Cancer In Young Adults ... Through Parents’ Eyes

Narratives & Stories

Christopher's Story

Christopher was about to start university after a Gap year when diagnosed with chronic myeloid leukaemia.

Christopher was 20 years old when he was diagnosed with chronic myeloid leukaemia in September 1995, just five days before he was due to leave home and become an undergraduate at John Moores, Liverpool.

In September 1996 after horrendous chemotherapy and radiotherapy he had a bone marrow transplant. He died from respiratory failure in intensive care on March 30th 1997 – Easter Sunday (aged 21).

The effects on the family throughout his illness and after his death have been devastating and life will never be the same again. We also have three daughters. At the time of his death they were aged 24, 19, and just 12. My husband and I, both doctors knew something of the nature of his illness, maybe too much and keeping up the front of hope and cheerfulness for the children and each other was difficult.

Most of his treatment was in London, a good three hour journey from our home. We travelled to and from the hospital several times a week often together, too often alone. One parent with Chris, the other at home trying to keep life normal for our 11 year old.

For me personally as his mother the pain of watching your child suffer physically, mentally and emotionally is torture. His death was a relief to us all after watching him suffer so much. For so long the image of his last days fighting for breath will always be with me.

One of the problems for onlookers is the feeling of helplessness. I was able to buy him comfort, foods he fancied, etc, but the most difficult thing was his fundamental care. When I was with him I could perhaps persuade him to eat but I couldn’t help him to shower, in fact the loss of any small dignity he had left. The nursing staff were wonderfully supportive, hi-tech skilled people, but there was no time for what used to be basic nursing care, really looking after the personal needs of a patient. I helped as best I could when I was with him, but he hated it, and I knew it.

Now 3 years on our grief is still very deep but obviously less acute. We talk about him naturally and the things he did, good and bad, as if he is just away from home. Christmas, New Year, Easter are all difficult times and we are always aware of is last days on these occasions, when he was so ill and trying so hard not to be.

My husband and I reaffirm our love often – a desperate need to cling on to each other, but he can’t talk about his feelings which I have to respect.

I am depressed more than ever (I have suffered depression life-long) and now have a diagnosis of M.E. The only thing to keep me going is the thought that my daughter needs me, otherwise what is the point of anything.

I am on the local committee for Leukaemia Research Fund. I have become a bereavement counsellor for Cruse, but I don’t have the energy for much else. My husband works full-time but also seems to lack drive and energy he once had.

Our middle daughter will soon qualify as a doctor. She was the closest of the girls to Chris, and found it very hard to come to terms with his death. At university she co-founded an organisation called ‘Marrow’ which is a way to try and recruit bone marrow donors, working closely with the Anthony Nolan Trust. – ‘Marrow’ has now become active in several other universities in the U.K.

I think when you lose someone you love there is a strong need to do something that gives a reason for their death. By throwing our energies into leukaemia related charities we are perhaps doing this in their memory and hopefully helping others. It is not altruistic, it is a sort of life-line.

Another life-line for me has been my local church who have all been very supportive. I think my belief in after-life has got me through some very dark days. My youngest daughter, now 15, had also found some relief from her anguish by her religion. Her school has always been very supportive and understanding and helped her through the very difficult time of her brother’s death when she was in her first year at High School. Many of her teachers had also known Chris and helped.