Pain ThermometerA white hot knife sawing back and forth in my breast, my armpit, along the underside of my arm to my elbow, then a dull ache down to my wrist. Even my skin feels raw, as though the top layer has been abraded away; the lightest touch of a fingertip feels like an open flame being held to it. In vain, I seek a neutral position for my arm, trying to find some way to hold it that doesn’t exacerbate the pain. Nothing helps. I can’t extend it, can’t bend it, raise it, straighten it – nothing. Stirring a cup of coffee is excruciating. The pain drills straight through to my back.

I pace around the room because I can’t sit or lie still with this pain. I’m crying, moaning, yelling. ”Why is this happening to me? Dear Lord, what did I do to deserve this? Make it stop. God, make it stop!” It’s the middle of the night and I know that I’m yelling loud enough for the neighbors to hear. I can’t help it. I hear the sound of my moaning and wonder if the neighbors will think I’m having insanely wild sex in here. The idea makes me laugh, but the laugh redoubles the pain and turns into a scream.

I finally get up the courage to go up the stairs (each step twists the white hot knife in my armpit) and open the cupboard and get out the lock box with the narcotics. So many arm movements in all of that, each one a new summit of torture. Fitting the key into the lockbox, turning it. “Dear Lord, make it stop. Make it stop!” Fumbling with my left hand, I manage to take out the antihistamine that I have to take with the narcotic, take out the narcotic itself. I swallow the antihistamine tablet dry and thank God that the narcotic will dissolve in my mouth.

Slowly, torturously, I make my way back down the stairs. I wait until the drugs start working before I attempt to lie back on the bed. More time passes. I finally lie down and try to find a less painful position. Suddenly… the pain is gone. I am still marveling at what absence of pain feels like, and I sleep.

That was last night. I ended up sleeping until 5:30 this morning. I started to make a mug of coffee so I could sit outside and enjoy it in the morning breeze, but that knife started stabbing my breast again. I lay back down in bed and was delighted to find that there was still enough drug left in my system that I could relax. I slept for another five hours.

As I’m sitting and typing this, I can feel it starting up again. I don’t know what this pain is, just that it’s related to the “thingy” under my arm that I had biopsied a week and a half ago, the thingy that could be a new primary or new progression of the existing mets or maybe an alien baby. Hey! If it’s an alien baby, maybe these are alien baby Braxton-Hicks contractions!

I’m crying real tears now. Tears of pain, frustration, grief. I didn’t do anything to deserve this disease. It is not my fault. I know that it is “just something that happened”, a random bad thing. It’s hard not to take it personally, though.

Image copyright: iqoncept

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39 Responses

  1. John Boyd says:

    “Like” does not seem appropriate, but there is no “unlike” button. I don’t “feel your pain”, and, lord knows, don’t want to. I lack the courage to go through what you are. I just want your pain to go away, but have no idea how to make that happen long distance. You are the bravest, toughest person I know. And all I can do is send you “good thoughts”…..which I do. So sorry I have no better answers.

    • Knot Telling says:

      Good thoughts are great, John. Thank you.
      It’s not a question of courage, of course. If it happens to you (and God knows I hope it never does) you just keep doing the next thing because there is nothing else you can do.
      Thanks so much for connecting with me in the comments. It means a lot.

  2. I wish that I could send relief. Sending love & light is ineffectual, but it’s the best I’ve got.

    • Knot Telling says:

      It’s not ineffectual at all. It’s real and I appreciate it so much.
      By the way, thank you for taking all of us along on your trip the US through you’re great photos. I really enjoyed it.

  3. lulu change says:

    Very eloquent. I sincerely hope you get some relief very soon. Extreme pain is what I dread the most.

    • Knot Telling says:

      Very kind of you to say so, lulu.

      Extreme pain used to be worst fear, but now what scares me the most is total dependency on others.

  4. Rebecca says:

    I am so sorry. I wish I could take your pain away. You don’t deserve pain or cancer. Please know that in your heart.

    I am anxiously waiting to learn about your results and hoping it’s not related to cancer. Meanwhile, I am sending you positive thoughts and prayers.

    Feel better for a while.

    • Knot Telling says:

      Thank you so much, Rebecca. I do know that, but in extreme situations a more primitive part of me comes to the fore.

      I really appreciate your waiting with me. I’m hoping for the alien baby, myself. 😉

  5. Tim says:

    Oh you describe it so well, too well! I’m just glad that the meds were able to get you such a long period of sleep!

    • Knot Telling says:

      Thanks for the compliment. You know “they” always say you should write what you know. So.

  6. Dorry says:

    I’m glad you have something that works on that pain. At least that’s what I think from what you wrote. The addition of cannabis has helped me. (write what you know….) I love you.xoxoxoxoxoxox

  7. Margie Hudson says:

    As someone who lives with chronic pain, I cannot fathom the pain you describe. As always, sending you my love, good thoughts, and prayers.

    Oh, and if it’s an alien baby, what color afghan should I crochet?

    • Knot Telling says:

      I know you live with pain, too, Margie. 🙁

      Gosh! I hadn’t thought of what color for an alien baby. Green, I guess. 😀

  8. Julie Frayn says:

    If only good thoughts and loving words could dull that pain. But it can’t. And I am so sorry you are going through this. Your cup runneth over, but it’s the wrong damn cup! Smash that cup into a million pieces, will you? I know you would, if you could. Love to you. I’m hoping for alien baby.

    • Knot Telling says:

      Yes, Team Alien Baby all the way!

      Thanks so much, Julie. Good thoughts and loving words help in a very real way.

  9. Susanne says:

    I adore you, darling lady, and I wish I could take this pain from you. I’m glad you found relief. I wish it wasn’t there to bother you, and I hope the answers will provide a path to taking this pain away from you.

  10. Kelly B says:

    My mom just found out that a friend of 35+ years is doing very poorly, and visited her last night. The friend was mostly unresponsive, but when mom offered to rub her feet, she revived enough to say ‘oh, yes, please.’ It’s hard to offer foot rubs long-distance, but I’m sending them in spirit. Take a moment to imagine it, won’t you? It’ll be just firm enough not to tickle. 🙂

  11. Susan says:

    I am so sorry to read about your pain. I hope you continue to find relief.

  12. Lisa says:

    I wish that words could help. I know there are no words that can help this. But you are in my thoughts and prayers.

  13. Diane says:

    Knot Telling, “insanely wild sex”…so if it is an align baby you might get to meet Stephen Hawking 🙂 <3 HUGS <3 My Dear I know none of this comes easy. My thoughts are with you every day.

  14. Wish I could take this pain away. Keeping you in my thoughts, my friend.

  15. Deborah says:

    Dear Knot, so sorry to hear all this; keeping you in my prayers.

  16. Maxine D says:

    Knots, for your sake I am hoping, like you, that it is an alien babe….. and that the pain can be abated sooner rather than later.
    I can say no more than I am praying for you, as that is all, and the best, I can do.
    Gentle cyber hugs

  17. Claire, I don’t know if this will help at all but it might be worth a try. I had indescribable pain for several months after my lymph node clearance, it took me to the edge and back with shooting nerve pain and rawness and I couldn’t bear it being touched – even a T-shirt sleeve set it on fire. I tried everything I could think of and then I found a knee support at the back of the cupboard, one of those wraparound ones with velcro to hold them in place. Goodness knows why but in desperation I wrapped it around my upper arm and it instantly made such a difference. It was firm rather than tight, and it reduced the pain & other sensations by about 80%. I haven’t a clue why or how it worked, but it did, and I tried discussing it with my oncology team but they looked at me like I was mad, and I’ve never seen it recommended anywhere else – but for me it was a lifesaver. Hope you find something that eases the pain soon – there is nothing as miserable as prolonged agony. Sending hugs too. Yvonne

  18. Joanne says:

    I hope I never have to go thru this pain…I’m only here for as long as the meds work. Don’t deprive yourself knots…give you’re body a break, pharma is all we have left really….sending good thoughts and as many foot rubs as you need!

  19. Yapcab says:

    So sorry to hear this is happening to you. At least you have pain meds.

    I too often wonder “why me”, but it is, as you say, just a random event. That’s not very comforting, but true. Your trials and tribulations are an inspiration, so there’s some good coming from this. Not even close to fair trade, but at least it’s something.

  20. Mae says:

    I’m thinking of you and know there is nothing I can say to ease that for you. Still, you have my greatest admiration as I send you virtual hugs.

  21. alli says:

    Reading your post it sounds just what I had been going through only mine was in my foot. The pain is like nothing I have ever experienced before It was though through every step a searing hot knife was cutting the sole of my foot I was bed ridden for nearly 2 weeks My foot was swollen I too had to resort to the strong stuff because reg meds was not cutting it. I was prescribed LYRICA which did help at first however I began having side effects I was hallucinating, I thought I saw a LYNX in my back yard i began to have serious falls were I was taken to hospital on one time. Once I stopped so did the side effects. see your dr. see what’s going on. Certain chemos bring out neuropathy as taxotere which i had.Symptoms may appear years later. The pain in your nerves is horrendous you have my thoughts with you see your dr. there are meds that can help controlling it……. Good Luck one thing i id find when i had the pain I wrapped myself in a soft blanket…… neuropathy responds to warmth.
    take good care………

  22. Colleen says:

    You have such a way with words that with every mention of the word “pain”, I feel what you are describing. And, in your situation, don’t you think the word pain doesn’t nearly suffice? The WHY of the torture is the thing I just can’t wrap my mind around…surely there’s a magic treatment to eradicate the living hell we as patients go thru? Wracked with debilitating bone pain for eight years now, I can say that I’ve reached a happy medium of morphine/Vicodin/white wine that keeps me relatively o.k. But, I know this is temporary and cringe at the thought of escalation of pain that is already pretty bad. You are in my heart, my thoughts, my prayers. Please, dear Lord, give this woman some relief. Soft ((hugs))~ Colleen

  23. Dear Knot, my heart breaks for you. There are tears in my eyes from reading this. You did nothing to deserve it, of that I’m certain. It just is, and oh what a thing it is. I wish I could do more than feel sad, but I’m so glad you have narcotics. You just need to alleviate the pain with what you have. Know you’re in my thoughts and prayers, and I don’t utter those words lightly. xo

  24. Mandi says:

    Pain is an awful awful thing. I have struggled with it since my metastatic diagnosis and am constantly trying to figure out how to fix it without needing medication (the fixes seem worse sometimes). I hope you find relief. I know taking pain meds can be horribly frustrating, but not being in pain is important! <3

  1. 12 July, 2015

    […] her job this week. It was heartbreaking in so many ways. And a different kind of heartbreak reading Knot‘s visceral account of her […]

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