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Saturday, May 28, 2011

Cancer vs pain

I had a conversation, years ago, with someone about a friend of theirs who had gone through 13 operations for cancer. "!3!" I said, amazed. "How can anyone go through all that. I can't imagine."

My friend looked at me increduously. "You have had 12 brain surgeries for the pain." I shook my head. "No. that's not the same. Not the same at all. Your poor friend had cancer."

Is it the same: 12 operations to try and solve my pain, 13 to remove cancer? No. I did not see it. I 'only' have pain. She had cancer. Cancer can kill, pain can only...well..., kill me, even if it is only in the spiritual and life changing, altering, closing off of alternatives, choices, and abilities kind of way.

People know cancer. Chronic pain is, for the most part, unknown. And misunderstood/not understood.

I have a tiny basal cell skin cancer. Caught quickly, it is as close to nothing as anything associated with the word cancer can be. I hurt my thumb, it goes away. Both nothing much in the scheme of things.

I hurt my thumb. It sets off a bodywide pain that does not go away, that gets worse, that can keep me bedridden. This is RSD (CRPS). I get a chasm making, face splitting pain that lasts for only a few seconds. Within 2 weeks it disables me, coming on its own, triggered by any touch, and accompanied by a constant choking murderous pain. It is trigeminal neuralgia. I am diagnosed with an organ, blood, or bone cancer. It may be killing me, literally.

The word goes out for the latter. Jane has cancer. Family comes together, neighbors, local church groups offer to make meals, help take care of you. You are embraced. The cancer community, through wellness centers and other support groups, is there for you.

Jane has constant intractable pain. The word does not go out. Family, friends, neighbors, get tired of Jane refusing to go places. "She says she can't, she has pain." It is tiresome.

A number of years ago I was at lunch with my mother and sister, Sue (pseudonym). There was a decorative lit candle in the middle of the table. The movement and glow of the flame was excruciating to my eye. Nevertheless I was afraid to blow it out, afraid of the response I would get. The pain decided for me. "I need to blow that out." I said. As I did Sue gave me a look, a 'geesh' body gesture. "The light and flickering hurts my eye." "It's perfectly fine and looks nice. I'm going to have the waitress re light it." "Please don't do that" I said. "You just want to make a fuss and get attention." The waitress was summoned and lit the candle again as requested. A few minutes later Sue excused herself from the table. Immediately I blew out the light again. (My mother was quiet throughout not wanting to get involved.) The minute my sister came back to the table she looked at the candle and waved the waitress over again. For once I stood my ground, the pain taking the lead. "Thank you but we do not want to have that relit. In fact, wy don't you remove it from the table?" My sister fumed, the conversation stilted, the atmosphere blackened. What had I done wrong? Nothing. I merely asked that my pain be respected and honored.

My other sister developed cancer. (I was not notified until she was nearing the end of the disease.) Friends took care of her, my brother made sure I knew she stayed at his home while she underwent chemotherapy. The family embraced her.

I was denied, my pain ignored and disbelieved, 12 brain surgeries looked at as 'she must have talked them into it'. June's (pseudonym) cancer was accepted, her needs met as soon and as often as possible.

I was hurt by all this but that is not the point of this post. (It had started out in a different direction but as often happens, somehow it went in a completely new direction.) The difference is: cancer is believed. We hear about it all the time. I think most of us also fear it, and rightfully so. It is a clarion call.

Pain goes away. That is what most of us know from our own experience with it. A pain that continues, and continues, and continues still. It is also a taker of life, in a different way, and people also fear that. Cancer is real. We cannot turn our heads away or bury them in the sand.

We need to do that when it comes to pain. How can one live, exist, if the pain never goes away, when our bodies become the torturer? The only way to ignore that question is to pretend chronic intractable pain does not exist, that we who have it are poseurs, malingerers, liars.

The time has come. We raise money for cancer, all cancer, because at the end of the day cancer is cancer. We also raise money and awareness for pain but mostly for one pain disorder at a time. Arthritis, Lupus, MS, RSD even, now that that is becoming more accepted as a 'real' disease: they each have their own fundraisers. That cannot be done with chronic pain as a whole because each entity is a completely different disorder. None of it comes under one umbrella, except the one called chronic intractable pain. .

Please, do not ignore us or dismiss us. You would not do it if I had cancer. Pain is every bit just as real.


  1. I understand how you must have felt hurt, but your sister was dying. Let this go or it might at you alive. Let go of all hidden hurt and resentment. I am trying to reach you. Peace.

  2. Jackie writes:

    Theresa 111, there are two different sisters in the story -- the one in the restaurant is not the one who has cancer.

    To me, your comment illustrates the point of today's post: that people with certain problems are told to "let this go" or more usually "get over it" while people with other problems are embraced.

    Now, I may be misinterpreting your comment, but that is how it sounds to me.

  3. Thanks Theresa. I know you are.

  4. Thanks Jackie, That was my intention. Sometimes that is the problem with the written word, what you may mean is not how it is received.
    I am glad for any and all feedback and comments. ((*_*))

  5. Your article rang so loud and true with me. I too have chronic pain (non-diabetic peripheral neuropathy and trigeminal neuralgia flareups).

    My world has become smaller and smaller and all the while, I struggled with "am I actually disabled because of this pain.

    I've always participated in life, but through pain I'm being relegated to a watcher. This is NOT what I wanted my life to be.

    The Drs. tell me 'you are disabled, this pain will not go away' and on bad days, I know it's true. But on the better days, I see people in wheelchairs or with cancer and somehow feel 'I'm not worthy of calling myself disabled'.
    (I know you understand).

    Thank you for this article, I'm going to relate its message as a way to explain my pain. You have hit the nail on the head.

  6. Jen,
    I am so sorry for your pain.
    It is a strange thing that we have to fight the pain, and then, often, the world too.
    I am glad that this resonated for you. Thank you for letting me know.

  7. I really relate to this article. Since 1983 I have suffered agonizing bone pain (avascular necrosis, or bone death of shoulders, then hips), and the excruciating pain of peripheral neuropathy. I've said since the age of 28 that my body is a torture chamber. And doctors and people in my life have added psychological abuse to it too. I find great strength and peace in reading the Psalms. I just found out I have non-hodgkins lymphoma, and I wouldn't think of doing anything to prolong my life in the pain I'm already in. But what does the medical profession think? That I'm a ninny and not brave for undergoing chemo, instead of seeing that I've suffered 28 years of teeth-grinding pain and there's nothing to cling to. I will never get sympathy from human beings. I turn to the Lord for comfort. He has promised never to forsake me or fail me. God bless and be with you leej. I am so sorry for your unseen and unacknowledged pain. I told one doctor recently that it's better to suffer physical pain than to add psycological abuse to it too by asking for help from people. I don't even try anymore, and I feel a great peace in that. Just letting go. I have added you to my prayer request list, leej.

  8. Hi Karen, I am glad you found the blog. You are definiately not alone! Unfortunately my website will be closing on August 8 (absent a Miracle) but will then be moving elsewhere so I hope you will check that out. Not a lot of activity right now but wonderfully supportive people who all live with chronic intractable pain, or support someone who does.
    I am not a medical person but do you have a pain nmanagement specialist? SOmetimes they offer things reg docs don't think of (your GP is a perfect example since he missed the growth.)
    such as an implnat or implanted medicine pump.
    I am glad you have your spiritual belief to help you through. I also understand why you would choose not to undergo chemo. Possibly there is still help for your pain though.
    Thank you for putting me on your loist. I apprecaite that very very much.
    I hope you will come check out the website. There are folks who care. (Took me a long time to know the truth of that too.)
    gentle hugs

  9. Anonymous, Surely you jest, and very nicely I might add. ((*_*))

  10. ok i will be more clear on this .......

    "Chronic Pain" syndrome does not exist - and is a ruse to attract attention and/or to excuse the smoking of cannabis and its' extracts.

  11. I have to wonder if some of you are the same person.
    Research has begun to shed light on this: unlike ordinary or acute pain, which is a function of a healthy nervous system, chronic pain resembles a disease, a pathology of the nervous system that produces abnormal changes in the brain and spinal cord. New technology, like functional imaging, which is generating the first portraits of brains in action, is revealing the nature of pain's pathology.

    From a UK newspaper:

    "Irene Tracey, Nuffield professor of anaesthetic science at Oxford University, said the latest data on chronic pain showing how the brain structure changes and how long-term damage can be done, means I should be defined as a disease.

    This would mean the chronic pain would be taken more seriously. "

    If they could they would. I can do consistent reading, writing for about 15 - 20 minutes before I have such severe eye pain that stops me from doing anymore for up to 2 hours.
    The same is true foir many others with diseases such as MS, lupus, rheumatoid arthritis, etc.

    Whatever this program was it was wrong or you miheard/understood what they were saying.

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