God in his mercy

Out flew the web and floated wide-The mirror crack’d from side to side;”The curse is come upon me,” cried The Lady of Shalott.

It’s known as cording, or ‘axillary web syndrome’. It’s not uncommon, though it’s more common in women with more extensive surgeries than I had. Depending on where you read, it self resolves in a few months, or it lingers on forever with flareups possible years after surgery. It’s best treated with ice, or warm heat, or gentle massage, or by stretching, or rest. It’s caused by over exertion too soon after surgery, or it has no known cause but tends to appear a week or so after surgery, after an otherwise unremarkable recovery. Developing a seroma can predispose one to developing AWS; AWS can predispose one to developing lymphedema – or there’s no connection. Radiation can aggravate the condition, as can any of the myriad other things that can lead to lymphedema (insect bites or stings on the affected arm, cuts, scrapes, sunburn, over exertion, etc etc ad nauseum). Women with lower body weights are more susceptible to AWS; it’s just not as apparent on heavier women.

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

There seems to be a dearth of real research on the syndrome – it’s been recognized for years as a possible effect from surgery, but I guess it just wasn’t *interesting* enough to merit research.

It’s decidedly odd, this extra tendon like thing in my armpit, the pulling of it down my arm, the extreme sensitivity of the skin in that area… yet another aspect of my body changing out of my control,  and I do feel rather bitter that I wasn’t warned about this; I wasn’t warned about the seroma; it’s all been word-of-mouth and “what-the-fuck-is-this?” and quick web research on my part.

I’d rather *know*, I’d rather be drowning in a sea of information about the possible effects of surgery, of chemotherapy, of radiation – rather than suddenly developing weird symptoms and having to do the research, only to find the symptoms aren’t weird at all, they’re relatively common.

It’s been a bugger, so it has. I thought the surgery would be relatively simple; I thought my body would recover quickly; I’d be dealing with a body distortion that I’d need to reconcile to my body image and that would take time, sure, I’d be tired and cranky and all that stuff, but there wouldn’t be all the rest of this. This was supposed to be the easy part.

Instead, the seroma, and the pain it brings. Now AWS, and all of the uncertainty around that – will it resolve? Did I do something to cause it? the testing of range of motion limits after surgery, the one night sleeping on the left side without the bra and icepack, is it my fault? Is this going to be the rest of my life then, recurring pain, and weird changes in my body, and being careful careful always to avoid stress on the arm, to avoid sunburn, to keep mosquito bites confined to the rest of my body? And how exactly am I going to do *that*?

And if this is what I’m experiencing now, in the ‘easy’ part, and I wasn’t warned or told, what’s next on the docket? What other effects are coming that I’m not going to know about until they hit me?

It’s all very discouraging, so it is.

He said, “She has a lovely face;God in his mercy lend her grace, The Lady of Shalott.”

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4 Responses to God in his mercy

  1. Poor kid. I wish I could wave a magic wand and make it all go away. Short of that, I wish there was something I could do to help in addition to mere messages of support. And yet my feeling of powerlessness must positively pale in comparison to yours. And yet, you ARE in control – through your blogging and throughout the positive manner in which you deal with every single day. I’m in awe of your power and cannot but think that this too shall pass and that you’ll soon find yourself in far calmer seas.

    Watch your mail!

    -Nathaniel

    • dropjohn says:

      basically, I want my body back the way it was, I’m tired of the pain and of having *more* limitations, I want the results back so I know what comes next – and I know I’m very lucky, and it could have been much worse. It could also have been better.

      Watching the mail… for all my whinging, people have been marvelous. I feel very supported.

  2. mspachy says:

    I’m sorry to hear that you’re going through this. I too thought it was supposed to be the easy part. Thank you for writing about it, I will now be reading everything I can about it so I know what to watch for. It is amazing the things that come up that no one told you about. I mean how much research are we supposed to be doing on what might or might not happen. I really do think we need to be given a huge list of what we need to be watching for. I’ll be watching and waiting to read how it’s been resolved or how you’ve learned to deal. Your writing is helping…don’t ever stop. Huge Hugs – Kelly

    • dropjohn says:

      Kelly,

      Yah, it’s a bugger alright. I had two lymph nodes removed five years ago (other side) and the healing on that was smooth as silk – for some reason, I expected this to be the same, aside from the body image/body distortion bit.

      It’s not been. Admittedly, most people may not get all these fun effects, and some would rather not know all the possibilities for things to go wrong… but I would rather have had a bit more of a heads up. Especially once things started going ‘wrong’, and my chances of an easy recovery diminished.

      A lot of it I had been warned about, or knew about, through other women who had been through the same thing – but it was still a nasty little surprise.

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