Daffodil Day 2014

Did you know that one in 3 New Zealanders are affected by cancer in some way....

That stat is REALLY high.... its  a good job that there are services such as the Cancer Society of New Zealand is there to lend a supporting hand.

Today is Daffodil Day - the Cancer Societies annual awareness and main fundraising event.

Whilst I have always supported this event, this year its brought home an even bigger reason to support it... I am 1 in 3!

This year I decided to wear my heart on my sleeve (or finger nails to be more accurate), and was joined by all members in our household..... Miss 7 was sporting a full set of bright yellow nails (plus matching loom band ring), Mr ummmm 40 (*cough something) decided on a simple and effective statement, one yellow finger nail on the middle finger as that's what cancer deserves (fuck you cancer), and myself one bright yellow nail on each hand (some brightness in the dark).

 

 

 

Please support the Cancer Society (along with all the other cancer support services) they really do an amazing job....

 

 

 

 



 

Dog training 101

A few weeks ago when I was out at my GP, I was talking to her about having started up my blog as a way of getting out what's in my head, she asked me if I had come across a blog called  "My experience of walking the dog"  by Harriet Rowland. I have to confess my initial thoughts were "great just what I need" and "do I really want to read something that's ended badly".

I think it must have been pretty apparent this was what I was thinking, as she very quickly reassured me that she thought I would actually enjoy reading it.

So that night with a bit of anxiety I started reading Harriet's first blog entry, quickly followed by her second and third.... it soon became very clear that (yet again) my GP was right (She's pretty on to it!).

So this post is about Harriet, and I hope I do her justice in my writing, not just in todays post but in continuing my blog.
For a young woman (one whom I have never met may I add), she has left a very large impression on me.

 
Exactly 3 years to the day Harriet wrote in her first blog post the following statement.....

            "My family likes to call having cancer like having a dog because as long as it stays in its yard its ok, when it starts digging up the bushes in the neighbors... not sooo much”

 Having read this, I found an automatic connection....  

I first read this before I started my treatment, at that stage the dog had the potential to start digging bigger holes, and chasing cars...... I'm currently hoping the last 10 days have taught the dog some lessons..... Sitting and staying are what I'm currently working on.   
Harriet' blog has changed things for me, and I have to confess I am in ore of her strength and insight. There is not much more to say really except that I really appreciate Harriet for teaching me about walking my own dog...                                                                                                  


Harriet would have turned 21 this week, on her Birthday her book was launched....  http://www.scoop.co.nz/stories/CU1408/S00454/the-book-of-hat-goes-global.htm        
Harriet's blog is:


 http://myexperienceofwalkingthedog.blogspot.co.nz

                                           


RAG x

One down, 5 to go....

I've just completed my first full week of Chemo and Radiotherapy... so far so good!
As small as this may seem, I feel like its a pretty big milestone in moving forward.

So much has happened over the past few weeks, from the very beginning till now, I've learnt a lot about myself, cancer, and how I have a truly amazing group of people I can call friends.

Having cancer changes a lot... its not just the day to day stuff like having to take pills twice a day or making daily trips into Wellington to get microwaved, its the things like acknowledging that life is now different.... plan B even (gone is our spontaneity to plan ahead a few weeks to go Mountain biking out of town; taking advantage of the really cheap flight to San Fran in Feb next year; or planning the start of a new job).
It changes the way you feel about yourself, as much as I would never have really considered myself as normal, I would now love to see my self as normal.. oh to be the vanilla ice cream option rather than the goody goody gumdrop type (weird chemical taste, semi radioactive colouring, with hard lumpy bits that get stuck in your teeth!).

Oh to have a cancer free life again, where I don't feel self-conscious about being sick (can people tell I'm sick???)  or about what others think of me and my diagnosis (I've been told that most people hear the C word and automatically think that it equates to a death sentence).
Telling people is the hardest thing... and I have to confess I have put some people in the "too hard basket" in terms of telling them.... how do you tell one of your closet friends you have cancer when the are in the middle of the joys of having their first born?  cancer sucks, it really does.

As I said at the start of todays post, I've learnt a lot in the past few weeks... here's some of the lessons I've learnt...

1.       Much to my disappointment, Isoscan will not make you wee glow in the dark.

2.       Suppositories and having a coughing fit don’t go well together.

3.       That apparently my signature is quote: “impressive, its messier than mine, is that really your signature?” I consider that a complement from a Doctor!

4.       It is possible to fall asleep in a MRI scan when you’re in it for 50mins!

5.       When the radiographer starts to tell you able the risks of radiation when about to have a MRI, and you reply… “what…. it’s not like it’s going to give me cancer… you do realise why I’m here?” is one way to floor someone… poor man lol!

6.       That despite the health profession/ sector in NZ getting bad press for unhelpful staff, long wait lists and people generally being unhappy with their care, I have come across nothing but really amazing medical professionals that generally do go the extra mile to help. Something I am really grateful for.

7.       When having an ultrasound, whilst being accompanied by my partner, it pays to check that the sonographer has a sense of humour when you both look at each other mid scan, hold hands and ask “is it a boy or a girl?”

 

8.  A full week of radiotherapy treatment is not enough to give you super powers, or make you glow in the dark .... I'd like better results after week 2 please, otherwise a refund would be good.

 

9.  Friends are amazing, they are what keep you going. Its the little things, from people bending over backwards to offer help,  those whom laugh at the situation as much as I do, to those whom treat you exactly the same as "before" , through to those who bring you home made vanilla essence to help me get back to "normal". I so appreciate every text, Facebook message and phone call. I have some of the most amazing people in my life.

 

10.  (*warning* sappy moment) I really do have the best partner/ best friend in the world.... enough said.

 

11. Cancer really does suck, but it doesn't have to be a death sentence... cancers can be treated (sadly no one writes good cancer movies and books where the person survives... apparently that's not a money maker). Stats for cancer survivor rates are getting higher all the time. I do plan on dying.... in about 50 odd years so until then Fuck you cancer... I'll write a pretty good book at the end of this... watch this space.

until the next instalment..... (I promise more pics next time),
take care


RAG x

Cook for 10 minutes on high

Meet my personal transformer... its more than meets the eye!

This is LA3

This rather expensive machine (picture not much change from $5M!) with its cool laser lights and beeping things is where I will be spending time every Monday to Friday for the next 6 weeks.

The purpose of this machine is to (lay-mans terms) "Nuke / microwave my cancer bits" by killing the cells (both good and bad ones).

I recon hidden inside LA3 is one of these ;-)



On a more serious note if your really interested as to how Radiotherapy works  check this site out:

 

http://www.radiologyinfo.org/en/info.cfm?pg=linac       

 

 

The whole process is painless, basically I rock in and the two radiotherapists set me up (think of a more medically minded dot to dot matching activity using my tattooed dots and a series of laser lines to make sure I'm in the right position), I work really hard at lying there ;-) get zapped then I'm free to go on my merry way... and then the whole things begins again the next day.

 

 

 

 

 

 



Houston we have lift off

Today I achieved two firsts..... my first Radiotherapy session and my first Chemotherapy "session" (well pill popping session in the kitchen to be exact).

Its a weird feeling knowing your actively doing something that effectively is not only killing off the cancerous cells, but also the healthy ones I need to live a healthy life. Effectively I'm in a balancing act of killing off the bad, and trying not to kill too much of the good.

Day one is done and dusted.... 6 weeks (minus 1 day) left to go! 


short and sweet tonight......  night all, its been a LONG day.

RAG  x

Plan A

I'm writing this with the theory that all things will go as planned and that the plan I got today will be "the plan". Fingers, toes, legs ... everything crossed.

So..... On Monday I  will start a mixture of Chemotherapy and Radiotherapy with the aim of (layman's terms here) - Nuking the shit out of this thing so that it can be lobbed out in about 6 weeks after I stop the Chemo and Radio. Having looked at the dates for this, its looking like a quite Christmas period for me.

Having spoken to my latest Doctor today (a really lovely, funny and onto it Irish lady), I'm slightly wiser about Chemo (FYI:  I now have a Dr over seeing my Radio therapy... the awesome man whom had me swearing and dancing on the phone the other day when he gave me the good Liver news. A Chemo Dr who over sees the Chemo drug side (the Irish Lady), and eventually a Surgeon assigned to me. Add to this, the Cancer coordination Nurse I have (no flies on her, she's on to it!); a cancer Nurse (for home support); support from the Cancer society; my fantastic GP (who was so onto it to start the ball rolling) and a newly added social worker to the mix... I'm very quickly gathering a team for total cancer domination - F you cancer!).

Anyway back to the drugs... its all about the drugs today.
There are several kinds of Chemo drugs, the one I am going to be given is in pill form, this means that I wont have to get hooked up to drips etc. each day. Apparently the drug I'm getting has less side effects, which one bonus will mean that I will be able to keep my scheduled hairdressers appointment next week!  - the little things eh.

Today involved me getting my pre Chemo bloods taken, getting more reading material about the Drug I'll be getting and having a general chat about the plan. The best part is that I will start this on Monday!  In 4 days time I will be starting my journey to kick this Cancers arse. It's kinda weird that I'm feeling so excited about starting a course of therapy that will not only kick this cancers arse but also has the potential to generally kick my arse too.

I get a feeling I will be getting rather used to seeing the following over the next few weeks:

Today, like pretty much every day since I started this journey has produced some interesting lessons in life.
Todays lesson:

•   when anxious, nervous and having "stomach issues" due to such feelings... eating salmon cakes and poached  eggs for lunch (right before seeing your Dr) is not the best thing you could do. FYI they stayed in and I didn't disgrace myself in the Dr's rubbish bin that I was eyeing up! 

RAG x

The things they do.....

Having cancer means your on a rollercoaster of ups and downs, apparently this is 'normal'. I read this in my "congratulations you have cancer pack"  of books - its like the "how to guide" .. a sucky how to info pack.... makes the instruction booklet for the kitset shed look like a best seller!

Anyway after a weekend of feeling pretty good after Fridays news, today was a low day. I woke up with what felt like a cold.... not a good thing if your going to start Chemo in a few days! and generally I just felt like shite.

Fast foreword several hours to when my knight in shining armour comes home from work, does his usual routine of taking off his work clothes and getting into some jeans etc.... what greeted me today as he came up the stairs from the bedroom, made me smile.

When you have someone in your life that's willing to go the extra mile to make you smile (even though for his own comfort is compromised  - along with several other things... he he he...  in the process), you have to laugh and be thankful.   x

Yes, these are my pink PJ pants! You have to love him :-)

 

I don't have Liver cancer!!!!!

Sorry for the very non creative title...  couldn't think of anything that could sum up my news today as well as just blurting it out!!!!!
Apologies also go to my work mate who had to listen and watch my dance of joy, and my Oncologist who I cant recall if or how many time I may have used the F word in excitement during my barely 4 minute phone call with him.

So today started off like so many of the days over the past few weeks, waking up to a continued cloud of uncertainty as to exactly what is happening in my body, followed by the thought of what is going to happen to my body.

I called my Cancer nurse today  when I got to work to see if she knew if there would be an appointment coming up regarding getting the MRI results from Wednesday. She informed me that the Friday Oncology MDT meeting was being held this morning and I was listed as being up for discussion, and that if she saw any appointments pop up she would call me.

Its a weird feeling knowing that your being discussed in an hours time and that other people will know more about the condition of your body than you do at this stage.

Fast forward to 11.10am my mobile goes off.... "unlisted number" (AKA the hospital). Its my Oncologist, personally calling me..... "you know how we talked and I said I would only call you if it was good news..... well, I have some good news", at that stage I think I nearly wet my pants!

So the news is.... the shadows/ masses are not cancerous, they are just blood vessels that  have basically gotten themselves tangled up, they are called: Liver hemangioma (he-man-jee-O-muh). They are NON CANCEROUS!!!!!
AND.......I can now start treatment for my bowel cancer!!! this means that in just over a week or so I will be starting Radiotherapy and Chemotherapy for 6 weeks... kinda like a job, its a Monday to Friday thing (weekends off), once a day I will need to head into Wellington hospital to get my daily dose of cancer killers!
I should be glowing by the end of that!

I currently feel I have had such a weight taken off my shoulders today... while I know I have a huge uphill journey to come, I am basking in the fact that I'm only needing to battle and cause total suffering on only one cancer.

The cyclist in me also knows the concept... that you have to earn your sweet down hills by sucking it up and doing the uphill battle first...... Bring on my sweet down hill ride......

"we like to call it the apricot donut....."

Its been a strange few days since my last post.
I've come to the blunt realisation that although I am only just starting this journey,  I'm further along the path than I thought I was. There is a strange acceptance that I guess you come to when you realise that you now no longer have any control of what is about to happen; your body, time and thoughts are preoccupied and taken over by this time wasting and body hungry mutant called cancer.
There is no real hiding from it, and as much as you try, its always there.

Now for those who know me, are fully aware that I hate not being in control, in fact I can't think of many things that I class as a fear, but not being in control is very high, if not at the top of my list.

Cancer I'm discovering takes control away from you.... you no longer have a choice about a lot of things... today for instant, I spent 3 hours getting yet another MRI scan (well actually 2 scans today, plus a half hour gap in the middle where I got to eat finally - Nill by Mouth sucks when you crave such things as lolly cake!), that's 3 hours I would have much rather been using to do something productive or fun, instead I spent most of it in a hospital gown (at least for this one I got to keep my jeans and skate shoes on.

Shoe selfie - at least the top matches my jeans!



 

Hospitals seem to like a Wizard of Oz theme of 'to get to where you need to go'... follow the "insert colour" line there.... I'm still living in hope to find the tin man or eventually the Wizard lurking around.... maybe one day!
So today journey started with me following the blue line.... I confess I was tempted to skip, but I'll save that for another day!

 

the blue line eventully stops, and I'm there... no scarecrow, or the lion, but instead there is a couple in their 60's sitting in the waiting room, I walk in and they both smile warmly at me. I sit down and start my wait, the lady gets taken away and I'm left there with her husband. after a few minutes of awkward silence we start making coded conversation.... general weather and random jokes about waiting etc... then I discovered there is a code.... initiated by the gentleman, I get 'sussed out'..... "parking was bad today, I couldn't get into the cancer society car park, and had to go to level 2" ... he looks at me, I smiled and its understood that I am privy to the 'code'....  the ice has been broken.

Talking with this gentleman was really humbling and enlightening, his wife has been fighting cancer for over 2 years. It was nice that we could both sit and talk shit, laugh, and know that despite being total strangers that we both had a hatred for this stupid thing called cancer, that had changed so much for them, and is in the process of changing so much for me.

Before long, it was my turn to do my best impersonation of a microwaved chicken.... so I swapped places with his wife, and headed in......  after asking if I could take a cheeky photo to keep you all enlightened to each step of my process, I was quickly informed "yep, we like to call it our apricot donut" hmmm it does have a very interesting colour scheme, and on some angles it looks rather dodge... I'll let you make your own judgement.

Being recognised by the radiographer, indicates I'm becoming a frequent flyer.... I wonder if they give out freebees after so many visits?

Anyway, tonight's a rambling post.... partly because I'm tired and also due to the fact I feel that I have a whirlwind in my head.... so much going on, random stuff is just flying out.

I'm going to leave it there tonight....
I'll be back soon, more energised and ready for the next stage.....

until then, remember these wise words of wisdom.... never pat a burning dog!

keep smiling,
RAG x

Limbo part 2: Adventures of the mystery shadows

Achievements for the day:

• sorted out free parking for the hospital via the Cancer Society (these guys rock!)
• got free ink.... well if you call 3 small dots "getting ink"  (one on each hip, and one in the middle.... yay I'm starting my own dot to dot picture!!!!)
• made my oncologist laugh when I told him the name of my blog (and how I decided upon it... watch this space)
• realised that I need to employ a PA to organise my hospital schedules!
• oh and discovered that the coffee/ white chocolate Muffins at the hospital café look better than they taste.

So my ultra sound results have come back..... however it appears that my shadows are being mysterious..... several radiographers, specialists, my oncologist, and the tea lady from level 3, all seem to be unable to decide exactly what's going on... so  its back to the MRI I go next week to see what the story is.

Apparently a lot of people have shadows like mine, but don't know about them. They can be cysts or groups of blood vessels that form "wrong", but cause no problems.
For me, because I have one confirmed cancer mass, they need to find out exactly what these shadows are so they can be treated if needed.... so I can chalk up some more scans to my tally list.

On a side note:
Despite everything that's gone on over the past few weeks, one thing I am so grateful for is how fast (there are no flies on these guys and girls) and genuinely nice all the health professionals I have dealt with have been.

any-ho.... its Friday night... time for me to curl up on the sofa and catch up with the Commonwealth games..... its all party in our house!

enjoy your weekend folks

RAG  x