tag:blogger.com,1999:blog-35733428072931680612024-03-06T19:36:26.710+13:00Breastfeeding with CancerMy name is Jaynie. I am 34 and have three boys aged 5, 4, and 2 years. I was a tandem breastfeeder and was diagnosed with invasive breast cancer. I have used donor breastmilk for over a year now and appreciated every drop. Please check out my facebook pages, Boob 2 Babe and Love for Jaynie.
Here begins my journey..........Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.comBlogger79125tag:blogger.com,1999:blog-3573342807293168061.post-87603926286925584212013-05-02T16:35:00.000+12:002013-05-02T16:35:43.207+12:00Long overdue updateSo much has happened this year already I don't know where to begin....<br />
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*tumour markers started to go up so reviewed oral chemo and decided on an iv alternative called Gemcitabine<br />
<br />
*had some really really bad days<br />
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*playcentre rocks as usual<br />
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*decided to move to Whitianga after bad days - need support as my friend who supports me is going to be moving to Australia<br />
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*moved to Whitianga<br />
<br />
*changed onco, health board, gp everything. New onco really really good.<br />
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*added carboplatin into chemo as BRCA positive<br />
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*having regular x-rays and tumours decreasing visually even though markers say otherwise<br />
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*Charlie started school, Raife at Steiner Kindy 5 days, Bastian at playcenter 3 days<br />
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*Chemo 2 weeks on, 1 week off<br />
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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.<br />
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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.<br />
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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.<br />
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xxxxBreastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com38tag:blogger.com,1999:blog-3573342807293168061.post-16178853509366478032013-01-02T21:00:00.000+13:002013-01-02T21:00:25.889+13:00Tumour 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.<br />
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On the sad side.<br />
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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.<br />
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And it makes me so sad because they are also going to teach these wonderful babies how to breastfeed.<br />
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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?<br />
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Once again cancer fucks everything up.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com125tag:blogger.com,1999:blog-3573342807293168061.post-86942520439160324052012-10-31T18:55:00.003+13:002012-10-31T18:55:41.156+13:00YAY - Great news!!I finally had a scan that gave me good news - don't know that I've had too many of those!<br />
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Latest CT says that the nodes have NOT increased in size, and some of the larger tumours have definitiely shrunk (I repeat DEFINITELY SHRUNK).<br />
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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!!!<br />
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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!<br />
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The prayers, and vit C, and chemo, and healing massage have all been doing their thing. I'm so thankful and so happy today.<br />
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Bring on the world :-)Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com11tag:blogger.com,1999:blog-3573342807293168061.post-56098409118726237532012-10-15T14:08:00.002+13:002012-10-15T14:08:41.033+13:00NadiaA 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.<br />
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It doesn't get more familiar than that.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Nadia died on October 3rd. <br />
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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.<br />
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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.<br />
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Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com7tag:blogger.com,1999:blog-3573342807293168061.post-53816435968402595712012-10-15T13:46:00.001+13:002012-10-15T13:46:39.944+13:00updateSo 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. <br />
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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.<br />
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Can't complain - except see next post..........Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com2tag:blogger.com,1999:blog-3573342807293168061.post-87227615562386925162012-08-31T18:43:00.000+12:002012-08-31T18:43:35.215+12:00Starting to poison myself againWe started tonight with capecitabine. Chemo again. More poisonous crap inside me, more 'preciousness' and feeling like arse. <br />
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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.<br />
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I just don't know how to come to terms with the fact that I am dumping this stuff into myself.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com8tag:blogger.com,1999:blog-3573342807293168061.post-41044482442224058142012-08-01T08:36:00.000+12:002012-08-01T08:36:08.671+12:00Greece TestOk, 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.<br />
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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.<br />
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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.<br />
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So I just need to convince the onco to give it another go..... wish me luck!Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com9tag:blogger.com,1999:blog-3573342807293168061.post-26013130753641563032012-07-06T07:46:00.000+12:002012-07-06T07:46:19.643+12:00Vitamin CI 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.<br />
<br />
But....<br />
Ascorbate - RMF Neutraceuticals<br />
IV lines - Bamfords<br />
Sterlie water - pharmacy<br />
water,syringes, needles etc - hospital stores via gp<br />
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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!<br />
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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.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com4tag:blogger.com,1999:blog-3573342807293168061.post-7505019581548588192012-07-05T11:29:00.000+12:002012-07-05T11:29:04.437+12:00CT 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.<br />
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I had better have been on their list...<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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I lay like this for 2 and a half hours.<br />
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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.<br />
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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.<br />
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We were home just before 5pm, what a long day for everyone.<br />
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Lung biopsy done...(I hope..)Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com3tag:blogger.com,1999:blog-3573342807293168061.post-19857231313858471012012-07-02T14:54:00.000+12:002012-07-02T14:54:12.765+12:00I 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.<br />
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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.<br />
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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.<br />
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It was a year since my mothering was stolen, a year since my health was stolen, a year since my <strong>self</strong> was stolen.<br />
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And it was a whole year since I last breastfed.<br />
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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.<br />
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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.<br />
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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.<br />
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I will not cry for me because I fear I will never stop.<br />
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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. <br />
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Time does not heal everything.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com8tag:blogger.com,1999:blog-3573342807293168061.post-17072978237743501732012-06-22T09:43:00.000+12:002012-06-22T09:43:56.966+12:00Bad 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. <br />
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Off I went to the local little hosp. <br />
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Where the ED doc told me the chest x-ray showed tumours on my lungs, confirmed by a radiologist.<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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Will write more when I have time.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com3tag:blogger.com,1999:blog-3573342807293168061.post-74563411045318921772012-05-28T19:22:00.000+12:002012-05-28T19:22:07.506+12:00Yay 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.<br />
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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.<br />
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CONS<br />
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.<br />
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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?<br />
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If I die in a few years my husband has another, younger baby to try and manage on his own.<br />
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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.<br />
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PROS<br />
A new baby is such a healing process - helping you to remember the passion and love of life.<br />
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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.<br />
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Your body is made for pregnancy, it is normal and healthy and is what your body is 'supposed' to be doing.<br />
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There are so many wonderful women out there that I <em>am </em>confident I could get milk.<br />
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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. <br />
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But I <strong>so</strong> want another baby....Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com4tag:blogger.com,1999:blog-3573342807293168061.post-17000030090260606012012-04-08T09:50:00.000+12:002012-04-08T09:50:13.876+12:00homeschoolingIs 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?<br />
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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.<br />
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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.<br />
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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 :-)Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com1tag:blogger.com,1999:blog-3573342807293168061.post-862080054761045442012-04-08T09:48:00.000+12:002012-04-08T09:48:35.186+12:00Milk updateI 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 <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcmYNHp0pumQgdWIo9-8tGJchhk6RqjKQU6p1w7DinUN9HaCzmABdTtHFlBAprWyhv0OOF-7u4dCNKv2lsxcJL2YbcGGgxmcXNSro5E-UddPXCmYTgJdw8sP_6l1vEiCxRGY85Po52Dtl/s1600/!cid_C__Private_20021367_temp00_24032012388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVcmYNHp0pumQgdWIo9-8tGJchhk6RqjKQU6p1w7DinUN9HaCzmABdTtHFlBAprWyhv0OOF-7u4dCNKv2lsxcJL2YbcGGgxmcXNSro5E-UddPXCmYTgJdw8sP_6l1vEiCxRGY85Po52Dtl/s320/!cid_C__Private_20021367_temp00_24032012388.jpg" width="320" /></a></div><br />
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. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNk2Mq1e6OxoS2RpbSeTFiIl3_xsVvH5WYjhXvoWwVNmpRuW28FBUjcll0vsU3n-hN93cZke9UYWLT5VPsb_xsv61c7BO02-PzQp7a4XiNrKtGyBKNLpamvZJgYLgigbe-OU99XN606HCG/s1600/!cid_C__Private_20021367_temp00_28032012410.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" nda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNk2Mq1e6OxoS2RpbSeTFiIl3_xsVvH5WYjhXvoWwVNmpRuW28FBUjcll0vsU3n-hN93cZke9UYWLT5VPsb_xsv61c7BO02-PzQp7a4XiNrKtGyBKNLpamvZJgYLgigbe-OU99XN606HCG/s320/!cid_C__Private_20021367_temp00_28032012410.jpg" width="240" /></a></div>Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com1tag:blogger.com,1999:blog-3573342807293168061.post-49202519133677901572012-04-08T08:56:00.000+12:002012-04-08T08:56:31.867+12:00Latest onco appWe 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.<br />
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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 :-)<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com0tag:blogger.com,1999:blog-3573342807293168061.post-46417046324796403472012-04-08T08:40:00.000+12:002012-04-08T08:40:39.595+12:00BRCA2 PositiveI'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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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<em> not </em>haivng breastcancer. This is what I struggle with in terms of my family declining/ignoring genetic screening. <br />
<br />
I do not want a single one of them to go through that.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com2tag:blogger.com,1999:blog-3573342807293168061.post-86770506372189348272012-04-08T08:13:00.000+12:002012-04-08T08:13:50.342+12:00It'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 :-)<br />
<br />
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.<br />
<br />
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?<br />
<br />
Anyway, February rolled around uneventfully. Except for one thing. I got my genetic screening results back....Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com0tag:blogger.com,1999:blog-3573342807293168061.post-50584725940578617392012-01-26T20:52:00.000+13:002012-01-26T20:52:21.511+13:00was feeling sad....then I found this...<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFiMSDQr9yqO8TUiJSxdRnZDCbjnWFi_1eoAsg9O_02NM6Im1heFuXwH8W-67eTbisvs5U5QpkMW3v6DnPRQNn8W-0HrpWuyiLD5OhdSFPTkcqI5yHDJAqowC-OY9mKn15gBhZEAdyAg5N/s1600/b1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFiMSDQr9yqO8TUiJSxdRnZDCbjnWFi_1eoAsg9O_02NM6Im1heFuXwH8W-67eTbisvs5U5QpkMW3v6DnPRQNn8W-0HrpWuyiLD5OhdSFPTkcqI5yHDJAqowC-OY9mKn15gBhZEAdyAg5N/s320/b1.jpg" width="320" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI8PtZ-UKGBiQfWjhQamz3BG1NakizGhGP392KeRNqvw1CFiLAK3LghkzFEqASp3vcss1uR8gEuAjlmxnTS3vu41DA79rOkGetytljUSl6vABXs_Rypi1DoQF_UOPYMFN64SA8RqDj-R5F/s1600/b3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" gda="true" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjI8PtZ-UKGBiQfWjhQamz3BG1NakizGhGP392KeRNqvw1CFiLAK3LghkzFEqASp3vcss1uR8gEuAjlmxnTS3vu41DA79rOkGetytljUSl6vABXs_Rypi1DoQF_UOPYMFN64SA8RqDj-R5F/s320/b3.jpg" width="320" /></a></div>Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com2tag:blogger.com,1999:blog-3573342807293168061.post-69107737550549858952012-01-26T20:38:00.000+13:002012-01-26T20:38:55.166+13:00So 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. <br />
<br />
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. <br />
<br />
I ransack the tent, our bags, the car. Nope. None. <br />
<br />
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.<br />
<br />
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.<br />
<br />
Some days it's so hard, and I blink back the tears as I write this. Another awful reminder.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com5tag:blogger.com,1999:blog-3573342807293168061.post-9341036334226634242012-01-15T09:13:00.000+13:002012-01-15T09:13:28.965+13:00I 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 :-)<br />
<br />
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. <br />
<br />
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?<br />
<br />
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 :-)<br />
<br />
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!<br />
<br />
It is about keeping ourselves well and healthy. And it is so good to be alive and to be part of my wonderful family.<br />
<br />
Bring on the rest of my life :-)Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com6tag:blogger.com,1999:blog-3573342807293168061.post-5513468538895547022012-01-01T21:34:00.000+13:002012-01-01T21:34:01.846+13:00Happy New YearWe 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! <br />
<br />
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!<br />
<br />
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.<br />
<br />
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. <br />
<br />
Slowly slowly.<br />
<br />
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..<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEhkzbqBpJ5gAt5X1CDTbeJYOgTIQXBPjPmWBYubjLZi7epkCm4MWzXqPBfnULYzpytZukjC26ksC1ixXm32cUye3LMhwuZEIC1gYN11YUktSpaH55f2t6FNmRLgmEjh71PbmemCknQ993/s1600/%2521cid_C__Private_20021367_temp_01012012183.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEhkzbqBpJ5gAt5X1CDTbeJYOgTIQXBPjPmWBYubjLZi7epkCm4MWzXqPBfnULYzpytZukjC26ksC1ixXm32cUye3LMhwuZEIC1gYN11YUktSpaH55f2t6FNmRLgmEjh71PbmemCknQ993/s320/%2521cid_C__Private_20021367_temp_01012012183.jpg" width="179" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDxX2SvT1oPASvGKBpQVlg5qEQQneKEggXPWbKLKknDksR5BqWOyzqWAp0iBB8UgFgSIwdm1AWpxcPbALhwigXbH54LU4MD132JFoDSg5tfXcreZJgiVmlDFBq4Rl7J85vFW5hv_18irwJ/s1600/%2521cid_C__Private_20021367_temp_01012012179.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="179" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDxX2SvT1oPASvGKBpQVlg5qEQQneKEggXPWbKLKknDksR5BqWOyzqWAp0iBB8UgFgSIwdm1AWpxcPbALhwigXbH54LU4MD132JFoDSg5tfXcreZJgiVmlDFBq4Rl7J85vFW5hv_18irwJ/s320/%2521cid_C__Private_20021367_temp_01012012179.jpg" width="320" /></a></div>What wonderful women you are :-)Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com2tag:blogger.com,1999:blog-3573342807293168061.post-3005434942079131622011-12-15T06:15:00.000+13:002011-12-15T06:15:39.873+13:00Last chemo todayIt'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.<br />
<br />
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 <em>not </em>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...?<br />
<br />
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?<br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
Have I just been putting petrol into my diesel engine?<br />
<br />
Too late now.<br />
<br />
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.<br />
<br />
I love you Mum and Dad.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com6tag:blogger.com,1999:blog-3573342807293168061.post-59956031842356217502011-12-08T16:05:00.000+13:002011-12-08T16:05:56.527+13:00chocolate 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.<br />
<br />
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!<br />
<br />
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.<br />
<br />
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! <br />
<br />
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 :-)<br />
<br />
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.Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com3tag:blogger.com,1999:blog-3573342807293168061.post-52783659726810886512011-11-25T19:21:00.003+13:002011-11-25T19:21:40.363+13:00forgot the time...<span class="messageBody" data-ft="{"type":3}">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!)</span>Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com2tag:blogger.com,1999:blog-3573342807293168061.post-31608265689147972942011-11-25T09:50:00.000+13:002011-11-25T09:50:15.022+13:00Morning Tea in Auckland....<span class="messageBody" data-ft="{"type":3}"><div class="text_exposed_root text_exposed" id="id_4ecead602c8286686083564"><br />
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<span class="text_exposed_hide">...</span><span class="text_exposed_show">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!<br />
xxxx (We are planning on trying to get to Wellington and Christchurch sometime next year too)<br />
<br />
<a href="http://www.chocolatelounge.co.nz/" rel="nofollow nofollow" target="_blank"><span style="color: #3b5998;"><span>http://</span><wbr></wbr><span class="word_break"></span></span>www.chocolatelounge.co.nz/</a><br />
</span></div></span>Breastfeeding with Cancerhttp://www.blogger.com/profile/02486008591288457730noreply@blogger.com0