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