Wednesday 12 April 2017

This picture says eight words 😀

Does my bum look good in this? .....It doesn't even matter.....

You know those things that you keep meaning to do but procrastinate so bloody much that the easy task (that you chose to do!) seems (incorrectly) insurmountable?

Well, writing this post is one of them.  I say allll the time on here how I have so many stories

to tell you, and this is one of them.  It's a little overwhelming to write about, but mainly it's just such a long story that I have kept procrastinating starting.

So that right there is a perfect segue for me to warn that this post will be long.
  And it's not about weight loss, although it does affect it and it is 100% about health.  So if that doesn't interest you, then stop reading now.  It is, however, also one of the most significant things happening in my life, so if that interests you, then continue reading!

Also, the photos aren't all going to seem in consecutive order. Most photos were taken in the second year of this two year saga, but first I have to tell you about the first year.  I like to balance out the illustrations of each post as best as I can; so I've scattered them throughout the post, not always in order of the text.  So just go with it and the photos will make sense by the end.

I'm also going to be slightly biologically graphic in my descriptions of things, nothing too major, but hey, when have I ever sugar coated anything?  Just let me say, you've been warned. 


And don't read this while eating.

ALSO, please remember that I am NOT medically qualified.  (Other than when it's my turn to
Sent to a friend who'd gone through it before
play the "docker" (doctor) with my 4 year old niece when we play "dockers and sore persons". :)
  This story is about my own experience, described by how I've felt, information given to me and research that I've done.  Please remember that this is my story, my feelings and my experiences, and I welcome feedback as long as it's thoughtful and not attacking. But most importantly, if you have similar issues, I implore you to seek professional medical advice. 

This whole saga started a little over 2 years ago.  I'll never, ever, forget this night.  By the

way, this part is probably the most graphic part of this post - so if you can get through this, you'll be sweet.

I came home from work on a Friday afternoon from my "day" job.  I was looking forward to going out to a boot camp social dinner that night - we'd started having "birthday month" dinners, and although this was February and my birthday's in January, this was 'my' dinner (along with the other Jan and Feb babies).

We were going to a pub with the yummiest pub food, and I already knew what I wanted:

battered fish and chips.  This pub made the best fish and chips.

Before heading to dinner, I just had to give my final approval for a blog post that I was writing for 12WBT.  I emailed my contact Tanya who'd been waiting on it, and said that I'd just arrived home and that I was reviewing it right then, and would send her an approval within the next 10min.

I decided to go to the toilet before reading it - I'd sort of been needing to go for a few hours and for some reason had waited until I got home to go.  I'm not a fan of going at work (as I'm sure no-one is!) but I'm not against it.  When you work full time and you're a human, you kind of can't be!
  This day, however, I'd put it off until I was home.

I emailed Tanya and ran to the toilet.  I was in a rush, distracted, had end of the working week wound up on a Friday afternoon type feels, and was calculating the time I'd need to review my blog post and what time I'd need to head off for dinner etc. etc. etc.


Go go go.

As I finished on the toilet, I was suddenly no longer 'go go go', but stunned, stopped in my tracks.   

The toilet bowl was filled with blood.  I'm not talking about a little bit.  The toilet bowl appeared to be a third filled with bright red blood.  There was blood everywhere.  And it was 100% from my backside / bowel.  

I tried not to freak, but I had no idea what to do.  I had never had this happen before - not even anything remotely similar.  

After cleaning up, I think the first thing I did was email Tanya.  It probably sounds strange to

do that, but I'd just told her that I was literally reviewing the article as I spoke.  I never could have imagined that a quick unmentioned toilet break would have such an impact in between emails.

I had no other symptoms, but I knew that it wasn't normal.  I rang 13HEALTH.  As I'm sure I've mentioned on here before, they've helped save my life before, so I hold their service in pretty high esteem!

The nurse ran through all of the standard questions, asked me what medications I was taking, if I had this symptom or that; etc. etc.

Nothing was raising any red flags, well, apart from the obvious (!), so he said to go and see my GP in the next however many hours.

Just before we hung up, he asked me one more time, was I sure I wasn't on any other medications?
Hangry feels

I was sure - he'd already asked me a couple of times - but my eyes glanced around my bedroom, regardless.  As I looked around, I noticed that on my bedside table were some anti-inflammatories that I'd been given for my knee - this was about a week or two after it had first started having issues.  I said to the nurse really casually: "oh, sorry, I completely forgot, they're so insignificant, but yeah I've recently had some anti-inflammatories for my knee.  But that's really it."

The nurse interrupted me and sounded shocked.  "What?  You're on anti-inflammatories?  Okay, you have to get yourself to an emergency room right away."

I was so shocked.  I may have even uncharacteristically questioned him.  They were just anti-inflammatories!  The way his tone and manner had changed, you'd think I'd casually mentioned that I'd just shot up heroin or something.  For any fellow TV show Friends lovers, Rachel's reaction in this scene really aptly describes the conversation change.


Everything can be related back to Friends

So, I messaged my boot campers and said that I had a slightly inconvenient delay, but I was still hoping to make dinner.  #dearkate...

I jumped in the car and drove myself to the hospital.  I rang my Mum on the way to let her know what was happening.  I'm not sure whether I spoke about this on the phone with 13HEALTH, whether my Mum and I figured it out, or whether I self diagnosed, but somehow we remembered that I'd been on Clexane at the same time as the anti-inflammatories.
Lemonade helps the medicine go down

For non medical buffs, Clexane is known as a blood thinner.  (Scientifically it's technically not, but it's the easiest way to describe it).  I have to inject myself with this each time I travel for more than 3 hours - for the rest of my life - thanks to the PE's I experienced in 2012.

I'd done a lot of flying for work that week, so I was using Clexane.  And on that work trip is where I happened to have first injured my knee - hence the addition of anti-inflammatories.

By the time I got to the hospital, I was convinced that the combination of the drugs must be the reason for the huge blood loss.  While in hospital I kept my boot camp buddies up to date time wise - I was still determined to get to that dinner!  I don't know if it was because it was partly to celebrate my birthday, just the fact that I socially adored those dinners, or because I was obsessed with downing that glorious fish and chips that I wanted to go so much, but I did.

Hospital visits are never conveniently timed.

I won't write about that hospital trip because I actually had a traumatic experience there that night.  I would never use the word 'trauma' lightly, please know that.  But I'll be using it several times through this blog post; and each time it is (sadly) genuinely used and carefully

chosen.

The diagnosis was that they didn't know what had caused the bleeding, but that I would have to have a colonoscopy to investigate further.  They also tested to see if I needed a blood transfusion because of the blood loss.  I didn't, but I'll never forget that shock of lying there and being told they were even considering this.  I donate blood - when you do that, you never imagine that you could be the recipient.

My lovely friend Jenna messaged me to say that they were closing the kitchen at the pub, and ever determined, (and delirious?) and because I was about to be discharged, I asked her to order me my fish and chips.  (Once I had confirmation I didn't need a blood transfusion). 
Every 3:30am dream :/

Yes, I know how utterly ridiculous that sounds.

Don't need a blood transfusion?  Kthxbai.  Fish and chips please! :/


Looking back on it now, I can't believe that I continued on to have dinner that night.  It was such a stupid thing to do.  I was extremely shaken from the whole ordeal, and should have driven straight home.

Everyone at dinner had finished eating; the birthday cake had been cut, and people were starting to wind down to go home.  I got delivered my fish and chips from the warming area on the bench; the last meal to go out as the kitchen was closed.

I tried to eat it but it didn't go so well.  I was filling my friends in on what had happened.  When I first told them that I'd be delayed earlier in the night, because I was in a frazzled state, I didn't choose the best words, and as such, I felt the need to explain, as the little that I had told them was even more embarrassing than the actual event.  So in the end, something that I'd usually be discreet about and keep to myself, was suddenly the table topic of conversation.
The drink that never ends

I mentioned that I needed to have a colonoscopy.  And immediately, it seemed like every single person at my table had had one, or knew someone who had.  And they each gave me the same advice.  Like, the same words.  Seriously, it's like people who've had colonoscopies learn this phrase and pass it down through the generations.  This spiel is what I've had from every single person over the course of a year.  I can quote them, word for word:

"Oh, they're not a big deal.  The prep's the worst.  The procedure itself is nothing.  They might find 2 or 3 polyps, but they'll just remove them, and it's all over."
#officialcolonoscopyadvicescript

I was slowly chomping down on my fish and chips and as soon as the girls told me that it was a proper procedure and that I'd be put under anaesthetic, I immediately lost my appetite and couldn't eat the rest of my oh so important fish and chips.

I'd told a friend literally the week before that 3 of my hugest medical fears were:

1. Surgery / procedure
2. Anaesthetic
3. Needing a catheter

It may seem like a strange list, but each of them scared the FUCK out of me.  And all of a sudden, I was finding out that I needed 2 of the 3?  I know that it's just a procedure, day surgery, and not even necessarily technically surgery.  But it was all the same to me.

I've had so many hospital visits since the PE's, but each of those was so different.  I was conscious for each one.  Do anything to me, do everything to me.


But don't put me under.

The anaesthetic fear is just derived from being beyond terrified of people doing things to me while I'm knocked out.  I've had local anaesthetics before, for moles being cut out and at the dentist, but never a general or twilight.  And I'd developed a huge fear of them.


My Grandma gave me this booklet style card that someone gave my great-grandmother to comfort me <3

I didn't think I could handle being put out to it.  I'm an extremely independent, in control person, and couldn't think of anything worse than people doing things to me when I'm not all with it to supervise.  I know that they're trained medical professionals and that people get knocked out every day, but none of that mattered.  I couldn't do this.
Snapchats to my parents

I went home from this dinner-via-the-hospital in a stunned state.  I was so stressed about the impending procedure, and was feeling more and more traumatised about what had happened that night in emergency.  I was also of course concerned about what could have caused all of that blood.

All I wanted to do was to lie in bed under my covers all weekend.  But two of my best friends had organised a surprise weekend away for me - leaving the following morning.  I had no idea where we were going or what we were doing.  It's one of the most beautiful things that anyone has ever done for me.  It was just the timing that ended up being awful.

If it weren't for this special surprise, there's no way that I would have left my house.  The trauma was growing, but I couldn't pull out of the weekend.  They'd booked a hotel, tickets to events, given me clues; the works.

Pleeeeeease
I ended up going but felt stunned and violated all weekend.  I tried my best to enjoy it, and I did, my friends are beautiful; but I had that sick, underlying feeling the whole time.  What probably didn't help, was that while we were away, we found out that a close friend of ours had been diagnosed with bowel cancer.  I remember being in their car on the side of the road, talking to him as a group on speaker phone, finding out what he'd just started going through.  I felt sick for him, and at the back of my mind, of course, I was thinking of my Friday night experience and was too scared to ask him how it was discovered.

Soon after that weekend, I went to my GP with the discharge letter from the hospital instructing me to have a colonoscopy and...that's when things paused.

I was so terrified, that I didn't make it happen.  For a whole year.  My GP didn't make sure it happened either, so I kind of 'got away' with it.  I know how terrible it sounds. 

An entire year.

During the year, I bled occasionally but have never lost that much blood since that first night.  Each time I bled, I'd get anxious, but continued to put it off...and put it off...
Best.food.ever.eaten.

Later that year I changed GP's and sucked it up, admitted what I'd been told to do, and started the process of booking one in.  This GP wasn't going to let me get away with not doing one either.  So it was going to happen.

It was scheduled for 29th March 2016 at 7:30am.

All through the year, and especially in the lead up, anyone I spoke to said the #officialcolonoscopyadvicescript as written above.  I was thankful for their advice, don't get me wrong.  But my fear of procedures and anaesthetic was extremely real and unusually extreme.

And in true Kate fashion, what ended up happening was quite the opposite of the
The selfies I took for Grandma
#officialcolonoscopyadvicescript that everyone had drummed into me.  The prep wasn't that terrible.  It wasn't pleasant!  But it was okay.  The worst part was that the day before the procedure, I wasn't allowed to eat anything.  I had to read the instructions twice to make sure I had it right - lol.  Not eat for 24 hours???  Were you kidding me?  Surely I was reading this wrong, but no.  So that was the worst part of the prep!

Any other day, I could think of that day and think "oh my gosh, get over it Kate, it's one day.  You're not going to starve, you'll be fine!"  I've skipped days of eating in my teens and when I've been sick, so it wasn't completely foreign, but when you're in the moment, on the day, and it's dictated to you rather than it being a choice, IT SUX.  I couldn't even look at food ads and I tried to avoid Instagram, because all I could see was food.  I even made a list of all of the food I was going to eat when it was over.  I was angry and irritable AF.

Anyway, other than being hangry, the prep was ok.  If you don't know what the prep involves, basically it's this (in my own words!).  I'll title this section and colour it purple, so skip it if it's boring.  Also remember that this was my diet and instructions; each hospital has
slightly different guidelines and it depends on what time your procedure is - so this is not instructional - I'm just sharing what I had to do.

The prep:

5 days before: Start a specific low fibre diet.  I call it the "stupid diet". It's not stupid, I just hate being 100% restricted in food types.  That's why I could never choose to follow a meal plan that dictates certain things you can't eat.  That's just me personally.  So that's why I refer to it as the "stupid diet".  They give me a piece of paper with what foods are allowed and not allowed.  There's a few veges and fruit I could have, but most are not allowed.  Yet you can eat chocolate and ice cream!  (Which was handy as my colonoscopy was on Easter Tuesday, so my "stupid diet" was all through the Easter weekend!)

4 days before: Eat specific low fibre diet / "stupid diet".

3 days before: Eat specific low fibre diet / "stupid diet".

2 days before: Eat specific low fibre diet / "stupid diet".

Day before: Don't eat anything.  I was allowed to eat jelly and clear liquids but I didn't read this part properly and hadn't prepared (set) jelly so didn't eat a thing.  At 3pm I had to take 3 yellow tablets and what I call the "science experiment".  This is a video of what it looks like when I made it up.  It looks like it belongs in a laboratory, not in your drinking glass.  I don't know if the video will




At 5pm, I then had to drink 2L of this orangey / citrusy drink (I call it "the stuff"), that forces you to clean out your bowels.  So basically the night before the procedure, you spend on the toilet.  I know people who set up laptops in their bathroom, perched for an (uncomfortable) movie marathon.  I, however, choose to go 15 separate times.  My legs would go numb sitting there for 3 hours straight!  But mainly, I personally didn't find it necessary to stay put.  By the time it's ready to go to sleep, they say your colon should be nice and cleaned out, and I went to bed dreaming of KFC bacon and cheese fillet burgers, chicken and salad sandwiches and roasted sweet potato.  Basically, all of the food.  Because I hadn't eaten any of the food all day.
"The stuff"

Day of procedure: Just to kick start your day of fun, just in case your 15 trips to the toilet didn't clear you enough, you get the pleasure of waking up at (in my case) 3:30am and drinking another 1L of the orangey / citrusy drink / "the stuff".  Just what you feel like at that time of morning, snuggled in bed.  I then got to go to the toilet some more, as much as I could, and that's when I wasn't allowed to intake anything else - no water or anything could pass those lips after the last 1L of "the stuff".  And I'd thought the day before was 'nil by mouth'!  I tried to get another hour or two of sleep, and then I turned up at the hospital at 7:30am.

Now I'm not going to describe what happened at the hospital this day for a few reasons:
  • It was traumatic
  • Explaining it would double this already lengthy post
  • It's too personal to write on the world wide web
  • It didn't go well
  • It's officially been dealt with
In a nutshell, the whole experience was horrible and as a result I've since been
Making "the stuff".  No wonder I hate cooking.
traumatised.  As I said earlier in this post; I would never, ever, choose to use that word lightly, or incorrectly, but I have been.  Everything went wrong from start to finish. 
Remember the #officialcolonoscopyadvicescript that had been repeated to me for a year leading up to this?

"Oh, they're not a big deal.  The prep's the worst.  The procedure itself is nothing.  They might find 2 or 3 polyps, but they'll just remove them, and it's all over."

WELL THEY WERE LYING.  Okay, they weren't lying.  But that was certainly not my experience.  The prep was pretty shit and the not eating caused me to have so much hanger I didn't even know was possible, however it was nothing compared to the procedure itself.  For me, it was opposite - the procedure was worse.

I'm fairly certain that 90% of people reading this have probably had a colonoscopy themselves, and by reading this am thinking that I must be the hugest weakling in the world.  It's not like I had triple bypass surgery, or anything remotely significant!  But the muck up of events that day and my own personal stuff...it's not for this blog.


I don't know what I was worried about re the anaesthetic either.  However I had a twilight, not a general, so basically I was completely knocked out, but didn't wake up groggy and awful like I know people do under general's.
Selfie for Jenna to say it was OVER! #stillhigh?


Waking up in recovery, I heard nurses whispering about me, saying the word "20".  I remember being confused - surely I didn't have 20 polyps?  As everyone under the sun had prepared me for, I was expecting 2 or 3, so maybe they were talking about something else.

Once I was a bit more awake, I asked the nurse how it went, and asked whether I had 20 polyps?  She said that the doctor would speak to me.  I saw my anaesthetist - I asked how it went.  She said that the doctor would speak to me.  Another nurse said that the doctor would speak to me.  I waited patiently, inhaled the hospital sandwiches - my first food in over 24 hours - and waited for the doctor.

The end result was that I didn't get to speak to my doctor, and instead I was read out my results in the most inappropriate manner and situation possible. 

From the little I was told and what I could read on my report:
  • I was diagnosed with something called "Serrated Polyposis Syndrome".
  • They had discovered and surgically removed 32 polyps, with many more (polyps) still left inside of me.
  • I had to come back in 12 weeks for another colonoscopy to remove the rest.
  • My bowel preparation (how clean my colon was for them to view) was only "fair", so I needed to do "extended prep" next time.
PURE EDIBLE GOLD
Other than dealing with the rest of what had happened that morning (the results situation was just a part of it), I spent the rest of the day in a daze.  I had no idea what it all meant.  So much was circling around my head.  I didn't understand any of it.

What the hell was this syndrome?  What did it mean?  The last thing you want to do with medical stuff is to Google it, but that was my professional instruction when I asked what it meant: "look it up on the internet".  I kid you not.  Six words I will never forget. 

I wasn't seeing my GP for 3 days, so I spent 3 days both Googling ---- while at the same time trying not to Google ---- what it all meant.  I didn't really understand.

More than anything, I was devastated that I had to go through this all again in just 3 months.  I was also angry - why did they leave some inside me?  Why not take them all out while I was there?  Why make me go through it again?  The lead up was huge for me and the day ended up being traumatic, and I had to do it again so soon??

Didn't everyone say there'd possibly be 2 or 3 polyps?  What was this 32 business??  Surely that was a mistake.

And what the hell was this extended prep all about?  I didn't like the sound of the word
<3
'extended'...

Up till now I've told the story in a very "Kate style", step by step manner, in order of what occurred.  If I continue in this fashion it'll be the longest post I've ever written, so I'll try and summarise 
from here on in what's happened since.

I went to my GP who printed some information about Serrated Polyposis Syndrome.  It's been quite a journey to find out what it means (if you only knew...) but basically it's a genetic condition that means I have a lot of polyps, and I'm at a higher risk of developing bowel cancer.  (Polyps can turn into cancer which is why they remove them).


Which meant I then had to wait for my results...32 polyps.  32 biopsies.  I remember having my first biopsy a few months earlier, on an unrelated lump on my cheek, and I was so anxious about that - and that was to see if one piece of tissue was cancerous.  Now I was waiting on 32.  It was an anxious wait, but thankfully they all came back as non-malignant.

I went back for colonoscopy #2 which went A LOT better than #1, but because of what happened with the first and other issues, I still found it traumatic.  I also woke up during the procedure (!) but fortunately don't remember anything as they knocked me out immediately again. 

I unfortunately got to learn what 'extended prep' meant, too.  Basically it's the same as I
Extended prep sachets
wrote above; I do the "stupid diet" for the first 3 days, but then the day before 'no food / drinking "the stuff" / attached to the toilet' day; I have to do that for two days instead of one.  It's shit.  Literally.  It means I can't eat for about 50 hours, and I have to do the toilet day twice.  So, what is usually a day procedure for most, for me is now a week long.  I have to take extra time off work - the two 'toilet days' before, then the day of the procedure, and then the day after I have had to have off to recover each time.  Last week I planned ambitiously to be a hero and work the day after, but I couldn't.

Anyway, when I woke up from #2, I did get a chance to finally speak to the doctor.  He said that this time they'd removed 34 polyps, and that there were still some in there, and, like last time, I'd need to come back in 3 and then 6 months to remove the rest.


This time I was even more angry - why did I have to go through this every 12 weeks??  Four colonoscopies in 9 months??  I asked him why, and he said that they had to do it in stages, for time and safety reasons.  I asked him how many were left inside me.  I mean, they'd already removed 66 so surely it must almost be over?  He said he didn't count them but he thought maybe 50-60 were remaining.

I was in so much shock - so I had over 100 polyps??  To skip forward a bit, I ended up having 117.  My grandparents tell me how they love to shock their friends with how many I have, because no-one believes them.  Everyone around their age (87 and 90!) seems to have had at least one through their years, and when Grandma and Grandad said that their
I learnt my lesson after #1 that JELLY IS A MUST.  I can't stomach much though, as it tastes like "the stuff"!
granddaughter had 32, no-one believed them.  And that was just after colonoscopy #1!  Imagine when they got to say 117??  Well, there was no competition!  (They say this in caring jest of course - first and foremost they're worried about me, don't get me wrong.  It's definitely not a competition you want to win!)

I was still so angry that they had to be removed over 4 procedures, but as a smart friend said, imagine if someone had 100 skin cancers on their arm.  They wouldn't be able to remove all 100 in one go - it wouldn't be safe - or probably even possible.  As soon as I heard it said like that, I understood.


There's not a lot of info out there about this syndrome; I understand it's only fairly recently
been 'discovered' - if that's the right medical term.  So no-one's been able to give me a lot of information about it.  I found a Facebook support group but I don't really go in there because it can easily add to the anxiety that I already have.  All I know for certain is that it's genetic, I grow a lot of polyps, I have a higher risk of developing bowel cancer, and I'm under "high risk colon cancer surveillance."

My specialist believes we'll be able to manage the cancer risk by regular colonoscopies - which I'll have to now have for the rest of my life.  


...And I flipped out over having one...

The regularity of how often I'll have to have them depends on how quickly the polyps grow - and up until last week, this is something that we didn't know.  I'd been growing the 117 for any number of years - we had no idea over what time frame those ones grew, and at what rate they currently grow.

So what the plan was, was after the fourth 12 weekly colonoscopy, once all were removed, was to then come back in 6 months, to see how many had grown since I'd had a 'clean slate' - as a figure of speech...

Fortunately and I don't know why but I am so grateful, during colonoscopy #3, my specialist removed all remaining (51) - instead of splitting this over two colonoscopies as originally planned.  It saved me the pain and turmoil of needing an extra one in December, like I was told I would need.

So I had:

March: 32 removed
June: 34 removed
September: 51 removed


All 117 biopsies have come back non-malignant which I don't
even need to explain the relief.  Waiting for the 51 biopsies was particularly difficult.  You have to stay positive and just wait out the results, but I just kept thinking of that 1 cheek biopsy I had - or a couple of moles I've had cut out - and lumps in my breasts etc.. over the years.  Each time I was waiting on 1 result.  I now had that feeling multiplied by 51.  But so far, I've been cancer free.

So when I woke up in September, I had no polyps (well I think there were some forming but none remaining that were able to be surgically removed).  And I was told to come back in March...which was what I had to do last week.  This was the biggie - how quickly do they grow eg. how many would have grown in 6 months?

As much as my specialist believes regular colonoscopies will be enough, very early on he warned me that there's a possibility that I might need my bowel removed or resected.  Basically, if I'm growing too many polyps, too quickly, it's not going to be practical or safe to have continual surgery.  It may come to a point where the safest thing is to remove the bowel all together.  Not having a bowel will mean they can't grow!

So for the last year, I've been trying to get my head around the possibility that I may one day lose my bowel.  It's been a big thing to have at the back of my mind, especially because I thought that this would mean I'd need a colostomy bag.  That was until last month, when in an outpatient appointment I found out that no, if we do end up needing to go down this path, I wouldn't need a bag!  I'd still be able to go to the toilet like normal people!  (Just a lot more often as I'd have no bowel (space) to hold 'stuff').  But no bag!  That was the most positive news and something that would have been a little more comforting to know 11 months earlier, but anyway. :)

Because of what happened at colonoscopy #1, the Nursing Unit Manager (NUM) has gotten involved and is absolutely beautiful.  She investigated everything and is now my go to person.  She supervised colonoscopy #3 for me, even coming into the procedure room.  She just made everything okay.  Unfortunately, because of everything that happened, each procedure traumatises me.  After #2 I even started having flashbacks.  I dealt with #3 so much better because she was there.

"Terri" the NUM (Georgie Parker) on All Saints
I call her my Georgie Parker...or my angel.  The first time I heard of the term "NUM" was on the TV show All Saints; where Georgie Parker played the NUM of Ward 17, Terri...did anyone watch that show?  I grew up watching it and loved it.  Hence why I call her my Georgie Parker.

Ironically, my 4th colonoscopy was booked on 29th March at 7:30am...exactly a year to the date and time of my very first one.

So I went in last week.  This one felt like a big one - the decider - because really, this one essentially (initially, anyway) was going to indicate how often I'll have to have them from now on.  It was going to give me clues as to whether I'll need my bowel removed one day, and it affects so much, for example when I can get pregnant.

The beautiful NUM #mygeorgieparker appeared, and if you watch my Snapchat / IG stories

you might have heard me talking about it.  Right before she appeared I was getting upset.  I didn't know if I was about to cry, have a panic attack or walk out - but I wasn't handling it.  So when she turned up I hugged her so tight and clung onto her - I felt so much more safe as soon as she was there.  Writing this makes me realise I sound like a weirdo; it's just a colonoscopy.  But so much else has gone on, to me it's more than you could imagine.

It went okay, as much as they can, anyway.  My anaesthetist was one of the best I've had.  He pumped what he called "Super Valium" into my cannula before the anaesthetic which helped relax me.  He warned me I may wake up with the oxygen tubes wrapped around my face (nasal cannula) which I'd had before, and I appreciated him giving me a heads up.  

I woke up however with something like a 'plug' up one nostril?  I don't know the medical term and although it wasn't a big deal / obviously needed, it was uncomfortable.  That, and the fact that when I woke up the nurses said I was on a ward, was a bit unsettling.  I was half out of it, touching the thing in my nose and asking "why am I on a ward??  What went wrong?"  But they just meant I was in recovery.  Nothing went wrong.

Because of #mygeorgieparker and a great anaesthetist and a few others, I wasn't as
traumatised as the others, but it still took a few days to completely settle.  Other than my emotional state (!), the big question was of course, was what did they find.

There were 12 polyps.  I still don't know what to think of it.  12 is obviously a lot better than 117!  However those 117 grew in however many years - this is 12 in 6 months.  My specialist seemed pretty happy with them, and said I don't have to come back for 12 months!  Woo!  That was, of course, music to my ears.

I'm a bit nervous that 12 polyps is an indication that I may need my bowel removed in a few years - because that will possibly be around 24 in a year, which I feel is getting closer to the magical unknown number where they might say "enough".

But, as a friend reminded me, in a year I may have 6!  Or 12.  Or 40.  It's not really going to be clear for a while - I guess we can't determine how quickly they grow based on one 6 month period.

This colonoscopy I was craving ciabatta or crunchy bread
I should be getting my biopsy results tomorrow - (and assuming they are all non-malignant!), I just have to sit back and wait for March 2018 to see where things are at then.  Of course in that meantime I intend to continue my quest (action!) of a healthy body and mind, because while this condition is genetic and I can't do anything about it, a healthy lifestyle can only ever be a positive thing.

While the last year has been really difficult, I do feel very blessed and lucky.  (Again, assuming these results are okay), I don't have cancer.  I have two friends currently going through bowel cancer treatment at the moment, and I know that I'm bloody lucky.  Not to mention a dozen or so other friends who've been through other types of cancer over the last little while.  I found out that one friend's been diagnosed with breast cancer literally as I sat here typing this blog post tonight.  So as much as I have struggled with my own stuff, I know how blessed that I am.

The other good thing is that we've found this.  I'm quite young in terms of getting a colonoscopy - if I hadn't had that horrible "blood night" 2 years ago, I probably wouldn't have had one until my 50's or 60's, or whenever they send those bowel tests in the mail that my parents started receiving when they turned 50 (?)  And by then, I don't even want to imagine what could have been.  So we've found it early.

I think the luckiest / strangest part of all of this though, is that apparently the "blood night" was not caused by my polyps or syndrome.  All of my doctors have said this.  I don't know what caused that terrifying experience, but I've been told in no uncertain terms that I can be pretty sure that it's saved my life.  Hearing that the 'warning sign' / what started this all off was coincidental / unrelated is a bit full on to grasp, but I can only thank God that it happened, and be grateful.

I'm still working through the trauma part of it all.  On the inside, I haven't coped with it very
well at all.  Because of the circumstances of the first one and my own issues, the mere process of just keeping an eye on things has caused me distress and trauma.  I'm going to say it again, I choose those words carefully and would never use them lightly.  For me, it's the process that I have so much trouble dealing with.  Obviously waiting for results is hard, and I wonder what the future holds.  Apart from losing it (internally) every 12 weeks (and then 6 months) this past year, I try to think positively.  But if I'm honest, which as you know I always am (!), I have really struggled to cope, and other than my GP, haven't told anyone just how much so.

One good thing is that it's made me not scared about anaesthetic anymore!  Knock me out baby!  Case in point: My anxiety is so high at 'colonoscopy time' that after the first one, I asked both of my GP's separately if there was ANY WAY that they could knock me out for the week leading up to it and the week after.  I was 100% serious and they were probably 100% horrified, but both said a resounding "no" to what I believe would be called a requested induced coma.

It's a bit hard seeing on my reports "high risk colon cancer surveillance" at the top of each report, but hey, being 'surveyed' is a much better place to be than 'having no idea' or being
The last meal is always precious ;)
'treated'.  Underneath I'm still unconsciously preparing myself for what might come, but this is probably better than being smacked in the face all of a sudden one day, with no pre-warning, like other people deal with every day.


So, yeah!  That's one of my stories of late, that I've been wanting to catch you all up on.  As I said, it's not weight related but it's "me" related - and this is just one of those curveballs - and we all have curveballs to contend with.  It has affected my focus on the whole weight loss thing, for sure.  But some things need to be dealt with first.

Now that I've told (sort of) the whole story, I can now speak openly on my Snap stories etc when I'm hangry AF and explain why I haven't eaten for 50 hours.  Fortunately I won't have to do that for another 12 months though, which is so awesome!

I'll let you know what the biopsy results are of the latest 12, but so far I've had good odds: 117 being non-malignant gives a fair bit of hope!

Hopefully I don't sound like a wuss by saying I've struggled to cope with the procedures, but if I do, well, I do.  I know people have them every day and they're not usually big deals, and I wish I could say that mine weren't.  As much as I've been pretty brutally open in this post, there's obviously a whole lot more underneath that makes this complicated and that's added to the distress.  So while everything I've written here is 100% raw and real, just keep in mind that this is just the surface - the 'high level' story, if you like.  (Imagine the length if I'd written the detailed story!)

The past year has been, similarly to the past few, scattered with so many medical things that even I can't keep up.  Every.single.week for over a year I've had anywhere between 1-8 medical appointments.  Sometimes it's 4 a day.  This colonoscopy saga is just one of the causes and over time I might mention other things, but usually I keep it all to myself (and my doctors).  This has been one of my biggest things (ever), but sadly by no means is my only thing; and sometimes it feels all too much.

I'm so sick of waiting rooms, so over scans and machines and waiting for results, too used to the emergency ward, and I recently noticed that I literally have multiple scars on my arm from blood tests - little permanent needle prick hole scars to add to my body's battle scars.

But scars are from battles, which we all have, and all we can do is forge on.  I
continuously put it all in perspective and think of multiple friends who are going through so many different things including many cancers, like my friends little 9 year old girl who has been fighting Leukemia for the past 2 years.  She doesn't know it yet, but she's my little hero.  When I think of them, my issues pale into insignificance.  

As much as my stuff has distressed me, I know that I'm one of the lucky ones.  Everyone's got their hard stuff, and we can only do the best we can do.  Perspective, positivity and acceptance helps so much.  But no matter what your hard is, I also think it's important to let yourself have those moments.  Cry, yell, tell someone, whatever it takes to let it out.  We'd like to think we're made of titanium and that nothing can break our stride, but in the end we're all simply human.

Sending my love out to anyone who's going through anything hard right now. xo