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.

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