Wednesday, 9 October 2013

The things they don't tell you ...

It's Breast Cancer Awareness month again, so I thought I'd share some experiences that they just don't warn you about!

OK, yes, I'm know - I'm lucky. I've been through all the shit stuff (as documented here!) and come out the other side. I'm one year in remission. Things could be a lot worse.

However, I am also in almost constant discomfort and pain. My chest, on both sides but mostly on the mastectomy site, is at best subject to a dull ache and, at worst, is so painful that it wakes me up at night.

It can be excruciating; sharp stabbing pains and muscle spasms across my chest, coupled with stiffness in the underside of my arms. It's not nice and, sadly, seems to be getting worse.

Obviously, I've been worried. I'd been trying to contact my Breast Care Nurses but with no success, so finally resorted to consulting my good friend 'Google'.

And there I found it: Post Mastectomy Pain Syndrome (PMPS).

Apparently it is very, very common. Between 25 - 50% of women who have had breast cancer operations report some level of pain two to three years later. Indeed, one in five women still report pain 10 years later, indicating that PMPS isn’t necessarily something that will go away.

So how come it was never mentioned as a risk? Not to me and apparently not to thousands of other women?

The main reason, I think, is because they don’t really know what causes it. Of course, there are a variety of suggestions: cut nerves rejoining; muscle damage; the body still trying to communicate with the missing tissue (like with amputees) ... But they just don't know.

The most likely reason is the severing of the intercostobrachial nerves, which run through the axillary (arm-pit) region into the arm.

I certainly think this might be my problem, particularly as I also experience pain (albeit to a much lesser degree) on my left-side where essentially I just had a 'boob job'. They did though partially place the implant under the pectoral muscle (as they have wholly done on the right) and that causes constant strain across the front of my chest, my arm-pit and down the underside of my bicep.

Consequently, I have to be very careful. My mastectomy was on the right and, being right-handed, just routine tasks like chopping vegetables can cause the muscles to tighten uncomfortably.

Journeys on public transport, while never fun, can also be difficult; having to reach up and extend my arm to hold on, as well as the fear of being knocked.

Latterly, when I was still with Mr P., this used to cause problems. I don't think he ever fully comprehended the on-going pain and discomfort that I suffered, because why would he? Indeed, why would anybody? It's a very abstract thing to try and understand - particularly when it is so variable.

But, despite the discomfort, just understanding that this is a very real side effect of my treatment that affects many, many people has actually made me feel a little better.

I just wish that the surgeons and Breast Cancer charities were honest enough to flag it as a possible outcome instead of just letting us find out for ourselves.

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