On the ground, not in it.

Angelina, and why I applaud her decision. (or ' why this shit never goes away'.)

The full story of Angelina's surgery and the reasons behind it.

http://www.pinklotusbreastcenter.com/breast-cancer-101/2013/05/a-patients-journey-angelina-jolie/

This surgery is all about percentages. Her risk of breast cancer in her lifetime was around 87%. but removing her breast tissue she has significantly reduced her risks. While there is tissue left , you are still at risk of breast cancer. but your risk becomes far far less. (tissue includes skin and the chest wall).

I havent, as yet, chosen to be tested for this gene.

Her story makes me think again about choosing not to.

Its a hard thing, this cancer business. The day to day living has become much easier, but there are things that constantly remind me  that I need to be vigilent. Reading Angelina's story has brought it all to the forefront again for me.  Should I get tested for this gene? knowing that if i am positive it has a whole  world of conitations both for myself, and  my girls.

Do I have the surgery , have my breasts removed?  what do I encourage  my girls  to do if I am positive?  I would like to know what Angelina thinks , regarding her girls.

I see my breast surgeon today. I am on edge and emotional. Its a weird thing walking back into those office rooms.  I will talk to her again about the gene testing,  I think.

I have a gut feeling. I think I should follow it. 

hard shit to think about.

i dont know.

will let you know.

rambling today.. probably not the best day to write a blog post.

warts and all, baby, warts and all.

peace.

Nx

 via pinterest. 

 

 

 

 

check yourself, don't forget yourself.

nx

On the ground shoppe. ( or why art can make you better.)

 

In a former life, before the events of the last year, I was a teaching artist and author. 

A couple of months ago I started to really miss being creative.. so I began to play a bit here and there.

It helps a huge amount.

I have found that i have lost certain abilities.. ( including concentrating for too long.. I cant read a book, the pages of words still freak my wee brain out ) so when I create it is with as little intention as i can. 

If you want to have a look at what i have been doing.. click here to see the store.

I often post what I am making on Instagram too if you want to follow me there.

If you too are recovering from a trauma in your life, go make something! paint, colour in, draw, sculpt.

It is one of the best medicines I could prescribe.

 

 Via PINTEREST.

August 2012. The first chemo session.

7th August Facebook update: 

Today PB and I went to chemo school. Think we are just about info'd up .. It is very much a wait and see now. I have an ECG tomorrow morning, and then chemo session number one at 1.00 pm. Will take At least four hours... Have trashy mags and raspberry twists to keep me occupied. Will also take my iPad .  It is playing on my mind a lot.. I know it won't be pleasant , I'm just hoping it isn't revolting.  But... I am on my way to the other side of this.. And need to think of this as life extending..  So I will. Nx 8th August 2012 : Hey. Am struggling a bit today.  Harder than I had hoped. Back soon hopefully. Nx

10th August 2012.

Still struggling. So tired.
Nxx

14th August 2012:

Well. Hi.!
I woke up this morning ... And actually feel.... Human again!
Chemo. 
What a fucking bitch.
It would HAVE TO BE killing the cancer.... I can't imagine how anything can survive it. There were times in the last week I felt like I wouldn't.
So as is my want ... A little progress report. 
So a week ago I had my first of six treatments. I will totally honest here darlings. I don't want to ever do it again. Hardest week of my life. Hard.est. 
ALLL the usual chemo symptoms ... And a couple Of weird shit ones. I now have wolverine sense of smell. I can smell EVERYTHING. WITHIN A 10 mile radius. Everything stinks. Including me. ... Revolting. 
Nightmares are soo bizarre and just keep going as a rolling movie every time I go back to sleep. And it isn't like the plot is even a good one. 

Also. My hair.... Is dry and weird feeling. My head is itchy and sore... And I have weird inflamed lumps all over my head. The hair is going.... I have had enough... As soon as I can find a pair of clippers it is gone.
Yup one sexy beast. 
today I am tired, and dry all over, and my hands and feet are sweaty and freezing, it's like my body isn't mine anymore... Its a warehouse for chemicals, and pills, and tablets. Which will kill the cancer. And so I am grateful,( in a totally ungrateful first world kind of way.)
Weird symptom : reflux. The worst I. Have ever had. Hurts constantly. Cant lie down, can't sit up. Woot.

In other news... I have two sick ones at home .. Pb is sleeping on the sofa, because he can't sleep with me, and Bella is on day three of a flu, also not near me. 
Face masks are the new black. 

In great news, my darling family are stepping up to the plate more than I could ever have imagined. They are caring for me beautifully. Bella just got an A on a science report and Gee is going great guns in the last few weeks of her year 12 .... And PB is king of the washing machine. :))) what a man! 

So there ya go. 
Today the sun is shining. And I feel ok. 
And I am another day closer to being past this. 
And while there are a hell of a lot of times when I don't think I can do it, today, right now, I think maybe I can.
Love. Love.
Nx

15th August 2012.

Well pb took me out today. :) we went to the rock and roll fruit barn. We bought a shitload of yummy f and v, ham , salads and a huge arse loaf of fresh bread. 
BEST LUNCH EVER. So so good. Interesting side effect(?) of my life at the moment. I am CRAVING good food. Crunch is everything, clean and crisp... Fruit is so important to me.. A week ago I couldn't get enough chocolate into me, now I feel like I should want to eat it... But I would rather eat an apple!!! (there will be amongst you reading that last sentence again and again... Yup aliens have Taken over my body.)
It's an interesting thing ...I feel more interested in my health .. What goes into my body, what it is actually doing for me... Than ever before.
Hoping it is something I will hang onto and use for change for good. 
Silver lining.!!
Nx

 That was what I wrote to friends and family over the course of the first chemo intake. Reading it back it sounds like I seemed chipper and bouyant, and some days , hours, minutes were truly like that. Others were darker than any place I have been in my life. That first dose of chemo was the hardest thing I had done to that moment.  The actual process of getting the chemo into my body was longer, more painful and more boring than I expected. My left arm veins were never particularly good for bleeding etc.. so there were three ( or maybe four ) attempts to get  the cannula into the back of my hand. fun stuff. They then send in drugs to combat nausea, and other stuff too. After about an hour and a half you are ready to receive the actual chemo drugs, which are mixed at the last minute as to avoid waste. They are extremely expensive..I think the nurse said mine was about $2000.00 a session. the drug I had for the first three sessions was FEC.. and it came out in bags and was bright red. They had to manually inject each of the big arse bags one at a time into my arm through the cannula. It was the strangest feeling.  I could feel it travelling up my veins, and it ACHED the whole time. I had heat packs on my arm to help with the pain, and my arm was incredibly achy for a good two weeks after.

I felt fine when I left the hospital.

The chemo effects started about 3 hours later.

and it was fucking awful.

But.

 I got through it. 

Just.

I am titanium.

Every one fighting needs a theme song.

Like Rocky.

This is mine.

You shout it loud, but I can't hear a word you say

 I'm talking loud, not saying much

 I'm criticized, but all your bullets ricochet

 you shoot me down, but I get up

I'm bulletproof, nothing to lose fire away, fire away

 ricochet, you take your aim fire away, fire away 

 you shoot me down, but I won't fall 

 I am titanium

 you shoot me down, but I won't fall

 I am titanium

 Cut me down, but it's you who'll have further to fall  

 Ghost town and haunted love 

 Raise your voice, sticks and stones may break my bones 

 I'm talking loud, not saying much
I'm bulletproof, nothing to lose fire away, fire away

ricochet, you take your aim fire away, fire away

you shoot me down, but I won't fall

I am titanium you shoot me down, but I won't fall

I am titanium
I am titanium
I am titanium

Stone hard, machine gun, Fired at the ones who run 

 Stone hard, as bulletproof glass

 
You shoot me down, but I won't fall

I am titanium

You shoot me down, but I won't fall

I am titanium

You shoot me down, but I won't fall

I am titanium

You shoot me down, but I won't fall

I am titanium

I am titanium

Read more: DAVID GUETTA - TITANIUM LYRICS 

healing .. and heading towards chemo. July 2012.

 18th July:

I had the second surgery to remove the remaining lymph nodes from my right armpit. I was lucky and recovered from this surgery pretty well. More pain than the first, but bearable . I started right away with excerises  to get back the use of my arm. Worthwhile  as it was back to 98% good in two months or so.

facebook post 19th July

Laugh of the week... When the oncologist asked me whether I wanted to harvest eggs for future babies...
Er no.. Thanks .. I'll be right..
Very kind of him. :/

Also got to see the chemo ward where I will be going in the next few weeks. What a sad place. Can't say I was thrilled about it.. But I will make the most of it. Very confronting seeing so many people hooked up... They look sick. I don't feel sick, and sure as shit don't want to look sick either... The bald just screams chemo and cancer... Think I am going to have to give the red lipstick a fine old workout over the next few months... 
Right .. Rambling now... Night all,
Ngai xxx

 

Before.

 

Facebook post 26th July ..

Hey my darlings!
I saw my surgeon today. All wounds are healing well.... And I can start with the bio oil tonight. No more tapes or bandages = no more itching .*** ( I am allergic to almost every tape and band aid there is = blistering and mad itching)  Very grateful for that.
So.... I can start chemo ASAP. I see the oncologist on Tuesday.... And will be starting soon after that. Because my last hit will be in December.. If I can get it done earlier and have Christmas chemo free.. Then that would be fabulous.. So thats my aim. 
Getting anxious about how I will go with chemo... But I won't know till I give it a go, I guess.
I have now got several head scarf/ beenies/wraps/ hijab type things. All of which just make me look like a sick bald chick. I just hate that they scream "chemo" ... But there ya go. While I can't hide that fact that I will be bald, I intend to be everything I usually am, and the odd bit more, while I am that bald chemo chick. 
I start that process tomorrow with a SHORT PIXIE cut and a touch of ..colour.... I will share photos, feel free to point and laugh ;)))))))
Ngai xxxxx

After.

Facebook post  29th july 2012.

Hey my darlings. A wee update. 
Am seeing my oncologist on Tuesday. Will hopefully know this week when my first chemo session will be. I just want to get it started now... My nerves are getting the better of me.
Wednesday the first is my "look good feel better" day.. Meliss ( my dear froend from the age of 14) is my date... Wigs scarves etc.. Promise will take photos. 
Other than that..life goes on. 
I will admit to sleeping badly ...and today i am struggling. I feel teary and anxious and bone weary. Not sure why I am still so freaking tired. I
I hate that I am feeling so frail emotionally. But I guess some days are just like that. Tomorrow is another day.
A better day I am sure. 
Ngai xxx
(***I do realise I am using this as a diary of sorts.. Do feel free to ignore.. I like to write.. It some how feels purged if I put it down in words.)

*** so glad I did write it all down... it truly did make me feel better,  You might like to try it too

facebook post:  31st July 2012.

So I saw the Onocologist today. He is a lovely man, and wears teeny stethoscope cuff links. :) 
Am healing well and so.. Chemo starts next Tuesday the 7th August.
I am both relieved and scared. So happy to be getting started. Worried about how I will cope. Sad that I will be so isolated for the next four months . BUT.. I am on my way... And the sooner I start, the sooner it ends. 
So if all goes to plan.. My hair will fall out on the 24 th August. (day 17) I have put this in my diary. Yes I am aware that is an odd thing to do. But I don't want to be somewhere and have my "do" end up in my coffee. Might be a quiet weekend.... Will def be a bald one.
Such is life. 

And life, is fucking good. And far better than the alternative.
:)
Ngai xxx

 

The time waiting to start chemo was hard. I am the sort of person who imagines all kinds of crap.. so I did my own head in, worrying. DO NOT DO THIS.

Surrender to the process.

Take it all one hour , one day, one week at a time.

Baby. Steps.

post surgery visit with my surgeon. July 2012.

 

facebook post after seeing my surgeon post tumor removal:

Hey. 
Well. In my continuing promise to be upfront and honest about my stupid dumb cancer.. Here goes.
PB and I saw my surgeon this afternoon.
I had two tumors, right beside each other.. Both of which are now gone with clear margins from my body. Woot indeed. 
However.. The lymph node removed is cancerous. Which basically means the cancer has traveled. Which basically means that my prognosis has changed. 
I go back into surgery on Monday 16th. Where all the remaining nodes will be removed. I will be in for about 5 days. I then come home and heal. Then in a months time I start chemo. 
Fuck it.
I will lose my hair. Which as I am discovering, is entirely different to choosing to shave your head. (***which some of you may remember I did years ago to raise money for breast cancer research.. The irony is not lost on me.)

***Me in 2006 with my brother, Greg, just after we shaved my head to raise money for breast cancer research.

***Part of the deal was that I would then dye my hair pink when it grew back. My amazing friends , family, and scrapbookers donated over $10,000! 

Yeah I know.. I SHOULD be ok with it. But I am not. Also am pissed because I have just grown my badly plucked 80's eyebrows back in, and now I might lose them too??? REALLY.??

Chemo will last until Christmas. We will then look at options for either breast removal (this will be up to me) or radiation therapy. I can't think about that right now. I have time. So I will take that time.
To be honest with you, I knew the nodes were wrong. I just did. Hard to hear tho. 
So that is me as of this moment. I have a headache the size of New York. , and I am pissed off like you cannot believe. The fight just got harder, and my resolve just got SO much stronger. I will beat this fucker. I will.
Thanks for your support dear friends. 
Ngai xxxx

 I said it before and I will say it again : take someone with you to your doctor visits. Its like my mind stepped out and all the facts, stats and suggestions just went in one ear and out the other.  This was the hardest info I had ever had to hear , and when it all actually SUNK IN . I have cancer... and the bitch is trying to kill me.

All I really heard was CHEMO.

Everything else disappeared once I heard that word. I coped (I think) pretty well up until that point. I cried in the doctors surgery. A  lot. I cried in the car on the way home. I cried while I told my girls. and I cried like a baby late at night lying in bed... knowing that while the tumours and some nodes were gone.. there was still  a big chance of having cancer in my body. I worried about how far it had travelled. And how long I would live for.  I mentally planned my funeral, the songs I wanted played, etc etc,  and wondered how many Christmases, birthdays, and celebrations I would get to see.

yay for positive thinking .. right?

Look. For the most times I was , and am. Postive, I mean.  For most of the day and most of the week, I could just about tuck it out of my mind, and live on the surface. The night were, and still are , the worst. The dark seems to encourage me to think beyond the surface.  Once I head done that morbid track, it's hard to find the clearing again. Take a mental machette and hack your way out if you have to. the clearing is where you need to be.

So.

Chemo. I had to have it. six doses. three weeks apart.  

Three  doses of FEC and then three of Docetaxel.  (You may have different drugs. it will depend on what your fight is with!) You can click on the links for more info if you like. Or you are welcome to be like I was, and wait and see how it affects you . Just DONT over-surf. If what you are finding is making you worried, or scared, STOP. Wait and see how it affects you, as we are all different. As we go further on this blog I will tell you how I felt. This doesnt mean anything for you. Remember that. Hopefully you will be one of the "breeze through it all" ones!  I have my fingers, toes and eyes crossed for you.

Ngai x

 

Mary Oliver: you are a wise woman.

“If you suddenly and unexpectedly feel joy, don’t hesitate. Give in to it. There are plenty of lives and whole towns destroyed or about to be. We are not wise, and not very often kind. And much can never be redeemed. Still life has some possibility left. Perhaps this is its way of fighting back, that sometimes something happened better than all the riches or power in the world. It could be anything, but very likely you notice it in the instant when love begins. Anyway, that’s often the case. Anyway, whatever it is, don’t be afraid of its plenty. Joy is not made to be a crumb. (Don't Hesitate)”

― Mary Oliver, Swan: Poems and Prose Poems

thank you Loretta Grayson.

nx

Stronger! play this loud and believe it!

 

 

You think you've got the best of me
Think you've had enough the last laugh
Bet you think that everything good is gone
Think you left me broken down
Think that I'd come running back
Baby, you don't know me, 'cause you're dead wrong

What doesn't kill you makes you stronger
Stand a little taller
Doesn't mean I'm lonely when I'm alone
What doesn't kill you makes you fighter
Footsteps even lighter
Doesn't mean I'm over 'cause you're gone

 

a body of art.

 

A few years ago I saw this tattoo  and loved it immediately. The work is so beautiful, colourful  and precise. 

 After having had surgery, and faced the prospect of having my breast removed, I love it even more.

what a woman!

Her name is  Inga Duncan Thornell and you can find more info on her tattoo  and her breast cancer story here.