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?!!

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!