Caring for someone with a terminal illness

Lesley & David ' Interview 05

Female
Age at interview: 66

Brief outline: David was diagnosed with multiple myeloma, a rare form of cancer, 7 years ago and is currently undergoing further treatment. Lesley finds caring very emotionally draining. She sees her role as helping David to control his disease.

Background: Lesley has been married to David for 19 years. She has 2 adult children and 2 adult step-children. Lesley is a self-employed teacher. Ethnic background' White British.

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David was diagnosed with multiple myeloma just as he and Lesley were in the process of selling their house and moving to a new house. David had gone to the doctors by himself so Lesley found out about the diagnosis second hand. Neither of them understood what multiple myeloma was, so they went on to the internet to find information about it. David’s myeloma was known as ‘smouldering’ and he was given between 2 and 3 years to live. The diagnosis caused them both a lot of angst, many tears and concerns about an unknown future. David was not offered any treatments for 6 weeks after his diagnosis, until all his test results were known. Lesley found it very hard to deal with the wait and the unknown. 

David suffered from anaemia which made him very tired but they carried on as normal for the next four or five years, with David having regular visits to the hospital and occasional treatments for his bones and for his anaemia. The anaemia then became worse and he started having blood transfusions. The time between transfusions became less and less and it became apparent that other treatments would be necessary. David was put onto Velcade, which was effective, but the violent side effects were disturbing and David had to attend A & E. He was admitted to hospital and Lesley found herself getting very frustrated and angry in the hospital as she tried to get treatment for David. Lesley had no trust in the hospital staff, so stayed with David in the hospital looking after him in every way she could.

David lost weight in hospital, so after 3 weeks Lesley took him home to care for him at home. Unfortunately David fell out of bed at home and Lesley had to call the doctor. David was admitted to the local cottage hospital, where he started to regain his strength and was able to look after himself again.

The next two and half years were relatively myeloma free but then it returned and he is now undergoing further treatments. He has the option of going onto a trial with a new drug in the spring which he will probably take up.

Since David’s illness Lesley has become very active on various committees, trying to make a difference for David and others with rare cancers. Lesley looks up any information she can to find out how to help David, because multiple myeloma is a rare cancer with no set treatment pathway. Lesley is also an active member of her local community and finds that participating in committees is enjoyable and it is refreshing to do something away from home. It is also something she can share with David when she returns home. Lesley and David are both members of 2 local choirs and find singing together very enjoyable. Music is a great consolation to them both.

Lesley has found the Myeloma UK Support Group very useful and has phoned them when she has needed information and often feels unsupported in her role. Lesley and David are very aware that David’s cancer makes him vulnerable to other diseases and recently they have discussed David’s wishes for his funeral. They are currently planning to move house again, to a smaller property with less upkeep for David to manage. The decision to move has been difficult as they had originally planned to stay in their current home for ever.

They make time to do things together and to do the things David has always wanted to do. They both love travelling and are planning trips to places David wants to visit. They are also planning a hot air balloon ride and Lesley is going to jump out of an aeroplane to raise money for the Myeloma support group.
 

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