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...
Sunday, 24 July 2011
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.
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.
Thursday, 14 July 2011
Results of surgery
We saw the surgeon on Tues who let us know about the results from histology. the lump in the Right breast is the same kind of cancer - triple negative - which I feel is good as it doesn't complicate things as much, and the lymph form that side was totally clear. After the surgery she told us that she expected over 50% of the lymph nodes on the right to be affected as they looked unusual. She got 15 lymph nodes - which she was a little disappointed with i think as she usually gets more - and only one had cancer. It was one that was close to the lump rather than up my arm more, and she said this was "cautiously encouraging", which is about as good as it's going to get from a breast cancer surgeon I expect. The only thing was that one of the tumors had one margin of 2.5mm. She said if the margin is 1m or less then they recommend radiotherapy, and if it is 5mm or more than they don't. So we are in the grey zone and need to wait until they all discuss it some more. Not that keen on radiation, but I'm not really keen on breast cancer at all to be fair!
The giant haematoma is draining pretty ok into my grenade drain, but I do have some fluid under my right arm that is neither sore nor concerning at this point. She saw it and hmm'ed and humm'ed and decided to leave it until next week.
I went to playcentre today and although I love it, and it's nice to be out and about, going to physio straight after is incredibly knackering. To be honest I felt like the physio is a complete waste of time and energy. She didn't touch me once except to pat me on the shoulder as I left. She gave me a photocopy of the exercises and read it out to me - and gave me a demo. That was it. She could have posted it and saved me the trip and the wear. I think i'll do one more try next week and if that's all it is, then I'm going to flag it - and maybe pay someone with some more experience....if only I knew someone with a practising certificate.... ;-)
The would is looking really really good, and the surgeon was really pleased with how it is healing - yay for the Vitamin C.
We have another surgeon app - probably our last - and an oncology app next week on Thurs. So we're hoping to talk about CTC testing and fertility options. Maybe looking into more 'protective' therapies for my poor eggs.
Also the Northern Advocate newspaper was here on Wed - really lovely people - and we're going to be in the paper. Not sure at this point if it's this Saturday or next but we'll stick it up when we know :-)
The giant haematoma is draining pretty ok into my grenade drain, but I do have some fluid under my right arm that is neither sore nor concerning at this point. She saw it and hmm'ed and humm'ed and decided to leave it until next week.
I went to playcentre today and although I love it, and it's nice to be out and about, going to physio straight after is incredibly knackering. To be honest I felt like the physio is a complete waste of time and energy. She didn't touch me once except to pat me on the shoulder as I left. She gave me a photocopy of the exercises and read it out to me - and gave me a demo. That was it. She could have posted it and saved me the trip and the wear. I think i'll do one more try next week and if that's all it is, then I'm going to flag it - and maybe pay someone with some more experience....if only I knew someone with a practising certificate.... ;-)
The would is looking really really good, and the surgeon was really pleased with how it is healing - yay for the Vitamin C.
We have another surgeon app - probably our last - and an oncology app next week on Thurs. So we're hoping to talk about CTC testing and fertility options. Maybe looking into more 'protective' therapies for my poor eggs.
Also the Northern Advocate newspaper was here on Wed - really lovely people - and we're going to be in the paper. Not sure at this point if it's this Saturday or next but we'll stick it up when we know :-)
Saturday, 9 July 2011
Raife's masterchef recipe......
Just in case someone thought it looked good on telly :-)
Take one tin of non-nutrtious spaghetti, heat a little, add just the right amount of fresh pineapple, stir, enjoy (if you can - seemed pretty gross to me, but it's not my creation!)
Take one tin of non-nutrtious spaghetti, heat a little, add just the right amount of fresh pineapple, stir, enjoy (if you can - seemed pretty gross to me, but it's not my creation!)
Bastian's birthday
My little boy had a birthday at playcentre on thursday - his actual birthday not til next week, but my sisters were here and suggested we have it early so they could help. They did everything -what a wonderful family I have. And to be able to turn up at Playcentre and be able to trash the place without worry is so nice. It's the first time I've been back since the week before the surgery and it's really good to be surrounded by people you enjoy without pressure. I was pretty tired that night, but I had a really nice morning and glad I went - although I feel remiss as I was supposed to be doing governance board but have been a little occupied!
i love playcentre.
This is Bastians cake his aunties made him - a rubber duck with bubbles...., banana, half regular half gluten free :-)
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i love playcentre.
This is Bastians cake his aunties made him - a rubber duck with bubbles...., banana, half regular half gluten free :-)
world famous and back in hospital.....
so we were looking good last night. Gill and her team did a pretty good job I reckon, and for every one of the negative (and usually misinformed or wrongly educated) comments there were at least 5 positive ones :-) and even negative attention is still attention. The more talking there is about milk-sharing, breastcancer and banks the more will happen, so good on everyone who posted comments on the Close Up page. If only one person checks for lumps who otherwise wouldn't then it's worth it.
Personally I think my kids looked pretty cute - but I could be a little biased - and my husband was cornered in the kitchen and matched the cupboards quite nicely!
On the down side, I decided that my seroma was getting a bit sore so went down to the breast clinic after my IV vitamin C on Friday about lunchtime. They were more than happy to drain it and got off 140ml initially, then I sat up ans the nurse said it looked like I had moved some around so I lay back down and they poked me with another giant needle but none came out and she thought maybe there was a clot and I should be seen. My surgeon is on leave and the registrars were both in theatre so off up to A&E I went. In about an hour I went from the flat chest of mastectomy to about a D cup
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And this wasn't as big as it got (please excuse my puku!). my god did it hurt, like nothing else so far. 7ml of morphine just got it to ease off - I'm sure I only had half that post the mastectomy. So in A&E of course they said it needed to be sorted and I would need to go to theatre again. Funny that I had the same anaesthetist and he remembered me - plus the nurses recognized my fame ;-) So I spent last night back in the ward and got my hackles up really quick when i told the nurse that my baby would be coming with my husband to stay the night, then she came back and asked if he was breatfeeding I immediately launched into a very strong splurge about not discriminating against me because I had no more breasts and only I could feed him and bla bla bla. the poor nurse - who was really nice - said she was just wanting to know whether we would need our own room. I consequently apologised! I was bristling and ready for a fight - and anyone who knows me will know that when I am on a rampage I'm pretty hard going! - Poor thing, I think I scared her, and she only looked like she had been nursing for not long (she looked about 20). The surgeon said this morning that the haematoma he removed was at least 400ml, and there was a bleeding vessel behind it which had to be tied off. So a little bit of a setback, but not really a big deal. The Vitamin C will get me back on track i'm sure, but i've got a drain in again (exasperated sigh....)
Back home today to a wonderful extended list of donors for Bastian and so much fantastic support for us - you all rock and every little bit of support helps to hold us up :-)
Personally I think my kids looked pretty cute - but I could be a little biased - and my husband was cornered in the kitchen and matched the cupboards quite nicely!
On the down side, I decided that my seroma was getting a bit sore so went down to the breast clinic after my IV vitamin C on Friday about lunchtime. They were more than happy to drain it and got off 140ml initially, then I sat up ans the nurse said it looked like I had moved some around so I lay back down and they poked me with another giant needle but none came out and she thought maybe there was a clot and I should be seen. My surgeon is on leave and the registrars were both in theatre so off up to A&E I went. In about an hour I went from the flat chest of mastectomy to about a D cup
Back home today to a wonderful extended list of donors for Bastian and so much fantastic support for us - you all rock and every little bit of support helps to hold us up :-)
A special message to my TV buddies...
Thanks so much to Kim and Vanessa, Claire and Matilda, Pip and Meg and of course my lot :-) Without you guys this wouldn't have been the story or the journey. We so appreciate every little thing you do......
Thursday, 7 July 2011
We're going to be famous ;-) TONIGHT!
TV One, 7pm tonight. on Close Up. We're on :-) Make sure you watch us but be warned it may make you cry :-)
Tuesday, 5 July 2011
All the drains are now out - last one came out yesterday. What a relief - I didn't realize how much movement they inhibit until I got them all out. I still can't shouldn't pick up the kids and sometimes the van door is too heavy (yes we have a van, we intend to fill it with noisy, boisterous, messy children) but we're getting there. Unfortunately on the left i have a fairly generous seroma developing, it has about 60 or 70ml I reckon and up until this evening wasn't sore at all. Now it is pulling in the middle and I look like my breast is trying to grow back (I wish!). I think there may be another small one under my arm but it is hard to tell and I am numb under there so I dunno.
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sorry about the seedy flash - it is dark in here!
Still no results from the bone scan or the nodes..........
I had a phone call from my mum the other day who said she was talking to our cousin's husband. My cousin died of breast cancer in her early 30's. It seemed to happen really quickly for her, and this has been something I have desperately been trying not to think of. The last thing i need is only a year for ballpark survival. She had 4 kids and her youngest was only a baby - it was very very sad.
So he called and spoke to Mum and obviously he was really gutted. But after talking to him Mum discovered that hers was definately a hormone driven one and by the sounds of it maybe HER2 positive. This was about 8 or 9 years ago, so the testing and of course Herceptin were not available as readily as now. I cried. I never realised that this was so worrying to me - to know that hers was different to mine means I won't follow her same path. But most importantly it may increase the likelihood that I am one of the very small group of non-BRCA gene related triple negative cancers. The idea that my sisters and mother may have to come to a decision about their own breasts is frightening. Two of my sisters have very young children and just starting on their families and the other is 21 and not yet begun. We are all breastfeeders and formula is not contemplated at all. To not have them have to do what I have done and am going to do is all I wish for. And to worry that my own children may have to seriously contemplate their own fertility later in life is mortifying. How do you tell your children as they grow that they may need to choose a family vs a 'just in case' situation.
Look at your children and love their perfection, in case you ever find the plan is not what you imagined.
Bastian is taking the bottle ok. When he is tired or hurt he still nuzzles and cries and then of course so do I. but eventually he gives in and takes it. The other times in the day he seems to be fine. He doesn't seem to worry about the taste at all - in fact once he gets going he guzzles it down. Imagine what a fantastic passive immunity he has - there'd be nothing like it! I am still in awe of the wonderful women who have given and are giving Bastian milk. And I am wanting to share a link with you from one of the wonderful women who offered - http://youtu.be/Wu11se4Pof8
Just to let you know Steph that you are the one who is an inspiration, and thank-you so so very much for your offer - we are honoured.
Still no results from the bone scan or the nodes..........
I had a phone call from my mum the other day who said she was talking to our cousin's husband. My cousin died of breast cancer in her early 30's. It seemed to happen really quickly for her, and this has been something I have desperately been trying not to think of. The last thing i need is only a year for ballpark survival. She had 4 kids and her youngest was only a baby - it was very very sad.
So he called and spoke to Mum and obviously he was really gutted. But after talking to him Mum discovered that hers was definately a hormone driven one and by the sounds of it maybe HER2 positive. This was about 8 or 9 years ago, so the testing and of course Herceptin were not available as readily as now. I cried. I never realised that this was so worrying to me - to know that hers was different to mine means I won't follow her same path. But most importantly it may increase the likelihood that I am one of the very small group of non-BRCA gene related triple negative cancers. The idea that my sisters and mother may have to come to a decision about their own breasts is frightening. Two of my sisters have very young children and just starting on their families and the other is 21 and not yet begun. We are all breastfeeders and formula is not contemplated at all. To not have them have to do what I have done and am going to do is all I wish for. And to worry that my own children may have to seriously contemplate their own fertility later in life is mortifying. How do you tell your children as they grow that they may need to choose a family vs a 'just in case' situation.
Look at your children and love their perfection, in case you ever find the plan is not what you imagined.
Bastian is taking the bottle ok. When he is tired or hurt he still nuzzles and cries and then of course so do I. but eventually he gives in and takes it. The other times in the day he seems to be fine. He doesn't seem to worry about the taste at all - in fact once he gets going he guzzles it down. Imagine what a fantastic passive immunity he has - there'd be nothing like it! I am still in awe of the wonderful women who have given and are giving Bastian milk. And I am wanting to share a link with you from one of the wonderful women who offered - http://youtu.be/Wu11se4Pof8
Just to let you know Steph that you are the one who is an inspiration, and thank-you so so very much for your offer - we are honoured.
Friday, 1 July 2011
Here is an expample of my week...
Mon - out of hospital and slow trip home
Tues - drive to Kerikeri for IV vitamin C and 'supplies', see District nurse and have a drain removed
Wed - say goodbye to Mum and Dad, and my sister. Try not to cry. Convince district nurse I'm fine.
Thurs - drive to Auckland - leave at 8 am get home at 8.30pm - for bone scan. Meet Kim and Vanessa and
Gill from Close Up, fail to convince lactation consultant at Auckland Hospital to put
my details on notice board for milk donors (absolutely not her fault, hospital beauracracy crap), have
bone scan, drive home. My two boys asleep when I get there as their Aunties wore them out -
which makes me feel like a crap mother....
Fri - drive to Kerikeri for iv Vitamin C again.
Sat - hopefully just visitors, district nurse maybe will take out last drain
Sun - hopefully less vistors
Mon - physio app in Bay of Islands then up to ballet with Charlie and Raife in Kerikeri
Tues - Iv vitamin c in Kerikeri, then supposed to go to Auckland again for app at Fertility Assoc
It is increadibly wearing, all the travelling. And I haven't even started chem or app with oncologists. Let alone convincing them that the circulating tumor cells test is a good idea - we'll see who wins that fight ;-)
Had a funny discussion with my sister about swimming. What's the consensus here - do you think I should wear any top? I'm thinking along the lines of speedos only - more for shock value :-)
Anyway, Kim has invented me a new Facebook page 'Boob 2 Babe' (how cool is that!) so hook in to it, there are links there to an amazing online form if you feel like donating some milk to us ;-)
Jay
Mon - out of hospital and slow trip home
Tues - drive to Kerikeri for IV vitamin C and 'supplies', see District nurse and have a drain removed
Wed - say goodbye to Mum and Dad, and my sister. Try not to cry. Convince district nurse I'm fine.
Thurs - drive to Auckland - leave at 8 am get home at 8.30pm - for bone scan. Meet Kim and Vanessa and
Gill from Close Up, fail to convince lactation consultant at Auckland Hospital to put
my details on notice board for milk donors (absolutely not her fault, hospital beauracracy crap), have
bone scan, drive home. My two boys asleep when I get there as their Aunties wore them out -
which makes me feel like a crap mother....
Fri - drive to Kerikeri for iv Vitamin C again.
Sat - hopefully just visitors, district nurse maybe will take out last drain
Sun - hopefully less vistors
Mon - physio app in Bay of Islands then up to ballet with Charlie and Raife in Kerikeri
Tues - Iv vitamin c in Kerikeri, then supposed to go to Auckland again for app at Fertility Assoc
It is increadibly wearing, all the travelling. And I haven't even started chem or app with oncologists. Let alone convincing them that the circulating tumor cells test is a good idea - we'll see who wins that fight ;-)
Had a funny discussion with my sister about swimming. What's the consensus here - do you think I should wear any top? I'm thinking along the lines of speedos only - more for shock value :-)
Anyway, Kim has invented me a new Facebook page 'Boob 2 Babe' (how cool is that!) so hook in to it, there are links there to an amazing online form if you feel like donating some milk to us ;-)
Jay
Wednesday, 29 June 2011
Boob cast pics - thanks so much Jane :-)
This is the Thursday afternoon before we left to go to Whangarei. It was just after this that I sobbed my heart out in my own Mother's arms.Just though I'd throw this in.
A few days in
I am feeling pretty good. The drains are really uncomfortable but nothing that taking it easy and regular paracetamol can't handle. I had one drain removed yesterday and much to my disappointment I have started to develop a small collection of fluid under the scar on my left side - a seroma - after it was taken out. Not a big deal in itself unless it gets really big or painful and then I have to go and get it drained, but complications are not something I want to be managing. On the gross side the drain went right across to the middle of my chest and coiled around a bit, it was about 25cm long and I could feel it sliding out from under my skin as she pulled it out - pretty disgusting but kind of cool!
Every morning Raife asks me for a breastfeed still. I blink back tears and explain to him again about having my breasts removed. To which he inevitably replies "can I see where your breasts were chopped off?" Very very cute. Bastian is coming to terms with the bottle and most of the time accepts it. His little ritual has become - sit on Mum's legs (I can't pick him up)
- push the bottle away twice and complain
- try to nuzzle into my chest while grabbing the bottle and dragging it in
- spit out the teat, complain again
- take the bottle and feed until he's had enough :-)
He seems to do this every time except for in the middle of the night, when he's all over the place. Sometimes he just takes it, no questions and sometimes he cries because he wants the breast. Both break my heart.
He is eating heaps more food which is relieving. Having his little cousin here who is 2 weeks younger and eats heaps has made a real impact. He tries to take everything off her and stuffs it in his mouth as fast as he can - which upsets her to the point she was trying to get away from him every time she ate! Also very cute.
The biggest thing is that I don't feel different. Somehow I thought I would. I wasn't sure how I would feel, I just expected to feel different. And I didn't realize until afterwards that part of my fear was that the kids would feel differently about me because I had changed. And of course they don't. It is such a relief. There are stretches of the day where I even forget that this has happened, until I look down and remember.
The most limiting thing is that I don't have a lot of movement in my arms. I cannot lift my elbows to shoulder height, or really extend my arms. And I cannot weight bear at all. I can feel it all pulling inside my armpits, and occasionally there is a burning if I overdo it. This means I can't pick up Bastian or anyone else which is gutting, but on the up I'm not allowed to do the washing or vacuum either :-) Sometimes I can't even open the fridge because the suction is too much, and closing the car door after i get in is impossible. I also have to wear button front tops (checkered farmers shirts I have) as putting my hands and arms up that high is not happening. It will all get better as the healing comes along.
I started IV vitamin C on Tuesday, and it was not a problem at all. So every Tues and Friday until chemo starts I'll be going in for that. I was pretty wiped but I think it was more to do with going to the health shop, the bathroom shop, the distric nurses office twice and lunch at the cafe that did it. And I keep brain farting - love the general anaesthetic! I'm also looking at 'circulating tumor cell' testing, but I need to convince the oncologist first. I have a bone scan tomorrow so fingers crossed for that one, and as yet no results from histology for the lymph nodes - although the surgeon expects that at least half of them will be affected. I pray she's wrong.
While I was there I had a few fantastic visitors. One who is travelling this same path as me but chemo first. It is such a relief to know that it works. I really worry about trashing my body for no good reason but to see her looking so well and proof that chemo is effective was such a good feeling.
Thank-you so much to all the donors - you are making such a huge difference to a little boys life (and his Mummy's), you cannot believe what an impact you have had on this whole experience. We are forever grateful.
Every morning Raife asks me for a breastfeed still. I blink back tears and explain to him again about having my breasts removed. To which he inevitably replies "can I see where your breasts were chopped off?" Very very cute. Bastian is coming to terms with the bottle and most of the time accepts it. His little ritual has become - sit on Mum's legs (I can't pick him up)
- push the bottle away twice and complain
- try to nuzzle into my chest while grabbing the bottle and dragging it in
- spit out the teat, complain again
- take the bottle and feed until he's had enough :-)
He seems to do this every time except for in the middle of the night, when he's all over the place. Sometimes he just takes it, no questions and sometimes he cries because he wants the breast. Both break my heart.
He is eating heaps more food which is relieving. Having his little cousin here who is 2 weeks younger and eats heaps has made a real impact. He tries to take everything off her and stuffs it in his mouth as fast as he can - which upsets her to the point she was trying to get away from him every time she ate! Also very cute.
The biggest thing is that I don't feel different. Somehow I thought I would. I wasn't sure how I would feel, I just expected to feel different. And I didn't realize until afterwards that part of my fear was that the kids would feel differently about me because I had changed. And of course they don't. It is such a relief. There are stretches of the day where I even forget that this has happened, until I look down and remember.
The most limiting thing is that I don't have a lot of movement in my arms. I cannot lift my elbows to shoulder height, or really extend my arms. And I cannot weight bear at all. I can feel it all pulling inside my armpits, and occasionally there is a burning if I overdo it. This means I can't pick up Bastian or anyone else which is gutting, but on the up I'm not allowed to do the washing or vacuum either :-) Sometimes I can't even open the fridge because the suction is too much, and closing the car door after i get in is impossible. I also have to wear button front tops (checkered farmers shirts I have) as putting my hands and arms up that high is not happening. It will all get better as the healing comes along.
I started IV vitamin C on Tuesday, and it was not a problem at all. So every Tues and Friday until chemo starts I'll be going in for that. I was pretty wiped but I think it was more to do with going to the health shop, the bathroom shop, the distric nurses office twice and lunch at the cafe that did it. And I keep brain farting - love the general anaesthetic! I'm also looking at 'circulating tumor cell' testing, but I need to convince the oncologist first. I have a bone scan tomorrow so fingers crossed for that one, and as yet no results from histology for the lymph nodes - although the surgeon expects that at least half of them will be affected. I pray she's wrong.
While I was there I had a few fantastic visitors. One who is travelling this same path as me but chemo first. It is such a relief to know that it works. I really worry about trashing my body for no good reason but to see her looking so well and proof that chemo is effective was such a good feeling.
Thank-you so much to all the donors - you are making such a huge difference to a little boys life (and his Mummy's), you cannot believe what an impact you have had on this whole experience. We are forever grateful.
Saturday, 25 June 2011
Surgery done
So I don't feel like I thought I would. It is nowhere near as sore - the drains are the worst - and it doesn't look like what I was expecting (I'll post a pic, just warning you all!). The worst part of the whole process (not counting breastfeeding stuff of course) has been making myself come and do. It is the hardest thing I've ever done, to get into the car and turn up at the hospital. Every nerve was screaming at me to just turn around and run off, it'll be fine, it's just a bad dream, it's not real, it'll go away by itself. To physically pack a bag and come is unbelievably hard and we had to force ourselves to do it. Gritted teeth and everything.
but now it's done and it's not so bad. It's sad to not have Bastian in bed with me but the morphine and the drains make it not right, Daniel is the dream dad jiggling him all night and then passing him to me for a cuddle then back to more jiggling, his burst eardrum and 2 new teeth not exactly timed well. Everyone was unsettled except the big boys who hung out with Grandma and Grandad and their Aunties and had a nice time. Their first night away from us so that was worrying too, but of course they were fine.
And our first package arrived up here, waiting in our room for us - frozen and glorious a box of milk for our boy. I feel panic coming on as I worry about him, we have been trying to get him to eat food in the day and have breastmilk only at night, but this transition should take weeks and months - not days. He will eat if he's hungry enough I know, but what kind of an introduction to the fantastic world of taste and texture is that? So thank-you again to those wonderful women who have made - and are making - this journey as easy as possible :-)
Here is the pic, the day after surgery. Mum thinks I look just like I did when I was 12 (obviously I had nipples and a smaller puku then!)
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but now it's done and it's not so bad. It's sad to not have Bastian in bed with me but the morphine and the drains make it not right, Daniel is the dream dad jiggling him all night and then passing him to me for a cuddle then back to more jiggling, his burst eardrum and 2 new teeth not exactly timed well. Everyone was unsettled except the big boys who hung out with Grandma and Grandad and their Aunties and had a nice time. Their first night away from us so that was worrying too, but of course they were fine.
And our first package arrived up here, waiting in our room for us - frozen and glorious a box of milk for our boy. I feel panic coming on as I worry about him, we have been trying to get him to eat food in the day and have breastmilk only at night, but this transition should take weeks and months - not days. He will eat if he's hungry enough I know, but what kind of an introduction to the fantastic world of taste and texture is that? So thank-you again to those wonderful women who have made - and are making - this journey as easy as possible :-)
Here is the pic, the day after surgery. Mum thinks I look just like I did when I was 12 (obviously I had nipples and a smaller puku then!)
Our last feeds
So the camera guy from Close Up came on Wednesday afternoon because they are wanting to help get the word out and offered to do a piece. And that was just the most awful moment so far. Tandem feeding for the last time and crying my eyes out while a guy I had just met asked me how I would feel when I gave them their last ever feed :-( That was the worst moment I've had since we found out both breasts had cancer. It was just so hard to face it, especially as we had been trying to wean Bastian onto a bottle and he was so excited about breastfeeding. I just cried and I fear noone will hear anything that is said in the video - but I'm sure the message is implicit.
Had another moment on the floor before coming down to Whangarei on Thursday afternoon. My Mum came in and with tears in her eyes she said to me that you never ever forget what it feels like to breastfeed your baby and you never forget the way they look at you. And she started to cry and I started to sob uncontrollably and it was awful but cathartic I think. There is nothing quite as soothing as your mother holding you when you cry, no matter how old you are.
Raife had his last feed in the waiting room at the hospital yesterday, but it wasn't so bad - sitting in the motel room was worse. We talked about it being the last day for breastfeeding and he gets it I think. Bastian had his last feed just before I went to theatre and he was wriggling around and looking about which kind of made it easier. It all felt a little anti-climatic but i think i did most of my greiving beforehand.
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Had another moment on the floor before coming down to Whangarei on Thursday afternoon. My Mum came in and with tears in her eyes she said to me that you never ever forget what it feels like to breastfeed your baby and you never forget the way they look at you. And she started to cry and I started to sob uncontrollably and it was awful but cathartic I think. There is nothing quite as soothing as your mother holding you when you cry, no matter how old you are.
Raife had his last feed in the waiting room at the hospital yesterday, but it wasn't so bad - sitting in the motel room was worse. We talked about it being the last day for breastfeeding and he gets it I think. Bastian had his last feed just before I went to theatre and he was wriggling around and looking about which kind of made it easier. It all felt a little anti-climatic but i think i did most of my greiving beforehand.
Thursday, 23 June 2011
FOR ALL THE MILK DONORS
Please contact Kim Thompson on kmthompson11@gmail.com if you have any milk you would like to donate to us :-)
Thanks everyone xxx
Thanks everyone xxx
Wednesday, 22 June 2011
Yay for the CT scan
I spoke to the surgeon this morning who said the CT scan was all clear! Thank goodness - I didn't even realise that I was nervous about it until I started talking to her. One less thing to worry about - "a bit of good news in the gloom" said my Dad - ever the understater!
So many thanks to all you wonderful people out there for your prayers and thoughts and support. This has already been a hard road for us, especially for Bastian and I , and we appreciate every smidgen of goodness that is thrown to the universe for us.
He is starting to take the bottle better - it helps when you realise that there are different sized teats with different sized holes in them! And I think by the time Friday comes he will be (was going to say OK with it, but that's not really the right word) more used to it. I cannot say the same for myself. Every time I feed him I cry, thinking that soon it will be the last time I ever breastfeed. Every time I feed Raife I worry that he doesn't understand what's going to happen even though we have talked about it over and over - he is only 2 and a half so I'm not sure he really gets it. I am desperately going to miss the let-down, that gorgeous tingling that says what a wonderful machine my body is.
So many thanks to all you wonderful people out there for your prayers and thoughts and support. This has already been a hard road for us, especially for Bastian and I , and we appreciate every smidgen of goodness that is thrown to the universe for us.
He is starting to take the bottle better - it helps when you realise that there are different sized teats with different sized holes in them! And I think by the time Friday comes he will be (was going to say OK with it, but that's not really the right word) more used to it. I cannot say the same for myself. Every time I feed him I cry, thinking that soon it will be the last time I ever breastfeed. Every time I feed Raife I worry that he doesn't understand what's going to happen even though we have talked about it over and over - he is only 2 and a half so I'm not sure he really gets it. I am desperately going to miss the let-down, that gorgeous tingling that says what a wonderful machine my body is.
Monday, 20 June 2011
to wipe up some tears...
My Mother in law is sending me some new PJ's - now I know for certain my father-in-law saw my bum ;-)
A message for my parents.
Tomorrow will be hard. My Mum and Dad are coming back from holiday and coming to stay. Knowing how I feel about protecting my boys makes me sad for them. The idea that I cannot continue to breastfeed breaks my heart, but my babies are not sick - and I am their baby. I feel their hearts must be aching for me - I cannot imagine the fear and dread of my own children not being well, and I know now that no matter how old you are you are always somebody's baby.
I'm sorry Mum and Dad. I will be strong like you have taught me to be. I will focus on myself like you have told me to do. I will trust you to care for my own babies like you cared for me, when I am unable to do it. I will ask for help when I need it and be honest with myself like you encourage me to be. I will keep you proud of me and I will be there long from now, to look after you - just like you have and will look after me.
I love you. With all my heart and soul.
I'm sorry Mum and Dad. I will be strong like you have taught me to be. I will focus on myself like you have told me to do. I will trust you to care for my own babies like you cared for me, when I am unable to do it. I will ask for help when I need it and be honest with myself like you encourage me to be. I will keep you proud of me and I will be there long from now, to look after you - just like you have and will look after me.
I love you. With all my heart and soul.
Boob casts and selflessness (is that a word?)
So many thanks to the wonderful Jane who came and did a couple of boob casts for me yesterday. What a treasure you are to have stepped into my life at this time, amazing that fate leads us this way.
She came with candles and empathy and honesty. What a gift!
I will try and get some pics of the cast being done on here as my sister took some fantastic ones.
Interesting how I feel kind of relieved by having them done - like there is some proof out there now, for my family and for me. Thinking I might get my kids to paint one and leave the other plain. It seems kind of symbolic.
And gorgeous Pip, who seems to have taken me on and met with me today with homemade meals and glorious raw food treats, and most of all milk. Beautiful milk for my baby boy, to grow him strong and keep him healthy. In amongst the rest of her busy life with 3 children and a baby of her own she manages to do something for a stranger.
I am in awe at the support from people everywhere. All around the world I am getting messages of prayers and wishes from people I may never have otherwise connected with. It is really overwhelming and incredibly humbling to be lifted up by so many. I feel undeserving - there is nothing that makes me different from any other parent, I do not love my children more or less - but I also feel like our gentle Mother is giving me a gift and showing me the strength of women and the community that usually hides from our everyday life.
Again, thank you to each of you who read and and walk this path with me - every smile and every tear counts.
She came with candles and empathy and honesty. What a gift!
I will try and get some pics of the cast being done on here as my sister took some fantastic ones.
Interesting how I feel kind of relieved by having them done - like there is some proof out there now, for my family and for me. Thinking I might get my kids to paint one and leave the other plain. It seems kind of symbolic.
And gorgeous Pip, who seems to have taken me on and met with me today with homemade meals and glorious raw food treats, and most of all milk. Beautiful milk for my baby boy, to grow him strong and keep him healthy. In amongst the rest of her busy life with 3 children and a baby of her own she manages to do something for a stranger.
I am in awe at the support from people everywhere. All around the world I am getting messages of prayers and wishes from people I may never have otherwise connected with. It is really overwhelming and incredibly humbling to be lifted up by so many. I feel undeserving - there is nothing that makes me different from any other parent, I do not love my children more or less - but I also feel like our gentle Mother is giving me a gift and showing me the strength of women and the community that usually hides from our everyday life.
Again, thank you to each of you who read and and walk this path with me - every smile and every tear counts.
Bring on the breastmilk!
Right we need to get moving. D-day is looming and my boy is going to be hungry and sad :-( so....
Kim Thompson is my delivery Angel! her email is kmthompson11@gmail.com Just flick her an email with your name, contact details, how much you have frozen - if you have it or whether you are an expressing mama, and of course where you live! She will sort everything from there :-) You guys are awesome, and we all appreciate every little drop you can spare :-)
PS if anyone needs an electric pump let me know, as I have hook-up :-)
Kim Thompson is my delivery Angel! her email is kmthompson11@gmail.com Just flick her an email with your name, contact details, how much you have frozen - if you have it or whether you are an expressing mama, and of course where you live! She will sort everything from there :-) You guys are awesome, and we all appreciate every little drop you can spare :-)
PS if anyone needs an electric pump let me know, as I have hook-up :-)
Saturday, 18 June 2011
BREASTMILK DONORS
We are nearly sorted, Kim is figuring us out and we can get milk from just about anywhere to here. Please, please watch this space.... info is coming :-)
Last night was crap
So we tried to give hime a bottle/ sippy cup/regular cup but no chance. He's on antibiotics for the first time in any of our kids lives becausse he has a burst middle ear. So not only am I trying to teach him to not breastfeed, but I am trying to do it when he's crook and needs it most. It couldn't actually be at a worse time :-(
We have decided that in the daytime we aren't going to breastfeed him and try to get him to drink from a cup or bottle - I now have about 5 different sorts. And at nighttime breastfeed until just before he goes to sleep and some 'other mothering' (thanks Donna). This is the plan for the next couple of days, small steps. Raife is just breastfeeding willy-nilly so I am being careful not to do it in front of Bastian, nor can I express in front of him - that would be cruel.
Hopefully my boy can come round quickly - we are a bit pressed for time.
On the bright side spoke to another woman today - Nadia - who is having a similar experience to myself and feel better about the whole cancer thing in general, not so alone.
Plus I bought some new PJ's, so my butt crack is not cold anymore :-)
We have decided that in the daytime we aren't going to breastfeed him and try to get him to drink from a cup or bottle - I now have about 5 different sorts. And at nighttime breastfeed until just before he goes to sleep and some 'other mothering' (thanks Donna). This is the plan for the next couple of days, small steps. Raife is just breastfeeding willy-nilly so I am being careful not to do it in front of Bastian, nor can I express in front of him - that would be cruel.
Hopefully my boy can come round quickly - we are a bit pressed for time.
On the bright side spoke to another woman today - Nadia - who is having a similar experience to myself and feel better about the whole cancer thing in general, not so alone.
Plus I bought some new PJ's, so my butt crack is not cold anymore :-)
Friday, 17 June 2011
pretty much the worst day of my life yesterday...
Found out that the lump in the other side is cancer as well. I know this means both breasts come off. I know this means my baby boys will never be able to wean when they are ready. i know this means that I only have one more week of breastfeeding - ever. I know this means I will probably never have more babies. I know this means Bastian will cry - something we don't do. And I sit on the side of the road in the car with my husband holding me and my 3 children asleep, and I cry and sob as my heart breaks. This is the first time I have cried about the whole cancer thing. It's not fair, my babies have the right to be breastfed.
I worry that I don't know how to mother without breastfeeding. How will I console them the way they need it? How will I stop the middle of the night wake ups, without a nipple to offer? How will I hold my baby while he nuzzles at a bare chest and still be able to meet his needs? I feel like I am lost. I worked with both of my last two babies, taking them with me everywhere. To visits with clients, up to the hospital for births, to clinics. Not for a minute were they away from me. But they had to be lugged around and spend hours in the car, and be un-stimulated in the clinics, and the trade-off that made me feel like it was ok and I could manage was that I demand fed. Totally and utterly. I have no inclination to work and thanks to the support of my wonderful working partner and the supportive midwives up here I don't have to for a little while, but it really made me feel like I was an ok mother. And now I have to find a new way - I'm sure I will, but I don't want to. I want the old way. I know what heartache is now. It's not right.
And every time I feed and sing to my boys I cry and I try to make Raife understand what is going to happen but I'm not sure if he does. And Bastian looks so happy and I will never have that view again - I'll never look down and see that milky face pull cheekily at my nipple then snuggle back in making piggy noises. I'll never feel the milk let down and hear my boys gulping back the milk and think to myself what a wonderful thing the body is. It's not right.
And my poor husband can't change anything. His wife is losing one of the most important things in the world to her and he can only watch and hold my hand and cry with me - it's not right for him either.
And today I cry as I try to get my son to take a sippy bottle of breastmilk halfway through a feed. And I think he will by Friday, but it sucks. It's not right.
So, I need all you wonderful women who can give us milk to be ready. I have a friend in Auckland who is going to be my breastmilk pimp and she works with Trans Otway, so she is going to get something sorted for us as we need to get some up here by next week. So please, please email me with your contact details and where you live - and if you have probs getting copies of antenatal bloods let me know as i can get them from your midwife with your permission.
It's not right.
I worry that I don't know how to mother without breastfeeding. How will I console them the way they need it? How will I stop the middle of the night wake ups, without a nipple to offer? How will I hold my baby while he nuzzles at a bare chest and still be able to meet his needs? I feel like I am lost. I worked with both of my last two babies, taking them with me everywhere. To visits with clients, up to the hospital for births, to clinics. Not for a minute were they away from me. But they had to be lugged around and spend hours in the car, and be un-stimulated in the clinics, and the trade-off that made me feel like it was ok and I could manage was that I demand fed. Totally and utterly. I have no inclination to work and thanks to the support of my wonderful working partner and the supportive midwives up here I don't have to for a little while, but it really made me feel like I was an ok mother. And now I have to find a new way - I'm sure I will, but I don't want to. I want the old way. I know what heartache is now. It's not right.
And every time I feed and sing to my boys I cry and I try to make Raife understand what is going to happen but I'm not sure if he does. And Bastian looks so happy and I will never have that view again - I'll never look down and see that milky face pull cheekily at my nipple then snuggle back in making piggy noises. I'll never feel the milk let down and hear my boys gulping back the milk and think to myself what a wonderful thing the body is. It's not right.
And my poor husband can't change anything. His wife is losing one of the most important things in the world to her and he can only watch and hold my hand and cry with me - it's not right for him either.
And today I cry as I try to get my son to take a sippy bottle of breastmilk halfway through a feed. And I think he will by Friday, but it sucks. It's not right.
So, I need all you wonderful women who can give us milk to be ready. I have a friend in Auckland who is going to be my breastmilk pimp and she works with Trans Otway, so she is going to get something sorted for us as we need to get some up here by next week. So please, please email me with your contact details and where you live - and if you have probs getting copies of antenatal bloods let me know as i can get them from your midwife with your permission.
It's not right.
Wednesday, 15 June 2011
Busy week next week
So tomorrow Daniel's parents go home (they've been great with the kids, she is a godsend of washing and Bastian is in love with Poppa) and I have to take Bastian to the doc as he has a lump on his neck. It's his lymph I'm sure, and it's already nearly gone away but I'm a little paranoid about lumps now. Hopefully I'll get the latest biopsy results on Thurs too, on Friday my brother comes back from the middle of the desert in Western Aus to stay with us with his wife and 3 kids - it'll be nice to see him as he's away for 6 months of the year flying choppers usually.
Maybe on Sunday I'll get a boob cast done - really looking forward to that, they have a cool one on the wall at the breast clinic and I have spent a lot of time staring at it!
tues morning at 8.30 I have a ct scan and possibly another ultrasound biopsy. thursday I see the surgeons down there and Friday is D-day.
Somewhere in there I hope to start IV vitamin C, have already become semi-vegetarian as I'm still unsure about fish/seafood (this is hard as I am a farm-grown, blue steak girl), have given up chocolate and sugar in general (aaaaagh), am trying to be 80-90% raw food. And need to organize some bloods in Aussie (thanks Pip). This is hardcore, and all with holey pj's!
Pray, cross your fingers, dance or sing - whatever it is that you do, and hope that tomorrow the biopsy is ok.
Maybe on Sunday I'll get a boob cast done - really looking forward to that, they have a cool one on the wall at the breast clinic and I have spent a lot of time staring at it!
tues morning at 8.30 I have a ct scan and possibly another ultrasound biopsy. thursday I see the surgeons down there and Friday is D-day.
Somewhere in there I hope to start IV vitamin C, have already become semi-vegetarian as I'm still unsure about fish/seafood (this is hard as I am a farm-grown, blue steak girl), have given up chocolate and sugar in general (aaaaagh), am trying to be 80-90% raw food. And need to organize some bloods in Aussie (thanks Pip). This is hardcore, and all with holey pj's!
Pray, cross your fingers, dance or sing - whatever it is that you do, and hope that tomorrow the biopsy is ok.
Just to make things worse.........
My very last pair of winter PJ's has a hole in the butt crack :-( Geez. All I've got left is hot mama nighties - not so hot if you're blue!
And I think my father-in-law has accidently been flashed my lily white butt.
Ps rosemary I'd love your milk, and will be in touch - bloods would be great thanks!
And I think my father-in-law has accidently been flashed my lily white butt.
Ps rosemary I'd love your milk, and will be in touch - bloods would be great thanks!
Tuesday, 14 June 2011
mastectomy....
So we went to see the surgeon again today - another one as our usual one has gone to Italy for a conference and handed us on. She is lovely. She is friendly. She is cutting off my left breast next Friday :-(
there are too many lumps and they are growing too fast to try and do a lumpectomy, and she isn't that keen to do a reconstruction at the same time as she doesn't want to risk complications that will delay chemo. I not too sure how I feel about having no reconstruction. It's my choice and I choose to wait. I feel numb about it really, but since I got home today every time I feed Bastian or Raife I feel the floodgates almost bursting and the tears well up as I look down at my babies doing their most favourite thing. I watch them snuffle arond in their sleepy little way, looking for the nipple with eyes closed.
What makes it so hard is that she found another lump on the other side. She tried to biopsy it but wasn't too confident. If it shows 'lactational changes' then it's breast tissue and we go for an ultrasound guided biopsy on tues. If it's a weird lump then that's great - I just have a weird lump.
If it's cancer then I have a double mastectomy and never ever ever breastfeed again.
And now the tears fall.
Please don't let it be cancer - for my beautiful baby.
there are too many lumps and they are growing too fast to try and do a lumpectomy, and she isn't that keen to do a reconstruction at the same time as she doesn't want to risk complications that will delay chemo. I not too sure how I feel about having no reconstruction. It's my choice and I choose to wait. I feel numb about it really, but since I got home today every time I feed Bastian or Raife I feel the floodgates almost bursting and the tears well up as I look down at my babies doing their most favourite thing. I watch them snuffle arond in their sleepy little way, looking for the nipple with eyes closed.
What makes it so hard is that she found another lump on the other side. She tried to biopsy it but wasn't too confident. If it shows 'lactational changes' then it's breast tissue and we go for an ultrasound guided biopsy on tues. If it's a weird lump then that's great - I just have a weird lump.
If it's cancer then I have a double mastectomy and never ever ever breastfeed again.
And now the tears fall.
Please don't let it be cancer - for my beautiful baby.
Sunday, 12 June 2011
For the wonderful women with milk
Just thought I would let everyone know that we are covering all costs of getting the milk here, just in case anyone was worrying about this :-) Trying to organize transport through Trans Otway and will let you know!
Hi to you all who have frozen milk in Auckland - I am thinking we might make a trip down (maybe take the kids somewhere cool) sometime in the next couple of weeks, and see if we can all meet in a couple of places that are convenient for you all and pick it up. I am going to try and get the poly bins from the supermarket as they would be perfect for this, and probably won't cost me anything.
So can all who live in Auckland or between Kerikeri and there please let me know where O could meet you, - or suggest a good place for everyone to meet if that's possible? you can send me an email on breastfeedingwithcancer@gmail.com
Thanks so much - Bastian will love you for it :-)
Hi to you all who have frozen milk in Auckland - I am thinking we might make a trip down (maybe take the kids somewhere cool) sometime in the next couple of weeks, and see if we can all meet in a couple of places that are convenient for you all and pick it up. I am going to try and get the poly bins from the supermarket as they would be perfect for this, and probably won't cost me anything.
So can all who live in Auckland or between Kerikeri and there please let me know where O could meet you, - or suggest a good place for everyone to meet if that's possible? you can send me an email on breastfeedingwithcancer@gmail.com
Thanks so much - Bastian will love you for it :-)
mastitis update - don't look if you don't want to see my boobie in real life....!
Holy crap, so glad that is going away - my poor nipples and boobs were so swollen (still are a little bit) and man oh man....
Am going to see if I can figure out how to stick a photo of the poor thing up for you all - the bruising is phenomenal! Sheryl...where are you? I need your magic...... :-)
ooh think I figured it out..
The pic doesn't really do it justice as the flash seemed to lighten up the bruising, but this is also way better than it was! So for all you LC's and LLL leaders out there..... feel free to use :-) If you ake money I want royalties!
Am going to see if I can figure out how to stick a photo of the poor thing up for you all - the bruising is phenomenal! Sheryl...where are you? I need your magic...... :-)
ooh think I figured it out..
The pic doesn't really do it justice as the flash seemed to lighten up the bruising, but this is also way better than it was! So for all you LC's and LLL leaders out there..... feel free to use :-) If you ake money I want royalties!
Friday, 10 June 2011
so feeling a little better...
Mastitis is starting to go away, some antibiotics and some ibuprofen and I'm no longer holding back the tears when i put Bastian on. Nothing was even coming out and my whole nipple and areaola was so swollen it was almost twisce as big as usual - and I'm not usually a big nipple girl! The breast clinic guys were talking about wanting me to go to Whangarei hosp (70km away) for iv antibiotics and to be admitted - how little they know me! My plan was to go to the bay hospital (16km away), have the ab's then home again, every six hours. I'm pretty sure they wouldn't be keen on my husband and three young kids on their ward for two days. And besides it's Charlie's 4th birthday party tomorrow so I was already booked!
Got the results from the latest biopsy - the lymph node report says "no evidence of metastatic malignancy is present" Yay. Just my body doing the job it is so good at doing!
The other lump they tested is positive for cancer though, and there are more lumps than there seemed to be before, which is shit.
The big lump has come back as triple negative, which doesn't seem to be worse or better. So we'll see what the docs say on Tuesday.
To all you fantastic women wanting to give us your milk - I'll take every drop offered! I'm getting everyone sorted into areas ans stuff like that and will be in touch about it soon, thanks so much -again!
Got the results from the latest biopsy - the lymph node report says "no evidence of metastatic malignancy is present" Yay. Just my body doing the job it is so good at doing!
The other lump they tested is positive for cancer though, and there are more lumps than there seemed to be before, which is shit.
The big lump has come back as triple negative, which doesn't seem to be worse or better. So we'll see what the docs say on Tuesday.
To all you fantastic women wanting to give us your milk - I'll take every drop offered! I'm getting everyone sorted into areas ans stuff like that and will be in touch about it soon, thanks so much -again!
Thursday, 9 June 2011
Wednesday, 8 June 2011
link it in
Hi everyone, feel free to share the blog around to anyone or hook up to it. I'm fine with pretty much anything! Just spoke to Trans Otway again, so will be contacting all you willing donors out there to truck up your milk for my baby boy :-) If you are able to get a copy of your antenatal bloods that would be great - this means that we can be worry free up here - usually a call to the midwife or gp and they can post them out, they're stored forever! Also whether you smoke is important for me. Then the plan at the moment is to post out chillybins and details and we're away.
Feeling pretty crap today, tired. And I worked a clinic today which was a little depressing as every single person wants to talk about it, as do all the staff etc. Which is great but tiring. I have been trying to make everyone have a feel of my lump so they know what to look for themselves and people's reactions are pretty funny ;-) Everyone wants to but its the personal space bubble thing (mine is obviously very very small!) and someone else's boobs can be intimidating when they're as glorious as mine!
xxxxx
Feeling pretty crap today, tired. And I worked a clinic today which was a little depressing as every single person wants to talk about it, as do all the staff etc. Which is great but tiring. I have been trying to make everyone have a feel of my lump so they know what to look for themselves and people's reactions are pretty funny ;-) Everyone wants to but its the personal space bubble thing (mine is obviously very very small!) and someone else's boobs can be intimidating when they're as glorious as mine!
xxxxx
Tuesday, 7 June 2011
How Breastfeeding fits in
So clearly breastfeeding is important to me. Massively important. Like just about the single most impressioning thing I can do for my kids. And now that's going to be taken away from my beautiful baby boy. Who likes nothing more than to snuggle up in our super-king bed with everyone else and be close, and smell my warm body, and nuzzle against my shirt and sigh contentedly when he finds the nipple, has 5 sucks and drifts off to sleep. Warm and lost in the love of his mother's arms. We don't let our kids cry, they sleep in our bed for 90% of most nights, and we breastfeed.
Nutrition is at the bottom of the list of reasons why I do it. Oxytocin is pretty close to the top. But at the very very top is bonding. Being with his mother, spending time, precious moments knowing he is loved and at that moment nothing in the world is more important than him.
How can I not do this for 6 months of his life?
So this is where all you wonderful wonderful women out there with freezers full of milk can help me! I think with donor milk, a nipple shield with no holes in it and a lactaid I can manage this. And a VERY explicit discussion with an oncologist about drugs and choices and breastfeeding. And that's going to be nothing compared to the poor surgeon who will never have met someone quite like me I'm sure, and if the breast isn't coming off then the breastfeeding stays and she's on a fantastic learning curve about the lactating breast and the mother who owns it :-)
PS I have the single most supportive husband in the universe, I'm sure of it!
Nutrition is at the bottom of the list of reasons why I do it. Oxytocin is pretty close to the top. But at the very very top is bonding. Being with his mother, spending time, precious moments knowing he is loved and at that moment nothing in the world is more important than him.
How can I not do this for 6 months of his life?
So this is where all you wonderful wonderful women out there with freezers full of milk can help me! I think with donor milk, a nipple shield with no holes in it and a lactaid I can manage this. And a VERY explicit discussion with an oncologist about drugs and choices and breastfeeding. And that's going to be nothing compared to the poor surgeon who will never have met someone quite like me I'm sure, and if the breast isn't coming off then the breastfeeding stays and she's on a fantastic learning curve about the lactating breast and the mother who owns it :-)
PS I have the single most supportive husband in the universe, I'm sure of it!
So here I am....
Where do I start? I am a midwife in Northland, NZ. I live in the most beautiful country in the world with an amazing husband and 3 gorgeous children. I have been breastfeeding continuously for almost the last four years, through two pregnancies. Tandem feeding my older two - Charlie and Raife - until Charlie weaned himself during my next pregnancy, at about 2 3/4years old. Then tandem feeding Raife and Bastian, still!
Then a couple of months ago I got a sore lump that seemed to come and go with the feeds and for all the world was a blocked duct. I waited for mastitis (had that once already) but I never felt unwell, but this lump was, and still is, really sore. So I speak to a lactation consultant and my GP who both thinks it's likely to be a galactacele, but my GP sends me to the breast clinic anyway - just to check it out.
I have a mammogram, an ultrasound, a consult with the surgeon and a core biopsy. The mammogram lady and the radiologist both tell me that breastfeeding breasts can be tricky. Also there are a few other funny looking lumps. The surgeon tells me that if the results are negative it means she missed the lump as there is no way this is benign. Kind of a shock when you're busy thinking its just a blocked duct. She is also unsure about these lactating breasts, what to do with them, how to manage things etc.
So the results are negative and back I go for an ultrasound biopsy. The radiologist and her underling both tell me again how hard breastfeeding breasts are to do anything with, but they are wonderful ladies and they manage - with a lot of poking and prodding - to get some good samples.
"Invasive breast carcinoma". So I have breast cancer.
Next app surgeon says she wants to investigate a 'suspicious' looking lymph node and one of the other lumps to see what they are. She admits she has had no experience with lactating breasts - but neither has anyone else there - but she is going away to a world breast conference and wanted to 'present' me. So this way she will have more info than anyone else, and she is one of their top 2 breast surgeons. I am confident in her skills and everyone learns somewhere. She is also able to give us a vague timeline - surgery end of July and chemo starting end of August. They want to give me everything and as much of it as they can. This I am struggling with as I am a long time nettle tea drinking, non-vaccinating, home birthing, kind of gluten free, vege growing, anti-salt or sugar, playcentr type of a girl. So chemo makes me uneasy.
So back we went today for a biopsy on the lymph and a biopsy on another of the small lumps (the biggest is 19mm), and I am sore a bit more.
That's that out of the way.
Then a couple of months ago I got a sore lump that seemed to come and go with the feeds and for all the world was a blocked duct. I waited for mastitis (had that once already) but I never felt unwell, but this lump was, and still is, really sore. So I speak to a lactation consultant and my GP who both thinks it's likely to be a galactacele, but my GP sends me to the breast clinic anyway - just to check it out.
I have a mammogram, an ultrasound, a consult with the surgeon and a core biopsy. The mammogram lady and the radiologist both tell me that breastfeeding breasts can be tricky. Also there are a few other funny looking lumps. The surgeon tells me that if the results are negative it means she missed the lump as there is no way this is benign. Kind of a shock when you're busy thinking its just a blocked duct. She is also unsure about these lactating breasts, what to do with them, how to manage things etc.
So the results are negative and back I go for an ultrasound biopsy. The radiologist and her underling both tell me again how hard breastfeeding breasts are to do anything with, but they are wonderful ladies and they manage - with a lot of poking and prodding - to get some good samples.
"Invasive breast carcinoma". So I have breast cancer.
Next app surgeon says she wants to investigate a 'suspicious' looking lymph node and one of the other lumps to see what they are. She admits she has had no experience with lactating breasts - but neither has anyone else there - but she is going away to a world breast conference and wanted to 'present' me. So this way she will have more info than anyone else, and she is one of their top 2 breast surgeons. I am confident in her skills and everyone learns somewhere. She is also able to give us a vague timeline - surgery end of July and chemo starting end of August. They want to give me everything and as much of it as they can. This I am struggling with as I am a long time nettle tea drinking, non-vaccinating, home birthing, kind of gluten free, vege growing, anti-salt or sugar, playcentr type of a girl. So chemo makes me uneasy.
So back we went today for a biopsy on the lymph and a biopsy on another of the small lumps (the biggest is 19mm), and I am sore a bit more.
That's that out of the way.
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