Living with uncertaintyBMJ 1996; 312 doi: https://doi.org/10.1136/bmj.312.7046.1618a (Published 22 June 1996) Cite this as: BMJ 1996;312:1618
- Thurstan Brewin
A group of attractive young adults is meeting for the first time. They are told to shake hands—twice—with the person standing next to them and to introduce themselves. So they do this. They all look very fit. They have to be, for they are starting a week's adventure course. Then suddenly—wait for it—a soft dramatic voice tells us, “These people have only one thing in common—cancer.”
Before the programme is over, we are going to see them facing the challenge of various tasks, many with a spice of danger—balancing precariously high up in trees, albeit wearing a safety harness; tackling what looks like an assault course for commandos; going up in gliders; and sleeping in hammocks on an old sailing barge. They also laugh and eat and drink together and have fun playing party games. The scheme is called Odyssey and is run by three cancer hospitals.
All in all, it's a safe bet that many viewers will have found the courage and humour of these young people inspiring. And we will surely all be wishing them luck and hoping they do well.
But what do they really have in common? Two have been treated for Hodgkin's disease; another has had surgery for a condition that could hardly be more different—cancer of the rectum. She describes her colostomy bag with touching intimacy. The four letter word for faeces trips lightly off her tongue.
A 25 year old Cambridge University student is very photogenic because of his infectious grin and his total alopecia, the result of recent chemotherapy for testicular cancer. Smiling broadly, he tells someone to whom he is introduced in the street, “I've got cancer.” To some extent his striking personality dominates the programme. True, others laugh and joke when they are not having agonised discussions about their innermost feelings and fears—discussions which thoroughly upset two of the party. But he is the real comedian. And at the end of the week there are hugs and kisses all round.
The currently popular phrase “living with cancer” keeps cropping up. But it soon becomes clear that what these young people are actually living with is not cancer—there is no suggestion that any of them have any physical symptoms—it is fear. Fear of recurrence. Fear of death. So the first idea of the course is that if they experience other fears, such as fear of heights, they will then be less afraid of their future. I found it sad that no one spoke of any doctor helping them with their fears.
Next, the course deals with uncertainty. We keep hearing about the terrible strain of uncertainty, that anything is better than uncertainty, and so on. But in a war nobody says that the worst thing is the uncertainty of not knowing whether they will survive the war or not. Nor do patients with heart conditions often talk like this. It always seems to be mentioned in connection with cancer. So what's so different? Is it tied up with the special dread that surrounds the cancer label? Anyway, to help them cope with the uncertainty of their future, nobody on this adventure course is ever told what's going to happen next.
Gimmick or good therapy? Hopelessly naive or well worth while? Psychologically beneficial, or psychologically harmful, or neither—just a week's holiday like any other? Obviously the sensible way to find out is to compare two or more groups. This should have been done from the start, randomising to make the comparison reasonably reliable. Young people like these, suddenly caught up in serious illness and intense fear, deserve the best; and we will never know what's best unless we compare.—THURSTAN BREWIN, retired clinical oncologist, Berkshire