Chapter 4 - Treatment

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This is a strange world where Yes does not always mean Yes and No does not always mean No. Doing well may mean nothing and doing badly also may mean nothing, at least not in the greater scheme of things.

This may be confusing you. I think that initially it confuses everyone. Let me explain.

Yes does not mean No and No does not mean Yes. In the outside world these are not blurred. These are absolutes. These options are mutually exclusive, you cannot have both at the same time. Not so in medicine. This is not a problem with the medical profession, but is a problem with our understanding of the profession. We want absolutes. We want the doctors to say “I know what is happening. I am God and I understand perfectly the fine and delicate mechanisms which govern this shell in which you reside”. This is not the case. The doctors are human and try their best but they cannot work in this world of absolutes. Not yet and not for a long long time, if ever.

What does this mean? It means that doctors perform tests for illnesses, infections, imbalances in this fine mechanism we call our body. Sometimes the tests say ‘Yes’. So what is the problem? The problem is with the test. It is the best they can do and sometimes it is wrong. The test is not fine enough. The test does not take into account the myriad complexities involved in the running of these bodies in which we live.

What does this mean? It means that a test that declares your child free of complication X may not actually mean that complication X has actually disappeared, but just that it cannot be detected.

This becomes very strange. You wait for the results of test Y, but slowly as you become more accustomed to the ways of treatment you realise that this is just a pointer. You realise that you cannot take everything at face value. This can also apply to diagnoses. It makes life very difficult for doctors and parents alike.

The term remission has these properties. Remission is the term used when a child is declared free of the disease. If your child is declared clear of the cancer, in say the bone marrow, this actually means that the cancer cannot be detected in the bone marrow. Return of the disease is always possible. It only takes a few surviving cells. Being declared clear means that, on balance of probabilities, the disease has been destroyed, but there is never certainty.

After remission and further consolidation treatment, the treatment is ended. To many outside the world of childhood cancer this is synonymous with cure. They believe, that having been treated, the child is now well and that the disease has been eradicated. This is how we view many illnesses but is not necessarily the case with cancer. Remission means that the disease can no longer be detected. It may come back or it may not. No-one can state with certainty either of these outcomes. Parents know this because they have seen other relapsed children. This can be very difficult to describe to people outside the world of the Cancer Unit.

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