Nothing can prepare you for the pain of watching your dearly loved child fight and then succumb to cancer. Our middle son, George, died in March 1999 after a four-year battle against bone cancer, which was diagnosed when he was a first-year student at Sheffield University. He was 19 when the tumour in his right leg was discovered and 23 when he died.
Once, on a family holiday in Italy long before George became ill, I had gone to see Michelangelo's Pieta and was deeply moved. Looking at this wonderful sculpture it is possible to glimpse the absolute despair of any mother who has lost her son.
Mercifully, I didn't know then that just 10 years later I too would be holding my own son in my arms, through surgery, chemotherapy and finally in death. This was at a time when he should have been travelling, studying, having fun and finding his own identity away from his parents. However badly he wanted to be independent, the disease and the treatments kept making that an impossible dream.
We were very fortunate in having friends who were willing to share our fears and didn't shy away. But I often wondered how the professionals could bear it. Senior medics were of a similar age to ourselves with children of their own. Young nurses at the start of their careers were only a little older than George himself.
At the specialist centre, life-threatening illness in teenagers and young adults was dealt with on a daily basis, whereas at our local hospital it was a rare occurrence.
Some staff kept a protective emotional distance - and who can blame them?
All of us struggled - family, friends and professionals - to 'get it right' for George. There is something uniquely challenging about being alongside someone who is trying to grow up while being forced back into physical dependency.
With hindsight much of this seems obvious, but at times we badly needed guidance. Tension between our instinct to protect George and his determination to manage the illness in his own way was hard to handle. So was the way he fluctuated between the child he had so recently been and the man he was about to become.
When he was in hospital recovering from his first major operation and weakened by chemotherapy, a young staff nurse suggested that he might be feeling low and irritable because he sensed our anxiety and that maybe we should go home for a few days. Home was almost 200 miles away and we knew no-one in the city where he was being treated. We are so glad that we took no notice. Yet she, like us, only wanted what was best for George.
But what was best for George was very hard to judge. And we didn't always get it right. I annoyed him intensely by hovering around outside his bedroom door when I hadn't seen him for a while. Receiving phone calls and visits from friends was another difficulty as he so fiercely wanted to guard his privacy and I so badly needed support.
Then there was dealing with the medical establishment. I am a hospital social worker with many years' experience and very used to talking to doctors and interpreting their language.
George at 19 had no such expertise, but made it absolutely clear from the beginning that he was to be in control of all consultations and decisions. Thankfully, he allowed his father and I to sit in on most of his appointments, but he didn't have to and I'm not sure how we would have borne it if he had excluded us.
Over the four years of his illness with its hopes and fears, its uncertainties and the ever-present dread of test results, we learned to respect George's instincts about how to manage situations for himself. But at first it was very hard indeed and we sometimes clashed.
Since George died we have learned that many of the things that we found so difficult are almost universal experiences for parents in the same situation. Yet, because cancer in young adults is extremely rare, we didn't know this. We didn't seek relationships with other parents who were going through the same thing because we didn't have enough emotional energy. It felt as if every ounce of courage was needed to support George and our other two sons.
But it would have been really helpful to have had something to read about how other parents had coped. So we are using money donated in George's memory to fund a research project based at Lancaster University on the personal stories of parents who have supported an adult child with cancer between the ages of 18 and 25.We plan an anthology of parents' writings to try to reduce the isolation most parents in our situation feel.
The researchers will also publish in professional journals and we hope that the results of the research will provide a resource for all those involved in the care of this age-group.
Informed support of parents must surely benefit the young patients who are, of course, everyone's priority.
Personal accounts can be sent to the researchers: Dr Anne Grinyer (01524-592677) firstname.lastname@example.org Dr Carol Thomas (01524-594092) email@example.com Both are based at the Institute for Health Research, Lancaster University, Lancaster LA1 4YT.