.

Perhaps that’s the situation with this girl. Perhaps her ailments are real enough and painful enough that normal life becomes difficult. But perhaps what she is suffering from is not really much different from anyone else. Where others accept it she has not, or will not, for whatever reason: there must be something wrong? Maybe it’s a situation where she has not come to terms with, or understood, that the body does age. This is a part of the script. Or maybe she does have a brain tumour.

I’ll never again be as fit and as healthy as I was 20 years. I may rue that some days, mostly on behalf of my vanity, but I’m sensible enough to realise that it’s a fact of life. Generally I’m well, and better off than many people. The aches and pains of recent days are tiresome, and a tad surprising, but soon enough I expect I’ll be back to my normal state of being. And, like much in life, there is a trade-off. I may get wearier as I get older, and feel muscles I never I knew I had before, but I also know more. Up to a point – a scary point – as the body declines the mind becomes sharper. And that makes up for a lot.

Not knowing

This afternoon I’m off to the hospital with mum for one of her regular check-ups. The last was about 6 weeks ago, and both of us came away from that frustrated with the outcome.

Mum’s oncologist is a pleasant enough character with a well developed bedside manner. He’s highly rated in his field, and I don’t doubt his expertise for a moment. What is frustrating, however, is the detail of information we get from him.

It must be hard to be in his position dealing daily with people who are going to die of what you treat them for. I imagine you develop a thicker skin, and must be careful to maintain an impersonal, but pleasant, distance. I understand that, and I don’t even mind too much the fluffy bedside manner, but what the likes of him must understand is that when you’re life has been officially declared finite you want more information, not less. It may seem strange, but you’d rather know the worst than waddle along in ignorance.

Mum has had a pretty full-on cough for about 3 months now, the worst she’s ever had she declares. Now it’s easy to think it is the cancer, but it could also be a virus, or a winter cold, or something else altogether. Mum may have cancer, but she’s also 71 and going to get hit by these things along the way.

When we last saw him we discussed the cold, and he prescribed some medication. If it doesn’t go away he said, we’ll get a deeper scan done.

Initially the cough improved, and upon news of that the scan was very quickly off the table. I was upset at this. I don’t like to be negative, but I figure there’s a lot more going on than we know. One of my complaints has been about the CT scans. The CT scans last year pretty well cleared mum of any cancer. It was only a PET scan, done as a precaution, that actually revealed the cancer in her lungs. Defying all logic mum hasn’t had a PET scan since. Instead her progress or decline is measured on CT scans, which revealed nothing in the first place. It seems ridiculously illogical.

When we saw him last time he said in his flippant way that we should be celebrating – the scans are clear. That doesn’t work though. Mum feels things happening that defies such news. Common sense makes me much more cautious also. Rather than sitting down and telling us the scans are clear, but…or ordering a more detailed scan, or actually putting some perspective around the situation, he leaves it at that. I’m pretty sure he knows there is nothing he can do. The choices are chemo or no chemo, but as chemo was doing so much damage it’s not really an option. So okay – but tell us. Don’t let us speculate. Don’t give us empty hope. Drop the sugar coating and be straight-up.

Predictably mum’s cough got bad again and went from bad to worse. See your GP I told her, get another opinion. She did that and quite rightly concerned he went and organised the scan the oncologist never did. Now it’s not a PET scan, but it is a CT scan that analyses at a much finer level. The results came back and sure enough the cancer the oncologist had claimed was missing showed up in two places – about half an inch wide at the top of her left lung, and an inch wide in the bottom of her right. What does this mean? Is it good or bad? That’s what we don’t know – and that’s what the fucking oncologist should be telling us.

Mum tends from one extreme to the other. On her good days she says she’ll go on for years. On her bad days she thinks the end is close. I try and counsel her to be more stable. Don’t pre-empt anything one way or the other, life normally and enjoy your life while you can. Should I be doing this? I don’t know. My view is that she’s on borrowed time – the 3-6 months she was given expired 3 months ago – and all this is a bonus to be cherished. Enjoy it.

Mum appears pretty good mostly, which is deceptive. She coughs, she’s weaker, more fatigued, etc, and she’s certainly getting worse, but that shouldn’t be a surprise. It is, all the same, a bit of a shock. I dread seeing her decline. I can’t even imagine her ending. So much of this seems unreal. I know though how quickly things can change. When I counsel her I think there is a large element in it of reassuring myself. I call her every day to see how she is, as much as anything to be a steadying and reliable comfort as the days go by. I’m who she leans on most, which is understandable, though it would be nice if my sister did more – not once has she been to one of these meetings with the doctor. For me and mum we have become closer, and are spending more time together now than for years. We have lunch or dinner regularly, the other week I took her on an expedition to Costco, soon we’re having High Tea in the Myer Mural Hall, and so on. Like I say, make the most of this time because you’re a long time dead.

I don’t know what the doctor will say today. We’ll be riding him hard. It is what it is.