Kiwi ladies who need encouragment, but all welcome.
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Hi Alyson, yes we a nice bit of rain last night, cooled air right down, how are you, sad for chrissy aye loosing her mummy right in the new year.
Hi Musical, you bet i love these temps. i do not know how Ausy can handle 40 degrees that they over there in perth, i would most certainly melt, would spend my life in a cool swimming hole all the time, if i did not get eaten by the crocs or the sharks or get stung by jelly fish, which happens here too, maybe the crocs, not. They have sighting of a great white down in Kapiti. i love sharks from a distance. i am tired, been out today with hubby, we went down to levin and foxton and himitangi to do some deliverys, took the van , only 5 to do, instead of taking huge truck for a hand ful, but he will have to tomorrow. a big lot for one place, but not many deliverys, its a bulk lot. and i am stuffed and then we had to go to town and get money for wages to be paid in. i am always am tired after town. so will get back to you later.
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Happy New Year everyone! I hope you are all enjoying the sunshine!
I went back to work yesterday after a 2 week holiday and it's HARD!! I wish I'd taken another week off. We had a lovely holiday up north in Taupo Bay and returned to Auckland on Saturday.
Yesterday I met with my surgeon as my reconstruction surgery is getting closer. It's scheduled for 1 Feb so we are starting to get instructions/details etc. Having that meeting has made it really real and it's now on my mind. I have to be admitted the night prior as my surgery is first thing Friday. They expect I'll be in hospital for 8 nights. I'll be happy when it's all over. Last night I said to my husband ... Imagine, I won't have to find clothes to cover up my chest, I'll be able to buy normal bras, I'll feel like I'm moving on!
Anyway, I just wanted to check in and say hi. Happy summer all!
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Hey Kiwi mum, happy new year to you. its hot today. phew muggy, When is yr surgery.? I really hope everything goes to plan and you come thru with flying colours. you will look all bran new, it would of been lovely up at the bay, nice place aye. I went to the Doctor today, GP and had lots of blood done, well a full blood count, he said, i am in the danger stage where most recurances do recurr, well i am in the middle of second year and i need to always make sure i take the Tamoxifen, i must admit i miss it sometimes as i am sick of the foggy head and among other things and he said try not to make a habit of it as it is there to help things along so that i dont get it back and right now i am at the stage when deaths can occur, if you get past the 5 year, the chances are much less with each following year and that i had a very angry tumour anf the cancer cells were busy little Bs. so must be more vigalant and take my meds. I get of sick swallowing pills. colestreol, thyroid, losec. tamoxifen. But oh well. better be A GOOD GIRL I THINK, hope everything is good for everybody,
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Hi midnight. Surgery is 1st of Feb. I get admitted the night before as I'm first up on the Friday.
I have had to come off the Tamoxifen for a month of so pre surgery because of the increased risk of blot clots. I go back on it 2 weeks post surgery. It concerns me to be off it. I try my best to take it vigilantly but do forget on occasion. Did you see that a big study came out the past month which says 10 years is better than 5 years ... so I guess we're going to be on Tamox for a LONG time! Recurrence risk reduction was something like 25% for 10 years vs 5 years, so I'm thinking that's worth it!
It doesn't sound like a very supportive doctor to talk about being at the stage deaths occur. Maybe he was trying to scare you into remembering ... but still.
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Hi girls. Happy new year, I hope it's a good one for us all. My hubby sent a quote I thought you might like-
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out, and screaming 'WOO HOO what a ride!'"
-Hunter S. Thompson
Great isn't it!
I hope your surgery goes well Kiwimum.
And I hope your blood tests& appointments are good too midnight.
All is well here, except it's too hot to get much work done outside! Lovely tho- shouldn't complain
TTFN 😄0 -
Lol KT that is a cool quote. it has been hot alright, i do not know half the time weather i am sweating due to the weather or tamoxifen, i am just sitting at times and i sweat.
Kiwi mum, i took it that he was trying to warn me of the dangers of not taking it and to try not to make a habit of it. but i will take it anyway and at least i have done my part to keep the horrible thing away. Well hope the 1st of feb goes well for you. warm hugs
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Keeping Faith, How are you going from your lung problems. do you feel any better, any improvment? thinking of you. hugs xxoo
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Hi ladies. Going for round two of chemo tomorrow. Has anyone been in the private system and wanted a second opinion from public? Not sure how to go about it but guess I should just be straight up and tell my oncologist. He is the clinical director at Auckland's oncology dept anyway, as he works in Both systems. I respect him but I want to be sure we are doing what's best for me. I've only got one life!
On another note, the surgeon and the radiation oncologist are comfortable for me to have radiation but my gut is saying no. I believe rads is good but I have this feeling that if I do it, I'll regret it, for some reason which I hope to not find out. Obviously my other option is a nipple sparing mx, which I'm going to ask for two of, just to be even. Maybe I'm crazy but I just don't want these time bombs hanging off my chest any more!
I hope you are all well and have had a good break over summer.
Kia kaha0 -
Kiwi. I decided on the public system right from the beginning because I could get a certain treatment at the time. You are entitled to ask and you should have been given the option.
Must get moving as we are actually in Nelson on holiday.
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Hi Kiwi,
Just dropping in with some thoughts.
You are in Auckland so might have a slightly better chance of getting a second opinion but as you say most oncs work in both systems. As he is head of Dept anyway, who would you get for a second opinion? They might be all part of his team and that could prove awkward for both them and you. Like Alison, I think you can ask your onc and express your fears, maybe he will have someone he can recommend. I have the feeling that our small size makes things a bit trickier than say in the states but things are changing so maybe it is doable.
I paid for all my initial testing and surgery as I was told public was too slow with a waiting list. After I had my mx the breast care nurse told me to go private to get the best onc and then when I was his patient he would switch me into public and I would keep him, otherwise I would be given the next onc taking patients. He was working in both and was top in BC in our area.
As for rads, your dx line says you are 1B so low risk of reoccurance, but have you asked what the % of having the rads or not makes to the chances of it happening again. I'm assuming it is to the chest and armpit area?
I was stage 4 by the time I was doing rads and even then my onc did say if I didn't want to we could just wait and see. My rate of recurrence was 50/50 and getting the rads took it down to 15%. I took the rads believe me and it was fine for me. Took a bit of time out of everyday for 5 weeks but it was quick and easy and I didn't burn or anything and the tiredness was ok as well.
My mum got BC at 82 and like you she was stage 1 and grade 1 and rads were never suggested to her. Not the same case I know but similar in terms of staging and grade. So, it is possible not to do them and I know for some woman they have found that there is not the benefit in doing them. Again, I think you need to ask for those % and then consider what benefit/risk there is in it for you.
There is no one right answer with this disease and you have no crystal ball to tell the future. You just have to get as many facts as you can, make the decision you feel is right for you and go forward. Easy peasy hah?
Good luck with finding the answers you need and I hope you do get that second opinion.
Moira
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Thank you Moira you have provided a wealth of knowledge. My sole reason for not wanting rads is my gut, a big fat belly of women's intuition! I know it's right for so many women but I feel if I do it, for some reason I hope I never have to find out, it will be the wrong decision.
This of course is connected to the dcis/adh being randomly found during path, miles away from tumor. 4mm and not seen in mammo, us or MRI. Mind you, nothing was seen 4 years ago on a ultrasound and mammo when I first knew something wasn't right. I don't trust the tests, so I won't get peace of mind unless I know I've done all I can.
I had round two of chemo today, I can tell its worse but I'll get through it.
Kia kaha wahines0 -
kiwikid - I "knew" rads was not for me. Struggled with the decision. Started and then quit after 12 days because it was stressing me so much psychologically. I knew that I would have regretted it if I kept going... All those long term risks just to prevent local occurance!
I then took myself off and organised a bilateral MX with recon. Still lessened the recurrance rate without the horrendous potential long term effects. My MO was lovely. I said I'll see her again if I have to ie: if I end up with mets that need zapping.
Now, I'm no "chicken". I did chemo. I did surgery. I am doing Tamoxifen. I just knew rads was not right for me after an early stage diagnosis.
Jenn0 -
Thanks ladies
Jen I'm the same, I don't want rads. I'm wondering if anyone has been suggested rads but selected mx, and had that publicly funded? I assume southern cross will laugh in my face if I ask them to pay for a bmx when the pros are suggesting rads, but who knows.
My second opinion re chemo is this week, my onc referred me to another private onc. That's ok, but having to call his office a week later to ask where the referral was, only to find the typist was still typing it up, made me a bit cross!
Xx kk0 -
If you refuse rads and ask for a BMX and "they" say no then you will be left in a position disadvantaged in comparison either those who have had BMX or those who have had lumpectomy and rads.
This is what I pointed out to my doctors and not one of them argued that I couldn't change my mind and our private insurance certainly had no questions. They just paid what they usually pay.
Hope that makes sense...
By the way, my Radiation Oncologist told me I was certainly not the first person to have a lumpectomy then change my mind and go back for a BMX.
Jenn0 -
Hi Kiwikid,
Does your head in when you find out things like slow referrals are adding to your stress.
Hope it is coming up soon. At lest I found that going private things went very quickly. I went private as the public wait was too long,even though it was only a month or so. Private was about a week and in I went.
I'm thinking that if you don't ask, you don't get. So, push and see what they say. Even if they do say No you can have an appeal and point out the reasons why you need it. You are your best advocate and you need to be strong about fighting for yourself. Easy to say but harder to do. But you will get support here and a cheer leading team standing behind you.
Good luck with the second opinion.
Moira
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Hi kiwikid. I'm based in Auckland and went private 2 years ago.
Who is your oncologist? Most do both private and public.
I had a MX and am only just now having delayed DIEP reconstruction on Friday. I hope chemo isn't being too brutal. I had 4 x AC and 12 x Taxol. I definitely found a cumulative worsening of side effects ... but still do-able. I did do rads also.0 -
Hi kiwimum
Paul Thompson is my onc, and he has referred me to Reuben Broome at my request for a second opinion. They both work in both systems, but I am seeing them privately. My initial doctor referral to public (from a consult on 3 oct) had a mammogram scheduled for me on 4dec with a follow up a week later. When I found this delay out in early Nov I called up and went private. I had insurance but wanted to use the public system if I could, my insurance does not cover everything. As it turned out I had an ultrasound and biopsy on 12 nov, was pretty much diagnosed on the spot - she told me it would have to come out, to my pathology on 14 nov and surgery was on 22 nov. I was weeks ahead of the public game before I'd even started playing. My dr was surprised at the delay to get an appointment in Greenlane as she usually refers to manukau and said my wait would only be 2 - 3 weeks. Turns out it was two months! Anyway, that's all in the past now and I need to focus on the future. I will return to my surgeon, dr govendar, as soon as I know how much longer I'll be doing chemo for, to discuss a bmx.
Thanks for the kind thoughts about chemo, I'm on day 7 of round 2, this one has sure been harder than the first.
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Kiwikid - Reuben Broome was my oncologist and I was really happy and found him great. He is a real geek and totally into the science of it all. My surgeon was Isaac Cranshaw who referred me to Reuben because he is aggressive and my 12 positive nodes meant I needed an aggressive onc.
All my chemo was at Mercy. The nurses there, Elspeth and Emma, were amazing!!
Benji Benjamin was my radiation oncologist. He was a bit odd. Doesn't really say anything and then charges like a wounded bull! He is supposedly "the man" of rads in NZ so I guess I was happy with that!
Day 7 - hopefully you are starting to feel a bit better! I was quite sick initially and then after they added more nausea meds I got a bit better.
I have my delayed DIEP recon scheduled for Friday at Ascot hospital. It's taken me 2 years to feel ready for this!0 -
Kiwikid - forgot to add, I hope Reuben can give you some answers!
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moira thanks so much for your kind words.
Kiwi mum i met with dr Benjamin last week, I think he has an obe or NZ order of merit or something? Anyway, he told me not to worry, that rads would sterilise my breast of any remaining dcis left at the margin!? Then he looked at my breast and said surgeon had done a very nice job and that I should definitely not have more surgery and rads would be enough and my breast is looking very good. I told him I didn't care how I looked and that I wanted to live a long life. Anyway, I've decided to go back to the surgeon and flag the radiation, I don't know why for me I'm so against it, as I believe it's logical for everyone else, but I can't live with the anxiety.
I'll let you know when I've met with Reuben. Good luck for Friday, how long do you stay in for?
Xx holly0 -
7-8 nights in hospital, depending on how things look. I think I'm off work for 5-6 weeks, so quite a long recovery period.
What fantastic weather we are having for anniversary weekend, I hope you are all enjoying the sunshine somewhere!0 -
All the best Kiwi mum. we had our long weekend last weekend. looks like you will be in Hospital waitangi day. Thats in middle of week.pain having one day in week. you cant kinda go anywhere, except beach for day. anyway will be thinking of you. gentle hugs. xxxx
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Hi all, back in Auckland and survived having both grandchildren Monday night and all day yesterday.
Nelson and Golden Bay were wonderful. Will post pics later - have a couple on facebook but have to get them from my camera.
Midnight, I am so pleased they are testing your ferritin levels. Did you know you can be anemic and have iron overload, and so giving iron to you makes the situation worse. Have a cousin with haemochromatosis and so when my ferritin levels went up I was tested but I do not have it. It is just that your symptoms sound so like her's.
Must go and get some things done around here.
Big hugs - gentle ones!!!
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Hi kiwimum and kiwikid
I have been reading your posts with great interest as you have had the same surgeons as me at Greenlane and Auckland Hospitals.
Stan Govinder did my 1st excision at Brightside Hospital, Isacc Cranshaw my partial masectomy and Wayne Jones did my skin sparing mastectomy, both at Auck Hspital, and will do my implant in a little while.
Its interesting for me, because all my surgeries and procedures were done thru the public system. Every single one of them, and all up 4 mths from 1st diagnosis to full mastectomy and expander where I am now. And believe me I had so many procedures, hook wire, sentinal node dye, mri, ultrasounds etc.
It seems to me I received excellent treatment thru the Public Health system and I am so very grateful.
And I just want to say i am thinking of you both, and all you other brave women, battling this terrible disease. We are all in good hands with these lovely surgeons and nurses. Take Care all of you and very best wishes for a positive outcome. xoxo
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Thanks patc142 - I'm glad to hear you are getting a good standard of care. A friend of mine also had Reuben through the public system.
I hope you didn't think I was infuring that public wasn't good. My primary motivation for going private was that we've had medical insurance for 10+ years so I couldn't think of a reason not to utilize. Both systems are good.
I'm being admitted tomorrow night. I'm quite excited to think I'm going to have 2 breasts again, after 2 years.
Take care all.0 -
Thank you Patc
I have hope now from your post. I spoke with stan today and he thought it would be unlikely that the public system would cover my surgery as its now 'preventative', though I want surgery over radiation. Have you had any trouble being approved? We're rads recommended? Inreallynhope southern cross will cover me but now I have moRe hippe about public if they don't.
Good luck kiwimum, I've been thinking of you a lot his week.
Xx kk0 -
Morning
I have been in both systems here. Had mast privately then went to public for chemo and radiation. Have no complaints about either and I had no waiting or delays doing it like that. Like Kiwimum I did private because we had insurance but the docs wanted me in the public system for chemo so continued with public for rads. I had Benji for rads and you are right he says very little but as soon as he thinks something might be wrong he orders tests etc. I see him privately still - when I decide to because as some one said his fees are high.
Have my check up and mammo on Monday and already very nervous about it.
Must go for a walk then I have work do do - yes something I get paid for.
Big hugs to all.
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Best Wishes kiwimum, I willbe thinking of you. How awesome for you to have 2 breasts again. Will they make you nipples as well? This is what I am going to have as well, only the one breast tho. Please let us know how your surgery went when you get home.
To all the women who have private insurance, you're right. Use it. My point in my previous post was that we all get the same surgeons anyway.
Kiwikid, I dont really understand your last post. Are you saying that you have to go public for your radiation? I thought all rads and chemo were done in the public hospitals. Or are you saying you dont want rads and would rather just have the breast removed. In my case I had no radiation. After excision and a partial, surgeon could not obtain 'clear' margins, radiation was offered after the partial, but when results came back it was decided a full masectomy was in order. And I am happy I had that outcome. Like you I wouldnt have wanted rads. I have had no other treatment. As far as Wayne Jones is concerned I am cured and now have more chance of being hit by a bus.
If I am reading what you say correctly, you are now stuck in a hard place. You want the full masectomy but your insurer may not pay,is that correct? And the public system may turn you down because you have private insurance? Surgeons have mighty powers. Get Stan to write a letter to your insurance provider outlining what you have decided upon. This does not seem right to me. At every step of my journey I was consulted and choices were given to me. In the end it was me who decided my full masectomy on the surgeons advice. I feel for you I really do. You shouldnt have to be fighting your provider for the treatment you desire. I would also contact the NZ Cancer Society, surely other women have had this happen too.
On another note......is Stan still nattily dressed and carrying his satchel sideways over one shoulder. I used to joke with him that he moonlights as a male model and acts in Bollywood movies. He has the most beautiful hands doesnt he.
Good luck, keep us updated x
Best Wishes Alyson for your mammo, Im sure it will be fine xo.
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Hi Ladies, Hi Patc, nice to have you on our boards and welcome. Man she is hot out there, very draining.
Alyson, the nurse said, i had almost zero iron is my cells and that why they are testing for the blood cells, for ferritin as the heamoglobin was at the bottom end of normal and doc told me that already too. they are worried as i have been on iron tabs, so just checking i have enough of the white blood cells and she said, they will check for any abnormal looking cells and enough red cells. I am probably anemic, have a nagging dry cough and dizzy almost every day and tired, but it is hot, but i feel like my energy drops quick. We got rid of some cows this morning. and the Ugly Bull, 1500 kgs of him, he went in truck and i hope the tuck was still in one piece as he was demolishing the fences, pieces of long tin nailed down the fence and tossing it in the airm while he was waiting. Gosh what a scrarey time, hubby said he is playing as he is bored, i waited by the van for a quick exit. i was sarting to think i needed more nickers at one point and wondered how he would go up the loading race.But he was ok and he walked in and i could hear the truck getting abit shaken up. but the professionals took them and they said, they would tag him as they were going to another port first to go to another truck and then up to new plymouth aread, riverlands meat works. ten cows and him. Hubby said, he used to be a pet calf once, and would lay down by yr feet when you sat down and you could hug him and he grew up and now he is a intimidating swine and would kill you by looking at you. well need my nap, will go and look in the ausy site and see what they doing. hugs
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Good luck for Monday Alyson. My check ups also make me nervous!
Well I'm sitting here in my hospital room. My family has just left and I'm all alone. I'm a bit bored really!! This time tomorrow night it wil all be over.
I think I'll take a shower to kill some time. I'll check in when I can.0
