Reality Check

I went to talk about my book to a cancer support group in Newham, East London, a couple of weeks ago. It was a salutary experience, and served as a sobering reminder that, whatever progress has been made in treating the disease, it still devastates lives and causes profound anguish and pain.

The group meets in cramped premises above a doctor’s surgery on the edges of a housing estate near a railway line. Because of thefts, there are metal grilles on the entrance door which is controlled by an entryphone. It gives the feeling that the place is slightly under siege, a small haven of warmth and safety in a cold and hostile world.

This is true at a much deeper level than simply the physical one. The tiny staff that runs the centre (mostly volunteers) not only organize meetings, but arrange counselling and complementary therapies for patients and their carers. They provide assistance in applying for benefits, plan outings and day-trips, and offer teaching sessions in helpful skills such as computer use. In short, they lay on comprehensive and much-needed programme of help and support to all those whose lives have been affected by cancer.

The people I met were quietly warm and smiled in welcome. They clearly took great pleasure in one another’s company. But you didn’t have to talk to any of them for very long before the extent to which disease had rocked their lives started to become apparent. Whether as patients themselves, or as close relatives or partners of people who had died of cancer, they all bore the wounds of savage illness, which were covered by at best the thinnest of skins. Their experiences remained raw and poignant, sometimes frightening.

My visit came not long after the government’s review of Incapacity Benefit in which it announced that doctors should be seeking to create a “well-note” rather than a “sick-note” culture, and focus upon what patients can do rather than what they can’t (i.e. get them back to work). To those in the frontline of serious illness this seemed a grim and insensitive proposal that simply shows a woeful lack of understanding and experience on the part of those proposing it. With suppressed but heartfelt emotion, that encompassed great hurt and weariness as well as some scarcely veiled bitterness and anger, they told me what my own experience confirms: ”The people in power who come up with these things have simply no idea.”