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.’
