2009 so far...

I've been back at work full time for months now and apart from the days where I am unwell, so far so good! Herceptin I was told would not be as evasive as either chemo or radio which would be accurate.
I do however after each treatment get car sick and want to throw up.
One or two days after treatment, my scalp and face will grow red raised pimple like spots which are very tender to touch.
I have on many occasions had severe cramping followed by bouts of voilently uncontrollable diahorrea - not funny when out in public!
I regularly experience near black outs and dizzy spells but I can be sitting at the dinner table, stuffing my face so it is not through lack of food!
I was experiencing severe sharp headaches and heart flutterings however they seem to have subsided.
Mouth ulcers are common, oh and of course the tiredness. Lying on the couch the other week and in the middle of my own sentence it was like someone pulled the plug that connected brain to mouth and I shut down, excused myself and promptly put my exhausted brain to bed and I was off in la-la land.

I am convinced these are my side effects to Herceptin. I would be interested to hear from other women who have or have not experienced side effects.
I would be more concerned if these were not Herceptin related because then I would have to put it down to 'age'...!!!

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..

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!

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.

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!

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)

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"?

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.