Displacement activity

As some of you know, these last two weeks I have been spending more time than I’d like with my friends in the medical imaging departments at our two local hospitals.

It has’t been a happy time… I’ve been having severe back pain, without any discernible cause or initial event. Here’s the thing. When breast cancer spreads, its most common destination is bone. Two weeks ago I had a CA125 tumour marker blood test and a pelvic ultrasound. Nothing there. Last week I had a CT scan and a nuclear medicine bone scan. I saw the oncologist again on Thursday to get all the results. For bad news, it’s actually pretty good! No metastatic cancer. But…

My back pain is intractable, responding to neither the slow release oxycodone analgesia I normally take for the arthritis, nor a hefty top-up dose of Endone, or benzodiazepine muscle relaxants. But I now have some neuropathic analgesia which, o joy, is actually working. And I’m wearing a back brace.

SpineWhat you’re seeing here is my L4 and L5 vertebrae, which are “incorrectly aligned due to degenerative spondylosis, with mild scoliosis of the lumbar region with convexity to the left”.  And you know what?  It’s not nice. The space for the spinal cord is getting a bit pinched (see that top arrow?), and the vertebrae are beginning to rub on each other (bottom arrow). I’m having an MRI on Friday to see the close detail, so they can see if there’s any herniation of the disk, anything pressing on the nerves, and hopefully put together a plan for conservative, physiotherapy treatment rather than surgery.

So of course, during all the waiting, I responded as I always do, with displacement activities. (That was a joke, in case you missed it. Not very funny, but the best I can manage with displaced vertebrae :-/ ) I finished the dress. I’m cranking out Time for Teal blocks as fast as I can, I cut out another top to sew when the paper piecing is driving my crazy, I have embroidery to catch up with for tomorrow, and several more hatbox blocks to make. Much of this can be done sitting. Standing’s the hardest, lying down with pillows under my knees is wonderful, but you can’t get anything much done that way, and the doc wants me to stay active.

I like having something pretty to think about. It takes me longer than before, and I have to move more gently and picking things up off the floor is a major exercise, but I can still make, create, imagine, design, draw, sew, embroider and write.

All things considered, it could be a lot worse. Life is still sweet.

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95 thoughts on “Displacement activity

  1. Love your positivity and eye for beauty, in the face of adversity and pain.

  2. craftycreeky says:

    I think using sewing as distraction therapy is a great plan, keep at it 🙂 Hope they manage to control your pain soon. Love your attitude, well done 🙂

  3. tialys says:

    Thank goodness that’s a scan and not another of your complicated quilt designs 😉
    Poor you – back pain is no joke. I have not suffered too much with it myself – although my yoga teacher says I have slight scoliosis. However, husband and eldest daughter are forever at the chiropractors so I know how incapacitating it can be. I admire your determination to distract yourself with pretties but I know how well getting in the creative zone works when you want to ‘remove’ yourself from some of the more unpleasant things in life so create away. We’ll always love seeing the results. Hoorah for analgesics and I hope they keep working for you x

    • katechiconi says:

      I didn’t manage a lot of prettiness today, sadly, doing the shopping (very…. very…. slowly) got in the way, but at least I have my SAL embroidery done for tomorrow!

  4. claire93 says:

    ouch and good luck with the MRI.

    • katechiconi says:

      In a sense, I want there to be something visible, fixable, instead of this nebulous ‘thing’ that lots of people have but which doesn’t cause them the pain I’m gritting my teeth through. Ah well, time will tell 🙂

  5. Loads of empathy, sympathy and encouragement winging their way to you. Thanks for that list of analgesics – noted to try on my GP
    love,
    Viv

    • katechiconi says:

      The stuff described by my pharmacist as “shit hot” is Lyrica, or pregabalin, made by Pfizer. But it takes a few weeks to reach its full potential, and meanwhile, one’s a bit sleepy… Prescribed for nerve pain as opposed to inflammatory pain such as arthritis.

      • Most of mine is a mixture of fractures, arthritis and scoliosis, though after embroidering for a couple of hours, my nerves are screaming at me! Thanks for the names.

      • katechiconi says:

        You’re welcome. The slow release oxycodone is called Targin, by the way, and is a mixture of oxycodone and naloxone, which stops you getting bunged up, which you would with oxycodone alone.

  6. Emmely says:

    Yeah, that sucks. Hope they come up with a good plan soon!

    • katechiconi says:

      The MRI first, for a clearer picture. It can’t come too soon. It’s very hard to put on one’s undies wearing a back brace… and as for picking things up off the floor, forget it!

      • Emmely says:

        I can imagine! Perhaps you can get one of those grabby things on a stick? No idea what they’re really called but you’ll probably understand what I mean.

      • katechiconi says:

        Strangely, they’re called grabbers! And I have one, for bringing things down from tall cupboards (I’m not very tall). I also have a new 65cm exercise ball, and sitting on that helps too….

      • Emmely says:

        The problem with those excercise balls for me is that I can’t get up from them without help unless I topple over (but that seems hardly a smart idea if your back is already hurting). Hope you don’t have the same issue! I can see how sitting on a different surface helps relieve back pain. For a while I borrowed a cushion like thing from my physical therapist that was a bit like an excercise ball but was flat so I could put it on a chair to do balance excercises on. I didn’t have it for backpain like yours but it might be useful for you as well. It looked a bit like this: https://www.medipreventiecentrum.nl/wiebelkussen-33-cm-medi

      • katechiconi says:

        The trick is to roll slowly forwards until your legs are bent enough to stand up with your back very, very straight. The back brace is actually very helpful because it holds everything straight and keeps it warm. Patience will be the key, I think…

  7. Debbierose says:

    Kate, you are a powerhouse of inspiration. Hope you get a good MRI result & speedy recovery.

  8. NikkiM says:

    Hi Kate you in my thoughts. Love Nikki

  9. nanacathy2 says:

    Back pain is the pits! You have lots of sympathy and good wishes winging your way. Displacement activity is the best way to get through hard times. Xx

  10. Oh dear Kate, I’m so sorry. 😦

    • katechiconi says:

      It happens, that’s life. At least it’s not the cancer back to torment me. I have plenty of options to try. The only downside is how long all the solutions potentially take 🙂

  11. Clare says:

    I sympathize completely (two herniated disks and between that, a pulled muscle) and much admire your positive attitude. The distractions make such a difference. Hoping for a diagnosis and healing very very soon!

  12. Elizabeth says:

    Oh, I’m so sorry for your troubles. I wish good words did more for relieving pain. But having something to look forward too and, as you said, something beautiful to create and keep your mind working on is almost as good as a narcotic. I’ll be praying for one of those ‘medical miracles’.

    • katechiconi says:

      Good words do help, they make you realise you don’t have to go through it alone. My creative community is a source of great joy, strength and distraction of the best kind 🙂

  13. If it’s not one thing, it’s a dozen others. ;( I always say “any day above ground is a good day”. A little to optimistic but some day’s that’s as good as it can get. Everywhere we turn, someone is struggling with something. You do your struggle better than most. Sending you good cheer and lots of good thoughts.

  14. mlwilkie says:

    That sounds so painful, sorry to hear you are having problems. I hope it gets better soon!

    • katechiconi says:

      It’s not fun, but it does make you prioritise what’s important to you (as opposed to what’s possible!). For example, don’t even ask me to vacuum, but somehow, sitting for half an hour at the sewing machine is quite doable! I’ll know better after the MRI how miserable life is likely to be in the long term 🙂

  15. dayphoto says:

    Oh, My, Goodness! I am so sorry for you, my Dear. Back Pain is terrible. After the birth of my third child I was paralyzed for three months with back pain—it was horrendous. Finally, with the help of a chiropractor, I gradually was able to walk again. Then one day I was back to my old self. I’m not telling you this to tell you to go to chiropractor, I’m just saying I SO understand.

    Being active is good, but not over-active!

    Prayer and HUGS!

    Linda

    • katechiconi says:

      I’m under strict instructions to avoid the chiro because of the spinal cord constriction. Just a little bit too much manipulation might finish things off. But I’m looking forward to working out a physio plan once the MRI shows what needs to happen. Hugs gratefully received, thank you!

  16. Jule says:

    Oh, no! 😦 Hope they can patch you up soon. Hugs

    • katechiconi says:

      No overnight solutions, I’m disappointed to report. Lots of exercises, rock-taping, back braces and pills. Hugs do seem to be helping, though…!

  17. Oh my Kate!!! Sending you lots of healing hugs…can you feel them?! 😉 I hope the docs can help you quickly!
    Your package with the F2F blocks, T4T blocks and the cracquelure fabric is on its way… So that is at least one good thing coming your way.
    Beterschap!
    Esther

  18. M. L. Kappa says:

    Hugs from me too! Keep positive

  19. ordinarygood says:

    Phew on the cancer scarey stuff but more miserable/excruciating pain sucks too. Only a practical note – would one of those long handled pincer things that people use to pick up litter be helpful to you? Not an option for picking up pins and needles I would think though. Kia kaha 🙂

    • katechiconi says:

      You mean a grabber? Got one! Also a long telescopic thingy with a magnet on the end for pins, needles, scissors, sewing machine feet, screwdrivers, rotary cutters, and all the other stuff I drop all the time!
      Ahau rite kaha rite te kaha o toku hoa!

  20. ordinarygood says:

    Oops…..mushy brain before coffee “On” not “Only! Off to get coffee now 🙂

  21. lucyannluna says:

    Good luck with all the scans, hope they can sort something out.

    • katechiconi says:

      The scans are good to tell you the extent of the problem. The tricky part is what to do with that knowledge afterwards. I foresee plenty of nasty exercise in my life. I’d rather be sewing…..

  22. Your positive outlook is amazing. Pain tends to bring out the worst in us. My husband, whose neck was broken in a car accident years ago, was told by his neurologist that if they took 100 people 50+ off the street to test, the majority would have significant disk degeneration and pinched nerves. It’s still a mystery why some people have pain but most people had no symptoms at all. I think your approach — creating, baking, reveling — is an antidote to pain. I hold you as my example.

    • katechiconi says:

      Awww…. There is a fascinating book called A Nation In Pain, all about the mechanism of pain, how it is perceived, how it resolves and what is available to mitigate it. In it, there is a fascinating theory that if a person is exposed to quite high levels of pain either as a child or during adult life, this changes and re-sets their pain perception so that things that others can endure easily become much harder to bear. As a child, I endured bronchitis every winter until my early teens, and then some of the most hideous pain of my life as a result of cancer therapy designed to boost my white blood cell count. I thought it would make me more stoic, but apparently it has just made me more wimpy! Still, I maintain my position on the body: it’s just a vehicle to carry my brain around in, and if I can persuade my brain to disregard the grumblings and clunkings of the vehicle, all will be well.

      • knitnkwilt says:

        Well that one is counter-intuitive. I’d expect experiencing high levels to reset so as to be able to endure more, not less. Oh well,what do I know?
        Here’s hoping for physiotherapy instead of surgery, loathsome though exercises be. More hugs while you distract yourself.

      • katechiconi says:

        I know – it had me a bit fuddled till I got my head around the fact that all pain is chemistry, because that’s how nerves send messages, and if certain nerves over-fire they set up sort of shortcuts so you feel it more and sooner. Or something. It’s extremely well written, easy(ish) for a lay person to understand, and offers so much common sense I find I can’t live without it. I’ve had the book out of the library on more or less permanent loan for months and have now been told politely that it’s time to let someone else have a go, so I’ve ordered it from Amazon. Now that I’m getting one of my own, the highlighter and Post-It note action will be extreme….

  23. rutigt says:

    Life is sweet, but not always the way we want it to be. i hope you are getting the right help from medicals and doctors and hospitals and all. To be honest…..I didn´t understand every word, but I think I know what´s it all about 🙂 I really wish you good health ❤

  24. This looks and sounds absolutely horrendous! I hope you can get some relief from the pain soon. If you can do some crafting that’s great. Big hugs to you (but not too tightly of course) 🙂

    • katechiconi says:

      It’s not fun, that’s for sure. I’m doing as I’m told (for a change) and so long as I’m not asked to stand for long, I manage. Sewing is a great escape!

  25. Grannymar says:

    Oh Kate, life can be a bitch at times, so I am sending a large helping of gentle hugs to be taken at least three times a day! You have really been in the wars lately. I hope the scans provide a clear picture, followed by a suitable course of action to ease your pain.

    I have not been around much over the past months, struggles of a different kind going on over here and the sudden scary onset of a problem with my R-eye, sent me scurrying to eye casualty. Reading was tiring and difficult, but crochet with a large hook and big stitches became a life saver for me. No major damage and things are improving, though I am being extra careful with plenty of time away from digital screens.

    I too travelled the annual ‘brown-kite-us’.(as a friend of my parents called it) route as a child. It lasted anything from four to six weeks. My bench mark for pain was earache which I was prone to for many years. Nothing, even childbirth, has ever quite come up to that level.

    Do take care and know your friends are all travelling with you to lighten your pain.

    • katechiconi says:

      Ah, for us it was Broncho-sore-us… The worst pain I’ve ever had was after each dose of chemotherapy, when they gave me a shot of something called Neulasta, which was supposed to stimulate my bone marrow to produce more white blood cells. Chemo knocked mine out completely, zero blood count, so it was quite vital to have it, but the pain was indescribable. All your big bones filled with boiling hot lead, for a couple of days at least. All I could do was lie very, very still in bed, grinding my teeth and screaming quietly and occasionally vomiting. By contrast the back is merely an inconvenience, if very, very sore.:-)

  26. kymlucas says:

    Always rooting for you, Kate. And while this is certainly bad, I’m relieved it’s not bone mets. Always there in the back of your mind, isn’t it? Xxoo

    • katechiconi says:

      Always, always. And apparently also my GP and oncologist, hence the speed at which they moved. I don’t think I’ll stop worrying till I hit 10 years on. It clobbered my mother at 6 years, so the 5 year all-clear is a bit mythical, in my opinion. All in all, though, I’d rather be wearing a back brace than a Portacath 🙂

  27. Lynda says:

    Kate, I’m so glad to be reading this news! I know it isn’t the best, but nonetheless it is better than the alternative. I do hope that the doctors, specialists and you will find a treatment that helps!

    • katechiconi says:

      I do too, but I have a dreadful suspicion that because it’s degenerative and likely to be an ongoing process, the long-term management is going to lie in my own hands, and it involves that hideous word Exercise. Specifically, back strengthening ones. And swimming. I don’t like swimming, I’m bad at it, but it sure does take the strain off…

      • Lynda says:

        Trust me, I hear you. I used to love to get out and get my exercise… till the torn meniscus and resultant surgery. Directly following the surgery all the strain put on my “good” knee caused it to go bad. Now both knees hurt. We know what we need, but if it hurts getting there we are reluctant to get up and get moving. 😐

  28. Kate, I’m Understanding what you’re going through. I had a car accident some years ago and my back suffered brutally. Then later when that was better began having issues with C-4,5,6 at the top of my spine at the back of my neck. .I too have had pain issues most of my life and the really awful part is I’m very allergic to any thing opiate based and lots of medications so that limits what I’m able to take for pain. I’ve learned to do many things to distract my mind from daily pain. I’m so thankful to be able to sew, draw, color some time work in flowers or the garden and do other things that help. It may take a bit of time but you’ll eventually be okay. Many light hugs and lots of prayer for you. I hope that we have all encouraged you as you encourage us.

    • katechiconi says:

      I’m weaning myself off the opiates. I don’t like what they do to me. There’s something new I’my trying which seems to be working pretty well. And as you say, learning to distract yourself with other things is key. The body is only a vehicle for the mind, and if I can keep my mind contented, creative and busy, the rest is just my surroundings being a bit noisy!

  29. I never even thought about the possibility that cancer might have escaped to the bones when we spoke, even though I know that is what the nasty thing does. That must have been a worrying thought until it was ruled out. Than goodness it was ruled out! I hope something can be done to avoid long-term pain.

    • katechiconi says:

      It’s going to be a worry for some years yet. In theory, you’re clear after 5 years. In practice, it ‘got’ my mother after 6. I reckon 10 years is probably a safe bet…. I get by OK, the worst pain is when I have to stand for too long, and then it takes ages to wear off. She’ll be right, eventually….

  30. I’m late in, needed time to digest. I get worked up sometimes! I’ve also got a dodgy back, and oh heck yeah it’s all nerves. I’d love me some of that, if I would still be able to work! I miss the steroid they had me on, big time.
    Hope they don’t have to do surgery – one of my oldest friends is now a cyborg and it hasn’t helped much. The X-rays of the metal in her spine aren’t of the comforting variety. 💚

    • katechiconi says:

      I wouldn’t mind the metal if it would stop the ‘clunk’ sensation I get when the damn thing slips back out of alignment and the shooting pain in my arse and down my legs starts up again. I tried steroid shots in my bad shoulder 3 times. No more. The first time it lasted 6 months, the second, 3 months, the last time about 6 weeks. Too much invested hope for too little result. And it hurt, a lot. I get steroid flare from the shots, and it would be going into my spine. Not a chance… Light me a candle for St Jude.

      • That sounds bad – what is steroid flare? I just had pills.
        I had a shot in my spine, been so long now I forget what they put in there! Absolutely horrific. I blogged about it (of course). Just the experience, not the after effects – not even sure if it helped. It might have. I do clunk, and click, and pop. It’s the side of my left thigh that drives me nuts with burning and itching and sudden OH OWW (despite the MRI showing the pinch is on the right, trust my nerves to be backwards).
        I’d be scared of all that metal – you would think you’d be clanking instead of clunking!

      • katechiconi says:

        You know when they put the shot in, there’s usually a dose of local anaesthetic with it, and the “Aaaah, that’s better” sensation tells them they’re in the right place. Steroid flare is when the “Aahh” lasts about half an hour and then it starts to hurt like blue blazes for a day or two and you wonder what the hell you’ve done. And then it slowly starts to work. Sounds like you had it too. Steroid pills, whole different story… I’m not keen, they affect the whole system too much and have to be slowly tapered off, etc. We shall see what Friday brings. If it keeps me off the medication, I shall become an exercise devotee (very) late in life. Bring on the physio!

      • What happens Friday, again?
        No, I was just entirely stressed over the whole thing of having a needle in my spine and how haphazardly they seemed to go about it. Ah, found the post: https://heretherebespiders.com/2012/12/11/i-dont-ever-want-to-do-that-again/
        I don’t know if it worked because shortly thereafter I switched jobs from the office to the warehouse, and I walk at least 10km a day now pulse lots of heavy lifting. It’s helped a lot, so yes – go for the exercise if possible! I can’t work out just to work out, but working physically as a daily job does it for me. Not to mention how much less mental stress is involved!

      • katechiconi says:

        Friday’s the MRI, just to complete the set, having already had the ultrasound, CT scan and nuclear bone scan. We’ll find out whether something’s actually broken, a bit slipped, a lot slipped, herniated and what nerves are affected now and likely to be affected in the future. And now I’m going to scare meself white by going over to read your post….

      • Oh man, don’t read that. I’d forgotten how it was.

      • katechiconi says:

        Too late! I have a handy tatt exactly one centimetre below the vertebra that is pressing inwards. You can run your fingers down the spine and feel the dip. I feel the tatt may come in handy. It’s an inverted triangle. I feel like telling them that shit out comes from the bottom of it (ho ho) and shit in goes over the top (ho ho HO).

      • Ha! You are awesome 🙂

      • katechiconi says:

        Nah. Full of shit. Of some description… 🙂

      • katechiconi says:

        You’re right. The other stuff will have to wait till after Friday…. if then.

  31. EllaDee says:

    My thoughts are with you, daily and especially for Friday. You inspire by keeping as active and busy as you can. It’s the only way I think, keeping doing what you can do until you absolutely can’t.

    • katechiconi says:

      That’s exactly the way I see it. Do what you can, while you can, and when you can’t do that any more, find out what you can still do and do that instead.

  32. modflowers says:

    Have only just read this… so sorry to hear you are in pain (but glad it’s not due to a return of the dreaded cancer). I hope you find something to relieve the pain soon. You have an impressively positive attitude, I would probably just be watching daytime tv and being grumpy.

    • katechiconi says:

      I have my moments, but as I commented on your last post, having a perfect excuse for idleness seems to have resulted in an upsurge of creative juice, limited only by how long I can sit at the sewing machine! Thank you for the good wishes 🙂

  33. Oh Kate, I’m so sorry for the crap you’re going through. I can’t think of many people who could cope with all of this as graciously and stoically as you are. An upsurge of creative juice – I’m amazed!!! Have had a couple of ct scans myself this week, and have barely managed to dress myself to get there let alone taken my crochet hook… Will think of you tomorrow with the MRI and send you positive thoughts.
    xxx

    • katechiconi says:

      I know there’s damage, I know I can’t do much about it till the full extent has been determined, and I know it’s incredibly tiring to hurt in almost any position, but if your creative time is limited by how long you can sit, you (or at least I) become very focussed, and it sure as hell beats lounging on the sofa whimpering and feeling sorry for myself. Also, if you have to sit around in hospital in a chilly backless number, you may as well have some handwork to take your mind off the humiliation. And although it’s brutally uncomfortable by mid-afternoon, my back brace is my new best friend, holding everything straight and giving me a huge sense of security.

  34. Kirsten says:

    So the cancer scare was not fun, but as you say, a small silver lining. I used to work in a chiropractic clinic so I know that back pain can be torturous. I hope they manage to get it under control for you so that it doesn’t impact you too much. Fingers crossed and lots of hugs.

    • katechiconi says:

      The right drugs help – neuropathic instead of just opiate analgesics. It’s been a bit of a game changer. Of course, now I have to wean myself off oxycodone…

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