Trust me I know what I'm doing....

Famous last words, followed by.. hmm what could possibly go wrong?

Trust is a funny thing, you either trust something (or someone) or you don't. For me there is very little middle ground... its either one or the other. I have to admit the concept of having trust in my body is not something I had ever really thought about until it started letting me down... I trusted it to be healthy and it let me down by getting cancer.

It seems a silly thing to come out with, but that's how I feel. Until recently I had limited trust in my body, I feel that it really let me down. How do I start trusting something that I feel really let me down???

Drum roll please.......
 you guessed it.... I rode my bike... a lot, and I pushed myself.

Rewind 12 months..... on November the 5th 2014 I had my first surgery - to remove my tumour and to 'technically' make me cancer free... yep, its been 12 months - shit doesn't time fly when your having fun!

I must have been out of surgery and recovering in my 'suite' at the hotel Hutt when I had a couple of visitors one day....  I'm going to blame the outcome of the conversation on the large quantity of drugs I was on. These two friends placed some faith in me, they believed I could do something pretty "big" for the condition I was in at the time and for what I was going to go through in the 6 odd months after. They entered me in a bike race, to take place pretty much 12 months to that day. I agreed. I have to confess, I actually didn't think I would make it. I had no trust in my body and its ability to do this.
So fast forward to last weekend, guess what I did.... I rode that race, it may have only been 25km (including the hill of awesomeness, that I had 'smashed' recently), but I did it. I may not have been fast.... I even had a support rider... my coach, one of the friends who had more trust and belief in me than I did.

My next 'test' was 5 days ago... I rode my Mountain bike in my first 6 hour race since I had been diagnosed (this consists of a set circuit of trails to ride, over and over again until the 6 hours is up, the winner is the person with the most laps over the 6 hours). No team for me, I decided to suck it up and push, so I did it solo... that's right me, myself and I.
I set myself a goal (6 laps), and I beat it (I did 8). Its funny, I came 11th out of 11 solo riders, usually I'd feel a bit shit about being the last (yes, I know someone has to be last.. blah blah  blah), but you know this time, I didn't care, in my eyes I won. I won my battle with trust, its slowly getting earned back.. my body may have taken a bit of a beating, but nothing bad happened, and I beat my goal.
It hurt, both physically and mentally, but compared to cancer and chemo, it was nothing. Knowing that my body was able to do it was a biggie for me.

  

 

Does my bum look big in this?

Trust... I don't have full trust in my body, but slowly (just like my riding speed), I'm pushing the boundaries and seeing what happens.



"Strength doesn't come from what you can do. It comes from overcoming the things you thought you couldn't"

RAG x x x

Always listen to your Mum

Its been over a month since I last posted.... I actually feel like I'm in a confessional.

My lack of posting hasn't been for not wanting to, in fact I have drafted several posts, all of which have never made it as far as me pushing the "publish" button for one reason or another.

A lot has happened since my last post, there have been a family holiday; profound moments such as riding alone in a forest during a storm; my first MRI since finishing treatment; my birthday... and the list can go on.
Whilst I could start writing about any of the things I have mentioned, todays post is about this blog, and how it began.

When I was first diagnosed one of the hardest things I had to do was tell my Mum; coming from a family which consisted  of just her and me, this was a biggie, I wasn't the youngest child or the oldest child in the family, I was the only.
Somehow during either my first phone call to her (yes I had to tell her over the phone, we live in different parts of the country) or the second... she said she thought I should get a diary and write. I cant recall her exact words (I don't actually remember a lot of details relating to any conversations around that time!), but she was adamant that one day I might want to go back to my diary and either write a book, or use the content to help others.
Well, I have to confess, I did buy a book.... I never really wrote in it. I decided that I would start this blog. Initially it was a way for me to get what was in my head out so that I wasn't brewing stuff I shouldn't have been, plus it was a good way of keeping people updated with what was going on, I was a little over telling people every detail on a regular basis.

Fast-forward to this last week, I was telling my Mum that my blog has been featured on the Bowel Cancer NZ facebook page, and that I had gotten some really awesome feedback about my blog and a few emails from people either starting their cancer journey or currently going through it that had stated they found it helpful and insightful.... my mothers response to hearing this.... in a very proud voice "I can say it now, didn't think it would happen this early, but I told you so" .
Four words no one ever wants to hear from a parent (correction, anything relating to your parents sex life rates as a list topper!), "I told you so", and what's worse, she was right. As weird as I feel sometimes about people reading my blog, and these words right now, I am really glad that what I write might be useful to someone.

So on that note, thank you for reading and following... I have lots in my head still to come out, so keep reading, and watch this space... I'll even start posting more photos (just to keep things interesting!).


Until next time
Thank you

RAG x x x

Suck it up sunshine

Ok, so its been a few weeks since my last post. opps.

What have I been up too…. Bikes and hills would be the simple answer.

The last few weeks have been about me looking what I can do without overloading the fatigue see-saw. There is a fine line between balance and the wheels falling off… I’m still learning but am getting a lot better at looking after myself.

Before I was diagnosed I can now reflect that I was a bit of a whimp when it came to pushing myself at times… mind you at the time I wouldn’t have said that. But there are little things I think back on and I am now challenging myself on them (what’s the worst thing that could happen???).

One big thing was around riding hills, something I used to try and avoid unless I really had to do it. I’m now making this a mission to challenge, and push through this previously self-imposed barrier of “this is too hard”. What the last 13 odd months has taught me is that there are harder things in life I have had to deal with and challenge myself with, all of which I have done, and survived. So I can do this.

Whilst I’ve generally been a pretty motivated and positive person previously, my outlook has changed and I feel stronger and more confident in my abilities (If I can do chemo, radio, surgery and Cancer I can do anything I put my mind to).

So with all this in tow, I have been trying to ride a varying assortment of hills to push this, and I have successfully completed all the challenges I have set for myself, it has been tough, but as I keep chanting various mantras whilst slogging up the hills (I may add very slowly is my top speed!)… “Suck it up sunshine”, “this is not as tough as treatment” and “I will not let cancer win”, (and a few others with some quite "choice" words that I cant say as my Mother is reading this)  I can now tick off some hills I would have either avoided or complained loudly about previously. I am proud of myself and my body for doing this (learning to trust my body is something I am still working on, but its holding together well…. And this is a story for another day).

To do this I have to say I have had some amazing support from my pretty cool group of friends and super amazing partner (Sorry this is about as sappy as I get) and family. They have come riding with me, kept me company, ridden repeats up hills whilst I keep slogging along to get up just once, they have challenged me and looked after me. I am more than grateful for this.

 I leave this post with some photos of my latest adventures

There was sleet, rain and mud... and I made it to the top for the first time in over a year

 

 

 

At the top of Wainui looking over Wellington!

Weeeeeeeee... looks like I'm jumping over a large bottle cap!  

Cyclocross bike fun on new single track.

 

 

 

At the top of Blue Mountains Road... made it to the top.... this is what I used to call the "Mountain of stupidity" which I finally rode and made it the "hill of awesomeness"  

 

Thank you for reading again, stay tuned for more adventures and potential madness and mayhem.

 

Stay strong and true to yourself

RAG x

You can stick your membership card and renewal form

Clubs… pretty much everyone has been a part of a club at some stage in their life, whether it’s a cycle, rugby, book or shoppers club, the choice to join or leave the club is generally free and at your own discretion.
I personally have a fair few membership cards, my wallet is overflowing with coffee club, VIP shoppers cards. One club I didn’t sign up for was the cancer club.

This club is one you really don’t want to voluntary sign up for, its generally free, the merchandise sucks and they don’t hold great Christmas parties…. Ohhh and the only free coffees you get generally come with a side dose of Chemo….. It’s a pretty shit club.

Sadly 1 in 3 people in New Zealand have some association with this club.  It’s a club that once you have joined (like it or not), that you will forever have some link to it whether you like it or not.
This week is daffodil week (Friday is Daffodil day), a week that is the annual fundraiser for the NZ cancer society. For me this week means acknowledgement, not just of a particular cancer but acknowledgement about cancer itself, how it affects everyone - and not just the person with the cancer. It’s about families and friends, they too are forced to be part of the cancer club as well.
This last two weeks has also marked the start of my journey of post cancer scanning and checking, I’ve had my bloods done and my markers are still showing that I’m in normal  levels (yes, people I have a piece of paper to say I’m actually “normal”!... I know I’m confused, and slightly amused as well!!) – they have dropped to 0.7 from the 1.0 they were a few months ago… I’m quite happy with the dropping of numbers – that’s a good thing!

Being part of the cancer club means that even though I’ve finished my treatment and no longer have cancer, I still need to be regularly checked, for the next 3 years I will have scans, tests, exams and bloods done every 6 months,  then after 3 years I go to yearly checks for the next 3 years.  So even though it’s gone physically, I’m reminded constantly that it can come back (although my odds are pretty good that it won’t), it’s kind of like a ghost dog (this will be another post for another day)… lurking in the darkness….  I’ve done my dog training, I’m pretty good at it, so it should beware if it thinks about stepping over the line.

I’ve decided that whilst I don’t have a choice regrading being part of this club, I will still express my displeasure at being part of it… “cancer club” …. you can stick your membership card and renewal form!

 So please support Daffodil day, buy a  daffodil, dress in yellow, paint your nails yellow .... show your support for someone in the cancer club.

 

Thank you ......

RAG x x x

Mud, sweat and "sucking it up"

I rode my Mountain bike on 'real' Mountain bike tracks for the first time in a year.... hairy, muddy, wet tracks, in the rain in 2 degrees (oh and there was a bit of snow)... and I LOVED IT!

I know this sounds a little mad, but shit it felt good. Felt the best I have been on a bike in so long (Including pre diagnosis!). It was also good for my head space, something that I need to work (that's another post).

I'm paying for it a bit today (I'm tired and feeling sick), but was so worth it! It was hard and a little scary (I was worried I wouldn't be able to do it), but I sucked it up and did it.


Now I've done it, I'm a lot more confident and will do it again.... what I learnt.... suck it up sunshine, do it and don't talk yourself out of it.

until next time, sorry I'll add photos later ( a few technical issues with my brain tonight),

RAG x

12 months

This week marks 12 months exactly since I was diagnosed and when I started this journey… a year…. Shit!

What a year….

 

  I think a fitting way to describe this (and showing by British roots) would be to quote our dear Queenie….. “annus horribilis”  a pretty good summary I think!

Its been a year of many things, ups and downs, positives and negatives…. A year of learning, reflecting, planning and accepting. When I think back on it I have learned a lot this year, I’ve learnt what matters, what I’m capable of doing, who my friends are, and what’s important in my life.  

Well, it’s been a 12 months that I can tick off my ‘to do list” never to be repeated again….. been there, done that, moving on (I still didn’t get a bloody t-shirt!)…. The dog has been walked, tamed, taught who’s boss and is sitting nicely behaving itself in a yard far away from me, where it will stay!  I’m grateful that I have been lucky enough to get to where I am now, yep I’m scared, battered and a bit beaten at times but I’ve finished this part of my journey, there is a happy ending. A happy ending that 12 months ago seemed impossible and so far away. It hasn’t been easy (nothing about cancer is easy… except for my hate for it)  and there has been a lot of pure luck involved which I am very grateful for.

Whilst I started  this blog to record my journey, and to hopefully help others in the same boat, I feel it is far from over, just because I have finished this chapter, its not the end of the book. I have a long road ahead of me…. Recovery and finding a ‘new normal’ being my next challenge…… yes those people who know me well will be sniggering at me referring to myself as normal.

For the past 12 months I have been following a plan to kick this cancers butt….. with that plan finishing I need another….  As I said in my last post….. its on like Donkey Kong

 

Keep watching this space…

 

RAG x

Plan C

Yet again I have been slack with providing updates to this blog.

It’s been a difficult few weeks with side effects messing with both my body and mind, coupled with me being rather pig headed and beating myself up for having to finish IV chemo early… yes, I need to let it go (hmmmm anyone who’s familiar with my house hold will now be humming the Frozen song “let it go”).

Well anyway, me beating myself up over the whole IV Chemo thing was taken out of my hands last week when I saw my oncologist….. I have now had all my Chemo stopped, as my oncologist (well her offside, she was on holiday) stated on the day… “you’ve smashed the cancer” … apparently I have done more than enough chemo to kill anything that may have been lurking and I’m “done”, “finished” “fuck you cancer, I’ve won”.

After a year (yep, it will be a year next week since this journey began), being told it’s over feels odd… I’ve pretty much spent every minute of every day for the last year doing what I could to fight this thing and now it’s done… to be honest it’s a little mentally exhausting realising its over.

Please don’t get me wrong, I’m pretty stoked about not needing anymore chemo or treatment, its just a bit weird to get my head around. 

In a nut shell my CEA (Carcinoembryonic antigen) levels have gone from 19 when I was initially diagnosed (pre treatment), down to 1 (anything under 3.5 is classed as ‘normal’). * CEA  measurement is mainly used as a tumor marker to monitor colorectal carcinoma treatment, to identify recurrences after surgical resection, for staging or to localize cancer spread through measurement of biological fluids.

So now my next step is to get healthy again, the chemo has taken its toll with the nerves in my feet, and it generally wears down your liver and kidney function, not to mention your general fitness gets a hammering… so from here it’s all about finding a new normal, and a new beginning…. Plan C – being cancer free!  

so bring it on like donkey kong and lets start getting Plan C in motion.....

RAG x

Yay for showering without a PICC!

So it’s been a while since my last post,  I guess I’d be lying if I said I wasn’t finding things hard going at the moment. I’m getting rather toxic with all the drugs that are getting pumped into me, and as a side effect its causing my feet to have nerve damage, it makes me feel yuck and as embarrassed as I feel saying this, the drugs cause me to get anxious at times (I guess you can’t be bullet proof 100% of the time). Cancer and cancer drugs suck.

Anyway this has been a pretty full on week, I raced my bike for the first time in about 10 months, I set myself a goal of just getting to the start line and getting one lap completed (it was a cyclocross race that involves racing multi laps….. check out the video of last years final http://spokemagazine.com/2015/05/06/huttcross-set-to-kick-off-for-2015/

I can be seen dressed as Evel Knievel (along with my family)… not a bad effort for someone who was doing both radiotherapy and chemo at the time). Anyway back to this race… I completed my goal, and then did 2 laps, and continued on to complete 3 laps in total and finish the whole race 40 something minutes later!

 

I was well chuffed, especially since I still had my PICC line in.  I do have to confess I did pay for it later as I was pretty shattered for a couple of days, but hey, it was more than worth it. Being back on my bike made me feel so normal…. I’ve missed that feeling.

This week was also my scheduled IV chemo week, I turned up at the hospital as usual on Tuesday, and met with my oncologist. Due to me being really toxic and having nerve issues with my feet (this is caused by the IV drug, and can be permanent if not monitored carefully) along with it making me generally feeing yuck, it was decided that my oncologist would stop my IV treatments effective there and then (I only had 2 left so have had a fair load of toxic drugs pumped into me). I’m still taking the oral Chemo and they will reassess this in 3 weeks time. So with no IV drugs to be done, out came my PICC line…. YAY!!!!! I’ve since had several showers and now feel like my arm is actually clean (you can’t get your PICC line wet).

I guess I have mixed feeling about stopping the IV treatment, part of me is relieved as I was worried my nerve pain would get worse, but there is a part of me that feels disappointed that I didn’t complete the whole 7 rounds… as you may have guessed throughout this blog… I don’t like giving in to this bloody cancer stuff, and I don’t like the idea of quitting anything. As I have had it explained to me, it was stopped as my body couldn’t take any more of the toxic stuff… I was getting near maximal capacity to hold anymore in, and the Doctors were not prepared to push this limit. To me  I still feel a bit disappointed that my body wouldn’t take any more… but I guess I still have to realise I have boundaries that need to be listened to so I don’t pop….. I can be a slow learner at times!

So that’s it for me for this entry… some ups and downs, focusing on the ups makes up for the downs I guess. So on that note… roll on the next cyclocross race….. a week and a bit to go…… watch this space.

 

Until next time,  take care, and  enjoy the little things….

RAG x x x x  

Four down, 3 to go!

Tomorrow is Chemo stay... the start of my 5th round of chemo, this means that after tomorrow I will only have 2 more rounds to go!!!!

Its weird to think that its nearly been a year since I was diagnosed.... in some ways its gone fast, but in others it just seems like its never ending.

Finishing Chemo/ treatment and beginning to have a normal life again seems like a weird concept.... something I'm really looking forward to!

Bring on "normal" - whatever that may look like.....


RAG x

This little piggy lost his modeling contract

Well my audition as an international foot model has now been ruined… I'm gutted as it could have been my chance to hit the big time …thanks Chemo my little piggies are missing out on fame and fortune!

So I’m back to having feet issues due to the side effects of the chemo drugs…. Thankfully this time we have gotten on top of it before it starts to cause me pain walking like last time. This time I only have red soles of my feet, some nerve damage and peeling skin. This however has meant  that this week I have had to stop taking my at home chemo pills to help ease the redness and nerve damage… thankfully its working.

Apparently I’m on quite a high dose of chemo so the stopping for a couple of days isn’t going to make any difference (except make things more pleasant). It also sounds like they are going to reduce the overall IV dosage at the next round as well which will help decrease the side effects I get during zombie chemo week.

This incidentally leads me onto the cool news…. I only have 3 more round to go!!!!  I am now over half way!!!!! Something I’m so stoked to be at… Im nearly done!
Its been a funny couple of weeks since my last post, nothing exciting happening, just adapting to life with tubing sticking out of your arm….. but its helped so much with not having pain when I get the IV chemo.

Here are my top 5 things I’ve learnt about getting a PICC line…… (in on particular order)

1.      Trying to hook the PICC line up to a can of V or other such drink (i.e coffee) is pretty much impossible L

2.      Not being able to get the PICC line site wet is a pain in the arse…. I was feeling dirty after day 1… there will be a 4 hour shower the day I can finally get in the shower without it!!!

3.      Not being able to get the line wet opens you up to many dilemmas…. How do you effectively wrap it being my biggest….. being in my right arm it means I’m totally unco, so until recently I needed my loving other half to wrap me up in gladwrap!

4.      Under no circumstances should duct tape ever be used to secure a plastic bread bag onto your arm…. It sounds like a great idea, untiil you have to try and remove it… yet again, at the mercy of my loving other half and a pair of scissors!!!

5.      When trying to explain what a PICC line is to a pharmacy assistant (when looking for appropriate waterproof arm covers, and having her point out that “you don’t have a cast on”) don’t use the description of “its where my IV drugs get hooked up to so I don’t have to have needles all the time” as apparently you look like a professional meth head!!!! Should have elaborated more I guess! I was in the Hutt!

On that note…. Me and my tubes are going to head for the night,

Stay tuned…….

RAG x x x

PICC me!

Tomorrow I get a PICC line put in…… I’d be lying if I said I wasn’t a tad nervous…… so I have to keep reminding myself that it’s a common procedure.

A PICC line (Peripherally Inserted Central Catheter) is a form of intravenous access that can be used for a prolonged period of time (basically that means that it gets inserted into my arm and can stay there for the rest of my treatment).

In layman’s terms: I’m getting a tube inserted into my arm (a big vein) so that they can give me my Chemo IV drugs directly through that (and into a larger volume of blood by the heart) rather than having to repeatedly put a cannula in a vein each time. It also means they can take blood from it so I don’t have to keep getting stabbed with needles and having reactions to the sticking tape they put over after the test (hmmm not sure what I was more upset about last time… the layer of skin that came off my arm onto the tape or the fact the layer of skin was very close to my tattoo …. Hey I don’t want my ink ruined by some stupid take… priorities  people!!)

The main reason why I’m getting one is that currently the drug that’s being given to me  via the IV is ‘burning’ my veins, which is causing unwanted (not that anyone actually wants pain) pain in my hand/ wrist and arm.  It is also hoped that by putting the drug through a bigger vein and into a larger volume of blood I may not get so many direct side effects.

So  guess I’ve filled you in with as much info as I know at this stage…. I’ll update this when I get the chance…. Hmmm since I will have a direct line in, I wonder if I can hook it up to a drink of choice… coffee/ coke/ icecream soda (my vice at the moment)/ chai tea via IV… hmmmm I’m going to have to work on this…..

Right.. until next time, I had better go... its date night tonight.... I had better go and  start making myself look respectable.... or I could just procrastinate in the sun with the cat for another hour or so...... mmmmmm choices...

Until next time,
Don't do anything I wouldn't do.... then again don't do anything I would....

RAG x x x x

Check out the size of those……

One of the many things cancer has taught me is that nothing is ever actually what it seems, I mean there are a lot of ‘perfectly healthy/ normal’ looking people wandering around that are actually really sick (they may or may not actually know this) and that sometimes people may be complaining and moaning about the most simplest things because there is actually something else going on for them….  Of the many things cancer makes you, the two that stand out best for me are; being a great actor and a great purveyor of not putting up with other people’s bullshit (firstly we have enough of our own to deal with and secondly… seriously who has time for drama).

Today’s post comes from something I’m totally guilty of doing (so this isn’t a point the waggy finger at anyone/ aimed at anyone directly post).

“wow you look so good”, “you’re looking really well”, “OMG you look fantastic”  aghhhhhhhh! Yep I might look “great” from the outside some days – but am seriously trying really hard not to puke (or do worse) on your shoes/ in your rubbish bin/ handbag/ generally anything within arms reach… you have been warned!, and some days I look and feel great so its ok, and then there are “those days” yep, I have no illusions I look and feel like shit…… but somehow people seem to think I look great….. I guess it’s because I still have hair, I don’t look like I’m dying (isn’t that the look most people on chemo have when you see them on TV/ movies etc), and I’m not a skeleton (mind you I would happily trade a few kgs if I could …. Don’t tell my Oncologist!!).

So why does this annoy me…. Aren’t we taught to accept compliments? Compliments are good aren’t they???
Well I guess for me, it makes me feel a bit of a fake, and it makes it hard for me to tell people that I’m not Ok all the time.  Fake it till you make it eh….. some times this is what gets me out of bed…. I feel sometimes I’m constantly faking it… seriously I really should get a job on shorty street.

As I said I’m guilty of doing this all the time also, you know some ones sick or been sick, what’s the first thing out of my mouth, “you’re looking really good” *smack hand into forehead, I’ve done it myself!

I guess you can compare it to seeing a heavily pregnant woman you know, the first things out of your mouth, just generally seem to be a verbal  outburst of (in a complimentary kind of way)….. “wow, your Boobs have gotten massive” or “you’re growing well”, “you can hardly tell you’re pregnant, until you stand sideways”, I seriously really don’t know how the hormones racing through their bodies can actually stop them from punching you in the face!  I hereby formally apologise to all my friends whom over their pregnancies have heard me say one or possibly all of above comments! (*please don’t punch my pretty face!)

Its human nature to make comment (in our heads it’s a way of making others feel better, and ourselves if we really don’t know how to react), and to be positive. Last year I found a really good article, it sums this post up pretty well I think.

http://www.stuff.co.nz/national/health/10415859/Never-treat-a-patient-as-if-they-are-dying

So as I end this post, my final words are the following, I’m Ok with you saying I look good etc, but please, in all seriousness… If I’m looking like shit (and to be honest I do quite often), please tell me… I promise not to punch you in the face!

Until next time,
Take care and look fantastic

RAG x x x x

Chasing the yellow vest

Well, since my last update I have now achieved a few firsts…. My first repeat iv infusion (2 down, about 5 to go), first ED admission (don’t panic), first time questioning “do I really want to continue with the iv treatment”,  first bike ride, first time being able to stand in the mirror and both pull in my abdominals and hold them in for ohhhhh about 10 seconds! (It’s a start!).

So as I have said a few firsts over the past few weeks. Yep, I realise I’m not blogging as often as I used to, well that’s pretty much due to me being on a bit of a cycle…. The week I have iv is a week which I’m pretty much out cold, Chemo is on a Tuesday morning, and it’s pretty much not until the Sunday when I’m starting to feel a bit more human, between the Tuesday and Sunday my life consists of sleeping, sleeping and pretending not to sleep when I’m sitting upright (I fail at that one). IV chemo is harsh, to be honest, it’s a lot harder than I thought it would be. I pretty much start having side effects before I leave the hospital (my hands ‘claw” up, I’m extremely cold sensitive, my speech is slurred as my throat ‘closes up’ due to the changes in room/ air temperature, and my legs seem to have a mind of their own  - one leg tried to go in one direction, the other in the opposite).. I really look like a failed poster child of chemo promotion, I do feel sorry for all the people that watch me walk to the car, I must look like quite a sad sight….. I think next time I’ll take a balloon and stick it under my top at the back and start hunching over saying “the bells, the bells”.

The 2 weeks following my chemo are great, I feel and look human (I do have a few side effects but nothing that stops me from doing stuff), it does mean that I try and make the most of those two week which does mean that I sometimes forget to sit down and write (sorry).

Anyway back to my list of firsts. After the reaction I had after round 2 I have to confess it has left me wondering every now then if it’s all worth it (I reacted badly and ended up in the ED department on the Friday morning sue to the side effects, interestingly I discovered that my neutropenic fever card does work as a queue jumper at the hospital – sorry for all those people that had been waiting)… heaps of what ifs popping into my over active mind, and cunning plans about checking myself into hospital and just saying give it all to me at once, get it over and done with, so I can finish this chapter of my life and move on. The couple of days after the infusion were pretty tough and it did put me off the prospects of Rounds 3, 4, 5 , 6 , and 7. Saying all this, I must add I’m not giving up…. When the rational side of me thinks about it, it’s only 5 more round, that’s about 3.5 months to go…. Easy peasy, bring it on. Everyone has good day and bad days – its normal, my bad days are usually connected to feeling like shit (another thing I can’t really control)….. ding ding ding, here comes the pity train.  So in a little over a weeks time, I will start again, put my big girl panties on, and rock up to the oncology out patients, roll up my sleeve and suck it up…… if I was to back out of it Cancer would control yet another aspect of my life, my infusions are my way of say “fuck you cancer”  and kill it with fire.

I rode my bike!…. A bit of a learning curve…. Must remember I haven’t actually ridden for nearly 6 months, so I really should have started my ride a little more gentler than what I did (cranking along at a pace I would have used to have ridden at was a bit of a fail come 2 km down the road when the wall smacked me in the face!)… Lesson learnt!… so I continued my ride (well by this stage it was more like a crawl) at a more leisurely pace…. Until I spotted an older lady on the river trail, wearing a fluro yellow vest (don’t get me started on yellow vests!) riding a curiser bike…. Now a little voice in me (the one that usually makes me do stupid dumb shit) started to point out that she was actually faster than me…. This started eating me… until I decided to “beat” said yellow vested lady…… I should add that at this stage I swear I was only riding at about 12km/hr as that was all I could manage…. I then cranked it up to ‘warp/ zimmerframe speed’ and managed to cruise up to a still laughable 15km/hr to take the lead (yes, clap clap….. I hit a new low… I guess at least she didn’t have a basket and muffins that were being taken to orphans).  So by the time I ended my ride… a whole 6.5km later! I was shattered….. but you know what… I didn’t stop, I didn’t give up because it was hard and I was sore… moving forward is good. And the fresh air did wonders to counteract the chemo side effects.

Anyway.. so that takes me to today… nearly a week out from my next chemo. As much as it could be so easy and more pleasant to those around me for me to pull the pin, and say enough is enough. I’m not going to do that, in the grand scheme of things this is just a blip, a few months, nothing to write home about really. I am going to put my head down, suck it up and just do it. I will kick its butt!

Well that’s enough rambling tonight, I realise todays post is a bit disjointed, it was just what was going through my head.. Thanks for reading

 I do promise I’ll try and update more regularly…. And try and post some photos!

 

Until next time,

Take care RAG x x x

Round 2

Apologies for the lack of updates recently.... I had been working on a new post.... in all honesty it was more thesis than post, but unfortunately for some reason it didn't save and I've lost it (insert several 4 lettered words starting with various letters of the alphabet!!).

Chemo brain has well and truly kicked in... basically this means that my normally bad recall for peoples names has gotten 100 x worse (at least I have an excuse now I guess), and that I struggle to sit and write for periods longer than a few minutes (so I was more than gutted when I lost several sessions of writing on the latest post). Oh well worse things have happened at sea.... time to suck it up and worry about something that's actually worth worrying about.

Anyway tomorrow is D day again... the start of round 2. I'd be lying if I said I wasn't  nervous about it.... I felt miserable after the last IV infusion, so I'm anticipating this again. Fingers crossed I'm wrong.... watch this space I guess.

Right, that's its for tonight's short and sweet update.... 
off to bed for me...
will aim to update in the next couple of days....

Take care
RAG x x x 

you can rock it, you can roll it....

You can rock it, you can roll it,
You can lock the rock and put your feet up.
You can sit right back and really enjoy
Your genuine la-z-boy.

I do realse some people reading this may not be old enough (or didn't grow up in NZ during 1980's) to appreciate the above lyrics,  but this pretty much summarised my Tuesday visit to the oncology day unit. I should add that I've had some technical difficulties with this blog, so its going to be picture-less and after having to retype it, it will be rather shorter than planned.
Anyway... so back to sitting in a lazy boy.... no remote control though, but instead being covered with a mini electric blanket on my arm (all will be revealied laer), and attatched to a i.v line.
welcome to my "every 3rd Tuesday".

So as a quick update, here's where I am at with Chemo... on the 17th I started what I'm going to refer to as my "insurance policy" chemo. The aim of this is chemo treatment is to basically kill any possible random cancer cells that may be left in my body (as stated before Chemo kills fast growing cells, which cancer is one type).
this time Chemo will last for 4.5 months and will consist of "rounds" which entail a 21 day cycle. On day 1, I'll receive an IV chemo drug called Oxaliplatin. This is administered through a vein in my arm and involves me sitting in a chair (funny enough a La-Z-Boy chair) for a few hours whilst that and a mixture of glucose (yep sugar) is pumped into me (apparently it flows better with glucose... doesn't everything flow better with sugar!). This drug has some unusual side effects (the biggest one is that I become highly sensitive to cold for a few days (- bring in the electric arm blanket), particularly touching and eating / drinking cold stuff, thankfully this only last for about 4-5 days after the iv infusion). The Oxaliplatin, so I've discovered also makes me sick.... picture (well try not too) really sick... if it was possible I would have thrown up my eyeball on Tuesday night... on a bonus, this only lasts a day and I have some great meds to help stop it.
Anyway..... also on day one of the cycle I start taking an oral chemo drug called capecitebine (this is the same drug I had last time, but in a stringer dose this time). I take this for 14 days and then have a week drug free, before restarting the round/ cycle again with "day one".
The good news is that I'm now on day 8 and I'm feeling great! bring on a week of no drugs... I bet I'll feel amazing!!!!
welcome to my world for the next 4 and a half months!.

Right, so that's my latest updates, other than having met with my surgeon on Monday this week..... that's me.  FYI apt went well.... I'm now medically cleared to restart rehabbing my sliced and diced body..... so watch this space.

so until next time...
take care
RAG

Choice Bro

Choices.... something we generally take for granted...
everyday we are faced with an infinite amount of choices.... red undies or green ones? tea or coffee? dress or pants? ipod or radio? matching socks or "shit, I'll just wear what I can find, and hope for the best"?

Todays topic is brought to you by the letter C....  C is for Choices, Cancer, Chemo and  Chocolate four things that I know a lot about. For reference my favourite is chocolate!

Right .....back to the reason for this post.
I think I have posted before about control (ohhh another C word), and how cancer takes pretty much all control away from you, well this post follows on from that.
Choices.....
how many times in a day have you actually consciously  thought about some of the most simplistic choices you can make? we generally go through our days not acknowledging how many choices we can actually freely make.... we choose the brand of cereal or bread we eat around such things as price, taste and flavour. Clothes are chosen based on several factors (what's clean, what's suitable for work, what makes your boobs look bigger or bum smaller), your choice of music in the car is based around many factors such as your mood, who's in the car with you, and how far your driving. These are all choices we make in the blink of an eye, we may think about them but often we take them for granted.

Now I realise this currently makes it look like I constantly analyse every small minute  aspect of my life, trust me I don't, but recently its got me thinking....

Cancer changes your ability to freely make choices.... so you start valuing what choices you can actually make freely and mindfully.

Pre cancer I doubt I would have battered an eyelid about some of the  somewhat mundane choices I would have made on a daily basis. Now I'm valuing what I can have choices in.... small things can make my day, it gives me some control back and I feel less like I'm being held captive by some invisible field.
Some choices I do get to make are based around long term goals, they may not be what others would choose, but for me I am choosing to plan ahead.... such as choosing to start what is called my "insurance" chemo. While I'm technically cancer free, I need to do another treatment schedule of chemo to make sure that any possible cells that may be lurking are killed off so they don't decided to make themselves comfortable in a few years time.
I'm choosing not to feel bad about my situation, its not the best and I have a feeling that the next 4.5-6 months are going to be hard, but I am choosing to focus on the fact I'm giving myself  and my family life.

I will be making the most of the choices I can make... there are a lot of things I don't have a choice about, but I'm not going to dwell on that..... the big picture is the prize at the end and that is my focus.

So next time your needing to make a choice, big or small, savour it, and enjoy it... there are some people out there that are not able to freely make the choices they want, and whilst their choices may not actually be what you would choose, remember their choices may be the only viable option for them.

now back to the 4th C.... chocolate.... mmmmmm we are good friends... there is really actually no choice here.... just eat it and enjoy :-)

from one of my favourite movies......

Choose Life           

 

 

Until next time RAG x x x

There is no place like home

Home sweet home... the place you can be yourself, leave your shoes in the middle of the floor and wear your most comfortable clothes without worrying what anyone will say.

I am now home.... I was finally discharged on Monday. Getting home was a massive high... this time my hospital stay involved living in a 4 bed room... you know your surgery is on the more low key side when you don't get your own room. Overall my "roomies" were pretty good. It is a bit funny when the nursing staff start calling you Radioactive girl or come and visit you when they hear your on the ward again (picture 11.30 pm visit and catch up by one of my favourite nurses from last time who was on the night shift and heard I was awake).

This part of my journey started on Wednesday the 21st, when I "reported" to the hospital.. they really do make it sound like your checking into a hotel.. report at reception..... on hindsight I should have requested a room with an ocean view and a king bed!

Since this was the big "good bye" to Judith, I decided to do this in a bit of style... I left a note for my surgeon (he's getting use to my badly timed sense of humour and long lists of questions).

Skip forward a couple of hours and I officially wake up in recovery  - a Dyson (bagless).

Now the next few days (photos still to come as there seems to be a technical issue happening) involved acquainting myself with my roomies, being reunited with my old pole dancing friend "Baxter"... this time he was supporting both IV fluids and Morphine, drinking large quantities of fluids and discovering that there is a point where you actually can eat far too much jelly (try getting it served, along with a lemonade popsicle for every meal for 3 days straight!)... now the other thing that needed to occur was my body to decide to remember how to use the now fully plumbed large intestine... this actually takes time, and until then I was on the fluids only diet...

The human body is a pretty cool thing, it can do a whole heap of stuff... like start working in a functional manner after being sliced open, replumbed, parts left dormant, then resliced open and replumbed yet again, and then start to remember how to work all over again. Now for some people it takes a little longer to start working again normally (and there are some horror stories out there about this), thankfully my body has decided to work in a way that I'm pretty happy about.

So fast forward to now.... I'm now 1 week and 4 days post surgery. Things are working pretty well (better than I could have imagined to be honest), I'm still on painkillers and I still have part of my wound to pack (this is where the drain came out)... but I'm doing well. Time now to get better, heal fast and get myself ready for my next 'adventure' - Chemo.

Like everything that I've done and been through so far, I have learnt things along this part of my journey.....
1. the nutritional content and taste of hospital food leaves a lot to the imagination
2. that no matter how bad you think things are going for you, there is always someone out there having a worse time (sharing a room with a beautiful lady with terminal/ end stage cancer makes you appreciate what you have).
3. I'm still amazed as to how awesome a group of friends and family I have.... visits, txt, FB messages, phone calls etc... no matter what I know I am not alone.
4. some farts are not just farts
5. that some people really do need a good punch in the face (picture: 2 days of nil by mouth/ limited fluids other than a drip and ice water, a woman gets admitted to the bed opposite, starts complaining she's hungry, eats a full hospital meal in front of you, then calls her friend to bring McDonalds up to her.... proceeds to eat said meal  - thankfully curtains pulled, but making running commentary about the meal. NB whilst McDonalds is certainly not the food I would choose to enjoy after a 'fast" the smell of chips and burgers is actually something rather magical after 2 days of fluids only... PS Punching people is wrong... what I should have said is that I wished her pubes would be infested by the fleas of a 1000 camels).
6. giving your beloved other half the opportunity to learn to dress your wound and pack it (saves daily community nurse visits and trips to the hospital), creates a rather happy camper (hmmmm  someone was a little too happy to do this!.... there are a lot of in-house jokes about a scene from the movie Ted when this is being done).
                                             

Home is good.... I think I have chalked up enough hospital time lately... so I'm not planning on heading back any time soon.

RAG x

Cancer free

Well today is a big day...  firstly its the day before my reversal (see ya Judith!), I had a meeting with my oncologist (the one in charge of the Chemo side), and its the day that Radioactive girl gets de-masked... yep the time has come to go out of my comfort zone and put on my big girl panties.

So... Hello... my name is Kathy Sullivan (Kat for short)... I am RAG.



2013, pre diagnosis....

My reason for introducing myself is because it occurred to me that I know a lot of people find talking about "bum cancer" and other such related issues somewhat embarrassing and unpleasant... its not a cancer that gets a lot of publicity... I'm hoping by identifying myself I can help shed some of the 'secrecy' that surrounds this cancer. I don't want people to think that I'm hiding myself because I'm embarrassed. I'm not. As I identified in an earlier blog, my reason for staying quiet is more around my comfort level around how others will react and others views on treatment. I feel a lot stronger now and comfortable in my own skin.

Anyway todays post is able about updating you on my meeting with the oncologist today...
The good news is that at this point in time I am cancer free, the surgery resulted in a successful removal of the tumour and in the 18 nodes removed, not one of them had cancer cells in them.
Cancer free!

So what next... well, the next step in this journey  (after my reversal tomorrow) is to start another round of Chemotherapy treatment. This adjuvant round of chemo is used as a preventative measure "kill it with fire", with the aim of decreasing the chances of any "lurking" cells showing their face in the next few years.  I will start my chemo in 4 weeks!  
I know that another round of chemo is not everyone's idea of catching a break, but to be honest I'm rather glad they have prescribed this as part of my plan... its going to give me the best chances, and in the end that's what matters...  being and staying cancer free... has a ring to it doesn't it!!!

My other news for the day is that Judith now has a lifespan of less than 24 hours!!! due to a few complications that have developed over the last few weeks I'm really hanging out for her to get evicted... mind you I'm starting to get nervous... this time tomorrow night I'll be bag free!!!!  so many things that I have missed since getting my ileostomy... sleeping on my stomach, rolling overfreely, sleeping all night, farting (*snigger*... yes I'm hanging out for a good fart... its weird not being able to!), and being able to eat fruits and veggies without worrying about them causing a blockage! Oh the little things in life!

I'm not sure how much I'll be able to update my blog whilst in hospital... I'll try... so keep checking in....

so until next time....
take care,

RAG x x x

All it takes is all you got

All it takes is all you got.... says it all really.... wise words.

Throughout this blog I have often talked about some of the truly amazing friends that have supported both myself and my family throughout my journey so far. The title of todays post is the name of the blog by one such friend.
I felt that her latest post sums up a lot of what I've discovered over the pat few month...  getting a different perspective as to how life ticks on gives you a whole new appreciation for the little things, and no matter what happens and what plan you end up on (Plan A, B, C...) you need to keep going... giving up is not an option.

http://www.iridelikeagirltrytokeepup.blogspot.co.nz/2015/01/the-other-side-of-fence.html


                                  

I've realised it would be very easy to sit back and give up, spend all day in bed, and sit round waiting for the pity train... I have had many people ask me why I still work and get out and do stuff when I could be at home "resting" and "having cancer".  I could, but that would mean I wasn't 'winning' (Like hell I am letting cancer win anything), by working and getting out and doing stuff (abet a lot less than I would like to be doing, and I have had to learn to listen to my body and just go with the flow - wise words told to me by my coach along time ago - see I listened!) I feel I have some control in my life. I would love to have full control, and that will come (along with the energy, and physical strength)...  but until then I will do what I need to do to keep moving forward (example of this was me walking home from dropping the car off at the garage the other day... its only about 1.5kn from home, but it was hot and there is a hill. Now I could have called my other half to pick me up, but I broke it down, lamp post to lamp post.... I was not going to stop... Ok I'm rather stubborn and didn't want the neighbours seeing me stopping! I made it.. slowly but I made it, with NO stops!!!).
 Its all about small steps... forward.

As I'm about to sign off, I'll make note that I'm now only 4 sleeps to my next major "moving forward" moment.... my ileostomy reversal.....  moving forward!!!

keep moving forward people...

RAG x x x

Nudie pics

Today I posted a naked selfie of myself on Facebook....  shocked????
Well... it didn't show my face (isn't that how "all the young kids" do it???) .... and technically it actually really wasn't of me... it was of Judith.

When I first got my stoma I joined several closed groups on Facebook about Ileostomy's, and stomas, they have been my lifeline at times in terms of having others to chat with and to share and gain info, plus have the odd inappropriate joke out our "outside butt holes".

I never actually thought I would ever post a pick of Judith naked, but the other night I saw a woman's post on there asking if her stoma looked "normal", and she posted a picture of a very healthy and "cute" looking stoma. I had planned on posting pin up girl Judith on her thread to show her Judith's wonky side..... however between me doing a bag change and taking a photo someone from the closed group placed a complaint with FB stating it was offensive (ummm its a closed group for people with stomas... you would think they would know what one looked like!!).
So in protest of this person, a lot of group members "got their gear off" and group posted photos... yep, I'm a sucker for peer pressure (or maybe I just wanted an excuse to "get my gear off" and take a photo).

I guess the point of todays post is that as much as people find things related to bums, poos and all sorts of stomach stuff embarrassing and unappealing, I'm actually grateful to have my stoma (short lived it may be... Judith has now been served with a formal eviction notice of January the 21st!!!)... my stoma is a sign that my surgery was successful... meaning that my cancer was removed!

Now, I'm actually in a dilemma  at the moment.... to post said "nudie" shot on here or not to... as this is an open blog and I do realise seeing someone's small intestine sticking out of a belly is not quite everyone's cup of tea, I've decided to not post a pic. I will however if you want to know more or talk in further details about my stoma or stomas in general, or answer any questions you know how to get hold of me.

So until next time... be proud of what you have, and who you are.. get your gear off if needed, don't hide your flaws and scars...they make you who you are.

RAG x x x

Shits and giggles....

Its been a while since I've genuinely had a good laugh on here at either myself, my current situation, or at the expense of some poor health care professional who has unfortunately got me on one of my "funny' days.... so here are some gems about having a stoma.

You know you have an Ostomy when...

...Someone tells a joke and your stoma "laughs" with you.
...Your purse just grew three sizes to accommodate your emergency supplies.
...Showering *fully* naked is exciting.
...The color, consistency, and detail of your poo is more interesting to you than most other topics.
...Your new "butthole" has a name. (mine is Judith) - FYI politicians are apparently popular choices for stoma names!
...You poo around company, visitors, during meetings, and meals etc.
...Pooing does not require clothing removal.
...You have more pooing supplies than a baby.
...You worry that the store employees think you are shoplifting something under your clothes because your bag is full.
...You drink a lot of fizzy just to see how quickly the bag will fill with gas. Then you can be your own floatation device/ children's party balloon animal.
...When someone says "Man, I gotta take a dump", you proudly say "I'M taking a dump RIGHT NOW!"
...You absent-mindedly feel the bottom of your bag to see if it needs emptying in front of strangers.
...That old insult "Your are full of shit" is demonstrably untrue.
.... you discover your stoma has a mind of its own and when starting to inflate like a balloon, can actually undo the zip in your pants!!!
....The noises your stoma makes can actually make you great money in the film industry as they can be used for the next alien movie.
... The sound of someone popping a 'Zap" or "Just Juice" carton gives you a very uneasy feeling!
... You and your other half have constant joking (with a somewhat serious undertone) about sleeping with a tarpaulin in the bed "just in case".
.... You giggle when you read online information sheets about stomas that state such things as..... do not use suppository's into your stoma, and "your stoma is not a sexual orifice"!
.... You talk with pharmacy staff about potential medications etc, and get greeted with a look of confusion.
... "oh shit" takes on a whole new meaning!
.... Your loving other half starts dicing with death (see above comment) when they decide to "superman" onto the bed when your in it!!!
....Coconut and pineapple becomes your mortal enemy.
... Your eating habits regress to becoming that of a picky/ fussy teenager again.
... Your Daughter becomes the food/ bag police.... with regular safety warnings of "don't pop your bag" and can you eat this???
.... clarification needs to be had when discussing exactly what type of bag your discussing.... confusions about colour and size can easily had if your not careful...  i.e (in reference to my new camera bag.. conversation had via txt)  Me: "the bags really orange... I really like it, it will stand out easily out in a crowd"
My other half: "what the hell have you been eating? was that last night curry???"

So with these gems  of wisdom shared.... Judith and I will enjoy the rest of our Friday....
take care peoples...

RAG x x x

Dear 2014... see ya! Part 2

Two days into 2015.... the sun is shining, life is good.

As I say goodbye to 2014, I think of all things that have happened over the year... its funny I find myself referring to "the year" as basically anything after July... pre then I don't really remember much..... Cancer has a way of taking over everything.

so much has happened in what now feels like a very short period of time... but now time is moving forward, like it or not.....

here we are 2015.... simply referred to as the year of the "comeback".

While I'm still slightly in limbo in terms of waiting for Judith to get evicted and waiting to find out what's happening regarding another round of Chemo, I am secretly plotting and planning a comeback of epic proportions... screw you cancer... I'm winning this....

Today I drew a line in the sand (literally)... we went to the beach today... the weather was stunning... so Judith was promptly made to don a swimsuit. Now this is something I've been secretly dreading, but knew I needed to do.
In my head all I could picture is Judith having a "meltdown" and doing something stupid, like filling with excessive gas (picture a inflated balloon sticking out of my stomach)... hmmm not the best look having a self inflating floatation device sticking out from my togs... how shall I handle this???
The  safety plan?.... whip it out and promptly start making balloon animals.. Judith has mastered the following shapes... a bag, a box jelly fish, a woopie coushion, and several types of animal (just draw appropriate eyes on her and stick the odd set of ears on, and she's good to go.. instant children's puppet show). Anyway with a "slight" plan of attack if things go wrong... out came the togs...

......Wait for it.... Judith actually decided to behave!!! and you actually couldn't see her!
so one step forward....  winning.

So with that step forward, I plan my next leap into 2015.... a real bike ride.....
stay tuned peoples.....

Happy 2015 
RAG x x x