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