Thursday, 2 May 2013

Long overdue update

So much has happened this year already I don't know where to begin....

*tumour markers started to go up so reviewed oral chemo and decided on an iv alternative called Gemcitabine

*had some really really bad days

*playcentre rocks as usual

*decided to move to Whitianga after bad days - need support as my friend who supports me is going to be moving to Australia

*moved to Whitianga

*changed onco, health board, gp everything.   New onco really really good.

*added carboplatin into chemo as BRCA positive

*having regular x-rays and tumours decreasing visually even though markers say otherwise

*Charlie started school, Raife at Steiner Kindy 5 days, Bastian at playcenter 3 days

*Chemo 2 weeks on, 1 week off

That's pretty much the gist of it in terms of facts.  Emotionally it's been a roller coaster - when the markers went up, when the tumors went down, moving away from all our friends, meeting new people, chemo IV again, Charlie at an area school with 800 kids and a uniform (a real struggle from someone who wanted to homeschool), and Raife wanting to be at kindy 5 days a week.

There has been so much it's a bit overwhelming.  We started counselling but she seems to want to discuss everything except cancer so far.  I'm not sure I'm ready to talk about the 'what if I die' stuff.  It kind of seems moot because really, if I die I won't be worried about it anymore.  I can't help that part except to do everything I can to ensure dying is a long long time away.

Everybody dies, nobody knows when.  I could get hit by a car tomorrow.  Live now as best I can and pray for some more of the miracle I am having.

xxxx

Wednesday, 2 January 2013

Tumour markers and babies...

Just a quick update - my tumour markers are still going down.  That's a good thing, we're not going to scan so frequently anymore either (not sure how I feel about that) just go off the markers as they correlate really well. So Yay again.

On the sad side.

I caught up with a couple of friends that I have made online who do so much of the fundraising for me and put so much effort into me.  It was fantastic - they are as wonderful and compssionate and in real life as they are in our little online Bubble.  But they are both pregnant.  Well pregnant.  With beautiful big bellies that have babies moving inside them.  And sometime soon they will have tiny litte dependant people who need them like nothing else.

And it makes me so sad because they are also going to teach these wonderful babies how to breastfeed.

I'm pretty sure I'm never going to hold a newborn of my own again, or feel those first flutterings of movement in my belly.  And I'm damn certain I'm never going to be teaching one of my babies to breastfeed. How do I reconcile this with my desperate desire to have more children?

Once again cancer fucks everything up.

Wednesday, 31 October 2012

YAY - Great news!!

I finally had a scan that gave me good news - don't know that I've had too many of those!

Latest CT says that the nodes have NOT increased in size, and some of the larger tumours have definitiely shrunk (I repeat DEFINITELY SHRUNK).

Yay for finally getting some good stuff going - plus I'm getting some gardening done - I so love growing veges and I'm so bad at it!!!

I feel good, I'm maintaining my weight at 53-54kg and have stopped losing so much.  I'm not spewing, I'm mothering my children in new (non-breastfeeding  - sad face) ways and summer is coming.  Bring on camping!

The prayers, and vit C, and chemo, and healing massage have all been doing their thing.  I'm so thankful and so happy today.

Bring on the world  :-)

Monday, 15 October 2012

Nadia

A long time ago, when I was first diagnosed, I met a wonderful woman called Nadia Fannin.  She had the same type of cancer as me - triple negative, 2 absolutely gorgeous kids called Albie and Indie who are the same age as Raife and Bastian, she was breastfeeding at the time and the cancer was associated with an abcess (mine was a blocked duct), she was in her early 30's and otherwise healthy, and we were diagnosed on the same day.

It doesn't get more familiar than that.

She came to see me in hospital after my surgery as she was doing chemo first and I had surgery first.  She looked at my then fresh wounds and cried for what was to come for her.  I went to see her during chemo and I cried for what was to come for me.  Even though we didn't really know each other well it was an intensly personal relationship.

We kept in contact, updating each other with scan results and when she came to see me and told me she had advanced liver mets I cried.  What an awful thing, we were only 6 months out from finishing chemo and already things were starting to go wrong for her.  Only a few weeks later I rang her to tell her about my lung mets.

At the time she said to me that she didn't want to tell me, that she found it hard to share that information with me.  I thought that was a little funny but never said anything.  Then when I had my own bad news for her I realized exactly what she meant.

You see in others a path that you may take.  You don't know what's ahead of you and the doctor's are just giving their best estimate.  There is no way to know what is coming up on your journey and so you experience the events of others just a little because it is so close to being you.

Nadia died on October 3rd. 

She had a wonderful celebration of her life which I attended.  It was so lovely and so awful.  To see and hug her Mother and know that there is a very real chance that she could be my own mother made me choke.  There are no words to describe how vulnerable and fragile I felt that day.  How precious I remembered my babies and my husband were, and how much my heart broke for her husband Kane and their own children.

I hope that all the people who wrote such lovely messages about her and said such wonderful things managed to tell her that while she lived.  She was a strong, compassionate woman and I wish we were still travelling our journeys together.

update

So we are actually doing really well.  The coughing is not nearly as intense as it was and some days I even miss a dose of the codeine and manage without issue.  The capecitabine - Xeloda - must be doing a good job as my tumour markers have come down from the 300's to the 200's, which is pretty good considering they may have been higher. 

I have a ct scan scheduled for the 24th so we will have a better idea about what is happening and some more info then.

Can't complain - except see next post..........

Friday, 31 August 2012

Starting to poison myself again

We started tonight with capecitabine.  Chemo again.  More poisonous crap inside me, more 'preciousness' and feeling like arse. 

What a horrible place to find myself visiting again.  I thought that I had come to grips with the fact that I had done it already and so again was just an extension of that time.  Nope.  Wrong.  It's a whole new maze of confusion and tears to negotiate.

I just don't know how to come to terms with the fact that I am dumping this stuff into myself.

Wednesday, 1 August 2012

Greece Test

Ok, we have the results from the very, very expensive blood test that was sent to Greece.  They have certainly worked hard for their money and have sent pages and pages of information that is way beyond me.  but they have also sent some very interesting graphs and a cover letter explaining their suggestions based on the results.

Cyclophosphamide and Epirubicin are the stars of the show - with 82% of cells dying within 6 days of exposure in in vivo studies. Cyclo and Epi, both were part of the chemo I had before. Cyclo being the one that does all the damage to your ovaries, and Epirubicin - my red demon.

I'm not sure how this can be as the onco is sure that the tumours in my lungs were there already when we did chemo last time - just too small to be seen on scan.  And he says the chemo didn't work, that's why they have grown.  But everybody is wrong at some point, and the tests were very clear.

So I just need to convince the onco to give it another go..... wish me luck!

Friday, 6 July 2012

Vitamin C

I have finally been able to get my own IV vitamin C going.  It has been quite an eye opening journey into what you can and cannot procure in NZ.  We are very lucky here that there are no rules surrounding the self administration of IV anything (as long as it's legal) and since sodium ascorbate is so basic there's no real issue.

But....
Ascorbate - RMF Neutraceuticals
IV lines - Bamfords
Sterlie water - pharmacy
water,syringes, needles etc - hospital stores via gp

All these people have to be talked into selling to me.  After a bit of a palava to start with everything is worked out and we estimate about $17 a 100g shot.  Compared to $130 throught the gp (that was at cost too) it's definitely cheaper!

I have had 3 x 50g doses and 4 x 100g doses and it is definitely stronger - as the Cathcart protocol that I'm using suggests and I get a headache if it runs too fast.  But I think I'm sodiumed out - and we reckon a break is warranted, so we'll have a day or two off and maybe stick to 50g a time.  We'll see.

Thursday, 5 July 2012

CT guided lung biopsy...

Yesterday I turned up at the hospital Surgical Admissions Unit (SAU) for my biopsy.  I went the long way around - I will never ever pass through those doors again.  When I turned up at 7.20am, I was not on their list.  We had paid $250 to stay in a house for the night and half the day so that there was room for 3 miserable-still getthing over the D's & V's-grumpy-tired children to run around and not trip over themselves or their father who had them by himself.

I had better have been on their list...

They checked again and yes, I was there but booked for the 11th.  I didn't have my paper but I am a reasonably persuasive person and they were happy to have me and wait until Radiology opened at 8ish and ring to find out.  Of course at 8.20 rad said yes, yes she's booked.

With no notes or even info on what was happening SAU 'prepped' me.  Actually they just got me to put on a gown but I refused to take off my longjohns, socks and hat.  I'm not stupid.  It's a hospital - it's cold.

They dutifully delivered me on the bed to Rad who bemoaned the fact there was no IV.  So I trotted off around the corner to oncology where they accessed the port, then I trotted back like a good little patient.

At about 10am in we went, after marking then scanning, local anaesthetic,scan, more local, scan, poke with big needle, scan, poke more, scan more over and over and over - they got 'hopefully a few cells'. And then I had to lie on my hole.  About an inch from my sternum to my right and directly along my scar was where they had poked, this bit of me had to be on the bed with the rest of my weight above it to keep pressure on so I didn't get a pneumothorax.

I lay like this for 2 and a half hours.

I was supposed to go for a chest x-ray at 1.15 to check all was good and no air leaking out, at 2pm SAU rang Rad who said any minute.  About half 2 I went up still lying like a broken person, got to sit up and have a 5 sec chest x-ray and sent back to SAU to be discharged.

Ready to go home starving and dehydrated, I went to the toilet, inhaled to cough and started to spew because of the disgusting purple toilet smelly accessory thing (whoever invented them needs a poke in the eye with a burnt stick).  Then of course everyone was excited.  But I had my grumpy face by then so I just went home anyway despite them saying I should wait and have a delicious sandwich of white bread and cheese slice.

We were home just before 5pm, what a long day for everyone.

Lung biopsy done...(I hope..)

Monday, 2 July 2012

I have been putting off this post for a week now...

On Sunday the 24th June it was a year since my life as I knew it disintergrated and a new life of tiredness and guilt and pity began.

It was a year since I stood outside those self-opening double doors to the surgical unit with my baby on my hip, trying my hardest not to run.

It was a year since I took a big breath, brushed away my tears and made a decision that would break my heart, deprive my babies and maybe save my life.

It was a year since my mothering was stolen, a year since my health was stolen, a year since my self was stolen.

And it was a whole year since I last breastfed.

I was hoping that time would heal etc etc, but that's wrong.  It burns in my heart like the day it happened.  It is a raw and open wound that will not heal.  No matter how much I ignore it, bury it or pretend it's not there - it will not go away.

So I sat in the car with 3 beautiful sleeping children and cried like it was that day again. I cried for my poor children being put through this awful journey, I cried for my poor husband who fears for the life of his love, I cried for my parents watching helplessly as their daughter gets sicker and sicker, and then I stopped.

I will not cry for me.  Not today.  This is not a place I am prepared for, nor a place I want to even peep at.  I will not cry for me because I need to use that energy more wisely.

I will not cry for me because I fear I will never stop.

Time does not heal everything. At least not a year, it doesn't even cause a ripple or touch the sides.  Nothing is diluted and nothing is easier. 

Time does not heal everything.

Friday, 22 June 2012

Bad news...

So on Friday a couple of weeks ago I decided that the dry cough I had had been going on long enough and I went to see the GP at the onco nurses suggestion (as my onco was away) for a chest x-ray.  Also the day before the district nurses had flushed my port and then I had a cold reaction which they were concerned was a 'septic shower' (when there is bacteria in the line of the port that gets flushed through your body every time you use it) and I they wanted me to go and do bloods.  So saw gp who said it might have whooping cough and also organized x-ray for pneumonia. 

Off I went to the local little hosp. 

Where the ED doc told me the chest x-ray showed tumours on my lungs, confirmed by a radiologist.

So lung metasteses 5-6 months after chemo finished.  This is not good news in anyones view.  Off to Whangarei to see visiting onco who admits his specialty is digestive but he consulted and he's very sorry but all he can offer me is capecitabine.

Capecitabine - if it works - will stop the tumours growing not get rid of them or shrink them, if it works.  capecitabine transforms into 5FU (flururocil) in the body.  This is the 'F' of the 'FEC' chemo I already had.  Not really feeling so good about this drug and it's chances of working. 

Spent the last week feeling like a bunch of arse, but my Mum and Dad came to stay and I am so thankful for everything they did.  They came and took over everything, cleaning, washing, cooking, gardening, feeding chooks, organising kids.  And almost the whole time I felt like shit.  Going to bed at half 6 but still not sleeping, sore tummy, sore chest, sore back, sore everywhere.

Saw my regular oncologist this last week.  he is so good.  He didn't know about the mets - he's just returned from a cancer conference in Chicago.  He was so different.  Suggested all sorts of different chemo options, but his big thing is that he's like to biopsy the tumours first to find out if they are the same as the original.  He said in 25-30% of cases the mets can be hormone positve - and that is a whole another game.  He has also suggested that we seriously consider moving to Australia to get access to some appropriate drugs that are not available in NZ because of the cost.  So more 'googling', and more waiting.  The biopsy has to be done under ct scan guidance so they don't poke holes in arteries and hearts etc.  I have a thoracic ct scan booked for the 3rd July and the ct guided biopsy on the 9th.  Hopefully there is nothing else.

We are also starting intravenous vitamin c at home.  With my gp's full support, and the port being fine we should be ready to go today or tomorrow.  Everything is here except the ascorbate. 100g day plus 6g liposomal and oral vit c.  This will sort this cancer business out, I'm sure.

Will write more when I have time.

Monday, 28 May 2012

Yay for periods...

So I have finally had my first period since chemo - this means there is still something going on in there and the Zoladex may have done its job (and the hot flushes and sweats weren't just for fun).  It means that maybe, just maybe, the cyclophosphamide didn't trash me.  I struggled so so much with this.

But now I have to make a decision about whether to have another baby.  This is not your everyday kind of decision now.  There are so many other things to consider.

CONS
With a BRCA mutation my odds of ovarian cancer go up so much.  And there is no reason it would be hormone negative - it could well be hormone positive and if already there and undetected would grow crazily from the pregnancy hormones.

There seems there may be a correlation between working your body hard, making big changes etc, and recurrence in the early years following diagnosis.  Is pregnancy to be considered in this idea?

If I die in a few years my husband has another, younger baby to try and manage on his own.

Can I reasonably rely on the women of NZ to provide for another baby.  Particulary when formula does not feel like an option and mixed feeding carries so many unknown risks.

PROS
A new baby is such a healing process - helping you to remember the passion and love of life.

I feel incomplete.  To me having only 3 is no different to the person who only gets 1 and is desperate for more.  Noone can tell you how many is enough for you.

Your body is made for pregnancy, it is normal and healthy and is what your body is 'supposed' to be doing.

There are so many wonderful women out there that I am confident I could get milk.


Who knows?  Do I think about it and ponder it until menopause when it's too late?  Do I just jump in and let fate choose?  Do I wait until a few years have passed and my risk goes down, but then I'm so much older and it may be too late for me (keeping in mind that I had low levels of hormones from my ovaries to start with)?  I have no idea and there is no direction for this path. 

But I so want another baby....

Sunday, 8 April 2012

homeschooling

Is this a natural offshoot of my experience?  O was I always going down this path, being a staunch believer that attachment is an essential part of being a child?


In Jan/Feb I started talking to my husband about homeschooling.  This is a whole different ball park.  Charlie will be 5 (!) in June and there is a huge societal expectation that he will go to school as soon as he has his birthday.  Everyone talks about how they don't really have to go until they are 6, but it just fontal chatter.  Noone really thinks you would 'deprive' your child for another year - how grateful we should be to have them out of our hair.

Now don't get me wrong, I loved school.  I couldn't get enough - particulalry primary school.  At high school I was understimulated and bored.  I didn't have the choice to study the topics that I loved or the impetus to excel.  Having to do the ones I hated influenced my desire to immerse myself in those topics I coudn't get enough of - Shakespeare, Classical Studies, Drama, Art, Literacy, Languages etc.  Primary school was different for me.  I rolled through it loving every minute, stimulated and interested every day - but there was about 24 kids at our whole school, from 5 to 12years old.  Our teachers were, and still are, family friends and the community was so awesome (remember this is a childs' perspective).  My first school teacher is one of the most wonderful people I have ever been lucky enough to encounter (thanks so much Mrs Yates).  But my first ever teacher was the person who makes me think I can homeschool. Not because she necessarily agrees with it - I'm sure she doesn't – but because she did it. She taught me to read and write, but most importantly she taught me how to love learning. She held playgroup at our house and was a REAP lady. She was a teacher aide at the local school and is still teaching me and helping me to learn how to teach my own children.


My Mum has been my greatest teacher ever, and she probably doesn't even realize it. So because she taught me to love learning, I feel confident that I can teach a 5 year old – small steps :-)

Milk update

I have the most amazing life.  I am given freely the gift of life and health for my son.  This is where my freezer stands now


Under those few bags it is loaded to the bottom with about 350 little pink containers full of happiness.  And there is more to come :-)  And I still have a couple of wonderful women pumping for me (Andrea, Pip).  What an amazing life I have. 


Latest onco app

We have recently been to see the oncologist again.  Finally I have one who gets me.  He was waitinf for me when we got there, not once did he look at his watch or hurry us on.  He has come to grips with the distraction of the entourage and with the fact that I expect answers to every question.  He did not know that I was BRCA2 positive, and was not happy about it.  He was very insistent that my sisters/mother/brother etc do the genetic screening and mostly for the ovarian cancer risk.  I get the impression that it is an ugly disease.

We did discuss 'recovering my menses'.  Which made me laugh out loud!  Who ever uses the word menses, and it sounds like I lost it under my bed somewhere!  He is American though :-)

He has said no to worry about my periods not returning yet - he wouldn't really expect them to.  But if they haven't returned by September they are probably not going to.  In light of the BRCA2 I think he would have preferred to whip out my ovaries then and there.  Which is unsettling.  He did not know how pregnancy may or may not affect any cancer growth - it's hardly a well researched topic!  But I got the impression we should get on with it if we were going to. 

So that part of our app was pretty ok really.  Until he started talking about chemo.  Apparently if they had known I was BRCA2 positive they would not have given me the FEC - they would have replaced it with a carboplatin.  I was (am?) furious and unbelievably upset.  Doing chemo in the first place was an agonising decision, to be told I had the wrong drugs made me feel like stabbing someone.  Really.

It's not like he said we wouldn't have recommended chemo.  He was just saying a change in the drugs - but that Epirubicin nearly broke me. It really did. 

To realise I didn't have to watch that red poison draining into me, that those tears and gutwrenching horror and fear didn't need to be so strong, so all-consuming - there are no words.

BRCA2 Positive

I'm BRCA2 positive.  That means that I have a cancer gene.  It has a 50/50 chance of being inherited, but since I have it, it gave me a 50-85% chance of breastcancer (10% in regular population).  Not good odds obviously.  It also gives me a higher ovarian cancer rate of 20-40% compared to 1.5% in normal population- more on that later.

It most likely has come through my Mum's side as I have a cousin who died of breastcancer in her early thirties, and my mum's cousin had 'early' breastcancer too.  But that's it as far as we know.  Noone with ovarian cancer and noone at all on Dad's side that we know of.  For my siblings it means a 50/50 chance of having it.  Our family is now known as a 'high risk' family.  For my brother it could increase his breastcancer rate to 10%, and they recommend prostate checks at 40 instead of 50, but the implications for him are mostly about his daughters.  Everyone in my family will be entitled to yearly screening and if anyone tests positive for the gene they will be offered prophylactic mastectomy and oophorectomy (ovaries out).  The offer of genetic testing also extends to my aunties, uncles and female cousins.  If any of them test positive their brothers and children can be tested and it just keeps on going out and out. 

As yet my Mum and her sister have both decided not to test, and I am unsure about my sisters and brother.  I am really struggling with this.  I feel like I have inside knowledge in terms of facing your life and by not knowing they are sticking their heads in the sand.  It is one thing to have regular screening and be aware of lumps etc but it is the ovarian cancer that scares me.

Ovarian cancer is virtually unscreenable.  There is a blood test and transvaginal ultrasound but they are both regarded as reasonably ineffective.  You often won't know you have it until it is killing you.  With a BRCA2 mutation the odds of survuvability slightly improve from about 36% to 52%.  Not great, and pretty much equal to your chance of  not haivng breastcancer.  This is what I struggle with in terms of my family declining/ignoring genetic screening. 

I do not want a single one of them to go through that.

It's been a while...

so I thought I would catch up.  We have been so busy getting on with our lives which is really nice.

I have been to see my gp who was happy to give me metformin to start on.  There have been lots of small trials and currently a really large one on the use of metformin in preventing mets/recurrance.  It has shown so much promise that the big trial has been able to skip one of the steps in proving efficacy, and go straight into a double blind, randomised large scale human trial.  I would be able to participate according to the criteria but we would like to have the opportunity of thinking about more children and the trial is for 5 more years yet.  But I talked to my gp who has heard of metformin as being hailed as the 'elixer or youth' in the UK at the moment, and the side effects are minimal so he was happy to prescribe it for me.  One of the problems I'm finding with it is that it decreases your appetite - it is marketed as glucophage for weightloss purposes.  So I need to make myself eat sometimes.  I need to loose my extra weight so that I am well within my recommended BMI (I can't really afford not to have a healthy body), but through exercise and healthy living not through drugs.  And other than some really lovely diarrhea it's been fine.

We have had a lovely family holiday.  Charlie calls it our cancer holiday :-)  We went to stay with my brother and his family while my husband did a week of nightshift.  It was reall really nice.  I had a great time and it was so cool spending some time with Russell and Cara.  Especially since there wasn't anything on (like weddings,funerals etc) and not heaps of other people.  Just us and the kids, hanging out.  It was awesome.

We then went on to Wellington - and we flew which the kids thought was so so cool.  We went to the zoo, met a Red Panda, ate too much good food, sat on the deck overlooking Wellington and the airport and drank wine out of the bottle with my mother-in-law!  It was such a nice way to reconnect with my family and spend time just enjoying the little things that they love - like going on the bus a thousand times :-)

I have finished doing my IV vitamin C and have been looking at liposomal vitamin c as a replacement. I have also been looking into making my own.  The more i look at ascorbic acid the more I find that amazes me, like the link between deficiency in mothers and sids.  It's incredible to think that such a simple, cheap and effective vitamin can be key to health for so many.

The boys also went back to preschool in February.  This has been weighing heavily on me.  They don't get excited about going and most times Raife says he doesn't want to be there, but once he's there he kind of settles in.  Charlie has been doing ok there and has made a little friend called Leonardo.  They hang out together and are great friends - it's so cute :-)  I think since we have been picking up one of the boys who goes to playcentre too, it has been better for them.  But it still doesn't sit well.  If I hadn't had cancer to do, they would never ever have gone into that kind of care.  To me it feels like daycare with a pretty name.  I don't like daycare, I don't like what it represents.  The research says it's not ok for under 3's - and even after 3 it's not that great for boys.  It makes me feel like a lazy, uninterested parent.  And I do not want to be lumped in with the mothers who leave their babies at 3 months old in daycare until they go to school, every day.  I don't agree with it, and it's not how I feel mothering should be.  I do wonder if I feel so strongly about this because I have been influenced by my situation - but does that matter?

Anyway, February rolled around uneventfully.  Except for one thing.  I got my genetic screening results back....

Thursday, 26 January 2012

was feeling sad....

then I found this...

So many reminders.

Every day I have a hundred little reminders. I get dressed, Bastian grumbles about waking up or maybe he hurts himself, I shower, I get cold - then hot - then cold, I wear a hat of some sort constantly, or Raife says to me 'you used to breastfeed me didn't you mum'.  That breaks my heart. 

We went camping and it was all going great until bedtime.  Bastian got tired and started rub his eyes so it was time for 'milt, milt'.  I go off to get the milk, warm it up and realise - with the most gut wrenchingly awful feeling - that I have no teats.  I have lots of our beautiful hard-gained milk all in varying states of frozen or defrosting and no teats. 

I ransack the tent, our bags, the car.  Nope.  None. 

Bastian is winding up and I am feeling the tears prickling in my eyes.  I become frantic and angry and upset and so so broken.  Bastian is crying and Daniel is getting frazzled and says to me 'well what are we going to do then' he's upset at the situation not at me but that's how it comes out.  And so I let rip.  Crying and yelling at him at the same time.  It's not my fault and how DARE he even begin to be angry at me for no longer being able to give our son what he needs.  How dare he.

And that's not fair on him so then I'm apologising and sobbing because now I feel like I'm letting down my son and my husband both.  The other two boys watch with what seems to be both confusion and concern. I'm so broken.

Some days it's so hard, and I blink back the tears as I write this.  Another awful reminder.

Sunday, 15 January 2012

I thought it was bad before...

But this is a whole new level.  The cleaning lady has finished.  After 6 months of having family/friends and then a DHB paid for cleaning lady I now have to do it myself! I'm not quite sure how that will go :-)

It's actually great.  She has gone because I no longer need her.  I don't need to bleach my light switches every day, or mop my floor every day, or clean my toilet every day (although i think I will - 3 messy males using it warrants a clean every day), or vacuum every day, or hot wash my knickers and socks, or sanitize my hands a thousand times a day, or bleach spray the bench.  I can use any towel I like - the red towels, bathmats, facecloths and hand towels are not reserved just for me and no longer need hot washes. 

No more chemo, no more vit c, no more bloods and trips to town.  No more self-injecting, no more steroids, no more weird weight fluctuations (5kg between morning and night is kind of freaky).  No more hair falling out (I shaved it anyway).  No more steroids. No more chemo. Did I mention that?

Just regular stuff, like fruit and peppermint tea for breakfast, and exercising slowly.  And growing my hairy legs and hairy armpits and (sigh) hairy pubes back.  And I get to go back in or glorious chemical free spa :-)

And lots and lots of gardening.  Seeing life growing from my hands is awesome.  Every year I have my garden, but this time I have gone a bit mad and have seeds and seedlings everywhere, have dug up half a paddock, chopped off half a tree to let light into another bed and have pots/containers/ploybins full of plants and seeds everywhere.  We'll prob run out of water and they'll all die :-) But that's ok because I grew them in the first place.  I don't find gardening peaceful or cathartic (bla bla) - Bastian has a fit when we go there and runs over top of everything, Raife sits on them and Charlie picks it all - it is hard going with the kids.  But I feel like growing fresh new plants myself, that I can then feed to my family is an achievement for me.  There are no pesticides or insecticides.  There is always the occasional cooked up caterpillar, but protein is good!

It is about keeping ourselves well and healthy. And it is so good to be alive and to be part of my wonderful family.

Bring on the rest of my life :-)

Sunday, 1 January 2012

Happy New Year

We start a new year now and I am 2 1/2 weeks out from my last chemo.  I'm not sure which was worse - the first or the last.  But I had two very good friends to help me and I'm sure the staff thought we were nuts.  We pretty much took over their little space with our three people and two babies who were trashing their xmas tree and spreading blueberries across the universe.  Then when I had some 'assisted' skin to skin with my boy while I was howly-bagging was surely something never seen before - as if we worry about what anyone else thinks anyway! 

Weirdly I didn't feel the sense of relief that every was busy telling me I 'must be feeling'.  I wonder though if it was because there was still that lot of side-effects to contend with yet.  It has definitely been the worst of the Taxotere lot.  With a really aching body and sudden tiredness.  Two days before Christmas I had no tastebuds at all, I couldn't even taste pickled onions.  By Christmas day I had at least half of them back thankfully!

I have overdone it a couple of times and on Christmas night my body gave me a sort out.  In the space of 10 minutes I went from feeling just tired to shattered and sore and not coping. It was kind of scary that I can go down so quick but in hindsight I was pretty knackered by lunchtime and just ignored it - my own fault.

So now I am starting to feel better and am looking forward to continuing to get less tired and more normal again.  It will be nice to get some muscle tone back and be able to hang out a whole load of washing, or spend half an hour in the garden without feeling like I have run a marathon.  

Slowly slowly.

I have done the most awesome thing today.  There is nothing that has made me feel this good for such a long time.  We bought a new freezer and take a look at this..


What wonderful women you are :-)

Thursday, 15 December 2011

Last chemo today

It's just gone 5am and I'm up eating promite toast and drinking chilli hot chocolate while the rest of the country sleeps - except the dairy farmer next door who's been up since 4am getting in his cows.  I know this because I've been awake since midnight.  It's not the 9000% humidity, nor is it the snoring family in bed next to me.  It's not the 'chemo munchies' - although that is why I'm eating at this hour.  It's because I feel sick already and I haven't even left my own house.

The whole of chemo has been a nightmare.  Every time I go people say 'it'll get easier'.  God they're so wrong.  And today is the worst, already.  I've been lying awake at night thinking about it for days, and in a weird way looking forward to it because it will means it will all be over.  But I so don't want to go.  To the point where I find myself rationalising not going.  How can just one round make the difference?  I don't really believe I need it anyway.  Maybe I could do radiation instead?  Surely one dose less is ok...?

But no.  I'll go and I'll cry, and my stomach will turn and I'll try not to spew, and I'll probably freak out everyone else - again.  But there's no point in putting my body through it at all if I don't do the whole recommended regime, right?

Why is this so hard?  I've thought and thought about this and still really have no idea.  I think a little bit is because every time I go it's a slap in the face with a big bit of wood that has 'I have cancer' burnt into it. Facing it like that can be hard, and to see the other people there - most of whom look awful - and realize that I am one of them is hideous.  I'm not in any sort of denial though.  I am reminded a thousand times a day, every time I get dressed, shower, hug my children, feed Bastian, have sex with my Husband (not often at the moment, I'm a shrivelled up menopausal prune) or look in a mirror it's there.  But going into that room and being part of that 'club' seems so much worse.

I think a big portion of it is that I am filling myself up with poison.  At the same time as I am searching for recipes to make my own washing powder (what is borax anyway), thinking about how to recycle my grey water and washing my bamboo and cotton nappies that I made myself out of my old flats, I am killing off my body's cells and hoping that they can regenerate faster than the cancer ones.  Rather oxymoronic I think. 

Every time I go and cry I apologise to my body.  It has served me so well all these years with minimal attention, it just carries on.  Growing me perfectly and growing and feeding 3 beautiful babies without me consciously doing anything.  Every breath is circulated through, delivering oxygen to every cell so every muscle can work.  Each heartbeat sends life coursing through veins that are expanding and contracting in response to every demand I make.  Every single nerve ending sending messages to my brain telling a story of the moment.  My eyelid blinks to keep my eyes clear, my hair grows to keep me warm, my tastebuds tell me whether food is safe to eat, scratches heal over, bacteria on my skin replicate to protect me.  And I don't need to ever think about any of it - until one day one little bit goes wrong.  Can I reasonably be angry at my body for making such a small mistake in the billions of things it needs to do every second?  I don't feel let down by my body at all.  I marvel instead at the incredible job it has done and continues to do - even while I try to poison it.  Is this how I say thank-you?  By saying 'I don't trust you to get it right anymore' and giving it another job. Anyone who knows me well knows that I am a stoic believer in the the body's ability to do what needs to be done.  We live and breathe because of the most intricate machine ever imagined. 

I have developed a new respect for my machine.  An understanding of how to look after it - what to feed it how to exercise it.  Maybe this is a reason for that one small mistake.  A reminder that my machine is after all just that. A machine.  It needs looking after in order to work properly.

Have I just been putting petrol into my diesel engine?

Too late now.

My Mum told me the other day that she has been able to read this blog for the first time.  I haven't been able to do that yet.  It is weird to think that people know my private inner thoughts so much, but kind of relieving to be able to write things that would be hard to voice.

I love you Mum and Dad.

Thursday, 8 December 2011

chocolate morning tea..

What a lovely mornig and a wonderful surprise for me at our morning tea.  My Mum and sister-in-law came, which I was not expecting at all.  And a friend and colleague from Hamilton surprised me too.  It was also awesome to meet a couple of Bastian's milk Mama's - and the babes that share with him ;-) Overall a really really good day for me, although I was knackered the next day.  We took a wonderful load of gold home with us and when we have Christchurch sorted I have figured we should be able to get Bastian to 2 years old with breastmilk.  That's a whole year of donor milk - what an unbelievable day that would be, and every single day we are grateful.

Also to those of you who (despite my very clear instruction!) managed to pay for some of the morning, thank-you so much :-) - in my most growly voice of course!

We have been again to see the radiation oncologist and have decided against radiation at this point.  It affects mainly loco-regional recurrences and although we have an estimated 5-15% chance of recurrence, it carries a reasonable risk of causing another type of cancer.  Also to give some perspective, my chance of recurrence is less than the average persons chance of getting cancer in the first place.  So at this point we've declined, but have left the option open for the future - if we ever need it.  Not an easy decision but I am a million times more comfortable with it than I was with the chemo.  There just seems to be more tangible information and once again Dr Childs was great, answering all our questions without pressure and very clear about his position.

So I have had my last Zoladex - only a month of hot flushes to go (assuming my ovaries aren't poked and I'm not going to be menopausal despite it), and one more chemo on the 15th.  I am certainly feeling the cumulative effects of the Taxotere in terms of fatigue/tiredness so Christmas may be a little less exciting this year, but it's ok because there's only one more to go! 

I am shaving my head on New Years Day and starting fresh and new.  The wispy locks will be gone, as will hair in my food, hair in the plughole, hair stuck to my clothes and hair in my bum crack :-)

I have also had a phone call from the genetics lady who has confirmed that they are going to do the genetic testing on me (the bloods have already been done) and we should have results in a couple of months.  A long wait and another fingers crossed time for me as we desperately hope that it is negative.  Not just for my ovaries, but for my sisters and parents and cousins and neices etc etc.  We can but wait.

Friday, 25 November 2011

forgot the time...

Forgot to put that I'll be ther about 11ish :-) If you get there earlier than me just grab a drink and a couple of choccys on the bill (I'll ring ahead if I'm a bit slow!)

Morning Tea in Auckland....


 Everyone who has been part of our experience with this business - particularly with the breastmilk, but also with any kind of support through my cancer Journey is invited to a yummy morning tea (on me and Bastian!!) at the Theobroma Chocolate Lounge in Sylvia Park next Saturday the 3rd December. We plan to have at least one hot chocolate and some yummy chocs :-) I wou...ld love if everyone could come, and everyone is invited who can make it - whether you live in Auckland, Hamilton or anywhere else :-) Come and have a pre xmas, chocolate delicious morning. And it would be so nice to put faces to name for us too!
xxxx (We are planning on trying to get to Wellington and Christchurch sometime next year too)

http://www.chocolatelounge.co.nz/

Sunday, 20 November 2011

can you send us yourselves?

I would love if everyone who has given us anything - whether it was milk or gifts or time or just putting good thoughts out into the universe  -  could send us a pic or a little letter or something.  I am going to try and do a scrapbook for him, and we have had some letters and pics from some wonderful Mum's and some lovely cards and gifts for all of us.  We can do email, fb or post - whatever works.  I think this is an experience that needs to be captured and I want to one day print off the blog and put it all together like a book.  Knowing me Bastian will be about 900 years old by the time I get aroudn to it so I had better start now...... :-)

Saturday, 19 November 2011

scar pic

so here's where we're at with the scar so far.  It's looking pretty good really.

Bastians placenta...

Ok, here's a discussion topic if ever I found one.  I've just discovered that even though Bastian's placenta is frozen I can still encapsulate it and eat it.  I did tell my Mum that I would drink cow's pee and eat alfalfa if that would help (thankfully neither of those has proven to be particularly useful), and I know for certain that eating placentae has real nutritional and hormonal benefits.  So do I go down that road but then he doesn't have a pot and a tree like the other two (although Charlie's fern died when we moved to Northland and was replaced by a succulent that they then dug all the dirt out of  - no sign of the placenta anymore - that is now surviving on fresh air!).  I'm sure that I could benefit from the nutrirional side of things, but would that be wasted while I'm doing chemo - or if I'm ever going to do it then now is the time?

A lot of people I know are going to really struggle with this idea - but I'm not serving them Placenta Pate, I'm not sharing with anyone.  If you want some get your own :-)

I have considered this with each of our kids but my husband thought it was weird and kind of gross.  Now we have extenuating circumstances.  It's nowhere near as gross as chemo!

Is it disrespectful to it?  Or is it honouring the placenta by following the absoloute natural path that the whole birth process would take (albeit a bit late...)?

I really like the idea that Bastian can help me, just like I help him.

Tuesday, 8 November 2011

my hair...

We're doing pretty good I reckon - definitely look like something is up and I may be a bit past volumizing shampoo but all things considered..... 

Another weird 'no breasts' moment...

When you have a bath you don't need a facecloth on your boobs to stop your nipples getting cold.... :-)

Taxotere

On thursday I went down and had the forst of three rounds of my taxane, Taxotere.  This is a 3 weekly cycle the same as the FEC.  I haven't been nearly as nauseous or hungover, but man I ache.  My legs and arms and neck and hands and ankles and back and just everywhere.  Like I've run a marathon (not that I've ever run a marathon but I'm sure it's not comfy the next day...) and then not stretched.  And a massage isn't going to help because my skin feels so bruised that it hurts.  And I am sooooo tired, just in my body.  Hot flushes, my first ever night sweat (I'll tell you that was a treat at 3am) and now I have BV. Great.

I'll try and attach a pic of my hair situation - it's astonishing really that I even have any left at all.  I'm the only person in the world who has to pluck their mono while on chemo!

On the up side, not retching into a plastic bag at MacD's is a nice change and so is being able to go home the same day as the chemo and not staying an expensive night in Whangarei.  The breastmilk situation is just incredible.  There are so many women expressing for us and keeping us going, not to mention the periodic offers of freezer stashes.  Eats on Feets rocks, without it we would be lost.  Kim and Sanford truck it around and Vanessa and Kelly and my family pick it up for me.  Bastian is getting so big and is really vocal, and actually a bit of a bruiser.  He doesn't realize yet about hurting others and so pulling hair and whacking are great fun activities at the moment.  He has a stroppy side and says 'no' with the world's cutest frown - looking up from under his eyebrows - while he throws the offending toy/food/drink/person across the room :-) At least he'll be able to hold his own with his brothers.

Raife has always been a little stroppy but still retains his super cute squeaky voice, and charms everyone with his freckles and swearing.  Sitting at the table muttering out loud his inner monologue he says "Mmm porridge, I love porridge, porridge makes you have big muscles, get outside Shade - fucken dog.  Oops I spilt a bit there...."  How do you not laugh!?

Charlie is 4. What more can I say. Anyone who has ever had a 4 yearold boy will be able to comiserate with me :-)  He has turned his ears off and turned himself on.  He does what he likes, when he likes with no regard to anyone else.  He is so frustrated and unable to control his hormones that I feel so sorry for him.  He yells at the sky in frustration and throws stuff because he doesn't know how to manage his feelings let alone undertand why he feels like he does.  But then he says 'Dad's gone to work Mum, so I'll look after you because you're sick'.  God I love that boy, and I've ordered a kid sized punching bag.....

So that's where we're at in our house.  My darling husband looks after me and keeps me sane, rubs my shoulders (hopefully, he owes me) goes to work and loves his children and his wife.  Really could I ask for more?

Saturday, 15 October 2011

almost halfway

Did the 3rd and final round of the fec on thursday, feeling a little like death warmed up today but at least I have a husband back.  It doesn't get easier and this time the only way I was letting that red poison into me was if i started it myself, which they let me do.  On the funny side - they seemed suprised that I was an hour with the new oncologist and not my allocated 15mins - I thought they had it figured but no....

I had a hard day this morning and a big cry.  It just all gets a bit much to take in and there are so many little reminders throughout your day.  Like how my towel won't stay up when I wrap it around me after a shower - my chest is now slightly concave.  Or how you lean forward onto a table/bench and rest your breasts on your arms, but now I just slip down.  At the time its funny but sometimes it just sucks.

Partly I think it's because I have my breasts sitting in a paper bag in my cupboard.  I picked them up from the lab and I'm not sure I want to look at them.  They are in formalin so they wont go rotten, and I'm pretty sure they'll be well chopped up. I want to see what the tumours look like - but I'm pretty sure I don't want to see my nipples.  Although I feel it's important to see someone you know after they died, so maybe this is the same.  I face it and grieve and then bury them with Bastian's placenta and my hair that is sitting on my bathroom cabinet.  I don't care if people think it's weird or crazy.  They kept all my babies alive and healthy for many years and never let us down - even when the cancer was growing in there.  They deserve a certain respect, in no less a way than Bastian's whenua,  Both are connections to his mother and his early life and he was the last to use them ( I'm not really including my hair in that - it just seems wasteful to put it in the rubbish and I'm at a loss with what to do with it...especially since I still have some)

The little note that comes attached to the very heavy bag says that tissue should be disposed of carefully and larger pieces should be returned to the lab for incineration.  Why on earth would I take them all the way home and then bring them back to burn?  How ridiculous.

I am tired.  Tired of being sad, tired of being 'fragile', tired of the world being poisonous in 3 week cycles and not being able to go anywhere, tired of injecting myself, tired of crying and sobbing in front of strangers, tired of being grumpy at the kids because they want me to come and play and I don't the energy to do it, tired of pushing myself, tired of having to rely on everyone else when it is so important to me to be self sustaining, tired of getting out of my pyjamas, tired of being tired.

Plus my dog is at the vets because her back legs have gone all wobbly and her eyes all flickery and the vet thinks she ate some poisonous mouldy stuff and she's really crook and she's my little boofhead and this is the last thing I need.  Poor Shade. 

Some days everything is too much.

Thursday, 29 September 2011

I was cuddling up with Raife - who has just turned 3 - last night, helping him drift off to sleep.  It was just the two of us in bed, he was actually off to bed early for tipping his dinner all over the table, and he was really nice and snuggly warm.   "I love you mum" he whispered to me and a small warrm hand slipped under my pj top and rubbed my belly.

I started to cry. 

This is what he did while he was breastfeeding to sleep.  My heart aches for him so much. I just want to be able to snuggle up with him like normal, and feed him and make him happy. He's done so well, so understanding and so accepting but it still makes me feel hollow.  You cannot even begin to imagine the empty space inside me that sometimes appears, knowing so well what we are missing.  I miss it so much it feels like physical pain sometimes.  Just the closeness and the warmth and the skin to skin.  Those beautiful sleepy eyes and that dreamy satisfied sighing.  He's so gorgeous and I feel like I miss out on time that I had with him now.

Appreciate every single moment, never resent 'having' to sit down and spend those precious few minutes marvelling at what a wonderful opportunity you have to fall in love over and over and over.

I have had to find different ways of mothering now, and still none is as easy or as satisfying or as simple as breastfeeding was.

Jaynie

Saturday, 24 September 2011

My Boys

I thought some more photos would be nice :-)
"Let me go! I've got a house to trash.."

Today was chemo day and grandma wore us out

Cheesy in PJ's

Why you shouldn't try using the vacuum to suck out your
falling out hair!

ooh he's so cute....

Grandma trick 1001 - read them to sleep...

I'm back...

Bastian smashed the lcd screen on the computer and it has taken a good two weeks to get it fixed, what a drama.

Daniel has gone away, come back and then gone away again.  He left on Sunday for 4 weeks and won't be back forever and god do I miss him so much.  Mum has come up and spent ages organizing her flights around the chemo but then they moved it a week out so she won't be here for round 3 which really really sucks.

So where was I up to? Oh yeah, that's right, I didn't buy jeans....

So Friday was the big day, Saturday was not so bad with a bit of nausea but nothing unmanagable, but Sunday was a treasure.  Daniel flew out at 7 o'clock in the morning and I went to Pip's for breakfast and a birthday party (bless her and her lot for taking me on :-) ).  I was sent to bed and had the most disgusting nausea for most of the day. Like being really really hungover and pregnant all at once - awesome.  Settled down over the next few days and after about 5 days I was just tired.

Went to the Cirque du Soleil in Auckland with Mum on day 10ish and had a lovely time but I had the sorest tummy for the whole next day back.  Did I mention I had the runs for 2 weeks following the chemo.  And I got my period halfway through all this?  Just fantastic.  Bloods were great so I didn't need to be too anal about touching poxy eftpos machines and supermarket trolleys, but was anyway....

Then jsut as you start to feel normal and jsut tired again, off you go for another turn.  And you'd think it would get easier - but you'd be wrong.  Same deal as last time.  Ok and sucking back rescue rememdy unitl they go to put that bright red poison into me and I lose the plot.  I'm talking ugly face crying here - snot and drool and and open mouth and heaving and hyperventilating.  None of this quiet sobbing business for me.  There were 3 older men in the room and it just happened that all their partners had wandered off, I'm sure they were incredibly uncomfortable but just watched in horror as I dehydrated myself right there in front of them.  After I had got myself together I was a subdued blob trying to chameleon myself into my uncomfortable armchair.  But after a few lollies I perked up a little :-)

So that was Thursday, and today is Saturday.  They have changed me from domperidone to stemetil (dom never worked when I was preg either) and I am not nearly as nauseous although the thought of eating anything is enough to make me want to spew.  I just had to give myself my subcut injection of the gcsf - never had to inject myself before and it's a good thing I'm not diabetic, I think physio ;-) could do it better - boy was that a treat.  Just feeling really seedy now.

Hair Update:
I am not yet bald but getting pretty thin.  The nurses were really suprised that I had any at all.  Legs, eyebrows/lashes etc all still normal.  Pubes and armpits have slowly declared themselves as on the move but don't seem to be in a hurry.  Lots of people have asked/suggested re shaving my head.  But anyone who knows me won't be suprised to learn that I will not be shaving my head just to make other people feel more comfortable about my cancer - I don't give two tosses how it looks :-)  Besides, i'm only doing this once so I want to see how it happens!

thanks so much to everyone for their support and energy - there are some unbelievably generous people out there :-)

Saturday, 27 August 2011

Did I do chemo or did I buy jeans??????

Chemo it was, but only just.  As we were going into the hospital and getting closer and closer to outpatients I was walking slower and slower and Daniel was holding my hand tight and kind of pulling me in.  We walked in and it was really busy so the nurse said we needed to wait - if I was to know that it was going to be two hours before we started I would have got back in the van.  But she kept saying, 10 minutes, 10 minutes (not unlike the fish and chip shop) so we get kept hanging around.

Eventually she called us in and hooked me up for an ecg - I don't have a murmer, good to know - then she put a bag of saline up.  In went the anti-emetics, dexamethasone and I think ondansetron.  I had a big talk to her about it at that point - as I still wasn't sure quite what was going to happen when she started the actual chemo.

We went out into the other room and she dressed in her disposable purple scrubs and gloved  and bought out the Epirubicin.  I started feeling sick and nervous at the sight of it.  It comes in 4 (I think) syringes of about 30ml and is bright red.  So she screwed the first one up to the line and was about to push it through when I told her to stop and burst into tears.  I'm talking 10 tissues at a time and ugly face crying.  I was pulling away from her as much as the line would let me and I told her I couldn't do it, so she unhooked it and put it back on her trolley, and degloved.  Another lady's support person made me a cup of tea and the nurse was relly understanding.  I had sent Daniel away because the kids were getting antsy and I had a feeling they didn't need to see that.

After about 15 minutes of crying and feeling probably more terrified than I've ever been, I said for her to do it. So she regloved and as she was getting it from her trolley asked me if I was sure.  Nope, I'm not sure, but do it anyway.  She hooked it up and started pushing it through without hesitation.  If she had stopped and that point and asked me again I am 100% certain I would have said no, unhook me, I'm going home. 100% certain.  And I cried and cried and cried, and told the incredible machine of my body that I was sorry for this, and promised to look after it as best I could. 

Having the mastectomy was scary, and emotionally debilitating and the implications on my family were almost too huge for my poor monkey brain to comprehend.  But doing the chemo is a million times harder than that, but they are not really comparable because it is in a different way.  It is intellectual not instinctual. So for me there are more unanswered questions than answered ones, and nothing useful to help me make a decision. 

It was hard because it is terrifying.  In a way I never anticipated.  I understand the implications, the short term and long term effects on my body's own systems, not just the chemo.  I understand that without the side effects I have no way of knowing whether it is doing anything.  I understand how hard my body is going to have to work just to manage the day to day living that I take so for granted.  I understand the long hard road back to health that my body and I are going to have to undertake.  And worst of all I understand that I am choosing to do this to myself.

Lots of people have said that it is a brave person that chooses not to do chemo.  That is so wrong - for the well informed person who is having adjuvant chemo for tumours that in all liklihood are not there, with drugs that might not work and no way to measure if they are - it is much, much harder to choose to do it.  Especially when I am very aware of what goes into and onto my body.

And I turned up - no mean feat in itself - and then I chose to have chemotherapy.  And I stand by my decision.  I will not change my mind, and will not regret my choice.  I have made the best decision for me based on the information that I had available at the time.  And it will be a relief to not be researching and reading about it anymore.  Google Scholar has nothing more I want to know about drug interactions, or modes of action, or whether epirubicin is a better choice than doxirubicin, or what alternatives to cyclophosphamide there might be, and whether taxanes are useful in my situation and if so is docetaxal the right taxane, and and how flurouracil interacts with everything else, and anthryciclines versus alkaloids in general, and how long it takes rats to die if they eat the carboard box versus the cornflakes that were originally in the box (oh wait, that was looking at breakfast for the boys). It is all so consuming so not going there any more is a huge relief. 

Now I can focus on other stuff, like looking at radiation options and how I can help my body manage these next few months.

By the way, the rats that ate the box lived longer than the rats that ate the cornflakes.  We won't be having those for brekky anymore.............

Thursday, 25 August 2011

Update on Bastian

The last two weeks he has got the hang of this eating business.  He is starting to eat real food not just paint, and boy do his poo smell funky.  We are starting to try to get him used to his Tanka to get away from using breastmilk solely for thirst.  The plan is to transition him to breastmilk only for sleeping, then only for nighttime.  He still wakes in the night - not a prob for me as the others often still do - so his intake over the dark hours is still quite reasonable.

Funnily enough his breastmilk poo smells very different but kind of the same as it did when I was feeding him, and his breath has that delicious warm breastmilk smell still very often.

I have finally stopped have prolactin induced sleep waves.  It has been very weird thinking about it in my non-mummy mind.  I must have really strong emotional feeding associations, not just physical ones, as every time I fed him until very recently I would get that kind of vacant, zoned out kind of feeling.  And at night I could hardly keep myself awake, identical to when I was breastfeeding.  This happens only very occasionally now and we are nine weeks out from surgery.  Also that glow that oxytocin gives you is coming back when i feed him as I have been doing skin to skin now that I am no longer sore and the dressings are off. 

the body is a wonderful machine :-)
At the moment we are on for tomorrow - I wont be totally comitted until it starts so you never know, I may just write tomorrow night saying it was a no go.

I am still 100% sitting on the fence. I don't want to do chemo - I didn't want bc or a mastectomy so that's not to say i wont do it - but I also don't want to not do chemo.  There is literally no information out there that can support me to make a decision either way.  And considering I work in healthcare I can say that if you are declining the current standard of care and protocol, or treatment, you need to be very certain that you are doing the right thing for you.  And I wouldn't be.  I would end up not doing it because I left it too late and couldn't make a decision.  That is not a good reason to decline anything - sticking my head in the sand is in no way helpful.

So I'll go do it and follow the masses.  You never know, in 20 years they'll say thank goodness you did it (never mind there's an equal chance they'll say why the hell....).  Resign myself to it really.  I am a research based person and other than vitamin c, there is no good quality, unbiased reasearch to support alternative treatments on their own, nor any way to measure them against chemo in terms of efficacy, harm vs benefit ratios or anything else.

And I start on daffodil day, weird.

To top it off Daniel is going away for 2 weeks training in Wellington on Sunday, then back up here to do a week of training, then back down to Wellington for four more weeks.  I have family coming to stay during his second stint and hopefully a friends' daughter will be able to come and help for the first two weeks.  After that it'll only be a problem if Daniel's shifts are all wrong for us.

On the bright side I started Charlie at a preschool 2 days a week (he'll do his 2 at playcentre still).  They are really good and we can come and go pretty much as we please and not obligated to any specific hours.  After a vist for half an hour and then 2 half day sessions with me there he says "on the next day mum you can just drop me off and the teachers can look after me.  I can tell them to ring you to come if I need you".  So I left him there and he didn't even look longingly at me as I walked out.  He wasn't remotely sad/upset/worried or fearful.  All those hundreds of hours of co-dependant relationships and attachment parenting have paid off -  and the one child I worried most for in terms of being without his parents strode out into his childhood, knowing intrinsicly that his Mum has got his back.  And now Raife is desperate to go too, so when he's 3 (in 4 weeks) he'll start too.  What on earth I'll do with my day I don't know, but Bastian is sure going to get some hardcore Mummy-love :-)

Friday, 19 August 2011

to chemo or not to chemo...........

The pressure is unbelievable.  We start chemo in a week, and not because I think it is the right decision but because of pressure from everyone else - particularly family.

 I'm not sure I believe it would have any real benefit - there is no way to test if it works, or even if there are any cells for it to work on.  The research  for one of the drugs is based on research done on a 'similar' drug.  There isn't research on their interactions.  There isn't any information on anything really.  One of them has the same chance of giving me a heart prob that can kill me as it does of improving my overall survivall. The onco said they have one lady who - 2 years after chemo - is only just getting feeling back in her hands and fingers.  I don't want to do it, but then who would.  It doesn't necessarily mean I wont do it.  I went and had my breasts cut off and I most certainly didn't want to do that.

And people are so naive.  They really believe that I will die if I don't have the chemo and so they ring me and say "I want you to be around" and "I want you to live, please do it" and bla bla.  Well actually it's not about what everybody else wants, it's about what I want.  And there is nothing that says that either I will die if I don't have it, or that it will work if I do.  But they don't want to hear that.  It challenges the belief that chemo will 'fix' it.  Which is kind of what I thought when all this started.  Now I know better.

I am sick of hearing what everyone else wants.  Then there is the guilt trip tack that people try and take which I find even more frustrating and low. "You want to be around for your kids".  How dare people use my children as a bribe to try to make me take chemo.  And how dare they assume to know what I want or that I need speaking for. And yet it is the most common comment I get.  The fact that people whould stoop that low is incredible.  Yet more unbelievable is the fear that drives those comments, and no matter how hard I try to explain to people that chemo is no sort of gaurantee of anything except side effects they don't want to hear it.

Now I know that this all comes from a good place and I know that people are actually trying to be helpful or express their concern and love for me but how about "I love you, do what you think is right for you".  That would work much much better.  I understand that people are having a hard time coping with how looking at the mortality of someone they love makes them feel (and I know that everyone wants to be able to hang out with me for as long as possible because basically I am super-wicked-awesome).

So I am going to do chemo not because I think it will 'fix' anything but because pressure from other people is pretty much the only tangible thing there is.  If I didn't have that pressure I would end up not doing it by default because I don't have enough information either way.  Is that bad or normal?  Sometimes I wish I had more faith in the medical system, unfortunately I work in it so I know all is not how it appears.

I will pump my body full of toxic poison and hope for the most side effects I can because that at least is a sign that the chemo might be doing something.  I will trash my ovaries and risk the possibility of having more babies because then other people will feel better about my breast cancer.  I will risk my life for the same chance of extending my life so that I can do the 'right thing' by my children.

God help you all if I get a sunburnt head.....  :-)

Thursday, 11 August 2011

Furious with Northland District Health

We went to our other oncologist appointment yesterday.  She seemed much nicer than useless onco1 and told us as much as she had time to.  Apparently the chemo only works on circulating cells that are looking for a place to become a tumour, not really on tumours already there - surgery is the answer to them.  So the chemo is working on the 20% chance that there are cells there that are trying to become tumours.  Unfortunately there is no gaurantee that the chemo will even work for me - that seems to be pretty hit and miss - nor is there any way of checking whether it works or not.  There is nothing to check on.  So they want me to have chemo on the premise that there might be cells that need destroying and if there are then the chemo might work on them, but we'll never really know unless it all turns to shit years down the track.

On top of this one of the drugs increases the overall prognosis by 2-4%, but it also carries a risk of cardio-toxicity (it could screw up my heart when I'm older, and potentially I could die from this) by guess what, 2-4%.  It has the same chance of making me worse as better. This is just getting harder and harder.

There seems to be no point in splitting the drugs up at all, and they are also working on the idea that this drug is pretty much the same as that drug so it should do the same job but we don't really know because they haven't ever been independantly tested........good luck and off you go.

The worst thing is that after a month of seeing surgeons and nurseses and almost 7 weeks post surgey, and seeing 2 oncologists and 1 on the phone, it was the nurse who says to me "if you don't start chemo by 12 weeks there's not really any point in doing it at all"............ WTF...........

They're telling me this 5 weeks out from the 12 week mark and I'm supposed to have time to make a decision re IVF then do it in this time frame.  This is negligence, pure and simple.  I should have been warned of this prior to surgery.

So I call her and ask her if she's telling me that because of the public health system's  inefficiency I have to choose between chemotherapy or babies?  She sputters a little then says she'll speak to the oncologist and call me back.  The onco has then deigned to say that she will still administer chemo but cannot gaurantee it will be worth the side effects as there is no research that extends past the 12 week mark.  The nurse couldn't tell me if there is a decline in efficacy or just that the research stopped for no good reason.

Again, WTF

When all this is done, I swear this DHB is being hauled over through Health and Disability Commission.  They cannot juggle people's lives because it is more convenient.

I am so angry.

Wednesday, 10 August 2011

on the radio...

Check me out on the radio tomorrow morning (Thursday 11th August) at 7.45am on Classic Hits.  I'm going to famous again :-)

Sunday, 7 August 2011

I'm feeling frustrated and so full up of useless information that nothing else will fit.  We need to decide what to do about fertility.  The useless onco sent me a copy of her letter to the gp and surgeon saying we had a 'detailed discussion' (ha!).  It also said there was a very small chance of amenorrhea and reduced fertility.  The great - but private - onco that we spoke to said 20-30% chance I would become menopausal with chemo.  Got a letter from Fertility assoc saying they estimate 30-40% chance of menopause.  Noone seems to know whether 15 years of the pill has made a difference and kept me with a greater ovarian reserve or not.  Everyone says take GnRH to help protect my ovaries, but none of them know whether that will work or not.  The results of my AMH bloods, that tell me my 'reproductive age', have taken ages to come back, my cycle has started without us making a decision and so if we want to go down the $11,000 path of ivf, then chemo has to wait another month. 

My brain hurts and I haven't yet begun on the 12 pages from medsafe about epirubicin, or the 34 pages about cyclophosphamide - got disheartened and didn't look for any more.

Our wonderful donors are doing a great job, but we seem to be scraping by on the skin of our naked wee bum (Bastians, not mine!) and often the milk that is in the freezer is only a days worth at a time.  What I need is someone who has a well baby with 20 litres in their freezer (!) - not that I am in any way ungrateful for what we have.  To have come so far on the generosity and time of other people is incredible, I just worry.

I am beginning to think there is no way I am ever going to be able to make an informed decision about chemo and fertility and oncologists, and pre-schools (our playcentre doesn't have extended sessions) and I have a hungover husband with the squits, 2 children spewing non-stop, a wee boy allergic to sleeping with a burst eardrum again and a cough.  I have the worlds most throbbing headache, I'm cold and dehydrated, I haven't had a reasonable sleep for about 2 months (all I ask for is 5 hours total, I don't mind broken sleep - I'd just like some...), I'm  going in for another general on Friday and to top it all off so nicely, I have my period.  Oh, I nearly forgot - I have breast cancer too....

sorry. feeling a little bla today............

Sunday, 31 July 2011

Things I wasn't expecting

I thought I'd throw up a list of things that I didn't really consider regarding the surgery and the experience so far - it might help make life easier for someone else one day... *Your breasts keep you suprisingly warm, I have been really noticing the cold and having to wear way more layers than ususal
*You don't ever get nipple freeze :-)
*You cannot get your elbow level with your shoulder or straighten your arm for a few weeks
*You have to wear checkered farm shirts everywhere for about 4 weeks because you have to wear tops that open at the front - you can't get your arms close enough to your head - and that seems to be all there is!
*You can't lift anything. Even a 1.5l bottle is too heavy by the end of the day.
*You sometimes can't open the fridge
* I couldn't reach the shower taps to turn it on, or even the soap dish (both about chest height)
*Hopefully your toilet paper is next to you and not slightly behind as you can't put your arms back like that - wiping your bum can be tricky too...
*You can't get dressed or undressed, have a shower, wash 3/4 of yourself or walk too far by yourself for a few days - longer for the showering and dressing. I can only just get tops on and off over my head by myself now.
*You can't lift your kids, or cuddle them close, or even have them on your lap - one little bump is excruciating in the first few days
*Morphine makes you feel nauseous
*Anti-nausea meds don't always work
*Morphine still makes you nauseous
*Different meds make you feel no nausea but morphine makes you tired and dopey so when visitors come you are very very boring.......
*Hospital food can make you more nauseous than the morphine
*Hell's Pizza will deliver if you ask them :-)
*You can't sleep because being comfortable is impossible.  You have a drain for each breast and another one for your lymph nodes, so each one is a big long tube - about a metre and a half long - that is joined to a litre bottle at one end and you at the other, but luckily they give you a black fabric shopping bag to carry it all in when you go to the loo...(you can fit your catheter bag in there too when you go for your first shower) you will probably go home with them still in.
*Lying down flat is hard because the drains are just far enough around that you lie on both of them just a wee bit, and you can't lie on your side, let alone roll over.
*Kids think hopsital is really really really boring until they bring you the big 1950's orphanage cot for the baby, and the kids love pretending they're at the zoo
*You can't make a cup of tea without help at home
*Going to playcentre is a definate no-no for at least a month - way too tiring
*People make you so much food it's incredible, and delicious
*Kids think your drains are amazing and want to see them all the time
*DON'T get a seroma
*Vitamin C is really good, but having holes poked into you twice a week is not
*Haematoma's hurt more than mastectomys
*Morphine doesn't always work that well for haematomas
*More morphine works great :-)
*Get a physio who knows about mastectomy
*The right surgeon makes all the difference
*The wrong oncologist needs a different job...
*Smoking weed and drinking your own wee is not as likely to cure you as some would have you believe...
*You get used to feeling really useless, and just when you start to relax into letting visitors do eveything for you they all go home and you have to do it all yourself - this is really dumb!
*There is never a minute where you are not thinking about cancer, surgery, your old boobs, your sore arms, the upcoming 50 thousand hospital trips, the suck oncologist, the million other tests you should/shouldn't do, the trillion vitamins you 'need' to take, the weird person who sent you a message about smoking weed (what if it does work?!), how much your husband does with the kids - geez he's awesome, the itchy patch on your side that the stickyplaster is irritating, the seroma you are developing, the seroma you are imagining developing, the headache than means you probably have it in your brain, it prob won't matter if it's in your brain because having three general anaesthetics in seven weeks will fry it anyway, how long it's been since you shaved your legs or underarms, the crap you are about to pump into your body to fix something that might (or might not) be there, how cold it is without breasts, how friggin' freezing it's going to be without hair, what shape will your head be under there anyway, whether you should get a Jerry Hall blonde or a Scary Spice afro wig, how wonderful yur husband is and how tired you seem to be (but maybe that's three little boys!). But most of all I think about when the next lot of breastmilk is coming and how much will it be.

Somewhere in there I manage to find space to throw out thanks to all the wonderful people who do so much for us.  The people who make us meals, who bring us fruit, who send us fantastic handmade gifts that really make our day when they come, who send us lovely special soap, who look after our boys when we call them without notice, who insist we stay for tea when we just dropped in for a visit, who travel for hours just to see us and tell us they love us, who sit with me for hours in Vitamin C, who are patient with our mingy veins when we're doing vit c, who pay for all our tests and costs without even blinking, and all those incredible women who give us their milk.  Every single one of you has made a difference in the long hard road that is and will be our experience. So I find space in amongst all the crap inside my head for you all :-)

Man, it makes me tired just thinking of all this............ ;-)

Sunday, 24 July 2011

A month down the track......

This is how I am looking exactly a month down the track.

We discovered the weirdest thing last night.  The comfeeel dressing was removed on Friday and my skin has been uncrinkling itself, and last night we discovered that what we originally thought was uncrinkled lines are in fact the bottoms of some of the stretch marks I didn't know I had underneath my breasts!  It's kind of weird as it is a remnant of my breast and so makes me a little sad.  Mostly I am confused about how I feel finding a little bit of my breast there when I had been trying to accept they were gone.  Part of me feels glad that I have a bit of 'proof', but am I going to be paranoid in the future that there might be cells in that skin?  Dunno.

Here is a beautiful pic of our boys and Bastian who has been thriving on donor milk for a whole month already!  He is getting a bit chubby and his hands and feet look right porky :-)

Grace Gawler

We had a skype consult with her on Friday night.  She used to be half of the Gawler Foundation in Australia but says it has changed a lot since she was part of it.  She comes strongly recommended by a family cousin who found her to be an intergral part of her own journey through breast cancer.  She seems to be an advocate and liason and information vault for people with cancer.  She seems to have an extraordinary amount of knowledge, experience and contacts.

The first thing she said was that she was not happy with the FEC-T treatment.  What a surprise, neither are we!  She also asked what our results from our CEA test were - I had never heard of this and she seemed to think it was very remiss of the onco to not have done one as it is a standard marker of disease, even in NZ. 

She is very very confident in the CTC test, and her advise was to start with a new oncologist, continuity of care and care tailored to our particular situation.  She is going to try to find an oncologist who is aware of CTC testing in NZ (she has access to who attends their conferences) and if that shows nothing we may have the option of going to the gold coast and seeing an onco there.

She was more than helpful and had lots to offer.  So our road now is CTC, and finding another specialist (who is not a tight lipped, power tripper) and getting more info on GnRH.  It's frankly fairly exhausting but we have found ourselves well supported by friends and family and people we don't yet know :-)

Fertility Associates

On Friday we went back down, saw the surgeon again for probably the last time and only very briefly between her surgeries.  The breastcare nurse took the drain out and so far so good.  Fingers crossed.

We also saw Fertility Associates who squeezed us into their once a month clinic up here - which was way better than driving to Auckland.  He didn't have much to offer other than to absolutely recommend the GnRH and we would need to see gynae to get that sorted.  We won't be funded as we already have 3 young children and a cycle will cost around $11,000.  He knew that Cyclophosphamide (the 'C' in FEC) was really bad in terms of fertility but the oncologist should have explained why it was - points off for the oncologist, again.

He answered our questions about why early menopause may happen and the implications on fertility and pretty much all our other questions too.  He was pretty good and even said he would ask his colleagues more specific information around the action of the cyclo.

Was impressed, but gutted.

I haven't finished having my family and even though I'm not sure at this point if I want to have more when I can't breastfeed them, I'm certainly not happy to have that option taken away from me.  Not really wanting to delve into this to much as it is a bit raw at them moment...

Oncologist

The surgeon was off sick last Thursday when we turned up so the drain had to stay in - in terms of the day that was the best thing that happened.

We saw the oncologist and my god that was a waste of petrol.  We turned up and she spent 5 of our 15 minutes looking and feeling the scar, another 5 telling me what I already knew - ie triple negative, 1/15 nodes bla bla bla.  She did say the bone scan was fine - which was good. She then asked what kind of other medication we were having and we started on the list, but she only wrote down a couple of them as she wasn't paying attention.  Then we started getting challenging for her I think.  She said "you will be having chemo called FEC-T" (not you can choose to have chemo) and proceeded to tell us how frequently and what the side effects were.  One of the things she said as she was going through her list was 'cardiotoxicity' and when I interrupted to ask what this meant she replied that it was just that 2-4% of people may have a heart attack as a side effect - this is for a drug that may give you a 2-4% increse in overall survival.  Hmmm, seems a bit like 'if it doesnn't kill you first it might make you live a longer' - not reassuring.   She also said it might affect my fertility and cause ammenorhea, but that was the fertility people's job to talk about as she isn't a fertility expert.  Fair enough, except there is a big difference between your periods just temporarily stopping, and having an early menopause.  Hmmm, not really warming up to her yet.

When I told her I wanted to know how each of the drugs worked, what they did and why them and not others she replied (and i quote) "I don't have time to tell you that, I have other patients and a plane to catch".  This is where I started to think things were not going well.

She told me that the FEC protocol was used because it showed a little better statistics and the Taxotere was used because it was funded.  That's all I got.

When I asked her whether she would still recommend them if money wasn't a problem she replied that "if you had a million dollars and went to the States you would have exactly the same ones".  Now I know she's full of shit.

I told her that I was not going to have a drug that if I didn't what is was doing and she repeated that she just didn't have time, but the nurse will give me a handout (which was nothing except the FEC protocol, which she had just explained to me).  She said I needed a port but didn't elaborate (if I didn't already know what it was I wouldn't have had nay idea what was going on then). 

I asked her what she thought about IV vitamin C.  She decided I was having it to increase my immunity and that all it would do was protect the cancer cells.  We decided not to pursue this as she was clearly trying to shut it down without offering anything useful in the way of intelligent information.

We mentioned GnRH in terms of trying to provide some protection to my ovaries, and she seemed quite positive about this.  Interesting considering it is still not yet proven to work to the point that it is implemented as standard practice and research is still ongoing, but she's happy to 'approve' of GnRH and not Vit C.  How is it any different fron the Vitamin C, that actually has far more research to back it up?  Hmmm.

Then I lost all respect for her.  I asked her about CTC tests.  She had no idea.  She started to say that if the test could show what drugs the cancer would be susceptible to then it could possibly be useful, and when we replied that that's exactly what it did she tried to fob it off.  She then tried to suggest that there was no research to back it and there needed to be research to say that using CTC tests could improve outcomes.  When we replied that this is exactly what there was and we had bought that research with us she did her best to ignore it.  I then asked her if I did the CTC test and it showed that a differetn drug was ore uselful on my type of cells would she prescribe it, she outright said no.  Then looked gobsmacked when I told her that if the test came back saying the cells were not sensitive to one of the ones she had recommended, then I wouldn't have it.  There was no offering of discussion re this or more room for information. 

She hustled us out the door to get an appointment in 3 weeks to get the wound looked at again, and start the chemo.  We were given standard hospital handouts including one on a port but no info about how or when this would happen - maybe she thinks I can put it in myself?  And were told we woiuld get an appointment in 3 weeks, but it would probably be a different oncologist as they all come from Auckland.

I am furious, and disappointed, and pissed off, and have not reall gained much at all from going. She didn't even tell us why she though we should have chemo or how much of it we might get.  There was no room for informed choice at all, and there was certainly no suggestion of gaining consent.  I am thinking I might make a complaint to Health and Disability.  If it was someone who had even the tiniest bit less gumption they would be slung along in the dark pumping their bodies full of poison that they know nothing about.  It makes me sick when my job is centred around supporting people to make choices that are right for them - no matter whether I believe they are right or not, and continuity of care.  I am so angry.