Caring for someone with a terminal illness

John ' Interview 12

Male
Age at interview: 57

Brief outline: John talks about caring for his younger son Tim, who was diagnosed with acute leukaemia whilst he was at university age 20. Tim returned to the family home where the family could offer him care and support. Tim died when the leukaemia returned a second time.

Background: John is an HR consultant. He is married and has 2 adult children Ethnic background' White British.

Audio & video

John’s younger son Tim was 20 years old when, during his first year at university, he was diagnosed with acute leukaemia. The diagnosis was a devastating shock to the whole family. John and his wife took their lead from Tim and only found as much information as he wanted to know. John feels this was a positive thing for the family as they never felt they were withholding information from Tim by knowing more than he did about his condition or the treatments.

Tim returned home and started 12 months of intensive chemotherapy. It was a difficult time as the effects of the chemotherapy meant that sometimes he would have to be rushed into hospital. Whenever he was in hospital John or his wife went to see him every day to give him support. Gradually Tim became stronger and able to cope with the chemotherapy. He was always positive and quickly got into remission and looked forward to getting on with his life.

Tim started at a new university close to home as soon as he had completed his chemotherapy. Although Tim still had regular blood checks, the family life seemed to return to some sort of normality and John was pleased to see his son go to university, make new friends and return to student life. After 15 months of remission a blood test showed that the leukaemia had returned. This was again a devastating blow for all the family, especially knowing the treatments that would follow, but they also felt positive knowing that it had been treated before.

This time Tim needed to have a bone marrow transplant as well as chemotherapy. The side effects of chemotherapy seemed to be much more severe this time and Tim would often have to spend time in hospital after chemotherapy. Throughout this time John felt a nagging fear for his son that never left him.

The chemotherapy did not seem to be working and after 7 months John was told that there was no other treatment that Tim could be offered and that it was now a case of trying to contain the disease. John immediately took the family to visit relatives in Spain for a few days before returning to start looking at palliative care options.

John’s wife stopped working to care for Tim and there were a lot of local support services in the home to help Tim and support his care. Tim was always positive and battled against his cancer and John felt it was important to stay positive for his son.

However Tim’s condition continued to decline and 9 months after his second diagnosis he felt he couldn’t go on any longer. John drove him into the hospital and he and his wife stayed with him constantly. When Tim realised he was going to die, he talked to his parents about dying and John talked to him about writing down what he wanted to happen to his things. After Tim’s death, John found a letter from Tim expressing his love for his family, which is a great comfort to them all.

Reflecting on Tim’s three years with leukaemia, John feels it was a roller coaster of joy, happiness, fear, and deep distress. He feels he was closer to his son during this period than at any other time and remembering his deep bond with Tim is very special for John.

Since Tim’s death, John has kept himself busy. He continues to work full-time.


He has also walked to the World Cup in Germany to honour Tim who was a football fan and written a book recording the journey. John is also a trustee and an active fund-raiser for Leukaemia and Lymphoma Research.
 

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