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?

Rehab

I have been having a battle this year.  Increased time in my bed coupled with a strange kind of pelvic/hip/leg pain have meant my mobility is significantly reduced.  Intestinal Dysmotility complicates things further.  You can read about the battle here.  Like most things, I have been tackling it at snail’s pace.  There’s the problem of having a cast-iron appetite (seriously.  I don’t know why that is.  I spend most of every day nauseated but my love for food even surpasses that!) And then there is the issue of dizzyness when I am upright.  I spend my upright time on the essentials related to my kids and family.  It’s exhausting.  Riding my bike, which was possible even last summer, is out of reach for me now.

I saw my local doctor last week.  She was concerned about the way things are. More time in bed means less time weight bearing.  That means lower bone density and muscle wastage, further reducing mobility.  Less time moving means even my significantly reduced food intake, is still providing me with too many calories for my metabolism to burn off.  It’s a travesty that these tapping fingers can’t be my exercise, they work hard enough for all of me!  Except, apparently, that’s not an effective method.  So I need exercise that I can DO, for my whole body.  Recumbent preferably. Designed for me and for my specific needs.  My doctor suggested our local Rehabilitation Trust.

So yesterday I had a brilliant chat with Lynette.  She’s a clinical physiotherapist there.  Next week she is going to meet me in their gymnasium to do an assessment. We are going to come up with a plan.  I am already impressed with her.  I told her I had problems with my autonomic nervous system and she said “hydrotherapy might not be an option for you then.  Is temperature an issue?”  Oh my!  I love a professional who knows about the autonomic nervous system!

I’m cautiously optimistic!  Watch this space.  🙂

I thought it would be cute to put Amy Winehouse’s ‘Tryin’ to make me go to Rehab” song on this post. So I searched You Tube.  And this band Rehab popped up.  I clicked on a few of their songs and I was struck by the amazing variations of their lead singer’s voice, he can go from gravelly jazz tones right into sweet angel.  What a beautiful voice. The lyrics are all about drug and alcohol addiction.  Mercifully, drugs and alcohol aren’t my problem.  But listening to this song reminded me of times in my life when I have been dealing with addiction in people I love.  It’s a brilliant song.  So even though it’s got nothing to do with the type of rehab I’ve been talking about, I’m posting it.  I am a big believer that I should pay attention to what ‘pops up’ in my life.  So maybe, this song is for you or someone you love.
A little bit of random musical kismet.

Rehab:  I Can’t Catch Up To You.