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 will 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 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 will 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 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 that we should be celebrating in his flippant way – 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. Live 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 mum and me, 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.

Nearing the corner

From the National Cancer Institute. http://pre...Image via Wikipedia

I went with mum last week to visit her oncologist. It had been about 6 weeks since her previous visit. Early in the year, regular chemo was scheduled for her, but her blood levels went into meltdown after each dose. Every week she would have her blood tested to see if her blood had recovered sufficiently to begin the chemo again: every week, the answer was no. The result was that even though we’re nearly halfway through the year, mum has only had three sessions of chemo when 12-15 might have been expected.

The last time we saw the doctor, he agreed to pause any attempt at chemo to ensure that mum recovered sufficiently to begin again. Mum is crook enough without picking up an infection in her weakened state. And the chemo, unsurprisingly, knocks her around.

It’s been about 8 weeks then since mum had any chemo, and she’s felt as good as ever. Going in to see the doctor last Wednesday, she considered telling him to hold off the chemo, or at least space it out. It’s the old balancing act, quality of life versus quantity. You want to hang on to life, but it has to be a meaningful life. I understood, though proferred no opinion – it’s a decision only she can make.

As it turned out, it’s what the doctor ended up suggesting without any prompting from us. It seemed pretty common sense. There’s no guarantee that the chemo is doing much, and if you’re doing well, then why change it? We agreed to meet again in another 6 weeks, with the proviso that if anything changes before then that we come in again and review the situation.

It’s still very hard to comprehend that mum has cancer she will die from. She seems pretty well. She shows few outward signs of it. And she’s been my mother all my life: how can that possibly cease?

Last night she rang sounding terrible. I could barely understand her. I gathered she had a serious cough and cold blown up out of nowhere. The sub-text clearly was the question as to whether it was cancer-related? You can’t presume that I told her. That’s my line; keep it calm, keep it reasonable. It’s been a cold and wet month, and colds are not uncommon.

I spoke to her again this morning. She sounds no better and reports pains in her stomach. She is going to her GP. I don’t know what to think. At the back of your mind is the nagging thought that it could be the cancer. It’s almost the easiest thing to believe because it looms so large in your mind. And I am reminded how quickly things can change. Whether this is just a cold or something more, the point is the same. It’s just around the corner, and the corner may come a lot sooner than you think.

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I went with mum to visit the oncologist last Thursday. We went to the Epworth hospital in Box Hill. Like many people I dislike hospitals. They give me the creeps. I sat there in the waiting area for us to be called in. I exchanged small talk with mum and with my aunt who had come along to. I cast an idle eye over the other people sitting there. Most where old, and most of the patients appeared to be men. They were a collection of largely shambling, breathless men sitting there patiently with their wife at their side. They seemed humbled in a way, which is what serious illness will do to you I guess. How do you fight the mysterious might of the invisible flaw that threatens your life? Sitting in the doctors waiting room you place your faith in the doctor, and in God perhaps, your wife clutching your hand.

It was a depressing scene for me. I sat there fit and healthy and determined to remain so. I did not want this decline. I was horrified to believe that I to might be subject to this one day and be just as powerless. To live between doctor’s appointments swallowing drugs and scratching out the months is the life of thousands across the world, but it seems no life to me.

It’s not death that scares me. It’s the powerlessness. Of being a mere pawn in the struggle and knowing it. Of becoming irrelevant and dispensable as I grow frail and tired. I’ve seen so many people just wind down even when they’re well. The driving force that kept them fit and vital wanes when they find they are living day to day without real purpose. That’s the key to it: purpose. It’s what keeps us alive. Just like a shark needs to move constantly forward to stay alive we need a sense of purpose in our lives to do the same.

I once wrote a poem of sorts about that. It was derisive in a way, amusingly bitter. The movers and shakers of yesteryear, the captains of industry now retired filling their empty hours trailing their wives in the supermarket like children with their mothers. That’s not for me.

We were called in. The oncologist asked a few questions and then examined mum, and then we discussed her case. Without going into detail the basic facts are these. Mum has two tumours. The smaller tumour is the primary and might be operated on but for the second tumour. The second tumour is larger and in some kind of pouch. He spoke of giving mum a mix of radiotherapy and chemo daily over a six week period. When prompted he admitted that the cancer was advanced and quite aggressive, but reckoned she had a 50-60% of surviving.

It’s funny how everything is relative. A month ago if you had told me that mum had a 40-50% of dropping dead I’d have been aghast. It’s different now. We walked into his office fearing the worst. Walking out this seemed a kind of good news. We talked it up like that and it was only later that I stopped to wonder at it. Yes, mum will probably survive, but it is a thin margin. She may equally not. What has happened in the last few weeks is that the goalposts we were so familiar with and took for granted have been moved. We have been conditioned to a new reality, and anything that brightens it just a little seems like a positive.

Don’t get me wrong: I am much encouraged. I expect that it will turn out okay, but I know it might not. It is looking better, but we’re not out of the woods yet.

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Altered perceptions

As I walked to work this morning, I looked by my left shoulder at the low winter sun haloed behind a solid wall of pearly cloud. My gaze lingered on it. It was a pretty sight, and there was something almost classically symmetrical about it. It was cold. Glove weather, I thought as I pulled a pair of cotton gloves on. The cold stung my face, and it seemed the coldest it had been yet this year. I pulled my coat close to me and went the same way as I did every day. I listened to my iPhone and cast sleepy looks at the familiar pedestrians heading towards the train or tram or school. I said my hellos at work, booted up my PC, checked my email, and then went across the road to get my coffee. For all the small variations, this has been the pattern for months on end. Everyone has a pattern.

Sometimes the pattern becomes disrupted. It needn’t necessarily be something within it that changes – the way to work, a different coffee shop, etc. Sometimes the change is within you so that you find yourself perhaps seeing things differently or perhaps seeing what your eyes had previously slipped by. It’s not that there is a sudden fascination in these things; rather, something has been shifted – been given cause to shift – by other things. For me, those other things right now relate to my mother. Late yesterday afternoon, she saw her specialist to get the results of the tests she had last week. It was meant to become a lot clearer. This was the drum-roll moment, so we thought when we would discover how serious the cancer was and what the prognosis is.

We got little of that. I wasn’t there, unfortunately, and so I only have second-hand reports from those who were. Most of the information was relayed in dribs and drabs, and much of what has been reported to me seems puzzling and sometimes contradictory. Right now, we have no clear idea of what the situation is.

I don’t know if Mum forgot the important stuff or didn’t ask the right questions; or if the doctor was deliberately opaque, as they are apt to be, in matters of life and death. It is frustrating and inconclusive when we hoped to get something more definite, even if it was to be bad. It’s the unknowns that drag you down ultimately, but then I guess for all of modern science, there are still variables and contingencies that add up to a lot of scientific unknowns. Something like this, a doctor doesn’t want to commit too much lest he raises hopes falsely or dashes them. It isn’t an exact science, we know that, but I would like to have the boundaries marked: best case, worst case, most likely.

In all of this is a personal experience. Over the journey, I know of seven family members who have had cancer. That history informs your thinking and your expectations. I try to guard against that: every case is different, after all. Still, in my experience, the score-line reads 7 zip to cancer. In every instance, it has been relatively quick, if rarely pretty. And so potentially, I believe the worst because that is my experience. It’ll get you every time.

I’ve read a lot online, and whilst it has been informative, it has also been frustrating. There are clear questions I would like to ask so that I could make my own assessment at the very least. I regret now not having joined mum yesterday, but she said she had it covered. I’ll be there next week when she visits the oncologist.

So, what do we know? When asked, the doctor said her cancer was ‘advanced’ – what stage that is, I don’t know. There are two tumours. A smaller one in her bowel and another about the size of a golf ball in the lining of her stomach. That poses the question as to what the primary cancer is. And whether that means her cancer has metastasised, which would be bad news. According to mum, he wants to treat her with 3 months of daily radiotherapy and weekly lots of chemo. It doesn’t sound fun, but he told mum that it won’t be too intrusive. At the end of 3 months, they’ll make a call on surgery, which is the last resort given the invasive nature of it and the consequences. When asked for a prognosis, he said it depended on the person: that one person might die next week and another go on indefinitely. It was a frustratingly enigmatic response. Most tellingly, perhaps he said on parting that she should get her affairs in order. That’s sensible advice and maybe no more than that; it may also be an indication of things to come.

We’ll know more when we meet with the oncologist next week. I’ll be asking all these questions then and hoping for something more definite. I expect he’ll be more forthcoming as he’ll be running the show from here on in. For now, after the initial shock, you settle into a kind of accepting nether land. You wonder, you hope, but in the absence of anything definite, you try and keep an open mind. Still, the mind shuttles backwards and forwards of its own accord and alters ever so subtly your perception of the world around you.