How do I start the conversation?

  • Community Manager - Posts: 120
    Edited by: admin - 19/11/2014 16:00

    If you've been told that your illness is likely to be terminal you may find it helpful to talk with your family or friends about your situation. And for some this can be a difficult conversation. So if anyone has any experiences of this they'd like to share from either side please post them here.



  • Posts: 2
    Edited by: Poppy1 - 19/12/2014 23:51

    My sister has terminal lung CA and liver mets. She is in hospital at the moment with uncontrollable pain from the liver. She has no options of treatment other than a clinical trial (20% chance of it working) as all other options have stopped working! We feel we are in limbo as she won't really talk about it with us. Her palliative community nurse has told my brother in law that he needs to have 'the conversation' with her re funeral and end of life wishes but she doesn't want to have the conversation. She has been diagnosed since 2011 but has been going down hill rapidly since August. We feel helpless.

  • 22/12/2014  11:31

    Hi This is a really difficult time for everybody and it's so hard to meet everyone's needs. When my husband was diagnosed with terminal cancer and was given only months to live, it actually became harder for him to talk about things rather than more urgent. He died without making a will..... I tried to find things out by chatting rather than having a serious conversation. I asked simple questions which required a simple answer - did he want to be cremated, for example. On another day, I asked another question. I talked about what I would want for myself and noted his responses. I never had a deep conversation with him about his wishes, but I discovered them any way. Everybody is so different. My friend planned everything down to the last point, including who said what at her funeral. Trying to persuade somebody to think about things when they don't want to will help perhaps just be uncomfortable for you all. Try to just take the thoughts and decisions slowly. Allow her time to mull a question over and ask again another day. Thinking about end of life when it's imminent can be scary. My thoughts and good wishes are with you all. Just take everything one day at a time.

  • Posts: 2
    22/12/2014  11:47

    Thank you. Sorry for your loss too, good advice. X

  • Posts: 12
    23/12/2014  10:32

    Hi Poppy. So sorry for you all. I have to say that I agree with Debbie - you really have to play it by ear, and take one step at a time. I felt that my role was to facilitate my husband's journey towards decision making re end of life. 

    I was fortunate that he wasn't in denial about his circumstances, but he still had to go at his own pace, and there were issues he found almost impossible to address. Our GP and Macmillan Nurse urged him to think about end of life care and funeral wishes, but it took time (he died 5.5 months after diagnosis). I helped by doing background research into possible readings, music, etc. I kept the information I had gathered to hand , and whenever we had a moment when the subject 

    arose, I was able to say things like "I found this poem/whatever, what do you think about it?".

    For various reasons it was really important for me that he updated his will. He kept putting it off, not because it was particularly difficult, but possibly because it seemed so final to him. It was eventually sorted - but only 2 weeks before he died. Funnily enough, we both felt such relief when it was done, and I wished he had avoided the stress by doing it earlier.  But you can't force things.......

    As you say, you are in limbo, which is such an unsettling place to be. Very best wishes to you all.