Words, Margins, Bias and a Small Whisper

I have a very loving relationship with words. Words and I have been going around together for many years. But sometimes, words disappear and I am left floundering without my dear friend. Lost in the land of no writing. When that happens, I try reading. I listen to music.  I try to be more observant of what is going on around me.  I try to find the ‘muse’. But she is even more elusive than the words.

So I am just going to collate here a few things that have been skipping around my brain, skirting the edges and looking for a place to land. Usually these things arrive for me all packaged up and ready to write, but not this time. So bear with me while I purge to the page, all the little bitsies that don’t seem to fit anywhere in particular.

First and most importantly:  I got my histology results!  The “margins were clear,” which means, no more high grade pre-cancer cells proliferating on my cervix. Woop!  I am so happy about that!  It was such a weird sensation to get that news, because I wouldn’t have been at all surprised if my luck really was that bad. Ya know?!  (I’ve been reading about types of cognitivie bias, thanks to my friend Beth… this type of thinking is an example of negative bias.  You can read about 9 other types here). So I am thankful and happy and so full of the joys of spring over that very good news! That medical terminology about margins… it got me thinking about the margins of society, how some things are marginal, and some people are too.  I thought about how often I doodle in the margins. And I wanted to write a post about that, but I couldn’t make it happen. So instead, a paragraph. The margins were clear. And… exhale! By the way, did you know that Colin Firth is not just rather attractive, he’s also deeep?!  Lookie here…

 

If you don't mind haunting the margins,

During the course of my Be.Leadership programme, we have examined the concept of unconscious bias. All forms of bias. The challenges to clear thinking and accurate assessments of situations. I think being able to identify bias is a really important criticial thinking challenge for all of us. Particularly at this juncture in human history.  My cousin posted this on facebook from the Dalai Lama.  It says it better than me.  But do look also at this article if you are interested in discovering the types of cognitive bias that might be dogging your thinking. For me it is a constant search and stretch as I seek objectivity and good decision making, as a mother, friend, wife, sister, daughter, citizen. I think of these biases as ways of thinking that adjust my sails. My course can be drastically altered and I can end up way off course if I let them influence my thinking without conscious awareness.  Being aware helps me to counterbalance my thinking.

If you don't mind haunting the margins,(1)

So that is me and my jumble of thoughts today.

I also want to tell you, but almost in a whisper, just so I don’t jinx it, that I am feeling really good. Stronger. It’s not what I expected as I begin to wean off the meds that have helped me so much. So… fingers crossed.  I’m going to employ some gambler’s bias (‘it’s a winning streak!’) and let my ship sail quietly into a safe harbour.  I’ll stay there as long as weather permits.

Shhhhh, let’s not rouse the wind from it’s four corners.  Shhhhh…

 

 

 

The Smear Campaign

smearcampaignWhen I embarked on my six month steroid treatment, I was told by numerous people in the medical profession that I couldn’t safely stay on them any longer than that.  As it became clear that the infusions were making a massive difference in my quality of life, I began to wonder why we couldn’t just stay with them.
They’re working!  So why not?”   I asked.  I would be a given serious look and a statement like “No, no, not a good idea long term”.  I was told that they effect bone density, among other things, and of course, you don’t want to have the bones of an eighty year old when you are forty, not if you can avoid it!  In addition, steroids are an immuno-suppressant, which is why they are working for me. One of the things my immune system does is erroneously attack my autonomic nerves.  It’s why I am sick. So suppressing my immunity reduces that misguided malfunction, making me feel better.  It’s just another convoluted body conundrum, my immune system is making me sick… but I still need it.

See, suppressing the immune system isn’t selective. The medication can’t specifically target the part of my immune system that isn’t working properly, it suppresses all of it. And that means that all the work my immune system usually does, battling infections and reducing the impact of other threats to the body, is compromised. I noticed it first in the little things. Small cuts and abrasions that took longer to heal and got infected easily. Eye infections, UTIs, coughs, colds and sore throats that took ages to clear. And then, a phone call from my GP.  Remember I had a smear recently? She said that the results, in combination with my steroid treatment, meant I needed a colposcopy.  So she referred me to the hospital.  I called them after I got my letter, asking if they had a date. The receptionist said that my appointment hadn’t been triaged yet, but based on the wait list I’d be seen next month. Then last week I had a phone call asking if I could come in the next morning.

A colposcopy is the next step after an iffy smear test.  It is a scope used to examine the surface of the cervix to better see the changes noted in the cells at the transformation zone, where the squamous and glandular cells meet.  The doctor uses a combination of acetic acid and iodine to observe changes that are indicative of a problem.  This screening service is so crucial, because it is an early intervention.

anatomical diagram of the colposcopy procedure
Source: www.pixgood.com

I had high grade changes in my smear results (possibly why my GP said, this). The colposcopy doctor found visual evidence of a bloom of pre-cancerous cells and biopsied the tissue for confirmation. She explained that around 80% of women contract a virus called the HPV (Human Papilloma Virus) back when they become sexually active (those stats are the reason behind the vaccination they’re giving all those teenagers).  Normally, the immune system is very efficient at handling the longer term cervical cancer risk posed by this virus. But when your immunity is suppressed, well, it’s much easier for nasty cells to proliferate.

Thankfully, there is an easy fix.

Usually it is a day-stay surgery with a local anaesthetic, a diathermy knife and a deft doctor.  It’s called the LLETZ Procedure (Large Loop Excision of the Transformational Zone) .  My doctor explained that, for me, it will have to be under a general anaesthetic.  That’s because although the previous gynaecological surgery I had was successful (the top and bottom walls of my vagina have held) the side walls have now prolapsed. It’s a bit more of a challenge for the surgeon so they’ll need me to be ‘out’.

So I guess, for me, the presence of those nasty cells was a loud and clear example of exactly why I can’t stay on those steroids.  I get it! And I am so glad that we have a screening service that finds these things before they pose a serious risk to the patient. Only 1:100 patients who present like I have will go on to develop cancer needing further treatment, so I feel safe and in good hands.
And lucky!

In New Zealand our cervical screening programme is free.  All women should be having pap smears at regular intervals.

I know there are a lot of reasons not to do it.  Having pap smears is not nice.  It can hurt and for some women it can be painfully embarrassing. For others it is a difficult reminder of bad past experiences in that region and can trigger traumatic responses.

Please find a way, somehow,  to have your regular smear.
It’s five minutes of unpleasantness that might save your life.

Have you had yours?

Pretty Little Pink Thing

Girly Post alert.  This one is all about female anatomy and my feminist sensitivities, so if you don’t want to read on, please don’t!

Ah, I don’t know quite why, but I’ve been a bit tearful lately.  Probably my hormones (the Bobby D calls them my ‘moans’… can’t think why).  And today I had an encounter that had the tears springing up fresh. Silly, because I’m a tough ol’ bird. I guess there are some things that make you feel a bit sensitive.  Criticism about any aspect of my girly bits makes me a little reactionary.

I remember when I was due to have my first baby, the Obstetrician had some concerns about my cervix.  It was covered in scar tissue.  She was worried it would be problematic when the cervix had to efface.  It took more than thirty hours from induction.  And I delivered a beautiful little Bee, followed three years later by a whopping fella, Zed.  Then, a few years ago, I had a significant gynaecological surgery.  See, a couple more years of bowel and bladder dysfunction had damaged the walls of my vagina, front and back. I still feel aggrieved that I managed to get my vagina through two pregnancies and a very large second baby, intact, only to have the muscle walls breached by a retentive bladder and overloaded secum.  Unfair, she cried!

Anyhoo, during the surgery, the rectocele and the cystocele were repaired.  My “telescoping uterus” (I imagine her as a fearless buccaneer scanning the horizon) got hitched up and stitched to my spine. A further surgery was necessary two months later, when my post-operative pain hadn’t gone away.  I had exposed nerves in the granular scar tissue caused by the initial surgery and nerve pain from the hitch-and-stitch.  It was climb-the-walls painful.  I had steroids injected directly into the site and settled in to what would be my new normal.  As time went on, the pain crept back.  Eventually, my pelvis just always ached.  I didn’t even consider that strange.  But more intense nerve pain would break through the ache and travel down my legs, burning and stabbing as it went, making walking increasingly difficult. Strangely, I didn’t even relate this pain to the earlier surgeries.  I worried that my gait issues and pain problems were signs of a neuromuscular development in my diagnosis.

Getting high dose steroids this year to suppress my immune system had an unexpected side effect.  The anti-inflammatory benefits of the steroids knocked out my pelvic pain.  I was walking normally within days.  I’ve only had to use the cane a few times since the steroid treatment began, it’s been amazing.  And finally, without all that pain down there, I’ve caught up on my overdue smear.

My GP is a really lovely woman,  and normally I love her straight talking manner.  She has this new smear taking device with a built in light.  Vastly different from the old metal cranking devices.  Ow.  But the new-fangled thingamajig was great.  And she clearly got a good view.

“Oh!  A few nabothian cysts up there!  Nothing to worry about… gosh, your cervix is not exactly a pretty little pink thing is it?”
“Probably not,” I said “…she’s been through a fair bit, I reckon.”

Why is there even such a thing as a

As I walked home, freely swinging my legs in their hip sockets, those words echoed over and over in my head.  The tears sprang up. So I laid my hand on my tummy and had a wee word of encouragement to that old girl stitched up to my spine.  You might not be a pretty little pink thing, dear Uterus, but you have done great work in your time. You cradled my two babies all the way to term, you get assaulted every month by the injustices of menstruation and still you rally.  You have been tied to my backbone and still you carry on. In my book, that makes you a thing of wonder, strength and resilience.  You are beautiful, just as you are.  Battle scarred, pock marked and cysty.  You’ve been doing the hard yards and I salute you.

I might be feeling just a tad defensive of my girly bits.

Hmmm.  Why is there even such a thing as a ‘pretty’ cervix, for crying out loud?
Enough, already.