Pain control

I have terminal cancer and am bothered by the thoughts of unmanageable pain although I have little symptoms just now as  a ex nurse I know what's coming  and am determined that I will not be in pain

Pallitve care can do so much but cannot do the impossible, I am looking at ways to take control if all other methods of pain control fail, am I the only one who feels this way?

  • Hi Dandydog

    This thought must occur to everyone who visits this forum. I helped nurse my father through end stage cancer at home. When his pain went through the threshold of morphine, our local Hospice nurses visited every morning and the McMillan nurses in the afternoon. He had a syringe driver with diamorphine with a sedative for the last 4 days before he died. I do not think he was in any pain and was asleep most of the time. He could though occasionally hear what we were saying and could respond with a squeeze of his hand. I hope that if needed you will be able to access similar quality palliative care. There are of course other methods for cutting short the time spent in pain but I do not think this forum is an appropriate place for their discussion.

    Ed

  • Thank you

    I think my thinking is coloured by my experiences as a nurse where I had to wait for hours at times, for a doctor to come and increase pain relief for a cancer patient, also hearing hospice nurses talking about funding being cut and pointing out so many people are dying in pain at home when there's not a place in a hospice!

    I hope things have changed somewhat these days but you have only to read through the discussions  o b pain on this very site to doubt that!

    I will be referred to palliative care at some point and will have chance to talk at length about this, 

    I do think that no one should be in pain these days and think that enough pain relief should be given to ensure this, but wonder if there is a reluctance  among health care professionals to prescribe enough as they are aware of the Shipman case and their personal accountability

    thank you for recounting your fathers experience 

  • Hello, Dandy dog, and thank you for contacting us.

    I am sorry you feel like this, but I am glad you posted.

    Do speak to your doctor or specialist nurse (CNS) and let them know how you are feeling so that they can support you. Coping both physically and mentally with cancer is overwhelming, particularly when you have worked as a nurse, but it is important to remember that palliative care teams specialise in this type of care.

    Improvements in pain control and end-of-life care by these teams, who work alongside other community professionals, mean that people can be at home and symptoms managed more than before. Having a good relationship with these teams, taking the medications as advised, and feeding back what does and doesn't help are all essential to self-managing your medications and symptoms.

    It may be worth talking to your doctor about an early referral to palliative care, to improve your confidence.

    If are feeling low and need someone to talk to then do not hesitate to contact the Samaritans who are there 24/7. I hope you have support dandydog at this time.

    Take care and if you need to chat with the nurses on the helpline the number is 0808 800 4040. Lines are open mon-fri 9-5.

    Sarah.

  • Hi Dandydog

    My father was lucky that his dose of diamorphine and sedative was increased each day along with withdrawal of fluids to shorten his suffering at the end of his life.

    During his life teaching medical students he would ask the question how much painkiller would the student give to a particular patient. Their reply would vary with exact doses so many grains etc. to which he would reply that they were all wrong. The correct dose was he said is "enough" (to alleviate pain).

    Having been through the cancer mill myself and again now with a recurrence. I have often not been given enough painkiller to be comfortable and have had to endure some element of pain. I understand that consideration has to be given to addiction but often wonder if there is some moral angle to this.

    I think if your palliative care plan is properly put in place you should be able die with dignity and without pain. Knowing this can considerably increase the quality of life you do have left without the nagging fear in the background. I hope you can get the care you deserve.

    Ed

  • Thank you

    I hope so otherwise we will just have to constantly badger everyone I asked a health professional how  effective nerve blocks are in cancer pain relief, she had never used this or heard of it being used!!!! I have a little pain now ( either immunotherapy side effects or cancer spreading to the bones) I will find out next week, and don't even want to use paracetamol just yet in case I need it more later! Illogical I know