Yesterday I met with one of my doctors to discuss my options for pain relief. I have been resisting taking the usual narcotics that are given for cancer pain for a number of reasons.

  • I have a high tolerance for pain, so I am choosing to take advantage of the fact.
  • I don’t like how they make me feel. I don’t like that woozy, dopey feeling, that ongoing drowsiness that turns day into night into day. Narcotics(*) cut you off from feeling not only pain, but life.
  • I have a mild allergy to opiates (narcotics). When I take even a small dose my whole body starts to itch, even inside my ears and nose. It is intolerable. Therefore, if I have to take narcotics, I’ll have to take antihistamines with them – and I hate the woozy antihistamine feeling even more than I hate the opiate feeling.
  • Once I start down the opiate road, I’ll be taking these drugs for the rest of my life, however short or long it may be.

The last reason I give is closely tied with what I think is the psychological underpinning of my reluctance. I think I have an irrational sense that starting on narcotics will mean that I’m at the end, that all that is left for me is death. The thing is, whether or not I start using opiates now, the fact remains that I have a terminal disease, that I will die sooner rather than later. My irrational feeling is that taking these drugs will hasten the approach of the end. I know this isn’t true; the fact remains: that’s how I feel.

I use some techniques besides medication to control my pain. When I pray I sometimes go into an altered state that would probably be an alpha state(**) if anyone was looking. I can also achieve this state through progressive relaxation of muscle groups. When I’m “there” I am aware of pain, but it doesn’t bother me. Hard to explain.

Then, there is endorphin production. I touched on this in a previous post, Kindling the Lights of Fire. We can stimulate endorphin secretion in a number of ways – physical activity is one. Laughing uproariously is another; so is crying. There are even certain foods that help. Endorphins are hugely important to how we experience pain. This is a link to the abstract of a slightly technical article on the subject.

Other non-pharmaceutical measures include doing my best to eat a balanced diet, getting balanced amounts of rest and exercise, and maintaining relationships, hobbies and interests so that I don’t spend all my time thinking about myself.

Having written all that, I feel less guilty about refusing the opiate option for now. I’m going to try a prescription NSAID that my doctor suggested and my hope is that in combination with these other measures, it will be enough for now. Even if my feelings about opiates are irrational, it can’t be a bad thing to avoid them for as long as I can.

I am coming back a few minutes after publishing this post to add the following:

I am completely in favor of availability of strong opiate pain relievers to people with metastatic cancer. No one should conclude from what I wrote above that I am advocating withholding or refraining from them. It all just has to do with me, right now, and my own feelings about my own illness.


(*) In this post I’ve treated the words “narcotic” and “opiate” as synonymous.

(**) An awake, relaxed state associated with a lack of psychological tension and decreased attention to external stimulation. Measured on an EEG (electroencephalogram) at frequencies of 8-13 Hz and amplitudes of 20-200 μV. (Yes, I’m showing off. I can’t remember names of everyday objects or find the right word in the right language for what I want to say, but dammit, I still remember factoids from my training in the 1980s.)

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10 Responses

  1. Maxine D says:

    I can understand your fear, although I have never been there. DH is a bit like that with having to use oxygen at home. :-(, although that senario is now very close and he is beginning to accept it.

  2. I have resisted stronger painkillers than paracetamol but occasionally I take something stronger to be able to sleep, or just to calm down some pain from doing too much (standing for too long). I also have a high level of pain tolerance, shown by the fact that I walked around on a pathological fracture of my hip for months with no pain killers, so somehow even starting to take paracetamol was something I resisted. It just makes like a bit easier, and being able to just get on with life. It feels a bit like ‘giving in’ as you say, but now I tend to think of it as putting cancer back in its box so it can’t interfere with my life as much.

  3. heyjudyjudy says:

    I think I understand your decisions about the pain you’re in. And, IMO it would be okay if later you adjust or change your mind about it. The important thing is that you get to make your own choices.

  4. Scorchy says:

    Choices. As long as we have choices we have some semblance of control.

  5. steve wethington says:

    I sure hope Dear Knot that you can step back maybe in a little while and understand that even towards the end of life, we dont have to feel pain. It’s not a weakness nor on the other side is it some show of inner strength to suffer.

    The ‘drug’ issues both from being what i am and my own allergies i understand. But i have seen my father in law and my mom to a lesser extent suffer pain that was not necessary as the end neared in those final months.

    When they drilled that hole in my skull in December 07, the Surgeon and the Pain Dr. knew my background, knew i was alkie.

    When i finally came to about 3 days after the operation, my Surgeon asked me this. Steve did you feel anything while we were operating? ummmmm no i dont think so why?

    We had to stop the drilling and acoustic nerve tumor removal cause your telemetry showed you were waking up!!!!!!! 1/2 way thru the operation, hole in my head, acoustic surgeon scarping nerves,

    I was coming to. Surgeon said , you have some high tolerance for pain and the direct morphine and anestesia (sp) was NOT working.

    He explained it too me this way. Our job as Dr.s is to keep the pain away from being a constant as possible WITHOUT you shuffling down the hall and falling head 1st down the steps cause of the drugs.

    That functioning level is different for each of us no doubt with stuff like resistance to meds and or pain, body weight , over all health etc etc.

    I hope it helps to know others care, are praying for ya , and read what you say. You are stronger then me for sure and most folks i know………..

  6. I’ve always hated taking medications, so I hear where you’re coming from on the avoidance thing. Your “irrational fear” is completely understandable as well. I’m sorry you have so much pain to try to manage. Everyone is entitled to their own choices regarding pain management. so keep doing what feels right for you. I thought it was interesting you mentioned guilt. Thanks for sharing.

  7. Knot Telling says:

    Maxine, I think I understand your husband’s feelings about oxygen. I’m so sorry you are both walking along this path.

    teddybearwannabe, I love your idea of “putting cancer back in its box”. I’m going to use it, too.

    Judy, Yes, I’m glad that I can make my own choices, and I will definitely revisit the issue when the meds I’m taking stop being effective.

    Scorchy, As you so often do, you put your finger right on it – control. From the moment of diagnosis I felt my life spinning out of control. It’s good to be able to exercise control in the form of making choices.

    Steve, Thank you for sharing your experience. Rest assured, I’m not refusing narcotics for any reason other than the ones I give in the post. As soon as the “lesser drugs” stop working, I’ll be the first to ask for the good stuff. 😉

    Nancy, Thanks for understanding. I’m not sure where the guilt feelings are coming from. Maybe it has something to do with being thought a non-compliant patient?

  1. 23 March, 2013

    […] was only about four or five months ago that I wrote Pain, a post about my decision to put off taking opiate pain relievers. I was – and still am […]

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    […] is much on my mind lately. As recently as last November I wrote a post (Pain) in which I talked about my reluctance to use narcotic pain relief. Recent readers of Telling Knots […]

  3. 22 July, 2013

    […] I’ve written before (as in this post from about nine months ago), my issues with narcotics are dual. On the one hand, I hate the way they make me feel. I hate that […]

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