Day 3 of incarceration - i think this place may just kill me.....

Ok all you night nurses, listen up.  For the love of god, can you PLEASE learn to be quiet and let your patients sleep.  Some things I've noticed.....

(a) It is never cool to sneak into a sleeping patients room to reset their alarming radiation machine, only to notice that another nurse is about to come in to check on the alarm also, so you feel the need to yell out "IT'S OK, I'M IN HERE ALREADY!!!!!!!" thereby waking your sleep deprived patient by scaring the shit out of them.

(b) It is not ok to carry on a conversation outside a sleeping patients room about your plans for the weekend.  You can guarentee that having such a conversation WILL wake me, and that makes me cranky.

(c) It is also annoying having nurses yell to each other up and down the corridor at 3am.  I'm just saying.....

So basically, my night was full of interrupted sleep, pain, more pain, and some pain to go with that.  My new problem to add to the mix - gas.  OMG, gas pain is about as bad as the vagina pain. Seriously, it was a close competition between the two.  I would have paid money to be able to fart.  But they are so worried about me not pooping while I'm getting the radiation - they fill me up with drugs to literally stop me from pooping.  So now I have a belly full of gas just rumbling around causing me more pain.  And all I want to do is fart.  Fart long and loud.  Sigh.

Day three was pretty much like the other days - pain, boredom, and crazy nurses.  But apparently that isn't enough for me to deal with, I had to have another curve ball thrown at my face.  Wouldn't you know, around the clock tylenol 3's (panadeine forte) and a few big large doses of morphine actually take a toll on your body, and now I had really nasty nausea to contend with.  Breakfast didn't help.....

A lump of scrambled eggs.  Yum yum.  It didn't matter how I tried to eat it, it tasted like crap.  I gave up and drank my milk instead.

A bit later on, I was talking to one of the nurses, and apparently my face turned green. I have never had nausea like that in my life.  He offered something to help - more drugs - which I declined.  I was sure it would pass quickly, which it did.  Only to come back an hour later with a vengence.  I took the drugs this time, which helped a little.  My family came in to see me, and I had another bought of nausea.  OMG, this nausea was seriously pissing me off now.  And it's not like just a feeling that I *might* throw up, it was a mouthful of overproducing saliva that I had to keep swallowing over and over.  It was totally gross.  My mother suggested just puking already and I'd probably feel a lot better.  I reminded her that I do NOT puke.  Ever.  Honestly - I could count on one hand how many times I have vomited in my life.  I didn't even get morning sickness during pregnancy.  I hate puke so much, I even tell my patients not to puke in front of me (you'll be surprised how many are obliging and hold it in!)  Even my children know not to puke in front of me!  So no, puking it up to feel better is not an option.

Dinner time finally arrived and a kind nurse brought the tray in for me.  I can't remember what it was, but as soon as she lifted the lid, I felt the nausea coming back again.  I asked her to pass me the bin, which confused her, but I was in a panic and couldn't remember what the hell they call a rubbish bin over here (trash can, must remember that...) so I kept yelling "the bin, I need the bin before I throw up everywhere!!"  I'm not sure what part of the message got through to her, but she finally passed the bin, just in time for the most spectacular vomit ever.  I'll have you know, it's no easy feat lying flat, unable to move, not allowed to lift your head more than a 20 degree angle (and even that's pushing your luck) trying to vomit into a rubbish bin.  Next thing you know, the room is full of nurses bumbling around, taking my dinner away, pushing drugs into my IV and resetting my alarming machine that's letting everyone know it was time for the next round of radiation.  And damn it, my mother was right.  I did feel a little bit better after throwing up.  (I now have to use two hands to count how many times I've puked in my life though...)

Only a few more hours of this torture left to go.  This will all be over at 2am.  Bring it on!!  WOOHOO!!

a retraction for my previous post

I have been asked by a certain member of my family to take back a comment I made in my previous post - apparently it sounded like i was painting my parents in a bad light.

Apparently my parents did NOT leave because I was crying, but because my next round of radiation was about to start.

I would like to point out - abandonment is abandonment, regardless of the reason!

(love you mum!)

Day two - going crazy

After surviving my first night from hell, day 2 was off to a promising start.  My nurse for the day was lovely - having a nurse who knows what she's doing and is happy and chatty makes all the difference.  First up - breakfast.  What is it with hospitals and eggs?  Today's egg treat - poached eggs.  Ugh.  I'm not a fan unless it's covered in hollandaise sauce!  And when you're lying flat, food is a challenge, and poached eggs could get rather messy!  Thank god the yolk was cooked through, or I would have been left with egg on my face...and my sheets....and everywhere else you can imagine!

Now one of the biggest challenges for the nurses - any interactions with me had to be carefully coordinated around my radiation schedule.  They basically had 29 minutes to do anything and everything before the alarm starts sounding to warn everyone that the room is about to become radioactive. My nurse offered me a bed bath after my next cycle - I was a bit hesitant after the previous nights disaster, but I agreed.  If nothing else, I wanted to brush my teeth!

Thankfully this bed bath was pure nirvana.  I was scrubbed from head to toe, I was feeling fresh as a daisy.  Best bed bath ever!  The only downside was I had a choice of gowns - one that was so small it choked me and cut off the circulation to my arms.  Or one that was so big, I was basically swimming in it. And for those that know me, I'm not that tiny!  This gown could've fit my entire family in it!  HUGE!  I stupidly chose the bigger gown thinking it would be more comfortable than being choked to death.  And proceeded to spend the rest of the day trying to arrange all the excess fabric so I wasn't flashing everyone!  At one point, I had the cleaner in my room washing my floors, and he spent a lot of time mopping the floor as he chatted to me.  It wasn't until he left that I realised my boob was totally visible through my armhole (the armhole was so big, I could have fit my HEAD in there!). OMG - how embarrassing.....

The one thing that didn't get washed and changed was my special knickers and what lies below.  Apparently only the brachy nurses are allowed to touch that area.  So I had to wait for them to arrive to do all that bit.  They finally arrived a few hours later just as my parents arrived with my lunch (hospital lunch was another disaster - grilled cheese sandwich, cold and rubbery).  So my parents got kicked out to the visitors lounge while the brachy nurses got me all cleaned up down below.  Apparently there had been a bit of bleeding and discharge which had soiled the ties holding the rods in place.  So they needed to be changed as well as my pad and knickers. Yeah, not a problem, do what you must.

Well, I'll save you the play-by-play, but lets just say, getting the ties replaced and re-tied onto the rods is probably THE most uncomfortable thing I have ever been through. Like, we're talking pure torture here!  My nurse came back in as they were finishing and offered me more tylenol 3's.  Now usually, only one tylenol 3 is enough to knock me out for a few days (panadeine forte for my aussie and nz friends)  At this point, I had been taking 2 tablets every 4 - 6 hours for the discomfort I was in from the rods. And I was still functioning!  I said yes, please, bring me what you can, I'm in pain! And pain in the vagina is no laughing matter!  My parents came back in and I lost the plot.  I was in pain, I was frustrated from not being able to move, I was sick of being dependant on everyone for my every need, and now I was crying and I HATE crying.  And I still had 2 more days to get through.  After my parents left (funny how they retreated very quickly after my little breakdown!), my nurse asked if the pain had settled. No, I was in agony.  She said she would get me morphine.  Hmm....now morphine and I are not the best of friends, but hell, I wanted this pain gone.  So I agreed.  She came back with my magic pills.  And how's this for intelligent nurse of the year - I took my pills and THEN i asked her what the dose was! HAHAHAHAHAHA  10mg - a pretty hefty dose for me.  I was either going to sleep the rest of the day away, or I was going to be Chatty Cathy with no filter (see previous entry back in october to see what morphine does to me!)

Dinner arrived - beets??  How much fibre is in beets??  and gravyless meatloaf.  sigh.  

Isn't that the most appealing meal ever?  

The next bit of bad luck - when the brachy nurses were torturing me, sorry, changing my pads etc. they had to unplug my stockings.  I'm not sure what they did, but when they restarted the stockings, it kept alarming.  My day nurse got sick of it alarming and turned them off, and was going to fix them after my next cycle had finished.  But she couldn't get them working either.  So they stayed off while she was trying to figure that out.  Then she left at 3pm and another nurse took over, and she kept trying too.  Finally she decided to just switch machines.  I pointed out that they had been off for a while now.  She checked with her charge nurse and said she couldn't restart them because they had been off for so long.  So now I was without my stockings - and I am high risk for a blood clot because I'm lying down for 4 days.  Oh goody.  

Why they can't restart the stockings - people have been asking.  Well the stockings are designed to massage your legs and keep the circulation moving.  This is meant to decrease the risk of blood pooling and a clot developing.  Because they had been off for a while, there is a slight risk that a blood clot may have formed in that time (unlikely, I was moving my legs around as much as I was allowed, but still....) So if they restarted the stockings, and a blood clot had already formed, the stockings would send that clot out of my legs and to my lungs.  Not a good thing.  So all you nurses out there, and even anyone who may one day be a patient - if your SCD stockings are turned off for more than an hour, do NOT let your nurse restart them!

Oh well, another day down, roll on friday.  Still in pain, but morphine has made me sleepy, so I might actually sleep tonight!

The night from hell - and its only the first night!

Well it was an interesting night.  First up was dinner.  OMG, what a nightmare.  By this stage, I was totally starving.  I had been on a low residue/low fibre diet all weekend (a.k.a the don't eat anything tasty diet), and then clear fluids the day before, and starved from midnight prior to surgery - suffice to say, I was ready to eat something yummy.  Even hospital food would suffice!  So the dinner tray was dumped on my table, and my awesome day nurse helped set me up for dinner.  I lifted the lid off my plate.....and.....hang on....is chicken meant to be grey??  What the hell is this?  I looked at my menu sheet - some kind person had pre-selected my meal - I was to continue on the low residue/low fibre diet (don't want me to poop for the next 58 hours!) So I had a "yummy" dinner of chicken without the gravy (i'm still not sure why I wasn't allowed sauce or gravy with any of my meals), the vegetable selection had been crossed off, and replaced with beans (ummm, hello???  do you know how much fibre is in beans??) and the ultimate insult - the dessert of caramel cake had been crossed off and replaced with pears.  PEARS???  I HATE PEARS!!!!!!  And again - omg, do you know how much fibre is in pears???  You give stewed pears to babies to make them poop!  At least I was intelligent enough to know not to touch the beans or pears.  Oh, and I was given an 'extra' dish for my meal - half a slice of white bread.  Gee, thanks, you're too kind.  Sigh.

My nurse took pity on me and went off to get me some toast instead.  The chicken was dry and tasteless and had the texture of grey rubber.  Not appealing at all.  And the mashed potatoes were lumpy and dry.  You know - I reckon some GRAVY would have made this meal a bit more appetising!

Soon enough it was change of shift, and my awesome day nurse was replaced with the most idiotic nurse to walk the planet.  I'm not sure how she got her registration. Now let me set the scene.....

When you're lying in bed unable to move with very little to do, you clock watch.  By this stage I knew exactly when my radiation was going to start - hell, the machine whirring away when it first starts is a clue that its starting! Then you feel the little tingle as it sends in the radioactive seed, and you know you have 26 minutes before it ends.  I was so bored, I would check the time when it started and know what time to expect it to finish, so let's just say, I knew my times.

So I'm lying there counting down to the finish time.  I hear the machine wind down and turn off, and I glance at the time and think, hey, it finished early.  Then the door opens.  Now, the safety feature for this radiation machine is that the door must be closed for it to work.  If anyone tries to open the door during a radiation session, the machine will turn off first before the door will open.  So now I'm wondering who on earth is opening my door during a session - it has to be something pretty important to stop a cycle part way through.

So in walks this bumbling nurse, all perky and chatty and says "i timed it just right, I have to hurry!" And i'm like huh?  She goes on to say she has 2 minutes before the next cycle starts.  I say no, there was actually 2 minutes LEFT on my cycle, I was in the middle of one.  She said no, it said outside that you have 2 minutes before you start.  And the light was orange, which means its ok to go in.  Ok, so I'm not an oncology nurse, I have never worked in an oncology unit, but even I know enough to know that IF THE LIGHT IT ON IT MEANS DO NOT GO IN!!!!!!  We spent, I kid you not, 5 minutes arguing over whether I was just about finished or just about to start. I kept telling her my machine had been making noises for the past 20 minutes, so I'm pretty sure that meant it was ON.

UGH!!!!!

She finally reset my machine, and closed the door - giggling as she left.  Still not sure what was so funny.  As soon as the door shut, my machine kicked in and gave me my last 2 minutes of radiation.  I felt like calling her back and saying "HUH!  I was RIGHT!  In your face!"  But I'm way more mature than that.......

A little while after, I asked if there were any snacks or something.  Toast for dinner just wasn't cutting it. Idiot nurse tells me no, I'm on a clear fluid diet.  What?  Since when?  I've been eating toast and crackers all afternoon, and they gave me dinner (one that was uneatable), so I'm pretty sure I'm allowed food.  More arguing insued - she went off to check and comes back and says that yes, I'm allowed to eat.  But the snack cart had already been through.  There's a snack cart???  OMG.  I can already tell this is going to be a long night.  It was at that moment my stomach decided to join the conversation and rumbled.  The nurse giggled and left.  I still didn't get a snack.  Shoot me now.

A few hours later, the nurse comes back in and asks if I would like a freshen up. OMG YES!!!!  Yes a thousand times!!  I never realised how gross you can feel just lying in a bed.  So she fills up a bowl with lovely warm water.  She turns my massaging SCD stockings off and takes them off and proceeds to wash my legs for me.  Bliss.  It feels so good.  I'm almost ready to forgive her for not feeding me!  She then washes around the burns on the front of me and puts my new magic burn cream on.  Then she turns me and washes my bum, and more burn cream there.  Then she covers me all back up again, tips the water out and leaves.  Ummm....what about the rest of me??  My arms?  My face?  Brush my teeth maybe?  Worst bed bath ever.

Then I get some good news - she's only on until 11pm, and I'm getting another nurse.  I hope to god this next nurse is a bit nicer!

Day one of incarceration

Monday I checked in for my MRI.  I hate getting an MRI.  It is similar to getting a CT, but takes longer, and is so noisy.  30 minutes of listening to a banging sound like a jackhammer going off.  Not my idea of fun.  Once that was done, I headed to the lab to get my pre-op blood work done, and then it was back home to start my bowel prep.

For anyone who has done a bowel prep, you'll hopefully understand when I say OMG!!  That stuff is nasty!!! And waiting for the effects to kick in knowing it's going to hurt like hell when it works it way through - let's just say it was not a nice day.....

Tuesday I checked in nice and early to the hospital.  Today was the day to get my internal rods placed (under a general anesthetic thank god) and start my 4 day stint as an inpatient getting around the clock internal radiation.  First up, I headed to the surgical day unit to get prepped for surgery.  The nurse assigned to me was brilliant.  He reminded me of the actor John Corbett (think Raising Helen, Northern Exposure...among other things) - he sounded like him, looked like him...  But best yet - he got my IV first pop, no problems, didn't hurt, no bruise.  I love him just for that.  His wife worked in maternity in another hospital, so I offered them both jobs up in Fort Mac if they felt like a change of scenery  :)  Always the manager trying to recruit (seriously - anyone with maternity experience....give me a call!)

Before I knew it, it was time to be transferred to the OR.  I met with my doctor who reported that the MRI officially shows my tumour has shrunk, now measuring 4cm x 2cm x 2c, so pretty much half the size from when I started.  Very good news indeed.  My oncologist was very happy with this news also - as she said, for it to respond so well to treatment before the treatment has even finished is a very good sign.  So, knock on wood, this is all a positive sign.

Next I was wheeled into the operating room, drugs pumped into me, and that familiar woozy feeling hit me, and I was out in la-la land.  Next thing I know, someone is telling me its all over and I can open my eyes.  I struggled to open my eyes, but apparently that was enough of a sign that I was awake, and I was off to CT to check the placement of the internal rods. I don't remember much, I was still drifting in and out of sleep.  But after the CT, it was off for a repeat MRI.  I remember thinking why didn't they do the MRI first so I could've slept through that?  But alas, I was now more awake, and had to suffer through the MRI....again.....

Finally, it was all over and it was time to take me to my special private room.  The beauty of getting internal radiation, you get your own lead lined room!  The downside to getting internal radiation - you are not allowed to move.  So I had to just lie there while other people dragged me across to the bed and got me into position.  Then it was a matter of just lying there waiting for all the radiation gurus to decide on my treatment plan - they look at the scans and decide how much radiation I need to blast the crap out of the tumour and over how long.  So I knew I had a few hours of sitting around, ahem, sorry, lying around, twiddling my thumbs waiting before the show got on the road.

Now one of the first things I noticed lying here not moving - it is very frustrating to have someone come to the door and speak to me.  Because I can't move, not even lift my head, my visual span was very limited.  I could basically only see whatever, or whoever was directly beside me in my line of vision.  So I found it very annoying when someone would stand at the door and ask me something, or introduce themselves or whatever, and I had no idea who was standing there!  

Finally, at 3.23 (I would learn very quickly how important the time was!) my radiation was set to begin.  I was to receive 58 pulses, each pulse lasting 26 minutes.  This freaked me out a little - my brachytherapy nurse had said that most pulses lasted around 15 minutes.  This would mean that I would be alone for 15 minutes getting my radiation, but could have other people in the room for the other 45 minutes.  So to hear that it was going to be 26 minutes, this left only 34 minutes in the hour that people could be in my room!  And that's a lot of radiation! But it had to be done, lets get this started.  So I get all hooked up to the radiation machine, and my lead door is slammed shut, and I'm left all alone to receive dose one of my brachytherapy.  It didn't hurt, but I could 'feel' the radiation pulsing in and out, which felt kinda creepy.  One down, 57 more to go....this is going to be a breeze!

Ringing the bell, and the ball finally drops

Wednesday 8th of January marked the final day of outpatient treatment. My last radiation session! One thing the radiation department has to mark this momentous occasion is a bell that everyone is invited to ring to say "hey! I've finished!!"

When I first started my radiation treatments, I would see people ring the bell, and anyone near by would clap for them. My initial reaction to this was ummmm, yeah...am so not going to be doing that. I hate being the centre of attention and I don't like making a public spectacle of myself. And really, I didn't care about 'celebrating' anything. I just wanted to get this all over and done with. 

Then as the days and weeks passed, I watched more and more people ring that stupid bell. I'm not sure what changed, but I found myself focusing on the day I would get to ring that bell too. I had a goal, and I wanted my turn! So finally the day had arrived, my final radiation zap. I can't believe that only a few short weeks ago I was at the beginning of this journey, not knowing what to expect, and now I was suddenly at the "end". So like all the previous radiation sessions, I got on the table, got positioned, got my 4 blasts, and I WAS DONE!!!! I practically jumped off the table, thanked my radiation team for being so awesome, then legged it to the waiting area and rang that bell! 

It was an AWESOME feeling! I was done. I got changed for the last time and headed off with my parents and brother to celebrate over lunch. I'm almost at the end of this journey - just a short stint as an inpatient to get through now!

However, as they say - what goes up must come down.  So while I was feeling on top of the world for finishing my outpatient treatment plan, the ball I had been waiting to drop finally caught up with me.  Here I was, on my last day of treatment, and NOW I start to feel the effects of the radiation.  I was now the proud owner of not one, not two, but FOUR radiation burns.  This was the one side effect I thought for sure I was going to get right from the start.  I have very sensitive skin, I get sunburnt just thinking about being in the sun, so I was sure the radiation would cause skin problems pretty quickly.  So I really wasn't prepared for the idea of getting burns on my LAST DAY of treatment!!!  

Three of the burns weren't too bad - just itchy patches of skin at the top of my thighs near my belly.  I could live with those.  But that fourth burn, OMG, that was the worst burn of all.  (I've since found out it was actually two separate burns, but the effect was still felt the same!)  This burn was right over my bum hole.  Sorry, there isn't any way to be lady-like and polite about it.  It was a nasty evil burn, it had broken down and was bleeding, and it hurt.  It hurt to sit, it hurt to pee, it hurt to poop, it hurt to fart.  I couldn't do a thing in the bathroom without it bringing tears to my eyes.  Worse yet, I had to take a bowel prep (nasty drink that cleans every last drop of poop out of your bowels - basically gives you the runs) to prepare for my internal radiation.  How the hell was I going to survive *that* when I can't even fart without being in total agony????  This was not a burn I would wish upon anyone.

Foolishly, I was too embarrassed to call the cancer hotline number that had been given to me (for just such occassions), and being a typical nurse, I diagnosed myself figuring it was probably a burn, and the bleeding might be from a hemmoirroid (not that I'd even had one before, but they bleed right?) So instead of doing the 'sensible' thing and ringing the people who would know best, I went to the drug store and filled up with a pile of hemmoirroid cream, soothing bum wipes, my xylocaine gel (my new best friend), as well as the dreaded bowel prep (welcome to canada where you have to buy your own bowel prep for the bargain price of $25!).  $100 later (I figured my bum was worth it) I was off home to find some relief.

Let me say - xylocaine gel is bloody awesome on a sore butt.  Still can't poop without crying, but at least I can sit in comfort again!

Counting down the days until this nightmare is over, my bum is back to normal, and my life is back on track.

Heading into the final week

It's funny.  Before all of this started, I had a very limited understanding of cancer, chemo, radiation....everything was like a foreign language. The way people would rattle off terminology, drug names, code names - it was all very confusing.  Especially when people expected that I knew what they were saying simply because I was a nurse.

Being told I would need countless rounds of radiation and to have chemo simultanously was daunting. I have watched enough TV programs (and we all know Hollywood never gets it wrong!) to know that people with cancer get sick.  Real sick.  I was going to lose my hair, get that bloated puffy cancer look, be too weak to move, need tons of drugs, blah blah blah......  I think everyone was expecting that I was going to be 'sick' - my entire family rallied together to be with me and help me through this, for which I am extremely grateful, and don't know how I can ever thank them enough for putting their lives on hold and supporting me through everything.

So I have been living each day of treatment basically waiting for the ball to drop.  Yes, I've had a few symptoms here and there, but nothing extreme like I was led to believe, and nothing that I can't cope with.  I've been doing everything I've been told - eating what they tell me, taking the drugs that they tell me to, if they tell me to do it, I'll do it.  And now here I am, heading into the final week, and STILL waiting for it all to turn to crap and all these symptoms to show up (and trying really really hard not to relax and get cocky thinking this cancer stuff is really easy!)

Now the usual routine after chemo - they load me with steriods on the day, and I take a magic anti-puking pill that night, and then take steriods for 3 more days to keep the nausea at bay.  And it works a treat.  I've had no issues with nausea at all.  Thank god - anyone who knows me well will know how much I can't stand vomit (I even tell my patients to not vomit near me, for which quite a few are very obliging!).  This final round of chemo however - it was not going to let me take it unnoticed.  For the first time, I had nausea in a bad way.  Bad enough I had to crack open the "just in case, but you probably won't need them" supply of anti-puking pills.  Plus I had headaches, reflux, and just felt like crap.  Now ok, in the big scheme of things, I know....suck it up sunshine, people have it way worse.  But it annoyed me that I managed to make it so far, and NOW I was getting all the symptoms?  Ugh.

Friday marked my review with the oncologist.  She acknowledged that I was breezing through all of the treatment, and that yes, I was pretty lucky to have so few side effects.  The only concern she had was my magnesium levels being so low, and whether I should start taking a supplement to help correct it.  Great, more drugs. But the kicker - the magnesium supplement would most likely give me diarrhoea, one side effect I have managed to avoid so far.  Now the real dilemma for me - if I start taking the supplement now, I'll have diarrhoea, which they then need to stop for when I get the internal radiation because they don't want me pooping while I'm connected to the radiation. So I'm not sure whether to start it now or wait until after the internal radiation is done. Besides, the magnesium levels will take months to correct anyway!

The oncologist also did a quick exam to see how the tumour is "looking".  On the PV exam, she could feel that the tumour had definitely shrunk, and she estimated it to be half the size. She tried to do a rectal exam to feel the tumour from that angle, as it was difficult to feel the back of it around my cervix due to how it was positioned. However, this is when we discovered another little side effect of the radiation. My bum hole has shrunk! (sorry if this is more than you needed to know - but I did promise to share everything!) no wonder I've had issues going to the bathroom. She couldn't even insert her tiny little Asian finger. My bum is tighter than....how does that saying go? I can't remember. But suffice to say, the tumour is responding well to treatment. The oncologist was very happy with this - as she said, I haven't even finished the treatment yet and it's already half the size. This is very promising. But this will all get confirmed when I have my MRI prior to starting my internal radiation. 

3 more zaps to go now. Very excited that the end is in sight!