Missing In Action

I’ve actually lost track as to when I last posted on here. I’ve thought about posting a lot, yet always talked myself out of it….  Part of me was thinking “lets go back to pre blog days” but to be honest that will never happen, pre blog means pre cancer.

This is not saying or implying that I’m stuck and can’t get past or over the whole cancer thing, but its always going to be there. I’ve tried over the past few months to see if life can go back to pre cancer days… this can only last so long before something pops up… whether its something as simple and silly as forgetting to drink enough water and getting dehydrated, or seeing the scars on my body from surgery; through to some pretty complex stuff such as the share panic and dread that sets in when a letter from the hospital arrives with an appointments for a CT scan or bloods.

Its things like that that ping you right back into ‘reality’ and being missing in action doing whatever, wherever loses its carefreeness.

There is always a reminder, but I’m determined that, that’s all its going to be, I have been shaped by my experiences and they are part of my story and I have started to understand more as to where they fit into the next part of my story (they are the prequel for what is to come).

The past few months have been filled with so much…. There has been travel (Australia for work, and America for play); I have started working full time again; I’m (still)  learning to juggle the balance of work, training and family; I did my first ‘public’ talk about my journey (keep posted for a whole blog about that one); and sadly I’ve been too far too many funerals this year.

The next few months hold a lot; I have goals to meet on the bike, I have goals to meet personally and I have goals to meet professionally.

One thing I have learnt and am glad that I have learnt is that if you put your mind to it you can achieve… nothing ever gets handed to you, the harder you work for something the greater the success when you achieve it.

Radioactive girl is no longer missing in action… she is here to stay.

So thank you for coming back to read this post, please keep coming back… the best is yet to come…

RAG x

Just like riding a bike

Life is a funny thing, I think we often take a lot of things for granted. People seem to value monetary items and wealth over wellness and experiences.

Sometimes it’s the little things that we over look so often that are things that are the most valuable and precious. Simple pleasures I guess you could call them.

My simple pleasure… one of the things I value the most (aside from my family and friends of course) is the ability to ride a bike.

Now I know this is something that  may sound pretty horrific to some… the thought of exertion, getting hot and sweaty and grinding away in a mixture of pain and lycra clad horrificness ( I can imagine some of you reading this are smiling and nodding away reading this)… sounds pretty off putting right???

Well wrong…. To me riding a bike is a lot like life… and I think it’s a pretty good metaphor. (*disclaimer… this post is not attempting to convert any non cyclists into buying a bike and slapping on some lycra, but if it makes you feel a little tingly and slightly curious, I take no responsibility…. Just run with it and smile!!)

Anyway.. so what am I on about in terms of talking about life and bikes… have I changed the focus of this blog away from my cancer journey? I may hear you ask yourself… the short answer is NO….

Keep reading, I know you want to ;-)

Riding a bike is as close to flying as I thing you can get whist not having wings…. There is a freedom about getting out, feeling the wind in your face, your heart beating and having a smile on your face… hey isn’t this something we all want to achieve in life… freedom and enjoyment???

Life brings us happieness, choices, freedom, and new experiences… it also brings us change, unpredictability, challenges, fear, and at times can take us all to really shitty places we would rather not be in.
Riding a bike is pretty much the same.. As you know I have talked about riding the 50km Karapoti Mountain bike race which was in March…  this race is not just any race…. I guess its tag line of “more than just a race” stands true.

http://www.stuff.co.nz/dominion-post/news/hutt-valley/77024186/upper-hutt-cyclist-takes-on-karapoti-classic-after-cancer-treatment

For me Karapoti is a good summary of my life since I got diagnosed…. A mixture of hard work, incredibly steep (never ending) up hills, some places where I felt I just wanted to give up, lots of physically and mentally challenging bits, a fear of ‘what next, what could go wrong’, a few places where I got wet feet, an ongoing need to keep pushing myself no matter what, followed by an overall reward of some down hill and the finish line (Hmm that description actually makes it sound somewhat manageable… not sure if I’m talking about my journey or the race!).

I finished Karapoti…. I don’t care what time I did, I don’t care I was second to last, or that I rode most of the way with the tail end charlies (these guys were funny and great company), I don’t care that I yelled/ swore at the woman at one of the second to last aid station who asked if I wanted to give up and get a ride back in the 4WD (like hell was my answer… ummm ok, I may have used another word)…. But I had come far too far to give up just because someone thought I was struggling… struggling isn’t a reason to give up, if anything it a reason to keep moving forward… which I did. Two rules for myself… I wasn’t not allowed to sit or lie down (until the finish line), or go backwards… I had to keep going forward no matter what. What I care about the most is that I finished. I didn’t give up, and I crossed that finish line with my family and friends there to cheer me on…. Just like when I completed my cancer treatment… surrounded by people who invested as much time and trust into me as I did with them. Just like finishing treatment, at the end there was a few tears, not of fear or of pure tiredness, but of joy and completion, these were however masked come race day as having a lot of ‘sweat’ pouring out of a few eyes ;-) it was a very ‘sweaty’ finish line!

 

 

Karapoti (and riding a bike) affords the same amount of respect as life, there are always going to be ‘hick ups’ in life (and races) that show us down, may they be flat tires, broken bike bits, illnesses, unwanted changes… the list goes on. Life is full of changes, very few people will go through life on their initial “plan A” path, things changes, events occur  … we fall in love,  we fall out of love, we discover new interests, we experience life changing events; the same goes for riding a bike… we may set out to ride to one place, but there are always new paths and adventures along the way that will often make us stop, pick some blackberries, pat a horse, watch a waterfall, or just forget the original plan and keep riding with a smile on your face.

I guess one thing that I have discovered since this journey began… is that no matter what path you start off on, being prepared to change course and just go along for the ride, who know where you will end up.

Until next time… keep riding

RAG  x x x

 

Lets party like its 2016!

Well it’s now 2016, shit how did that happen? Time fly’s when you’re having fun ;-)

It’s been a while between blogs, to be brutally honest, I’ve written and then re written new posts so many times in my head that I can’t count how many times I have sat down to physically write something then either drawn a blank or started writing something and ended with it going round and round in circles… I guess that describes perfectly where my head is at times.

I swear at times I need continual circus themed music playing to be the sound track in my head! I guess I blame part of this on the 1. Chemo brain (it’s a great scape goat!), 2. my ongoing anger for cancer – seriously it just make me so pissed off that so many people have to put up with this stupid disease, 3. my promise to myself that I want something positive to come from my journey and I guess finally…. number 4 (If you have ever actually talked to me in person you’ll understand this) I will often have so much going on in my head that it just fly’s out at random times!

So 2016 has officially kicked off, we have now been here for 2 weeks!  Did I make any new years resolutions? Nope!

I promised myself that I wasn’t going to make a list of things to “do” this year… I’m pretty experienced now in the art of “working to plan B or C or even D” to know that nothing ever goes to perfect plan, with that I decided that rather than making a list, I would “just do shit”  (*snort, yep, shit, in connection to the Bowel Cancer thing seems to be a pretty appropriate word to use).

So this year’s first “get shit done” is to start training with the focus of completing the 50km Karipoti Mountain bike race in March…. Watch this space for more details… trust me, I have a feeling this will feature a lot in coming weeks.

My second “get shit done” is going to be trying to increase the awareness of Bowel Cancer… yes, watch this space, this may involve full audience participation, which means you! It also means I need to keep this blog updated on a more regular basis, so stay tuned, hold on tight and get ready to come along on an interesting journey.

 

So on that note, thanks for reading this post, for finding this blog and for coming back.

Stay tuned…  RAG is back  x

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