Letter from Belgrade

Childhood Cancer International seems to go from one extreme to another. Last year its European conference was in the far north west of Europe, in comfortable, social democratic Sweden. This year, we found ourselves venturing to the far south east, to the Balkans, countries that are well-represented in the organisation, but ones of which many of us feel we know little. This of course is the reason to be there. Parents and particularly survivors from the region have made themselves heard loud and clear at other meetings, but there is no better way to learn what life is like for children with cancer in these harsh but resourceful countries than to go there.

Any apprehension in the taxi ride from Belgrade airport is dispelled by the welcoming sun of the Serbian Spring which is already spiriting customers out into the pavement cafes. Across the way from the hotel, workmen in cradles, suspended high above the entrance to the national theatre, are constructing an elaborate display on a reassuringly familiar theme for a Brit abroad – Shakespeare’s fourth centenary.

The theme of the conference could not be more relevant - Standards of Care and the drive to give all children with cancer in European an equal shot. The plan for the continent is set out clearly by Olga from SIOPE. Then, advocates like Lejla from Bosnia and Irina from Serbia give us some home truths about what life is like in the region. The discussion moves from the cutting edge of innovation, giving children access to new trials for example, to the absolute basics: the lack of standard chemotherapy in some hospitals and of anaesthesia for simple procedures like taking bone marrow samples. A Serbian doctor explains that the problem of pain control is not necessarily even one of lack of resources, it is a lack of awareness that such intervention is necessary.

As always with CCI, the schedule is full-on and on Saturday evening, I find myself dashing in late for a hastily convened Skype meeting in nothing but my socks and pyjamas. It is important to be there, though, for the agenda is the key business for our representative group, Unite2Cure, the resolution that we will put before the European Parliament to urge the Commission to be bold in its review of the Paediatric Medicines Regulation.

The partnership of researchers, regulators and parents of which U2C is a part has thankfully changed its name from the longest acronym in history ( ENCCA/ SIOPE / CDDF / ITCC) to a simple verb: Accelerate. As the discussion moves through some surprisingly radical ideas for rewards and penalties, it feels like we might actually be  living up to our new name.

A quick change into a clean shirt and we are on our way to the Belgrade

restaurant our hosts have chosen for us.  Hilary, Cesare and I sit at a table with Vladimir, who runs the Serbian survivors’ organisation Mladice. He explains that the house band are Romanian, although for some reason I don’t quite catch, the accordion player is from North Wales. The long wait for supper gives them time to  play through their entire repertoire while we work our way through an enormous Serbian bread basket and a seemingly endless supply of beer. Vlad explains that the restaurant usually caters for wedding receptions, which in Belgrade can go on for three or four days, fuelled by music and pivo. So if we have to wait an hour or two for the evening meal, we should not be surprised.

The drink having loosened our tongues, we begin to talk about words, about ‘mladice,’ which he explains means ‘young trees, young fish, young anything.’ Still no supper, so the Romanian cum South Waleian band strike up again and the survivors, the kids, the mladice take the floor, drawn into an ancient circle dance somewhere between a Lebanese Debke and the  Hokey Kokey. Vladimir slips outside to share a cigarette.

The next morning, we assume that if anyone surfaces in time for our early
morning talk, they will still be suffering from the after effects of the araki from the night before, so we ditch the powerpoint and try to wake people up by putting them into work groups, getting them quizzing, debating and generally pulling to pieces our theme, the regulation that governs research into children’s cancer in Europe. Forty five minutes on and they are all writing letters to the European Health Commissioner, each of which we seal in  separate golden envelopes to carry with us to our meeting with the him in May. Our target is 100 letters; by lunch we have 75. It is a result.

All too soon, Hilary and I are being driven off in an airport taxi, wondering what sense to make of this battered, beautiful town. Sense, of course, has been staring us in the face since the moment we arrived, in letters pasted one hundred feet high on the wall of the national theatre, and now finally spelling out a single line of Shakespeare:

            ‘The web of our life is of a mingled yarn, good and ill together.’