Stay positive?

Another great cliche pressed on cancer sufferers is the need to "stay positive". This is a cruel kind of advice when you're feeling overwhelmed by grief or general blackness (which happens a lot at first, and at irregular intervals thereafter). I realised after a while that being positive could mean a few different things. In fact the very ambiguity of the advice (positive about what?) is, I think, a clue that it's a motherhood statement, a shibboleth of being a proper cancer patient.

It could mean that you never allow any "negative" thoughts, that you never accept the likelihood of death. Sometimes this attitude is joined to the idea that negative thoughts in themselves can make your cancer worse, or more gently, that positive thoughts might heal you. In an extreme form, this can lead to the idea that you're responsible for your own disease - that you've caused it by negative attitudes in the past, or too much stress. If you've been reading this blog, you'll know that's not the path we've chosen. I can't see any benefit in denying the obvious, and we'd only end up feel guilty when we were sad. Denial would also take away the vital opportunity to think about how to cope with what lies ahead. Worst of all, it would put quite a burden on those who supported us. Reading Helen Garner's "The Spare Room" (see my earlier post), you feel the impact of denial on the friendships, where the sufferer refuses to recognise the obvious, while her friends agonise about how to help her.

Why in the end should a positive attitude make a difference to your cancer cells? It's easier to see attitude being important for operations of the body which are largely under conscious control. My experience of long-distance running is that the mental part is just as testing as the physical. After 35km my body seems to be saying "Wouldn't it be nice to stop right now?" while my mind attempts to keep the pace up. It's even plausible in more marginal situations, where there is some conscious input into what's happening, that a positive attitude might subtly alter the balance. But when it's a fast developing cancer, which is about as subtle as a brick, I can't see a plausible mechanism for happy thoughts to affect the cells at all.

A second kind of attitude is that you deal with your feelings privately, while in public you maintain an upbeat demeanour. This goes with the cliche of "fighting cancer", putting on a brave face etc. One of the main functions of this attitude is that insulates other people from having to confront the grim details. At times I feel the sense of a "moral norm" - that people are uneasy if you're not being positive, that they'd rather not know, that you're letting down the human race by not fighting. Perhaps buried in there is the fear that pain and death are sometimes much closer than we expect, the fear of one day finding a lump and entering this darker parallel world.

I have to admit that at times this second attitude is a tempting line to take. Giving our initial bad news to so many friends one by one was very hard, especially over the telephone. With every conversation I had to start again, and drag myself back through the history. Over time I've also found that with acquaintances or colleagues, it's sometimes necessary to draw the line and give minimal details or even none, just to protect myself from having to deal with cliches. But applied to everyone, this approach would deprive us of the support that we most need from our friends. I know from the other side that it's difficult to know how to help someone when you suspect that the bad news is being kept from you.


A third kind of positive attitude is to do with how you live in response to having cancer. At one extreme it could mean that you go on making long-term plans in defiance of the likely outcome or that you refuse to let treatment control your life. I'm more sympathetic to this view in small doses. There are certain stages, or perhaps cycles when we feel temporarily overcome by grief and unable to see more than a few weeks ahead. For about half of Jen's chemo cycle, she feels so shocking that it's hard to even contemplate going on with treatment. But we've also found the relief of not being always overcome by grief. Otherwise we might lose sight of the purpose of our lives (which is not survival). So we do indeed make plans, large and small, still knowing that everything is provisional. It does help us to get through the worse patches when there's something to look forward to at the end (a fairly normal experience I guess - a friend was telling me about a book called "The Science of Happiness", which takes up this theme).

However it's important that others don't try to impose this upon us. Sometimes people will say, "Look at breast cancer survivor X - how positive she is, what a great example", not always appreciating or remembering the dark times in the journey that X has been on. In most cases X herself will tell a different story, that has lows as well as highs. The comparison with X is frequently unhelpful - X's life-situation or prognosis or treatment is often very different to Jen's. In the end the danger of the "be positive" cliche is that it limits people's willingness to understand what we're actually experiencing, and it might even inhibit our freedom to communicate that experience.

While writing this, a friend directed me to a scholarly article which analysed interviews with breast cancer sufferers in reference to the "be positive" cliche ("Thinking differently about thinking positive: a discursive approach to cancer patients' talk", Sue Wilkinson and Celia Kitzinger, Social Science and Medicine v. 50, no. 6, pp 797-811, 2000). The article referenced the abundant literature which connects positive attitudes with better outcomes. But it points out that in many cases a cancer sufferer is taken to have a positive attitude if they finish up by saying something like "Well, you've got to be positive, don't you?". A closer analysis suggests that in many instances, the speaker is merely acknowledging the platitude, while in the preceding sentence they have been discussing their shattered emotions.