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Pain cannot always be managed

SweetiePoplette
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The reality is all pain cannot be managed - I think more needs to be said about this to prepare people. 

My husband was diagnosed with inoperable bladder cancer last July after he collapsed and was peeing blood. The GP faffed about with antibiotics for 3 weeks before he was taken seriously and admitted to hospital for investigation.

By the time he saw the Oncologist, in September, he was told the cancer was inoperable. He cannot be given morphine because of low kidney function. 

My husband is now in a hospice - 4 months later. He is bed-bound, doubly incontinent and in agony whenever he is moved. He has to be moved, of course, as he can no longer move himself. 

We have been through hell. I just pray that he will die in his sleep one night, to end his suffering. I visit him every day, of course, but we usually just cry together. 

All pain cannot be managed - people should be told. 

  • Hello and thank you for posting,

    I am so incredibly sorry to read your post. I cannot imagine how distressing to witness and for your husband to go through.

    I am sure you have done this, but I would urge you to meet with the hospice team and ask whether his pain which you can see, can be reviewed and any medications tweaked. It is true certain medications cannot be used due to problems with the kidneys, but there are other types of painkillers or drugs used in palliative care that might be helpful.

    Unfortunately, in some situations, very unwell people can experience something called Total pain. This is an emotional pain and would mean regardless of what is used your husband may express discomfort and distress. Sometimes some sedation can be used to try and keep this controlled.

    If you feel able we do have other information on our website that may answer other questions you have at this time.

    Take care, and if you want to call to talk things through then do give the helpline a ring on freephone 0808 800 4040, 9-5, mon-fri. But, also please talk to the hospice team to ensure they know what you are both experiencing.

    Sarah.

  • Offline in reply to CRUK Nurse Sarah
    Thank you Sarah - I had a look at the 'total pain' video in your link and it does make sense, in relation to what's happened to my husband. I know he is depressed, and he is also in denial about his imminent death. Just this afternoon he said, 'well I expect I'll be here for about 10 days, then I can practice walking again' - even though a Dr had carefully explained to him, a week ago, that walking again was not going to be possible. . . 
    I have mentioned to the nurses and doctors, periodically throughout his care, that he is very depressed about his situation - and the sudden inability to do anything for himself anymore. Their response has always been sympathetic, but nobody has ever suggested any counselling, or psychiatric intervention. 
    There is a trained volunteer that visits the hospice, every Tuesday, and I know that he sits and chats with Mike for a while - Mike likes him and finds their conversations valuable, but he's only there once a week. 
    The hospice team are trying out different medications on him this week - but if there's no real improvement in his condition, I will mention the concept of 'total pain' to a Doctor. 
    Thank you for your valuable advice. 
    Best Regards, 
    SP X
  • Offline in reply to CRUK Nurse Sarah
    Thank you Sarah - I had a look at the 'total pain' video in your link and it does make sense, in relation to what's happened to my husband. I know he is depressed, and he is also in denial about his imminent death. Just this afternoon he said, 'well I expect I'll be here for about 10 days, then I can practice walking again' - even though a Dr had carefully explained to him, a week ago, that walking again was not going to be possible. . . 
    I have mentioned to the nurses and doctors, periodically throughout his care, that he is very depressed about his situation - and the sudden inability to do anything for himself anymore. Their response has always been sympathetic, but nobody has ever suggested any counselling, or psychiatric intervention. 
    There is a trained volunteer that visits the hospice, every Tuesday, and I know that he sits and chats with Mike for a while - Mike likes him and finds their conversations valuable, but he's only there once a week. 
    The hospice team are trying out different medications on him this week - but if there's no real improvement in his condition, I will mention the concept of 'total pain' to a Doctor. 
    Thank you for your valuable advice. 
    Best Regards, 
    SP X

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