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