Introduction

Sarvs Falefitu is a 40year old NZ born, Auckland bred Samoan/ Niuean. Sarvs is mother to four teenagers (Kroydon 19 years, Denae 16 years, Kendra 14 years, Grayson 13 years) and has been married to her 'Samoan warrior' for 19 1/2 years.


My gals, Denae (left) & Kendra

My boyz, Grayson (left) and Kroydon

I have breast cancer and so...

This blog has been created in the hopes that I could raise awareness of this 'evil influence that spreads dangerously', according to Collins English Dictionary, Compact Edition, to fundraise to cover the majority of my Herceptin treatment and hopefully this might help other women even in the tiniest way who might be living and dealing to breast cancer also.
I have Grade 2, HER2 positive type cancer and my cancer has moved away from the primary spot and invaded other parts of my body via my lymph vessels and blood vessels. Along with chemotherapy and radiotherapy I will also need Herceptin. NZ only funds Herceptin for 9 weeks but a full 12 months is recommended. I have opted to take the recommended 12 months and it will cost exactly $96,273.60. While some specialists are 'comfortable' with 9 weeks of Herceptin, I am not. I want to attend my teenagers graduations. I need to wave them goodbye when they go on their OE's. I wish to witness them all walk down the aisles, be present at the births of my grandchillens and finally do my big OE with my hubby too - of course without the grandchillens!!! Clearly I have far too much to live for and I implore anyone with time to please support my fundraisers or send any fundraising ideas our way.
Your support will make a lasting difference to my quality of life and I sincerely thank you all in advance for your love and support.

Accolades

Sarvs wishes to acknowledge the amazing staff at St Marks Clinic who at the early days of her breast cancer diagnosis helped and coached her through one of the darkest days of her life.Thank you Michelle, Beverley, Jenny, Tracey, the wonderful surgeons Stephen and Stan. Most importantly Sarvs would like to acknowledge 'Johnny' for having the foresight to establish a beautiful haven such as St Marks Clinic many years ago for women such as herself.


Breakdown of Herceptin costs

Since day dot Dr Mike McCrystal my oncologist has been apologetic of the horrendous Herceptin costs for HER2+ women. Nothing to apologise about Mike it is out of your hands and ours however look closely at what Pharmac and NZ Government are blissfully content in handing to a cancer patient and their loved ones -

Loading dose cost: (1 loading treatment)
Drug cost, delivery (+GST) 500mg $7018.65
Nursing $250.00
Medical $350.00
Consumables $35.00
Hospital charge $100.00
GST $969.20
Sub-total $8722.85 for loading dose at 8mg/kg

Maintenance dose cost: (13 maintenance treatments)
Drug cost, delivery (+GST) 370mg $5251.35
Nursing $250.00
Medical $350.00
Consumables $350.00
Hospital charge $100.00
GST $748.30
Total $6734.65 maintenance dose at 6mg/ kg
Overall total for full course: $96,273.60

So dealing with the diagnosis of breast cancer, losing a breast, having major surgery, being put through chemo treatment, being hospitalised 3 times, going through radiotherapy, getting through the remission period, dealing with the emotional side of this all and then having to fundraise endlessly for Herceptin do you think Pharmac or NZ Government have the right to play God with our lives?!!

Blog Archive

15 December 2008

A PRESENT FROM JOHN KEY

Firstly thank you ever so much for your continued support and extended love during the most memorable (for want of a better word) time of our lives - even after all the blogging and interviews etc still there are never ever words that describe the gratitude!!!
Secondly, fantastic news regarding Herceptin.
Herceptin and service will be fully funded for the full 12 months in the public sector.
My oncologist is referring me back to the public system to receive this. I will be on a waiting list so I don't know how long that will be until MOH and DHB work out payments and prioritisation of patients due to staffing levels. So I continue to pay until the administration has been sorted and I may seek reimbursement from November 19 onwards. That will be interesting but I don't really care about the reimbursement to be honest.
Herceptin not service will be fully funded for the full 12 months in the private sector.
If I am unable to get back to the public sector I will continue my treatments where I am at (Mercy Hospital) and again until MOH work out and start payments for Herceptin I will only have to pay for the staffing and service in the private sector which compared to the cost of the drug was piss all...!!! So I continue to pay until the administration has been sorted and I may seek reimbursement from November 19 onwards. Again I really really don't care about the reimbursement.
I have enough funds to continue in the private sector and in the meantime my oncologist would have sent the paperwork with his recommendations to MOH and then DHB work out the staffing levels and beds etc over in the public sector or if DHB cannot manage the transfers I will remain in the private sector for fully funded 12 months of Herceptin. Of course MOH and DHB will need to make sure that it happens within a 4 week timeframe as patients cannot go without Herceptin any longer than that. Otherwise MOH will have to pay another loading dose.
The sleepless nights have been minimised by the fact that I no longer have to worry about how soon the cancer might return because I only had enough for 6 treatments, thanks to National...!!! Finally a man who is listening...lol...and delivering good on election promises!
To all those super negative opinionated pratts that rant and rave on about the drain on society now this Herceptin is being fully funded and who haven't had the pleasure of being cut open, sliced, poisoned and burnt....
MERRY XMAS & SERIOUSLY U P YOURS!!

On a nicer note...to everyone who crossed my path, laughed, cried and supported me and shaped my life during my journey I sincerely thank you and bid you
good health, the merriest of Christmases and plenty of prosperous New Years's to come to you and your loved ones..


01 December 2008

Herceptin, my gold

Morning of Herceptin....
A relaxing and pampered start to my day, breakfast in bed, cards of good wishes signed off with lots of love and heartfelt hugs from my loved ones before they head off to school and work on the morning of my first Herceptin treatment....huh...not even.
More like up at sparrows fart to squeeze 8 hours of work into 4 from home after a couple of hours of sleep, in between sorting out the demands of selfish teens before shoving them out the door to face their world, fixing my own brekkie and trying to steer my head into the right space and out of the anxiety, stress and sad space before I drive myself to Mercy Hospital because my beloved couldn't be spared from work not to mention he had forgotten!
Anyway, truth be really known as great as it would have been to have had my beloved remember and fuss over me I know that he would have stepped out of his comfort zone so why worry about his feelings as well as my own to complicate my already fragile raw emotions that I have leading up to any blood test or hospital appointment or on this particular morning my first Herceptin treatment?

Reflection of Herceptin...
After several hours and 6 miserable attempts of finding a good vein, finally $8722.60 worth of gold (Herceptin) was administered. While I have no complaints about the public sector during chemotherapy there is a distinct feeling of absolute attention in the private sector.
On the 3rd attempt at placing the canular in my vein it eventually slipped out causing an air bubble to form at the back of hand which hurt like mad. The Herceptin had nowhere to go.
Anywho my oncologist nurse was immediately at my side to sort it out before my hand exploded - or at least felt like it!

Tips after Herceptin...
For women about to begin Herceptin and wonder about the side effects here is my lot to compare with:
- blood noses,
- diahorea,
- headaches,
- sore throat,
- achy lower joints,
- chest pangs,
- strange outbreaks of high fevers,
- rashes on my body and I still get really tired.
So sisters, continue to take it one day at a time.

Reflection after Herceptin...
One adult child, three teens and a husband of 20 years remind me all the time that I am mother and wife regardless of my health and in many ways it is a blessing in disguise otherwise it would only be about me, wouldn't that be boring and naturally can't be entirely healthy!

04 November 2008

My Breast Cancer Experience (North Shore Hospital)

Now the majority of my hospital experiences have been great compared to what I have heard and what I saw my sister put up with during her hospital stay so if there's one thing that I have learned from it all, it is to stand up and have a voice because it is your health and well being that health professionals are responsible for so expect to be treated with respect, tell them exactly what you are feeling and if you are ever in doubt demand another opinion or seek help where you feel more comfortable.

Unfortunately for me, today I had the displeasure of being subjected to the obnoxious manners of possibly an overworked professional who ain't getting any (yeah I know bit low - but it's my blog). But fortunately a survey put out by WDHB (Waitemata District Health Board) was handed to me before I met the bafoon. Briefly, the survey wanted to know about my breast clinic experience (North Shore Hospital) and what I would like to see improved...weeelll someone was smiling on me today because not only did 'he' cop a bloody earful from me but I put it all down on the survey and so that wouldn't get misplaced I also emailed the WDHB.

My email below -

To ______ _______

I was looked after by St Mark's Breast Clinic for everything from my mammogram through to my surgery and breast care. I had both my chemo and radio treatments done at Auckland Hospital. All clinics, private and public were wonderful. Then I get to North Shore Hospital this afternoon and my encounter with _______ _________ was worse than receiving my breast cancer diagnosis, surgery for removal of my breast and both my chemo and radio treatments.
My clinic appointment:
Degrading and I was made to feel like an inconvenience.
A waste of time getting time off work.

Information:
I was advised that public provided a free service so expect long waits for a mammogram but I wasn't going to get one done today. I told _______ _______that I hadn't had one since October 07 as I was waiting for this appointment. He said that he didn't think there was anything wrong and said I would be okay.
I was lectured and told I couldn't expect my oncologist to run around getting my files transferred because my oncologist was a busy man.

I was told that the private often 'dump' loads into the public.
I was asked how did I expect my oncologist to get my files (in a patronising manner).
I was told that I had to get my files from St Mark's myself and bring them to my next appointment so he knew what had been done on me.
A comment was made that as they were my own medical notes and file I should be allowed and given them.

Leaving:
Appalled and mortified to have been treated and spoken to like an idiot.

What I would like to see improved:
For the medical professions (public to private) to have a system in place for patient files to be tranferred.
Somehow driving to St Mark's requesting they hand over all medical notes and file and then driving to North Shore Hospital to hand them to _______ ________ for him to read through them thoroughly at my appointment seems odd as one assumes doctors read them before seeing patients.
A few months ago I requested to be transferred from St Mark's to public because I was trying to save and fundraise for my Herceptin treatments. After my brief encounter with _______ ________ as soon as I got home I made my own arrangements not to be transferred but to remain under the care of St Mark's after all.

I would rather pay to be treated with respect particularly after the harrowing year I have had as a breast cancer patient.

Perhaps I got ______ ________ on a bad day but he has left a bad impression with me.


30 October 2008

Friday 31st October, My Social

HAS BEEN POSTPONED UNTIL 2009....
My apologies to the folks that had pre-purchased tickets ahead of the event and to those that were purchasing at the door on the night.

M-Brace, Pacfic Dance Company

I had the privilege of being invited to an exciting launch of the newest Pacific Dance Troupe called M-Brace, Friday 24 October.
As it was Breast Cancer Awareness month M-Brace's PR/ Media Director, Jae'D Victor kindly invited my family and I as honoured guests which was very humbling because I had never met him before.
You know I really am not a prude but I didn't take my teens along simply because I didn't want them to be in a bar and then get the bug so early, if you know what I mean LOL...!! Man my age is definitely coming through!!!

Anyway my husband and I really enjoyed the entertainment and kick starting our long weekend in a great atmosphere meeting new people. So thank you to M-Brace and the wonderful people behind Pacific's newest hot dance group.
If you are looking for a hot dance group to perform at one of your functions please check out these young talented newcomers who do truly captivate the flavours of the South Pacific in one.
I understand their website will be up shortly for all to view.

M-

Brace

Performing Arts Fundraiser

September 26 I had my thank you speech typed up, my wardrobe set and dancing shoes on ready for a fantastic concert with amazing talents who were going to razzle, dazzle and knock our socks right off!!
With general admission set at a very decent $21 and the family pass set reasonably low I was to secure a further 2 treatments taking my treatment totals to 9.
We were going to be spoilt for entertainment, how could we not be with such a fantastically awesome line up!?!!

So I was exceptionally contained as I stepped out from behind the curtains to open with my heart felt speech that I had taken weeks to carefully prepare only to see more empty seats than full but I was not as composed when found that I hadn't secured anymore treatments from what should have been a 'rip your nightie' night.

The poor turnout, low number of tickets sales and no funds made to secure anymore treatments coupled with the feelings of devastation and anger hindered my desire to post on my blog for sometime. Fundraising had become a dirty word and a bloody nightmare. I hit a very big freaking stone wall and I needed to lick my wounds for a bit - sigh.
Okay so I'm done with licking of the wounds and I must must must acknowledge the fact that despite all that I cannot take away the fact that the artists with the heart of gold who came out to support my fundraiser carried the night and gave us all who were there with me on the night a truly magical show. My absolute heartfelt thanks to -

Dawn Raid Entertainment's Sweet & Irie, Devolo, Mareko
Nesian Mystik
Sweet and Sour (SAS)
Lil Saints
Legacy
Launch Band
Alofa Tunoa Ministry Band
Kelston's Bring It On
Polytentials

And of course to everyone who came to support thank you for carrying me through that night. Peace out!

29 October 2008

A timely reminder to "Just Stand Up"

It's been 36 days since my last entry and it's not because I managed to raise the full amount for my Herceptin treatment and then lost interest keeping the blog updated. Far from it.
It's because since September 26 I became absolutely fed up, frustrated, very disheartened and totally pissed off so expressing all that on my blog during the month of October would have made me look like a right twat and tosser.
I am in actual fact no closer to my target goal and I've delayed Herceptin because once I start and if I run out of funds before I get the 14 treatments which right about now looks likely, I have to fork out the cost of another loading dose.
I wonder if I can say f**k right about now on my blog and not get reported?

Anywho October surprisingly was harder for me than I expected.
Everyone knows that October is Breast Cancer Awareness Month (and if you don't I want to know what planet you are from) and ads ran relentlessly which I found hard to watch; Home and Away had Martha fighting breast cancer (and I am not a big fan of H&A but I saw it on the only channel that works on our poor excuse for a tv at work during my breaks) which made me feel more than uncomfortable; I had writers block and became a blog snob so the last thing I wanted to do was post on my blog and I will confess that earlier this year I registered to be a Pink Ribbon volunteer but instead on Pink Ribbon Day ashamedly I sat by myself like a hermit in a cafe at Mt Wellington sipping on my trim latte with one sugar (go figure) not giving a damn and cursing the 'c' word.

October was also the month I was diagnosed with breast cancer a year ago and those that should have remembered didn't and what should have been a celebrated milestone wasn't. So that kind of almost sucked the biggest muddah chucka kumera until the day before my first anniversary my friend Karyn sent me an email that opened the floodgates, unleashed the dragon (LOL), cleared the demons and slowed the profanities out of my mouth.
Karyn's message consisted of only 10 words yet they were priceless particularly at a time when I wanted to slump around with a permanent one finger salute to the world.
It was exactly what the doctor ordered and what I needed to hear because I was about to lie down and give up the fight.

The first anniversary of a cancer sufferer I am not sure will be easier on the fifth or the tenth anniversary but I will find out and will share it with others.

JUST STAND UP for Cancer!!!!
(check out the link: http://www.youtube.com/watch?v=Mr5mvNPyV1I)

24 September 2008

What's the next hardest thing...?

What's the next hardest thing after a cancer diagnosis, a full mastectomy, chemotherapy, radiotherapy and raising teenagers?
Fundraising. If it weren't for that then it could have been raising teenagers but 8 months on since we started most definitely it has to be fundraising.

The support I've had with each event has always been overwhelming and always you lose yourself in the atmosphere. An atmosphere of absolute elation and unspeakable gratitude to immeasurable heights but it's always the lead up to fundraising events that strikes the absolute side of my human nature that I detest with a passion. Runaway stress, burning anger and rotten guilt just to name a few.

It's a toughie and one I struggled with while still in treatment hence the reason I dipped out from the fundraising committee matters. And really who needed to have a bald woman released from hospital, high on steroids, sleep deprived and erratic at the best of times attend meetings??? But even without that bald woman on steriods at those meetings you have to truly appreciate the committee's efforts because it's bloody hard work not just physically but mentally.

The flip side to all that are close family and friends who see you through it and the generous folks that think nothing of sending donations and the well wishers who support with their presence and the strangers who give something of their experiences to help another stranger and the true friends who encourage from the front (be it email, phone calls, lattes or vino catch ups) and prominent figures who help to further my cause and the new relationships that are formed and old ones that you wondered if they still existed but now you know for sure they don't so you no longer have to wonder about...they are blessings worth counting because they all far outweigh the downfalls of fundraising.

What's the next hardest thing after fundraising?

Finding another way to sincerely thank from the bottom of my heart the many, many who give up their time, finances, love and themselves. I mean how many ways and times can you say "I cannot thank you all enough, thank you, thank you so very much"?

13 September 2008

Helpful hints to all the sisters out there

Just the other week while waiting in the oncology reception area I saw, if you like, a new graduate class of cancer victims waiting with bandanas, beanies or scarves for their chemo treatments. I flashed anyone who caught my eye a reassuring 'I know I have been there' smile and then pondered the last 11 months.
Next month I will have completed and won the first year's battle against breast cancer with many many mixed emotions both good, bad and down right hilarious!

A wonderful work colleague I met years ago just the other day sent me an encouraging letter and the book, Surviving Breast Cancer by Carolyn Weston which I devoured in one night. I got so much out of reading the living stories of breast cancer survivors I couldn't put it down and would thoroughly recommend this to others out there who have come face to face with cancer!

I think it would be timely to include helpful hints for women out there who are about to embark on the most bizarrest trip of their life!

1. Be kind to yourself (why put yourself through the stress when you don't need to or it) and take to heart the old saying, 'one day at a time' and practise it

2. Keep a positive attitude because there is always someone else out there that is much worse off than yourself

4. Cry and don't hold back even when the kids look at you sideways and the neighbours can hear

5. Surround yourself with good, strong, honest and crazy people

6. Rockburn Pinot Noir or Falling Waters (Chi'i with 42 Below Vodka Feijoa flavour & if you have time a slice of cucumber) in moderation of course...buwahahahaha

7. Ask every specialist you see 101 questions because it is your right and your health

8. Tell your loved ones when you are having the day from hell and need 'head clearing' space

9. Accept help from everyone that offers it

10. Take someone with you to all your appointments particularly if you are having chemo for a good chinwag and someone to drive you home (applies to radiotherapy appointments as well)

11. Expect to have meltdowns throughout the entire journey - even during the 11th month - and don't beat yourself up for it either, just get up and get on with it.

12. Take a chill pill and decide not to stress the wee things that don't really matter in the bigger picture

13. Don't expect too much from your partner and remember you will get through it all - together whether it be kicking or screaming

14. Cancer doesn't make your family immune to 'teenage dramas' or life in general so pick your fights carefully and reserve your energy for the unexpected

15. Celebrate every milestone and share your experience with others because I know those that shared with me helped me more than they will ever come to realise.

28 August 2008

***PERFORMING ARTS FUNDRAISER***

No I.O.U's or excuses peeps just put your money where your mouth is and come and support my Herceptin fundraising event. The last concert we held was fantastic so this one promises to be another fantastic night of fabuloso (as Mariah Carey would say) entertainment.

Once again Kelston Boys High School have come to the party and allowed us the use of their premises. The Kelston community have gotten behind me all the way since day dot, you guys just freaking ROCK!!!
The committee have put together a performing arts fundraiser this time, so come and check out Kiwi's home grown talent in the form of Lil Saints, Legacy and more.
Nesian Mystik's will grace the stage with their unique poly sound - thanks guys! And Dawn Raid Entertainment have jumped on board with the likes of Mareko and more fantastic talent!!
All this will be happening at Kelston Boys High School on the corner of Archibald and St Leonards Rds, Kelston on Friday 26 September and kicks off at 7.30pm.
For those working, studying or on your way to Friday night drinks in town, tickets can be purchased from Real Groovy Records in Queen Street OR contact either Las 021 2643164 OR Epe 021 1524832 with your name, number and the number of tickets that you require.
General Admission: $21
Family (2 adults & up to 4 kids 6-12yrs): $60
5yrs & under: FREE
Door sales: $25 (Limited door sales)
Doors will open at 6.30pm and for one night of the week NO ALCOHOL PERMITTED (buwhaahaahaa)

There has been loads of time, heart, sweat and soul put into organising this night and it would be fantastic to have you all there to witness, be a part of the support network and fill the hall to absolute capacity....so grab your rallies and mates and come out to scream the house down with us!!! And if you were at our last concert the adorable and hilarious Yolande Ah Chong will be Queen of Hosts for us again...bless ya gal..!!


24 August 2008

I've aged 20 years since Oct 07...

I've been preoccupied with other areas of life to be blogging lately however this is no means the end of my trials and tribulations or joys and truimphs - pull out the violin's.
But it would be quite timely to mention that cancer does not exclude the trauma stages of teens nor does it make them take the easy road to adolescence out of love for a mother with breast cancer.
I had hoped that my family could have escaped the terrors of teens but just as I did not escape cancer nor have I escaped the troubled teen stage - sigh or shite as has been the case of late.
Again I figure that if I could live through a mastectomy, chemo treatment, radio treatment, side effects and tonnes and tonnes of yucky tests then it should have toughened me mentally and emotionally for other parts of my life and many times throughout the past months I have survived the day without cracking - just.
Anywho, with everything else that has just snowballed in our lives lately, I haven't forgetten the kindness people have shown in our time of need nor would I intentionally not mention the hard work people put in for my Herceptin. Far from it, it really is a case of tending to other matters that is not cancer related even though I would liken it to cancer sometimes...LOL...I wish that chemo could kill some of the behaviours of our teens and radio would burn out their desire to grow up too fast - and I heard all the mum's out there say 'amen'.

I begin Herceptin in 6 weeks. I'm not looking forward to the needles or the bloods but I will be looking forward to 2009 when I will look back and sigh with relief that I got through the cancer treatment and I survived another year in one of the hardest roles in life...parenting (through cancer).

19 August 2008

DON'T FORGET TO PURCHASE YOUR $5 TICKETS FOR THIS HAMPER (Alcohol, choclates & meat vouchers)


This hamper will give some lucky person several last minute birthday or xmas pressies or you can crack open a bottle with friends over a few winter dinners!!


ALCOHOL HAMPER (valued at over $250.00)

Includes

1 x Bombay Sapphire (Gin)

1 x 42 Below Feijoa (Vodka)

1 x Jim Beam

1 x Alize (blue)

2 x Lindauer

2 x Cabernet Sauvignon

1 x Sauvignon Blanc

1 x Chardonnay

1 x Deutz Marlborough

Plus a delectable variety of chocolates
AND
$100 meat vouchers
(kindly donated by Mad Butchers with an expiry date of October 08 hence the addition to our wonderful hamper !!)

Tickets ONLY $5.00

If you would like to buy a ticket email all4sarvs@yahoo.co.nz (subject: hamper).
Drawn under Police supervision the winner to be notified by 1st September 2008

Che che & thanks for ya support,

18 August 2008

Demons, Sunday roast and piddle patch

OMG we have been slogging it for nearly 8 months now and when updating the 'What's on the board Miss Ford' section, the number of treatments secured doesn't seem to have increased for months which is probably because it hasn't and the total amount is still daunting not to mention an absolute pisser...LOL (well hey what else can you do aye?). It hasn't been without effort because the effort has been huge and the support has been undying.
My committee on the face of it has changed somewhat but the commitment is still there. I've been absolutely blessed by the ongoing work from them while I have silently challenged the demons in my head and slowly lost my marbles....!!
Not only fighting demons, I unfortunately still have many many senior moments (does being 40 qualify for 'senior moments'?).
One Sunday before heading off for an afternoon nana nap, I prepped our Sunday roast. Oven turned on ready for the beef, potatoes, kumara, parsnips, pumpkin, garlic...mmmm...anyways, prepped it all and headed off for my nap. Ashamedly, I ended up napping for 2 1/2 hours!! Fortunately I didn't burn the roast or the trimmings because unfortunately I forgot to put it in the oven...sigh...
Another time, Ice our pup did a bit of a wopsie on the floor unbeknown to me. Heading towards the piddle patch my husband stopped me and warned me Ice had had an accident so don't step in it. So I don't step it but I plonk my handbag right in the middle of it....hastily picking it up I walk off to wipe and clean it off annoyed with Ice. Not finishing what I needed to say to my husband, I drop my handbag away from the piddle patch and then bloody stand right in it...I'm not annoyed anymore, but in hysterics at myself!
My brother inlaw kindly loaded the pics from our golf fundraiser on his work memory stick - months ago...I put it in a safe place, so bloody safe that not even I can steal it because I don't know where the safe place is...sigh...
Hand over heart, laughter is truly the best medicine. Even the demons in my head that come out occasionally have to go away and laugh!

07 August 2008

I AM SO PEED OFF...!!

To watch a fairly young caucasian male and an Asian women with Dr as her title, sit in front of the nation including women with families and friends who are struggling to fundraise for Herceptin and lie to our faces that their idiotic and pathetic excuse to yet again decline women with HER2+ breast cancer the full 12 months of Herceptin and then have the audacity to lie and pretend that it has nothing to do with money absolutely infuriates me to no end. How dare they put my family and friends under so much stress and pressure. I could guarantee that one of their annual salaries could comfortably pay for majority of my Herceptin treatment too.

I watched the news with my family and I knew that they would be disappointed but I didn't realise that the reaction from my teens would be so strong. We don't promote swearing in our home but I knew they wanted to and for the first time I wouldn't have batted an eyelid if they had. The spokespeople for Pharmac did not even sound or looked convinced themselves - WTF!!!


My vote is going to National and I am sure that many of the women with HER2+ breast cancer and their families and friends will swing their votes this way too because as they said Herceptin has now become a political issue, and Labour hiding behind the skirts of idiots who at Pharmac can kiss their votes good bye.


Labour and Pharmac will be held responsible for all the women in NZ who have HER2+ breast cancer. Cancer is cancer.


20 July 2008

So where to from here...

More freaking fundraising...sigh...for more treatment...sigh...but on the plus side I could even try to get my fat thighs and ass to the gym eventually to start shredding some of the chemo kilos. Okay who am I kidding, teensy weensy baby steps first. I will continue to take our puppy out for walks in the afternoons firstly to oil the almost ceased up bode and then progress s-l-o-w-l-y back to recommence my fitness programme that I had started before I started chemotherapy back in January.

Ice, pictured on the right (our pitbull cross dogo puppy who is now 4 months) took me for a power walk today and when I say power walk I mean he flexed his power (brat but oh so cute puppy) on me by pulling me along our street. I must have been a sight in my ware-whare designer gummies, beanie and long jacket trying to stay balanced...LOL! Of course having had no strength training on my right side or either of my sides for months (okay, years) I used up all of my energy and what was left in the reserve tank trying to be the boss....and failed....and I kid you not, almost fainted at our doorstep when we got back home. Umm I have to confess we live in a very big like fish hook avenue and I only managed to get halfway round it before I had to turn back - we live at the top of the hook end...pathetic I know!....

Alright, this week a call to the oncologist to discuss when I start Herceptin, blood tests for my PVT and results (which I am meant to have at the beginning of every month but I forget or have managed to talk myself out of going to the bleeding room - naughty I know) and finally bring myself to not just book my breast clinic appointment but also remember to attend it for my ultrasound and check up on the new boob. I still have my $1 pocket diary for appointment entries trouble is I forget to enter the bloody appointments....ahh sigh...
DON'T FORGET TO PURCHASE YOUR $5 RAFFLE TICKETS FOR OUR HAMPER!! thanx

19 July 2008

Nuked no more...

I was nuked for the last time yesturday. There was a feeling of excitement, relief and sadness.
Excitement and relief that another phase of my treatment plan had been completed - another chapter closed.
And sadness. Every day for 5 1/2 weeks you allow yourself to become involved to some degree with a team of specialists formed not by choice but for my convenience and my welfare.
My MV4 Radio team made everyday as fun and as seamless as possible. Obviously the necessary qualifications and skills are needed to be there in the first place but you also needed to have that 'x' factor personality to preoccupy, entertain and nurse patients through radiotherapy treatments. Sadly, I will miss them and it will be totally weird not getting called to change into the sexy hospital gown and having them move, shift and mark me up for treatment ever again!
Plus the warm friendly greeting I would receive every afternoon. I will miss Selina with the lolly jar (or was it Serena, oh gosh forgive me, I'll blame the treatment!!!!)

Fatigue. I managed to cope with this through treatment and it has been a different type of fatigue to the chemotherapy fatigue.
Radio fatigue has been constant because good cells were being killed daily and the energy needed to replace the good cells - well it completely overcame me; early on in the piece I gave up fighting it and learnt to listen to my body. So when my eyes could no longer physically stay open, my brain mentally started to shut down and the body went from lethagic to a comatose state, um it was a clear sign to rest completely and my household stopped....hahahaha! Apparently I am to expect to continue to feel the fatigue for another 6 - 8 weeks.

The visible side effects came in the last week of my treatment by what my daughter describes as a huge as hiki - charming! The areas where I've had treatment are clearly visible now and looking like I have been burnt it is also irritable and sore to touch. Time again will heal.


Next chapter, Herceptin.

Angela, Andrew and Dominic - thank you, thank you, thank you!!

11 July 2008

Happy memories banked for life

Toilet bag packed.
Travel bags packed.
Gummies cleaned and packed.
Checklist checked again and again, just in case.
Thunder and heavy rains would not get in the way of this trip. And this time it was not to Acute Oncology at Auckland Hospital!

After a very turbulant 45 minute trip from Auckland to New Plymouth I had finally escaped the daily reminder of cancer. Away from the hospital appointments, oncologists, radiotherapy treatments, blood tests and fundraising for Herceptin.
Actually the only thing that came close to the pains of cancer was the daily Clexane injections for my blood clots but other than that the fantastic group of parents we travelled with, the great netball games witnessed from the sidelines, the enjoyable relaxing evenings over wine, cheese and crackers with the groupie parents, the constant laughter, the snow and our Wellingtonian family who travelled up to New Plymouth to see us too...aaahhhh I didn't want the great feeling of triumph, freedom and happiness to end....and it didn't. Our U15 Netball Waitakere team coming 3rd out of 37 teams and having three of our players selected for the U15 Tournament Team 2008 definitely truimphed over the minor health issue that I encountered in New Plymouth.
I lived for every minute in the moment and it was just the best, the absolute best!!

Many happy memories banked for life - thank you everyone...

02 July 2008

Week 3, radiotherapy

Regularly I feel nauseated, there is tingling and numbness in my right arm (which is not from radiotherapy and more than likely from surgery and chemotherapy), tenderness around my right breast and for crying out loud I have an almost rock hard cement pocket for a breast but it is normal while going through radio and normally subsides and goes back to normal sometime after radio is finished - phew coz it cost a bit that new boob job!

My longsuffering hubby or my darling mate Treez pick me up from either work or home and drive me to and from radiotherapy treatment. I had all intentions of driving myself there and back BUT am very grateful that I don't (and so will Auckland commuters) because immediately after treatment I am doggone tired and can bearly keep my eyes open!

The reason for the fatigue I have been told is because radiotherapy kills the cancer cells from the original site but also kills off the good healthy cells (didn't that think I would have any left after chemo) so my body is using a lot of energy making good healthy cells again. When I get home my family no longer ask what's for dinner because I have already hit the pillow and fallen off to sleep.
I listen to my body a lot more since cancer because this is my second shot at life so I want to preserve and look after me a lot more. It's not selfish and I've learnt to be much kinder to myself.
Far out it took cancer for me to treat me right, look after me better and to be much kinder to me and while it might appear to be all about me it isn't really in the end because if I am not well then my family suffers. So if you look after numero uno, numero uno can be there for everyone else.

JUST A FRIENDLY REMINDER






29 June 2008

Just to recap....

  • I've had my whole right breast removed.
  • I've had a breast reconstruction done.
  • We started fundraising for 12 months of Herceptin.
  • My reconstruction has been fully completed.
  • I have finished 6 courses of chemotherapy.
  • I have received 9 weeks of free Government funded Hercetpin.
  • I have completed 14 radiotherapy treatments.
  • I am back at work.
  • I have another 11 radiotherapy treatments to complete.
  • Fundraising for 12 months of Herceptin continues.
  • My Herceptin treatment will begin after my radiotherapy finishes.
  • I inject daily for 6 months for blood clots in my lung.
  • My complete cancer treatment plan will finish in 2009.
  • I am due for my breast check at St Mark's Breast clinic and nothing anyone says will put me at ease until after I get my results.


27 June 2008

Sisters are doing it for themselves...!!!

In a society where just anything we need for schools, sports or clubs has to be fundraised it is very unfortunate people are having to fundraise for their own cancer treatment as well.
When I get tired it infuriates me to think about fundraising for a chance of a longer life when one really should be concentrating on treatment and recovery.

So we now have another wonderful cancer support network group and a fantastic answer to the prayers of the many women out there who have to deal with cancer and fundraise for Herceptin.

I implore you to take check out this website that not only explains why and how but so you can pass it onto others who are also in the same boat as myself.

...ho hum ho hum...

Blow me down, I'm so freaking exhausted after 14 radiotherapy treatments already that I feel I have aged another 20 years!!
Yesturday my son and I spent the entire day in Acute Oncology for sharp shooting pains up my right arm, where I had surgery and lymph nodes removed, into the right side of my chest, where I have a history of blood clots in my lung.

From acute oncology (Level 4) I was wheeled to radiology for an ultrasound by a contractor who works part time at the hospital. If he hadn't told me that I would've guessed it anyways especially as I was pretty sure I heard we were going to Level 2 but we took the lifts to Level 6 and waited about 5 minutes for someone with an access security card to let us down to Level 5 only to arrive and wait another 5 minutes to then be told we actually had to go to Level 2, wait another few minutes to be let in the lifts again it all made for a bit of Benny Hill comedy.
Anywho, the ultrasound came back clear of any other clots (thank goodness) and I have been scheduled in for other tests in the next couple of weeks because the sharp pains are not a side effect of radiotherapy.
As I lay on the table for the ultrasound I was instantly taken back 8 months ago to the day of diagnosis after 'the' mammogram and 'that' ultrasound.
I became quite emotional thinking back to where this all began and shed some quiet tears.

Three more weeks and I begin Herceptin.

26 June 2008

Our Variety Fundraiser Concert

Leading up to our Variety Fundraiser Concert I was a frantic nutcase - and I was not even performing! My speech OMG sucked...LOL...but that was because I was still being a nutcase but at least I was being a bit quieter...!!!

In hindsight this is was going to be my Oscar award winning screech, oops I mean speech -
Thank you to all who gave up the Saturday night footy, the comforts of their homes on a cold and wet night to share this evening and to support my fight with breast cancer.
A dear old friend once said that cancer is not about me but about our family and friends. That was so profound that I have not forgotten her words because the reason why I stand here tonight is to fight to survive so that I can continue to make memories for them; memories that I am entitled to make as a wife, mother, daughter, sister, friend etc etc etc.
To my family, I am dearly grateful for you all. Much alofa's, you will never really know.
To my friends old and new, thank you for being here to share another milestone in my life; a special mention to my friends who travelled from Whangarei and Palmerston North, how blessed am I to have such support in you all.
Our beautiful PI MC and gifted artists, who I know will rock your socks off, thank you thank you for giving up your time to be here tonight. Most of you I don't know from a bar of soap, you are all amazing.
To my dear friend Saylene our stage manager and her partner Pat, you guys are just freaking awesome coz I wouldn't have a clue!! Thank you for taking that daunting task away from us!!
To Marama and crew from Tagata Pasifika, the opportunity to capture this I am grateful for!!
My wonderfully patient committee, for pushing me, encouraging me and helping me keep it together, words just are never ever enough, fa'afetai mo le alofa!!
To my darling husband and chillens, this will all be a distant memory one day however because we are all here to make it a treasured memory, this fight will be worth it in the end. I love you so very much.
I know you will enjoy this talented line up tonight, please enjoy with us!!
Thank you.

My heavy metal/ rocker mate from Whangarei who brought his lovely family down for the concert and sacrificed the All Blacks game said that not only did they 'sooooooo enjoy the concert' but he took away with him the fact that media waste too much time on youth gangs and youth crimes when the flip side to all that was the awesome talent (from west, north and south) that was being showcased in Kelston for a stranger they had not met who was fighting breast cancer.

Thank you to my cousin Efu Koka (who is running for councillor for Otara as a Labour candidate- VOTE FOR EFU KOKA hey what are family for aye...!!) who asked Su'a William Si'o to be our guest speaker. Fa'afetai Su'a William Si'o.
Lastly, thank you to our very old friend Iate who weathered the cold and wet to stand security for us for free - YOU ROCK OUR TONGAN BROTHER!!!

The gorgeously witty Yolande Ah Chong our MC for the night with Pili Apulu (left)

Pili and friends



Above: The Roadies


The Alofa Tunoa Ministry Band



Our southside brothers, Cydel



Kelston's own Polytentials



Betty Anne and Friends (centre, Florence - didn't know you were part of the "Friends" hahaha)

Ash (centre) with her blues mates



Allegro and Grace Ikenasio (second from left)

Pacific song bird Grace Ikenasio who lifted the roof off with her finale song Listen by Beyonce

During intermission we sold beautiful cupcakes (pictured above) made by the CakeMaker (http://www.4goodnesscake.blogspot.com/), yummy pork buns made by my mother inlaw, scrumptious puni popo or coconut buns made by my Aunty Fatima and other delicious baked goods by Lily Huch and Margs friend who baked those beautiful as carrot cakes!!! Thanks so much!!

PS: all the funds raised from the concert has been stashed in a cash box and the keys were handed to me. I placed the keys in a really safe place. So safe that I can't find them at the moment and the more I panick about not finding the keys the more I spiral into the world of amnesia! When I find the key I will count the funds again and post it on my blog...!!!

NB: aha, found the keys and the cash is safely stashed in the Herceptin account..!

And behind the scenes on the concert night...

Committee setting up for intermission. Tulili (left) and Kendra (did you pay for the cupcake in your mouth?)
Tulili and sister Las
Tulili (again...lol) with sister Mary
Hubby and I taking time out for the camera's...watever...!!
Ex-Kelstonian Kroydon stretching before mopping the floors...BWAHAHAHAHAHAHA...
Another Kelstonian, Grayson with our stage manager Saylene...KELSTON WAT!!
Margs (forefront) and Tulili manning the food during intermission
I really did appreciate our stage manager coz like I said I didn't have a clue!!
Saylene's stage crew. My brothers David (left) and Alan (right) with my hubby centre (of attention...BWAHAHAHAHAHA)




14 June 2008

How times change

November 2007
A few days after the diseased breast had been removed I called for the night nurse to come and help me out of bed to go to the toilet.
I'm in a private hospital where most women I had met had had cosmetic breast surgery and I'm the only one there at that time who had a mastectomy.
The night nurse who had just come on duty appeared to be quite short with me, telling me that I needed to help myself if I wanted full recovery quicker. I wanted to tell her to eff off but I didn't coz I really needed to get to the freaking toilet without too much pain!
Anywho the next night I call the same nurse into the bathroom to help me unwrap the bandages before a shower. She arrives more relaxed and as we unravel the bandages together I deliberately look away and stop talking.
Even in silence I hear her pity.
With my hand over my mouth for fear of screaming, for the first time I force myself to look at myself. Life could be so very cruel. I had never given my breasts too much thought and had taken it for granted that I would have them for life. Now I was looking at a deformed breast and I was totally and utterly devastated and I was embarrassed. I cried while my nurse held me and consoled me for a while.

January 2008
The first time I was admitted to hospital I had a lovely Tongan nurse who one night while completing my 'obs' asked me in her very thick accent, 'how many tids do you have?'.
Taken aback I wasn't sure if it was a trick question and how to answer her. Did I say that I have one real tit and one fake tit or that I have 1.5 tits because I havn't completed my injections for my implant yet?
Fortunately I was still thinking of how to answer her when she then proceeded to then ask me, 'how old are your tids?'
OMG did I feel like a right ass when I realised that she was asking me 'how many KIDS did I have have not how many TITS did I have??!!!

June 2008
For radiotherapy I have 2 young male nurses who attend to me each day.
They see my breasts each session and are constantly looking at them to ensure I am microwaved in the exact spot daily.
A year ago I would have been uncomfortable at the prospect of being bare breasted at 40 in front of 2 young male nurses.
I was uncomfortable with the look of my new tits but I don't think twice about them anymore.
I am excited about the my new nipple that will be tattoed on eventually after my radiotherapy.

Big Ups to....

Along with the many individuals and families that have kindly donated to my cause I would also like to thank the organisations/ businesses who have donated and/ or gifted time/ merchandise -

TelstraClear - http://www.telstraclear.co.nz/
Mad Butcher
Fortress Fasteners
GJ Gardiners
Godwear T-Shirts http://www.g56creative.com/
Kelston Boys High School
Kelston Community
The Cake Maker www.4goodnesscakes.blogspot.com
Panasonic
Telecom - www.telecom.co.nz


(Will be updated continuously)

Concluding my first few days of radiotherapy...

The recent poll placed on my blog closed and while only 26 voted it was conclusive that Pharmac should pay for a full treatment of Herceptin.
I started radiotherapy midweek and just as I expected it hit me immediately.
Sore throat, itchy, fatigue and I am fairly sure some of my brain cells are being microwaved on high!!
My week has been a right shite of one bringing unwanted challenges and a huge mother of a mental meltdown. Yip even after chemo the freaking demons lurk - not for long but they were in full force and unfortunately a couple of my chillens bore the brunt of it one morning.
It is never ideal to have your children witness their mother crack under it all and I am not proud of myself but given the trauma of chemo I'm not beating myself up about it - I can't otherwise I may as well throw away the key and be done with it.
Fortunately the honesty policy set from the very beginning prepares them for the occasional MMM - Mum's Mental Meltdown...LOL...!!..
For every bad day I've had, I've had that many more fabulosa days.
For every bad turn I've had, I've had many more positive outcomes.
For every being who disappointed, I've received and will continue to receive genuinue love and support.

Just about anything they have said that might happen while undergoing chemotherapy and radiotherapy has happened (I am laughing, how could you not!) and I am taking this as a good omen.
I believe that once all my treatment plan has been completed the cancer will be completely gone and will never come back.

05 June 2008

Just one minor thing - please

One major hurdle others have experienced through my journey has been the uncertaintity of what the correct thing(s) to say to someone diagnosed with cancer would be.
Those I speak to eventually after hearing of my diagnosis now know that apart from a new breast, 10+ extra kilos and a bald head, my sense of humour is still intact and I am as crazy as ever if not worse. I'm comfortable talking about my cancer experience because sharing spreads knowledge and hopefully early prevention.
I have experienced emotions that I am not familiar with and am still learning to deal with those but on a whole nothing compares to the day of finding out.
If one can get through diagnosis, surgery, chemo treatment and it's side effects then one should be able to get through the many excuses of those that say that they will, know that they won't, blimin don't, continue to say they will and then you never hear back from them.
Understand we all have lives and I realise my urgency is not everyone elses urgency but don't interupt my journey with empty promises of support and then 'poof' disappear without another word.
Thank freaking goodness my fam bam, close friends, new 'sisterhood' friends and the many strangers I have encountered along the way have made every other moment since diagnosis an absolute hoot.

I start 5 weeks of radiotherapy next Wednesday (11.06.08) and have asked my oncology team if I can delay Herceptin for as long as safely possible, not to mention if I can take 2 days off from radio in July to fly down to New Plymouth...he asked me if there was anything else I wanted to which I replied nah not right now. I think he thinks I am nuts but he did say he would let me know if all my wishes will be granted....!!

30 May 2008

PHARMAC

It is no secret that Pharmac are holding out on funding Herceptin for many women like myself who have early stage HER2+ breast cancer.
Pharmac will fund Herceptin for women who have advanced HER2+ breast cancer, so in other words where cancer has progressed too far, is uncurable and only have, in most cases a matter of months to live.
It is bittersweet to know that Pharmac will do this at least for women with HER2+ advanced breast cancer. Morally, Pharmac have to and those women deserve a prolonged life with loved ones.
I mean who doesn't deserve the best shot at life? Well according to Pharmac, women with HER2+ early stage breast cancer don't deserve that - or not yet anyway, not until the cancer has progressed, is uncurable leaving one with just a matter months to live.

Early prevention of HER2+ breast cancer and providing a cure (i.e., Herceptin) is not on Pharmac's agenda and that like every other women fundraising for their own Herceptin while undergoing other cancer treatments just absolutely sluts me right off!
Who gave Pharmac the right to play God with our lives? Would we be funded if Jackie Evans was diagnosed with HER2+ early stage breast cancer? Would it be any different if a MP's family member was diagnosed with HER2+ early stage breast cancer?
Take away the words early stage or advanced and you are still left with 'breast cancer', there is no difference when you have no breast left but a scar reminding you of an ordeal you wish on no one.
Pharmac please don't wait until a HER2+ early stage diaognosis becomes HER2+ advanced - even my 13 year knows what is morally right.

If you're having to fundraise for your Herceptin treatment you can make an online submission to Pharmac through Breast Cancer Aoteaora Coalition's website - www.breastcancer.org.nz and also complete my poll survey on the right hand side of my blog.

http://www.breastcancer.org.nz

I've made my online submission. Secretly I know Pharmac will decline to fund Herceptin but if you don't ask you won't get. This will not be the last time I ask either.

28 May 2008

Where I am at

My hair is growing back ('dandelion' hair as described by one of my girls) but it is still falling out, so I will shave one last time so that my hair doesn't grow back in patches and I can't wait to take the tweezers to my eyebrows when they grow back completely although I will miss not having to shave me stumps. And even though I have finished chemo I still need my $1 pocket diary for safe measure because I am still forgetful and suffer from short term memory loss, regularly. I get frustrated with myself when I remember that I have forgotten things or when I stumble through sentences too often. I can't believe what I hear sometimes...!
I am back at work and by midday I am yawning, trying hard to stay focussed and awake which actually takes it right out of me. Trying to remember what I just read or heard eats me up because I have to read things many more times over before I can remember and I feel stupid when I have to ask people to repeat themselves again and again just so I know I got it right.
The old appetite is slowly returning although there are many times when I have to stop and think about what it is I really feel like eating. I try not to eat for the sake of eating and am learning to be a bit more selective.

I still carry the extra weight around and think that it will be sometime before I will drop it but really that is the least of my concerns.

Even though I have finished chemotherapy the after effects linger around a bit longer.

21 May 2008

My blessings

I first told my chillens on Sunday 21 October that cancer would never be an excuse to give up nor did cancer deserve pity.

My oldest took me to hospital the first time round when I got sick after chemo.
He called in sick at work that day advising his supervisor that he was in hospital with me.
The next day when he got back to work the ladies asked after me. My son replied that I was still in hospital. Naturally they asked him if I was okay.
My son replied very matter of fact 'oh she has cancer' and then continued on with his job. Mouths just dropped. They had no idea.
When I got home from hospital I thought I would sleep for the rest of the week. After 2 days of sleeping my son sat at the edge of my bed and told me quite sternly that I couldn't sleep the rest of my life away so I was to get up and he was taking me to the zoo for a couple of hours.
I got up quite embarrassed, dressed and enjoyed an afternoon at the zoo.

While tackling the chemo effects one time I told my younger son out of frustration over the fatigue and body pains that I really hated my life at that moment. He told me off and said that I would need to be positive to get through that moment. It turned into a lecture and again I was embarrased with my outburst.

My girls have also put me back on track on days where I could have shut the whole world out of my room and slept on reminding me that I wasn't to let the cancer or chemo get the better of me.
One day daughter 2 came home with a programme that had been offered to her.
The programme provided a counsel like service for troubled and/ or traumatised teenagers. She asked me why I thought they gave it to her. I replied it would be because I have cancer.
She looked at me like really that is not a good enough excuse and then walked off to make herself a hot chocolate still baffled. The pamphlet lay around the house for a couple of days ignored and then I binned it.

Parents with cancer your acceptance of your diagnosis, your positive attitude about your life, your open conversations and discussions about how you are feeling at any given time and your love of life because of them certainly helps the healing process.

A day in the life....

I've had my CT similiation for radiotherapy where they measured me up and gave me my tattoos so that everyday for about a month I get zapped in the exact spot to make sure that any remnants of cancer from the original site that may have been missed with chemo (how could that be possible!?) is done and dusted.
As I lay there through the huge donut I took stock of what chemo had put me through over the past 5 months - boy you wouldn't wish it on your worst enemy!

I had an anxiety attack on my way to work this morning. I almost turned around and came back home. When you have cancer and have been through chemo and had to deal with the side effects for what seems like eternity, the normal and the familiar can seem so foreign and lonely.
I took a trip of a lifetime that I never booked or planned.
Everything that could have gone wrong, certainly did.
Surrounded by uncertainty and fear I travelled with many others on this unplanned trip, others who knew exactly what it was like to get a bum wrap deal from life.
I had been with my new found friends on this trip for so long that today I was too scared to face normality without the crutch of my 'cancer' friends.
Tears rolled freely down my puffy face as I thought of all the terminally ill victims I had met on my trip and wished them another day with their loved ones.
This part of my trip has been completed, thank you to every beautiful person who travelled this part with me. Stay with me as I continue my trip.
As you can read I survived today, as one does.
Tears roll freely down my face tonight as I say to myself, I am a breast cancer survivor.

13 May 2008

Breast Cancer Walk for Life

***Please note this is NOT one of my fundraisers***

THINK PINK - Breast cancer is the leading cause of cancer deaths among women. Over 6 women die of breast cancer each day, that's over 600 mothers, daughters, grandmothers, aunts and cousins each year.

Mammograms are free for women over 45 - 69 but how many Pasific women are taking up this opportunity?
We plan to walk around One Tree Hill and then hear from our special guest Luamanuvao Winnie Laban.

WHEN: Saturday 7 June 2008
VENUE: Cornwall Park
Tickets: $30.00

Programme includes:
- 6am walk for 7.30am breakfast
- Guest speakers
- Mystery prizes and on site auction/ raffle
- Music performances from Natasha Urale-Baker

Come and support this event and help spread the message to our Pacific women.

For tickets and more information, contact: Sandra Kailahi Sandra.Kailahi@gmail.com

12 May 2008

Deja vu

So one week ago today I was sitting outside oncology an hour and half before my chemo appointment grinning from ear to ear gearing to get my last chemo done and dusted. As predicted I felt rotten without too much delay shortly after.
3 days after my last chemo I'm being wheeled back to Ward 64 for a 5 day stay. Deja vu.
Ward 64 itself is actually dotted with lovely nurses who you welcome to your bedside at midnight and sparrows fart to do your 'obs' because of their nightingale bedside manners. It's also dottered with young looking doctors who I would imagine entered medical school fresh out of nappies. I had a gorgeous looking Asian doctor who looked all of 20 trying to find out why I was there. In the middle of my heart wrenching explanation, she snorted up a honking load of snot without blinking an eye and looked at me as if to say 'continue please'...um it didn't quite go with the beautiful skin, exquisitely applied make up, expensive perfume, the trendy hair do and the clothes.
As expected you get chatting to your roomies about your medical rap sheet (but you wait for the green light from them first) and listen intently to theirs for hope and answers.
Majority of my rap sheet conversations have always highlighted positives in my own experience.
Be careful when you talk to anyone with life threatening diseases that you don't unconsciously talk them into negativity by assuming you know what they are feeling.
When someone told me that they know I would be finding hospitals depressing I understood that was their take. Hospitals are not depressing, it can be people's attitudes.
One of my roomies unfortunately started grating on me, the second to last day of my stay. That was after hearing her rap sheet told to every nurse, every visitor and even our visitors time and time again.
Swapping rap sheets is almost an art because you must be able to do it without the 'pity me' tune. Plus then you have to remember that there are only curtains to block out the doctors version of your situation - as I discovered can be totally different to what this roomie was rapping to us!
Hosptial food leaves much to be desired and I am now officially petrified of needles but generally I feel safe and know I am being fussed over with good intentions. I mean there really is no other place where I can sit in a cafe over a coffee or browse through mags in a shop in my blue slippers, striped pj's and pink gown completely bald without being put in a straight jacket and arrested.
Roomie A started to lose her hair today. I know the emotions that go with it because I have been there and so it was great to be able to share with her mostly because she wanted to know. Not dwelling on it Roomie A booked an appointment with the wig place to shave it off and grab her wig.
Roomie B was given bad news today that no cancer patient wants to hear but her optomistic attitude was one of well I won't be hanging around here for a decision I got things to do! I've lived a good life and I will continue to do so.
Roomie C I hope will be able to rap a more positive one to others she engages with in life.
Roomie D, that's me. I turned 40 last month and decided to postpone it until next year. I can't wait!!!

05 May 2008

Tomorrow Tomorrow

With much pride I will announce at reception tomorrow "Hi I'm Sarvs Falefitu and I have chemo today" and I will wait happily for as long as it takes.
When my oncology nurse calls me from the waiting room at Daystay Oncology I will float to my designated bed or lazy boy.
When I am asked to soak my arm in hot hot water I will grit, bear and soak longer than normal grinning from ear to ear.
If my oncology nurse has trouble finding a good vein I will remember the white sands and blue clear waters of Savai'i back in 2005.
Time will not bother me in the slightest tomorrow even if chemo takes longer than normal and I get caught in the traffic on the way home. I will take it all in my stride.

I haven't thought much about tomorrow since January 15 2008 and right now I feel like a child ready to board a plane for a holiday.
Tomorrow has taken a long time to get here.

Tomorrow I will have my last chemo treatment, ever. It's enough to rip me nightie and enough to make me cry. ROLL ON TOMORROW!!!

02 May 2008

What is Pulmonary Embolus?

I got the fact that I had (positive talk) cancer. Understood the need for chemo. Experienced the side effects both physically and mentally, trying to be all things to all people and realised yet again 'Sarvs you are NOT superwoman, bring it down girlfriend'.
The week after my 5th FEC regime I was hospitalised again. It's a sad day when the nursing staff recognise you up at Ward 64 - my 3rd home after oncology daystay unit and the bleeding room (blood lab).
After experiencing severe fatigue (where getting out of bed was impossible most days), dizzy spells, nausea, severe headaches I put it down to chemo side effects. I have a very high pain tolerance (apart from the blimin needles) so I played things down in my head and only when I had terrible stabbing chest pains that reduced me to tears did I get on the blower and called Acute Oncology who informed me to get to hospital, like yesturday!
Lucky the pain reduced me to tears actually because after a sh***y ride to hospital, an x-ray to eliminate a chest infection and a CT scan to detect clots I found out after being admitted to Ward 64 I have PULMONARY EMBOLUS in my right lung so I needed to be jabbed in the stomach with Clexane (blood thinner) immediately and every 12 hours for the next 2 weeks.
I don't do things by halves that's for bloody sure I thought as the nurse jabbed me.
A pulmonary embolus occurs when part of the blood clot somewhere else in the body breaks off and travels to the lungs. It could come from a deep vein thrombosis in the leg or pelvis. The floating piece of clot blocks the blood supply to the lungs. A large one can cause breathing difficulties, fainting spells (hello sound familiar?!) and can even be fatal.
Again not to be outdone Dr Tim from the Haematology Unit said 'you are functioning on about a quarter of your right lung with the rest of it blocked; so your clot is very large'. Wow that is some freaky stuff?!!
I am self medicating once a day now for the next 6 months to thin the clot. Grab the flab and jab (into the stomach), fortunately I have rolls of the flab, so no problemo!
Naturally one asks why clots occur and I was given a number of reasons. The thrombosis specialist said 'people with cancer who have had major surgery are likely to have blood clots'. I guess that's me.
The side effects of the treatment are nose bleeds, bleeding in urine or bowel motions, severe nausea, vomiting, diarrhoea or abdominal pain, severe headache or internal bleeding.

I am still going through the mill but there is light as I go through it, just a bit dim at the moment but it gets brighter as I continue to kick cancer!

22 April 2008

Snip pics

Carey and Lara

Carey and hubby

And now mum gets in on the action
And the Boss (I am sure Carey was nice as pie at work that week)
Shelley the hairdresser tidies Carey up...
...'no nigga lines please'...
smiling and laughing the entire night..
You look fantastic Carey
And you too can sport the new look...GI Jane and Sinead
A huge THANK YOU to Carey for getting behind me and putting her money where her mouth is and to her wonderful family and friends who supported this night of success.

14 April 2008

Hair today, gone tomorrow..

Friday 18th April at 14 Glenhaven Place, Te Atatu Peninsula at 7pm sharp a very old friend of mine that cancer managed to bring back into my life (see it does have it's positives) is inviting friends and family into her home to cut, hack and maybe even shave (should I have even suggested that..?!) off her crowning glory to raise more funds for my Herceptin treatment!!

Okay so if you are reading this and in disbelief of Carey's bravery, you have nothing to do that night and have some spare cash jingling in your pockets you are officially and warmly invited to join me and others in supporting Carey on the night, support me for life.

  • 14 Glenhaven Place, Te Atatu Peninsula
  • Friday 18th April
  • 7pm sharp
  • Light refreshments and nibbles (BYO also for more dutch courage)
  • A snippet for a donation

***UPDATE FROM CAREY'S FUNDRAISER EVENT***

The cost of Carey's new G.I Jane hair do was a whopping $1090.00 - this was how much was raised on the night.

To all the wonderful ladies that attended and made Carey's fundraiser for my Herceptin a huge success THANK YOU so very much!!

And to Carey from me, thank you darling for taking the plunge; I hope you too will enjoy the new look and the kids don't get too freaked out..LOL!

Dearest Baby Luamanuvae,

Your darling parents I will love to no end and no words could do justice or begin to describe my gratitude.
One day you will know that many loving people put much thought into giftng you a beautiful name and gifting me with an extension to life.
You will be surrounded by those loving and generous people who I am so grateful to.
I hope one day you will realise you were a key player in making a difference for me.

Blessings and much love
Aunty Sarvs oxo
(**An amazing $1025.00 was raised and humbly accepted to go towards another Herceptin treatment**)

03 April 2008

169 days since my diagnosis

And reflecting back just a wee bit, life has been bloomin' stark mad.
One GP visit, one mammogram, one ultrasound, one core biopsy, one mastectomy, one breast reconstruction, fourteen breast clinic consultations, one chemotherapy orientation, one chemo oncologist consultation, one radio oncologist consultation, one istotope injection, one bone scintigram, one head, chest and lung x-ray, four oncology assessments, four chemo treatments, one post operation physio consultation, two lymphatic clinic visits, one acute oncology visit followed by six days of being laid up in a hospital bed with neutropenic fever, hundreds of lures inserted in me veins, that many more canulars tucked in there just for good measure, the poppin' of approximately fourty two steriod tablets, approximately twenty plus blood tests, one bald head and an extra freaking ten kilograms later it suddenly hit home that this was just the blooming beginning and I seriously don't know whether to laugh or scream!!!
So lately the last thing I've wanted to hear is 'oh well it's just about finished' or 'I know of so and so they had cancer but they are fine' because I am not even halfway through my entire cancer treatment and after 169 days from diagnosis one is always coming to terms with the blasted inconvenience of it all.
I'm going back to 'one day at a time' with the full support of my family and friends who I am very very grateful for and taking more chill pills along the way and I know they will be very very grateful that I do!!
Love and peace....S:-)

28 March 2008

It is time....

After my first FEC regime I was a tired washed up wreck unable to find a place of solace - my bedroom felt like a mortuary. It was a common sight to find me sprawled out on our bed fighting the exhausting fatigue and never ending nausea with limited or no energy. And shucks I was a pyscho on steriods...fortunately my adorable family know after chemo I am a different person and am left to get through the side effects. I don't like the FEC side effects more fatigue, constant feeling of nausea and body spasms or pins and needles in both feet and hands.
And just quietly (?!)fighting the unwanted demons inside my head after this chemo round, I will be the first to admit that it is now time to take up the social worker service offered by the Cancer Society. I maybe stubborn but I am not stupid and even I recognise the signs when it is time for that extra support by the professionals.
I will get another perspective on life with cancer and I can be as pyscho as I need to be without feeling like a complete tosser!

24 March 2008

BABY LUAMANUVAE (due 17 April 2008)


Sone & I have known Sarvs for many years and we are blessed to be able to help her. We are awaiting the arrival of a precious baby girl and are selling bids for her name to fundraise for Sarvs' treatment. We would love for you to help us find a beautiful Samoan or English name her. You can place a bid for a name that is special to you or you think we may like. A $50.00 bid per name would be fantastic, however any contribution would be greatly appreciated. Once she is born we will then choose a name from the list and if lucky, it could be your name we have selected! We would prefer not to know the names on the list until she is born. Get thinking about baby names and start making bids, we can't wait to see a huge list and raise lots of money for Sarvs.

To register a name please contact Liz on liz.murray.nz@flightcentre.co.nz or twobirdleg@xtra.co.nz and I will send further information.

20 March 2008

Look Good Feel Better

A couple of months ago my darling friend and I were privileged to have attended a wonderful workshop, Look Good Feel Better which was held at the Cancer Society in Auckland.
Imagine a room full of complete strangers with cancer sporting either scarves, bandanas, turbans or naked (beautiful and bald) meeting for the very first and perhaps the last time being pampered for free by generous volunteers who wanted to make the day special for us.
In between much laughter and talking, step by step we're taken through a face cleansing regime followed by a make up session helped along by experienced volunteers.
As I glanced around I was once again reminded of the cruelty of cancer and because of cancer there I was with women from all walks of life who were being inconvenienced by the disease. I could silently relate to each women one way or another and when I took off my turban to reveal my patchy scalp not one women looked at me in horror. I felt so at home and comfortable in a room full of strangers. Only a woman who has cancer can know and understand the feeling of belonging to a 'sisterhood' such as this.
I met some more wonderful women that day and I was so proud to be in such wonderful company even it is because of cancer.
At the end of the session we all got to take home a goodie bag full of expensive cosmetics, some wonderful memories and snapshots of history for ourselves.
Walking out to the foyer I hardly recognise any of the women who are now completely made up sporting sexy new wigs shooting off to lunch.
I loved the experience and like every other women who has attended this workshop am grateful to the woman who started it off many years ago.
(PS: as you can see I am still wired from the steriods and am still zinging out at 5:15am...!!)

I am FECing it now...

My cousin's wife Lizzie who is heavily pregnant was my companion for chemo cocktail number 4. It was a mini girls day out catching up in between flicking through gossip mags, munching on lollies and nuts, drinking coffee, laughing, texting, looking at photos and swapping hilarious hen's night stories - the normal things gals do when they get together except we're at the Cancer and Blood Services, Day Stay Oncology Unit. It was perfect that morning having Lizzie there as the morning started off badly. Soaking my arm in hot water twice I knew that it wouldn't be smooth sailing. The first attempt at finding a vein was very painful, it was like someone had crawled into my arm and was hammering the lure through my very thin collapsed vein with force; the second attempt was still painful except no lingering hammering. Fifteen minutes later we discover the saline isn't getting through my vein but we persevere because I didn't want another attempt at finding another. I should've just let Beth find another then as ten minutes after administering the first of five chemo syringes we have to stop, pull out the lure and call another nurse in to find another decent vein to be able to continue with the FECing regime. They have a unwritten law in oncology, two attempts only and then call another nurse. The second nurse Roz strikes it lucky on the first attempt and finally I can get FECing.
For the FEC regime, there's three syringes of Fluorouracil (red drug), then two syringes of Epirubicin (clear drug) . These drugs are manually administered very slowly by Beth via the lure. It's then finished off with a full bag of Cyclophosphamide which is done via IV. I belched through most of the chemo which I found out was normal with this regime..so lady like, NOT!
Immediately after I literally felt drunk (or drugged), the fatigue and the nausea settled in and each time I would get up I was dizzy. This continued through to day two.
Premeds are taken slightly different with this regime too. Day two after chemo you start your lovely array of steriods and continue for four days. I feel like a high as a kite African elephant calf climbing the walls (ghastly sight and of course absolutely impossible but never under estimate the effects of steriods...!). Tomorrow I will probably be a depressed calf stomping round throwing my weight around (and there is a lot of that lately). Day after that I will be moody as heck and everyone will want to avoid me and then I will start getting all paranoid and start crying that nobody loves me anymore...blah blah blah. Then the day after that I will probably be as high as a kite, slightly depressed, moody as heck, paranoid and an absolutely exhausted FECing woman going through chemo - all this on top of the fatigue, nausea and dizziness. I could be wrong....we play it by ear but I am mean who FECing knows.