by Helen Easton, 1999

George, the middle son of Geoff and Helen Easton, was born in Lancaster and educated at Lancaster Royal Grammar School. He was 19 when his cancer was diagnosed in May 1995 while he was at Sheffield University. At that time his older brother, Jonathan was 23 and a postgraduate law student in Florence and his younger brother, David, was in his last year at primary school. He was treated mainly at the Royal Orthopaedic Hospital in Birmingham and later at Heartlands Hospital, also at the RLI under Prof. McIllmurray and as an outpatient at St John's Hospice under Dr Ellam. George benefited enormously from complementary therapies including several available through Slynedales as well as the Bristol Centre.

Geoff and Helen want to stress that the support and understanding they and George received was superb and it is probably because of this that they feel able to undertake the project Helen describes in her article. Although they will not be involved in the actual analysis or writing up of the research findings, they are involved at this stage in order to keep costs down. Helen (a hospital social worker) has taken in the appeal for 'stories' and Geoff (a professor at Lancaster University) is responsible for the literature search.

Our son, George, died on March 17th last year, almost 4 years after osteosarcoma was diagnosed in his right tibia while he was a first year university student. The challenge those four years posed for him, for his brothers Jonathan and David and for us, his parents, was unbelievably hard. Dealing with cancer at any age tests a family's resources to its limits but when the sufferer is your child, the burden is great indeed. In a recent Observer newspaper, which I read before beginning this article, Stephen Venables, who was the first Briton to climb Everest without oxygen, writes that he didn't know what courage really involved until his son Oliver was diagnosed with leukaemia and autism.

George's illness and the amazing way in which he dealt with it has changed our lives and as a tribute to him we have decided to use the money given in his memory to fund a research project. This research will be undertaken by researchers at the Institute for Health Research at Lancaster University and will look at the way families, especially parents, cope with cancer in a 'child' aged between 18 and 25 years. Of course it must always be difficult whenever a young person on the threshold of adult life has to become dependent on parents so soon after 'flying the nest' but for the purposes of the research we want to look specifically at cancer.

The idea for this particular topic arose partly out of our own experience and partly from a piece in the first Compassionate Friends Newsletter we received after George died (Spring 99). In it the Editor, Pat Neil, included a request for parents of children who had died from a terminal illness to submit contributions which could be used to compile a pamphlet for others who had lost a child in this way. She wrote that these parents are actually quite a small group within 'The Compassionate Friends'. And that the organisation would like to know more about them. This confirmed our own feelings that there appears to be surprisingly few publications addressing this particular issue, especially when the child is a teenager or young adult. When I wrote to Pat Neil to say that I felt that parents of a terminally ill youngster needed help before their child died she rang to say that this had been said many times before but so far TCF had not found a way to do so. Maybe they will in the future. We don't know what the outcome of 'our' research will be but like to think that any resulting publication will be used both to inform professionals and support parents and could even lead to bigger and more in depth studies.

The research is going to be based on the personal accounts or 'stories' of parents (and close carers) who have had first hand experience of supporting, and possibly losing, a child in the 18-25 age range. This 'real life stories' approach to social research is proving to be very powerful and allows people to speak for themselves. Personal accounts will be handled in the strictest confidence by the researchers and in drawing on them for publication purposes no names or identifying details will be used. Analysis will not begin until October 2000 so there is plenty of time for contributions to be made - directly to the Institute for Health Research.

So far we have sent the appeal to all UK Hospices and relevant charities and have asked them to promote our request for accounts of parents' personal experiences via their newsletters, noticeboards and conferences. Response from professionals has been very positive so we're hopeful that news of the project will reach parents of young adult cancer sufferers. However, we'd be very grateful if readers of Rapport could help disseminate the appeal via any formal or informal networks at their disposal and of course contribute their own experiences if they have been involved in supporting their child with cancer between the ages of 18 and 25.

The Researchers involved are:

Dr Anne Grinyer :
Tel: 01524 65201 x92677
E-mail: a.grinyer@lancaster.ac.uk

Dr Carol Thomas :
Tel: 01524 594092
E-mail: c.thomas@lancaster.ac.uk
Address:
The Institute for Health Research,
Alexandra Square,
University of Lancaster,
Bailrigg,
Lancaster,
LA1 4YT.

The Compassionate Friends (TCF)

TCF is a registered charity, a nationwide organisation of bereaved parents and their families who have experienced the heartbreak, loneliness and isolation following the death of a child or children. There are no age limits to TCF nor religious affiliation and support is offered all parents whose child has died from whatever cause. Membership is open to bereaved parents, grandparents and siblings, with associate membership available for other relatives, friends and interested professionals. TCF support is offered in a variety of ways, including group meetings, one-to-one, telephone and written contact. A quarterly Newsletter is published, plus a range of leaflets, booklets and books. TCF is a befriending, not a counselling, organisation, and it is often only through contact with members that newly bereaved parents have the opportunity to talk about their child who has died, and where a wide range of emotions can be safely expressed and understood.

For further information please contact TCF at:
Tel: 0117 953 963
Address:
53 North St,
BRISTOL,
BS3 1EN