Soon


I just got off the phone to my mum. She’s in hospital. It was an awful conversation. Mum spoke between deep, rasping breaths. She sounds like she’s run a marathon. There’s fear in her voice, and a kind of desperate resignation. I listened to her holding myself in. I felt like crying. I felt so sad for her – it seems so wrong that anyone should endure this, least all someone you love. When I spoke it was in short words and grunts. I couldn’t trust myself to anything more. I hung up and felt distressed.

Listening to mum like that it’s hard to believe that she has anything more than a few days to live. You wonder how people survive this. She doesn’t want to survive this. She’s ready to go. I understand that utterly. I love my mum but I don’t want her to suffer this – it seems so cruel and unnecessary. I love her, but I’d push that button if it meant she had peace. Still, it seems hard to believe.

It’s been a bad week. We saw a doctor a week ago and she gave a moderate prognosis. Since then mum has deteriorated significantly. At times she is disorientated. She has a hacking, ugly cough. She has become so weak that she can barely get out of bed, and can barely do anything unassisted. She is perpetually exhausted, some days talking as if she is heavily drugged, her lips thick, the words slurred.

On Saturday night she called me. It was about 10pm. She was scared she told me. She had been feeling terrible all day, and with the disorientation that bewilders. Her voice was full of anxiety. I tried to calm her. Try and sleep mu, I told her. Rest and we’ll see how you are in the morning. If you can’t call me. We rung off and I didn’t hear from her again. I went to bed feeling vaguely guilty. I almost called to check if she was alright, but realised that was silly. Best to trust that everything is ok.

At 6am my phone rang. It was my sister. Mum had called her, in a panic as Sharon said. She wanted to know what to do. I told her to take her to the hospital, as had been on my mind since the previous night. I rang mum to tell her what was happening. She sounded not terrible. I told her to call me when she was admitted. I asked for her to get the doctor to call me.

I lay in bed, sleepless now. I opened the blind and looked out at the pre-dawn world. I could see outlines in the darkness. It was quiet. I thought it was probably the quietest time of the week, no-one going to work, and everyone home from the night before. I made a coffee, I waited for the sun to rise, for the newspaper to be delivered, for the phone to ring. At about 10 mum rang. She had rested, the doctor had been to see her and said this was the the ‘beginning’ – the begin of the end, I presumed.

Early afternoon I visited mum, dropping by my sister’s first to collect a change of nighty and some toiletries for mum.

Hospitals are quiet Sunday. All a bustle during the week as people come and go visiting specialists and the like, come Sunday a skeleton staff looks after the patients and nothing much more happens. I’m never much good in hospitals. Give me a situation to resolve, an issue to act on and I’m efficiency itself. Sitting though, visiting someone sick in the clinical surrounds of a hospital sets me on edge. It was perhaps worse yesterday as this was my mum near to death. I hardly looked at her. I didn’t want to see her like that. Our conversation was practical and cursory. Mum was tired, the blinds closed. She was well enough, but was happy to lay there doing nothing. I left after about 30 minutes.

I rang mum again first thing this morning. I half expected to find that mum had slept well and was feeling better. That wasn’t the case. She’d had another miserable night. She was so weak, she told me, that a nurse had to help her out of bed and to the bathroom. I called the doctor. It’s a different doctor from usual, this one a young Asian woman, approachable, friendly, and much more candid than our customary doctor. I asked to know the situation.

The doctor admitted that mum had declined significantly just in the last week. She said that if mum had another scan today it would show much more than the scan of just 2 weeks ago did. Mum was in the final stages, a decline we could hope to manage, but could not prevent. Why now? Sometimes it’s like that. It’s like the cancer has kicked up into another gear. What it means is that mum will be in and out of hospital, and a hospice must be considered. I’ve spoken to home palliative care and that will be necessary. Though she didn’t put a date on it the sense I got from the doctor was that 2 months would likely see mum out, though, to be frank I can’t see mum lasting longing than a month. If she doesn’t improve from how she was on the phone before then I can’t see mum living beyond the next few days. And, if she doesn’t improve, I don’t want her to.

It’s a bit unreal. I’ve anticipated a lot of the feelings going through me, so the shock is not there. It hasn’t diminished the depth of feeling, however. It’s a hard time. My mum will be dead soon, and conceptually if nothing else that’s hard to comprehend. I’m thankful that I shared time with her. Just last week even, those are the things I’ll remember. That’s probably the last meal I’ll have shared with mum.

No place else


Who gets head colds in summer? Me, it seems. Those aches I complained about last week turned out to me more than just the creaking of old bones. I’ve got a serious cold of the dreaded summer variety that since Christmas has hit me hard, particularly at night. By day I’m a bit achey, a bit blocked, a bit tired, and a bit inclined to cough. By night I get clogged with it, my head aching and at its worse so badly clogged up I had to breathe through my mouth. I’m not sleeping well.

I might not normally report on a passing cold, but for the inevitable thoughts that flow to me. I’m not suffering terribly, but it is frustrating and it is preventing me from activities I might normally have jumped at. I’m impatient for it to be over, to get back into things. And then I think of mum.

For me my cold will likely clear in a day or two. Mum doesn’t have a cold. She has cancer, and top of that now diabetes. These are not going to clear up. The combination of the two makes her feel much sicker than I do, and it’s only going to get worse. I can look forward to good health again shortly. Mum has no such comforting knowledge.

I wonder what that must feel like. I know for a fact that often mum feels so badly that such thoughts are irrelevant. All she wants is to rest and get some relief. Tomorrow is another day. Mum is not inclined to such reflection, but still it must occasionally cross her mind: the bleak reality that there is no escape, that it’s only going to get worse, and then…what?

Too much imagination can be a bad thing. So much better sometimes to be a stolid dullard for whom such thoughts are so much mystical whimsy. I wonder though at the same time what insights are possible once you’re on that slippery slope? What comes to you, what shifts inside? Does the world look different? Does wisdom come with acceptance? Or does uncertainty lead to fear? Do you find yourself staring into the abyss wondering what lies yonder? Does spiritual belief, or curiosity, blossom? Or does the pain block all of that out?

I spoke to my sister yesterday about mum. Mum has diabetes now and quite badly and for all I know that will be the thing that kills her. She’s in a difficult situation as the treatments for cancer and diabetes conflict. The diabetes must be managed though, meaning that the cancer will likely go its way. Not for the first time we spoke of the hated uncertainty of the situation. We’d rather know the worst. It sounds awful, but I’d like a fucking date. It pulls you and pushes you. You think one thing and then the other. You don’t know what to think, and at times find yourself with thoughts you’d rather not. I feel this and yet I’ve had a stronger sense of where mum is going than my sister has. For some reason I’ve always thought March. My sister things years and then she thinks weeks.

Still the thoughts that rattle through my head have yet to visit my sister. Perhaps they never will. She has not my imagination. Nor curiosity.

So I have my cold and I think about my mum and talk to her and feel the utter helplessness mitigated by the knowledge that there is not anything anyone can do. My cold will pass, her cancer won’t; she must follow where it leads and no place else.

 

Considerations on death


As of Thursday morning mum’s in hospital with diabetes. Given she has terminal cancer it seems almost immaterial, strange given that diabetes is no small thing. In any case the hospital is a good place to be for her right now. I don’t know if the diabetes will play any part in her prognosis, but the rest and attention will do her good.

This comes after a visit to the doctor on Wednesday. I’m pretty jaded these days. I go along, I ask questions, I support mum, but I don’t expect a lot. “You watch,” I said beforehand, “you’ll walk in and the first thing he’ll say is ‘you’re looking well'”. And I was right.

Mum is in decline as I’ve noted before. Nothing is really different, except that everything is just a little bit worse. The only little thing different was the thirst that mum reported. That prompted a blood test, which revealed the diabetes. I got a call from mum at 7.30am Thursday reporting the results to me: her blood sugar three times what it should be, the likelihood of diabetes, and the need to go to hospital. Situation normal.

It does feel normal in a funny way. You know that things are going to get. You don’t know exactly what will happen, but you know that things like this will occur, and that every chance what kills her won’t be the cancer, but some secondary ailment the cancer induces.

Not surprisingly I think a lot these days about the inevitable progression of this. I think of mum and what’s happening and for reasons I can’t explain find that I have come to associate her situation my aunt, dead for 7 years now from cancer. It’s strange that it’s my aunt that I recall. Many others have died since, and some closer. It’s her though that I remember. I always remember an occasion we had drinks together one Friday night in Sydney towards the Rocks, a small, mundane memory that has stayed with me ever since. I remember other things then, one memory becoming another like a bunch of synaptic dominoes: attending Handel’s Messiah at the Opera House with her when I was a kid, a party in her Watson’s Bay apartment speaking with a US marine, visiting her in her office in Spring St, Sydney, drinks at the Grand National with ‘Young’ Jack in Paddington…. I remember then that she’s dead, and how she died, and how I remember bits and pieces but the rest is gone.

People die. They go from you. You remember them but most of what they were and what they did is gone somewhere else. In time you remember vague and random snippets. One day it’s all gone, like a bunch of old and forgotten family pictures dumped onto a bonfire.

Sure it sounds bleak. You get that though thinking about someone you love knowing that soon they will be gone. You don’t want to lose those things. You want to remember them while you can, want to recall them like living links between you, let’s not forget, let’s not overlook.

I often find myself thinking of mum from within that context. Watching a program the other day set during the time of the Suez crisis I thought I’d like to ask mum about that. What do you remember mum? What were you doing then? It’s the same for all these other moments before my time, or or when I was too young to know, like the Cuban missile crisis, the day Holt disappeared, Nixon, even the little local things you see pop up on TV occasionally – famous murders, celebrity mishaps, and so on. I’m genuinely curious, but I also want to see it through her eyes, as if I might gain an alternative understanding of her in so doing. She is little interested in that. They are things that happened, that’s all. For me, outside, they are all part of the sweep of history, the ups and downs, the dramas and controversies that fill newspapers one day and are forgotten the next. I suspect that for her that much of that was just part of a background tune that changed pitch and tempo occasionally, before returning to a steady rhythm. So I come up blank there.

It’s strange knowing that soon she will end, and with her those moments, those memories. We put her in a coffin, and at the same time we may as well put all those memories in a box too, captured moments that will never change now, but slowly forgotten. That’s the world though. Multiply it by a million and that’s what the world loses everyday.

I don’t say any of this to mum. I doubt she would understand. I don’t really say any of this to anyone. Sometimes I think people think me almost as too erudite, somehow different, but it’s just, I think, that I see a broader perspective. I know what I’m losing, and it’s not just a mother. It’s not my role to say these things either, to be that person. I’m the strong and reliable one. I’m the unflustered, unflappable, capable son managing and ordering things. I get frustrated sometimes at being confined to that role, ever and always. You feel pushed into that role in the absence of anyone else, defined in your role relative to the roles played by other people. Take a little bit of what you have, mix it in with what others need and want, what they expect, and that becomes the part you play.

It’s not a bad role, and I’m glad to support and help. I play an important part, but I’m not sure if what I need in this gets any real air. Hell, I know it doesn’t, not outside these pages. The problem really, isn’t the role I play or the persona I project, it’s the fact that I’m not really the man I sometimes (and only sometimes) wish to be. Ultimately I understand this as some kind of existential dilemma mum could never understand. It’s not the role I play, but the fact that I can never really play any other role but that.

 

Then what?


I ring Mum every morning, around 9 o’clock. Mostly our conversations are pretty mundane: what’s happening today, what happened yesterday, how are you feeling? The last question is obviously the key question, and what gets asked first. Often I don’t really need to ask. Often mum will the answer the phone and attempt to converse with me between hacking coughs. Sometimes it’s so bad I have to take the phone away from my ear. It’s always worse first thing in the morning, but never good.

I don’t know if I’ve written how mum is now off the chemo. It means she feels generally better day to day. It’s a tough gig allowing yourself to be infected with these toxins which, however, delay the spread of the even more toxic cancer. So mum is off that, feels better, but evident also now is the spread of the cancer now unchecked. It is to be expected, that’s the deal, the particularly tough equation: do the chemo, extend your life, feel shithouse; or ditch the chemo, live better, die sooner. At some point the cancer was always going to get the upper hand, now it’s only sooner.

I know that sounds bleak, and though them’s the facts I don’t mean it to be that way. Mum is in good spirits. Sometimes she thinks she’s another year in her. She still does things, sees people, is mobile. We, her family, look upon her not knowing what to think. It’s so hard to know. Think nothing seems to be the most simple option, but it’s hard not to. Of all of us I am the most successful at that. I preach the mantra: take each day as it comes, enjoy your life. She has now gone longer than the initial prognosis and every day therefore is a bonus.

We looked at having a Christmas holiday together. Mum wanted that, a last treat for us all. We looked at Bali, then thought if something happens it’s a long way from home. Besides, we don’t know how healthy she’ll be mid-January. Then we looked closer, a house down the Peninsula somewhere, Sorrento or Blairgowrie, but we’d left that too late. Now it’s more likely that mum will spend a few days with my sister and her kids down Torquay. We’re talking about taking a trip together to Queensland to visit my stepsister in Coolum. It seems to be travelling with my mum, but I think I’d enjoy it.

For Christmas day we thought we’d something different, and a little special. There are only 6 of us now, and it’s likely to be mum’s last Christmas. We booked to have Christmas lunch in the restaurant on the 35th floor of the Sofitel in the city. The kids will love that. I won’t mind either.

It still feels impossible that she might be dead soon. It’s a feeling almost without emotion. How can it be? Like if someone told me gravity was different in New Zealand? It’s a strange fascination that you can’t quite find yourself comprehending. Then what?

At the hospital


First thing this morning I met my mum at the hospital for her monthly check-up. She went in early, and by the time I arrived had already seen the doctor – but she had news.

For months we’ve been pressing for something more concrete from the doctors. It’s difficult, I know, to offer a prognosis with any precision, but we know that. We just want to know something, rather than be left with our own uninformed prognostications and fanciful notions. Let’s gert a coffee, she said.

We’ve been discussing for weeks the questions we wanted asked of the doctor. This time we wanted to pin him down. In my absence mum had asked him the pointed question: how long do I have? For once, it seems, he dropped the cheery bedside manner and spoke honestly. “Well,” he said, “if the chemo reduces the cancer and gets rid of your cough then maybe 2 years. If it doesn’t, maybe 4-5 months.”

It was strange hearing this despite it being pretty much what I had thought. My sister, who lives in some denial I think, had asked last week what I thought. I pondered it, searching to discover what I thought on the subject. “February,” I said, and it seemed a fair estimate.

Now the chemo may do it’s thing, but history tells us that even if it works it won’t be as simple as that. Each time mum goes to have her chemo she is tested first to see if her body can take it. The chemo, unsurprisingly, knocks her around. Her platelets drastically reduce, her immune system sits on a knife edge. Half the time they have cancelled the treatment because her body is not up to it, and I can’t see that improving any. On top of that the chemo makes her feel dreadful. She’s in a bad way right now. She has a terrible cough directly related to the cancer. She is weak, tired, has hot flushes, heart palpitations. Much is the cancer, but much is the treatment.

I don’t think I’m a pessimist by nature. I believe in things, in possibilities, in general I have confidence that much can be overcome by will and commitment. Yet I am not confident now. My mind defaults to the worst, not because I’m a pessimist I think, but rather because I have watched mum decline, because I am doubtful that the chemo is feasible in the longer term. It may not be 4-5 months, but I don’t think it will be 2 years.

After our coffee I went upstairs with mum to the chemotherapy area. Around the room people, mostly old, lounged in comfortable looking chairs with IV’s looping into their arms. They looked relaxed, almost mellow. We were shown into an adjoining room. We sat and talked, waiting. Once more I had that feeling of unreality: is this really happening? Once more I couldn’t quite believe it. Is this really what its come to?

We were joined by an Italian family, parents and a daughter. The mother was small, when she sat her feet didn’t touch the ground. They spoke little, humbled and made silent by the occasion. An elderly Chinese woman neatly dressed and with rosy cheeks came in and sat down. She smiled at us as if she were an old hand. It happens to everyone, I thought. Anyone. Morning tea was served by bustling women in hospital smocks: coffee, tea, or juice? We waited for someone to attend to mum. When they did they spoke with the kindly voices people use with children.

I kissed mum goodbye: the chemo was going ahead. I walked by the shuffling sick people and out into the bright sunshine. I got in the car and drove away. The radio was on and I listened while my mind went ahead of its own accord. Why is there cancer I wondered? What is the point of it? It seems a good question now, but it burst from me like a gasp, a reaction to what I had just witnessed, the emotional residue of the confusion that I felt, with a little futile anger for good measure. Then my mind took over. There is no rhyme to it. No reason. It happens.

My mind went in those circles while I drove instinctively and without conscious thought, until I was forced out of that again. “Come on Volvo, you fuckin’ goose!” I exclaimed at one point at the car in front of me paused at the green arrow. As the Volvo turned I felt the disconnect between what I was feeling inside, what was happening to mum just a few kilometres away, and the banal instinct that had me abuse the driver in front.

In the end there’s little to say, and not much really to think. It is, it happens, it progresses, one day it will end. For me it is oppressive, one more small stone after another added to the pile slowly crushing me. That’s how I feel. How mum feels I can only imagine.

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.

Last suppers


I went to dinner with mum last night, just the two of us. We went to an Italian restaurant in Kew, Centenove, far better than the average suburban restaurant. It was a civilised and pleasant evening.

It was good to get away from things. I think we both felt that. It was good to meet up somewhere in the middle and enjoy some of the great pleasures a civilised society can provide. The food all night was excellent (the veal cotoletta was the best I’ve ever had), the wine excellent, the service efficient and friendly, and the general atmosphere convivial, lively and warm. Towards the end of the night mum ordered a Dom Benedictine on impulse and I joined her with a PX. It was that kind of night.

For all that nothing was avoided. Mum has been a little down lately. Last week she attended two funerals on the one day. One had died at the ripe old age of 95, but the other prematurely of cancer not 6 months after diagnosis. Then a few days later a friend who had been diagnosed with cancer at the same time as mum reported how he was now in palliative care after doing so well. Not surprisingly mum felt pretty depressed by all of this.

She admitted last night that she was scared of dying. That’s natural too, and yet I felt on hearing it a kind of chill. Why wouldn’t you be afraid of dying? Except I had never thought of that aspect. Maybe it was because mum seemed so philosophical about the whole thing. There was the impression that she had come to terms with it, and in some ways was ready for what was to come. I suppose it doesn’t matter how ready you are, it must seem terribly daunting as it comes near. She told a story of the 95 year old, a strong woman by all accounts, who was observed shaking in hospital. “What’s wrong with you,” they asked? “Are you sick? Cold?”

“No,” she said, “I’m afraid of dying.”

It still seems mightily unreal to me. How can I be sitting opposite my mother sipping on a fine sherry enjoying a lovely evening knowing that soon she will be gone forever? How does it change from this to that?

We talked of arrangements amongst other things. We are writing her eulogy together. She spoke of who she wants to speak at her funeral. We discussed things that still need to be done, made suggestions for this and that in a tone totally foreign to the subject.

Inevitably the conversation turned to memories. She spoke of her mother and father, then her aunt who she was particularly close to, and her uncle, a lovely man I remember as being an old style Australian – tall, lean, a laconic nature, a wry sense of humour, and a kind, warm heart. He used to call her Ooks she said, and would never wore a short sleeve shirt. As she relayed her memories I played in my mind my own memories of them, all dead now, but once as large as life and fondly part of my life. Do you think you’ll see them…up there? I asked at one stage. Yes, she said – mum is the only one of us who believes in God.

We spoke of more recent memories, of people and times and moments we all shared, so fresh, so real and vibrant, so now – and no longer. Once more, as I have times before this, I felt crushed by the sheer mass of these memories passed on, and aghast to think that when mum goes so to does my link to those people and that time. How can this be? How can this be?

It was a nice night. We met well and enjoyed the occasion. I was glad to have these moments with mum. We parted having shared a lovely meal. But with each moment the time comes nearer when mum becomes a memory too, and I just can’t understand that.