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?!!

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....!!