When Someone With Cancer Doesn’t Die

Forgive me if this seems an insensitive post in the light of the tragic events in Las Vegas and so many deaths by terrorism in Europe and the Middle East, but I have been thinking about it for a while and hope it may prove helpful to those in the same situation I am, viz living with an incurable cancer.

A few weeks ago someone I don’t really know, but who obviously thinks they know me, wrote a rather curious email more or less accusing me of exaggerating my illness (metastatic leiomyosarcoma). At first, I brushed it aside. Then I found myself mentally replying with a long and circumstantial account of how the disease has progressed, admitting that while the initial prognosis was pretty grim (it had already spread to the lungs and liver), I had survived longer than expected and hoped to survive for longer still.* As all this was going round and round my head in the small hours, I asked myself why I was so defensive. Why did I feel it necessary to justify myself in any way? Did I feel guilty for not having died when I ‘should’ have done? Was it (partial) survivor guilt at work?

A psychologist would probably answer differently, but I think it has something to do with the rhetoric with which we customarily surround cancer. Any diagnosis of cancer is devastating, not only to the one who receives it but also to those closest to them, and I think we can make it harder for ourselves by the way we talk about it. We use words without thinking and forget that what has a precise meaning in medical circles may carry a different weight outside. Thus, I prefer ‘incurable’ to ‘terminal’ because the latter suggests that the person is being written off, not that the disease is . . . not going to be cured. Most oncologists are wise enough to say that although they can make an educated guess at likely times and outcomes, particularly for such dreadful cancers as pancreatic cancer which is often diagnosed very late, they are always being surprised by their patients — and no one is more delighted than they when someone manages to live longer and more happily than might have been expected. No one wants to raise false hopes (oncologists), but then again, no one wants to be cast into a pit of despair because everything seems bleak (patients).

I wonder, too, whether part of my own defensiveness stemmed from what I call the unseen battleground of cancer — the only battleground I’ll admit, because I am emphatic that I do not fight my illness, I live with it. Everyone with cancer will know that there are times when pain, weariness, ‘chemmie brain’ and worry about others — especially worry about others — fill one’s mental universe. One can’t think straight; one can’t pray straight; one just plods on. It is impossible to describe to anyone who has not experienced these things just how all-encompassing they are. I am fortunate that when I surface from the nausea and tiredness of my present chemotherapy regime, I have a few days in which I feel almost normal; but not everyone does. For some, the weakness and sickness never go away. It is not that one is ‘more’ ill than another but that our bodies respond differently, our minds too, and there isn’t very much any of us can do about it. All the positive thinking in the world will not change the reality of the situation in which we find ourselves. The single essential thing to grasp about cancer, I would say, is that we are not in control. As a Christian, I don’t find that either surprising or depressing; but for some people it is. Their whole life is built on the principle of aseity, that they are in control; and when that is manifestly not true, all kinds of complicated feelings and emotions can take hold. Guilt is just one of them.

If you who are reading this have cancer, I hope you will find some encouragement that the contradictory thoughts and feelings you experience are perfectly normal, that there is no one way of having cancer and certainly no right way of dealing with it. It is O.K. to feel angry/sorry for yourself — though I would suggest that that is not likely to help you live with your disease. Personally, I find that just getting on with things suits my temperament. I don’t have to pretend to be heroic (I’m not), nor do I have to bolster myself with unrealistic expectations. I do what I can and try not to fuss too much about what I can’t. I suspect I’ll always be sensitive to the suggestion that I am exaggerating my illness because I know that others are suffering much more than I am. That, however, is not really a consequence of having cancer but of the competitive nature of Western society. We tend to compare ourselves with others, often unconsciously, and we all know how useless that is. I think, in the end, I was grateful to my correspondent for forcing me to think about things I might never otherwise have considered. I’m sure you’ll be glad to know that my midnight musings on how to answer them ended with the thought that I could always have these words carved on my gravestone: I told you I was ill! 🙂

*If one has a rare form of cancer, such as sarcoma, there is the disadvantage that there is comparatively little written about the disease, and such studies as are readable by the layperson tend to be based on very small sample pools with depressingly negative outcomes. One can depress oneself very quickly by reading them.  See, however, the excellent work done by sarcoma.org.uk to inform and encourage sarcoma patients and their families.