Kiwi ladies who need encouragment, but all welcome.
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Hi Girls, yes i do Kt, i think i should get away from it as it draws my mind back to cancer. While we on subject i am going to BS in a couple of weeks and she sending out a bloodtest form. I have been having alot of rib pain and back pain, i dont know if it is related to BC, but standing for short periods of time, they nearly kill me, so i rang BC nurse asnd shwe has booked me to see him as i have not seen anybody since January, its probably the tamoxifen, but you can keep blaming that or check it out and have peace of mind, have heard too many stories of people leaving things too late and then been told, gosh you have have advanced cancer and you only a year if your lucky, well i dont wanna be one of them. so i am glad she taken me seriously and booked me in. its probably nothing and i am getting paranoid. i did not get my six month check like they said as well and she said that. so will wait for that appointment. yea this board draws me too KT like a magnet, i try to make a point of staying off it, but some how i am back, reading most the posts most of time.
some of the australian girls are having a meeet up in Dec, i wonder if we all should some day next year when conveient, i would love to meet everybody and would love to meet the girls in Oz, but our bussiness is too busy at christmas time, well nov and dec are mad months, if anyone interested, may be worth presuing in future.
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Hi All
I definately hear you Kt and Midnight the forum does have a magnetic draw, but I am trying to restrict myself and trying to get on with things. But it is difficult, I know we are all different and going along different roads on this journey but yet we still have a common bond and it is that that I find really helpful and comforting somehow.
I am very lucky in that I do not have to take any extra drugs and I hopefully am sorted, but I still have that nagging fear that it may come back. But like you Kt I look in the mirror and there is the constant reminder, and my new foob is not like my old one and never will be. I hope with time it will become more of me and less of an imposter! On the positive side I am trying to eat healthy (have eaten salads throughout Winter - must be mad), lost 6kgs and got back on the fitness band wagon. In the hope that this will help me both mentally and physically.
Alyson I am very impressed with you making a quilt, you must have real patience. I know how hard and how much time this takes. I take my hat off to you. Glad to hear that things are getting better for you Musical.
I would definately be interested in meeting up with you all in a central location, not sure that I could afford a trip to Australia at the moment though, but I think it is a great idea.
Loving the sun and the last few days that have been dry, so hoping that this can last and I can get out in the garden as it so needs some TLC. But at the moment as I walk across the grass all I hear is squelch....squelch.
Have tickets to see the ABs play Australia at Eden Park and so looking forward to the match.........Lets hope it is a close match but the best side wins
Big hugs to you all
Hils
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Hi ladies, a newbie here but very much a kiwi in the deep south - well, Dunedin anyway. I've just found this thread and while I have new friends made through the journey that live locally, it's always good to have others who have shared many of the same experiences. Unless you've been through it it's hard to articulate sometimes just how it has been. That fear of recurrence is very much there no matter how hard we try to put it to one side. I have been experiencing lower back ache and headaches. I have had my eyes checked and am waiting for new glasses so will see if that helps with the headaches, and I'm sure the backache is related to my starting in the exercycle to shift this chemo and Tamoxifen weight. Of course if things don't improve it's off to the GP again. This all flared up days after my first year annual check with surgeon and now I don't see her for six months. Isn't that always the way? Murphy's law. Look forward to hearing more from you all, Cath
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Hey catnz, welcome, its always nice to have a new newbie to join us, we have a great bunch of girls here, very supportive and also the ausy girls are also great to talk to, they are wealth of info, have found so much from them on here than with the my care team, yes recurrance is a problem i have of brushing into back ground, get a bit paranoid at times. but its good to share our woes with the ladies and i hope to see you join with us all and enjoy it as much as i do. love and hugs. oxox
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Welcome Cath, great to welcome a new person to the group. Like you I have some great friends, but as you say sometimes it is easier to chat to someone who has walked in your shoes - they get it you do not have to explain.
When I initiailly read your post I thought you were going to say you were in the deep south USA
not that there is anything wrong with that, but the mainland is a lot closer. Big hugs to you and if you have any questions or if you just want to vent feel free. Everyone on here is brilliant and very welcoming 0 -
Hi Cath, welcome! As Hils and Midnight say, youre welcome to share, or ask questions or whatever. I find its particularly good to be able to converse with others who have to deal with BC according to the NZ health system, and the more that come here the better, not that we want more BC of course!!! (Perish the thought!). Im finding out, through others on here and through my med team, things can be different according to what DHB we belong to. Even though treatments can be very different according to what type of BC it is and what stage you are etc, its still great to be able to compare notes on things that we might share the same experiences of, like LE for example..... I hope your back ache and headache get better. How long have you been on Tamox? When I 1st went on it I got a headache now and then, but it eventually went. It is stated as a possible side effect too. I cant remember if back ache was listed as a side effect though.
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Wow, its the weekend already. Time flies when you're having fun! My son has a tummy bug, poor thing. Luckily its a teachers only day at school. What a way to spend a day off.
Hi Cath. Nice to see more kiwis here (apart from the having BC thing)
Midnight, I hope your bloodtest results are good & the appointment goes well. I know what you mean about the ever present concern of recurrence (sometimes at the back of your mind, sometimes annoyingly at the front).
Enjoy the rugby Hils! Hope the weather is good for it & for the gardening etc too...
Musical, I agree its nice to share our experiences with the BC & the health system. Hope all is well with you at the mo.
Well, I'm hoping for some dry weather to get some stuff done outside, still haven't finished planting all those trees I got a while back! Hopefully DS will be better too & we can work on having some fun
Have a great weekend
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Thanks kt. I hope your son has a speedy recovery from the tummy bug. That can really knock you flat.
Well, yes, another weekend here. Looks fine too. Had a lovely day here today, but cool this a.m. The ground is slightly better than a bog hole now and if we get a good wind or two it'll be good. Soon be time to get out there and lift my silverbeet onto a side garden and get the raised one ready for spuds. I was brassed off with my brussell sprouts. 2nd time Ive failed with those :-((( . They really need cold temps, and we sure have had those, but its not consistent enough. I put so much effort into them trying to keep the white butterflies off. Really is disheartening as I prefer to grow as much of my own veges as I can.
Hopefully my feet and joints will gimmee a break and allow me to get things done. Sooo frustrating when you cant even fire on 4 cylinders let alone 8.....I dont think anybody who has had BC can say they havent faced that recurrence monster from time to time.
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Thanks for the welcome guys or gals I should say. Yes, we are all members of a club none of us would willingly have signed up for but it is places like this that help us get through the ups and downs knowing we are not alone. I follow a couple of blogs based in USA and although there are similarities in treatments, it is still different to the kiwi way. I only know people with BC who have gone through my local DHB so our stories are very similar, but I'm sure treatment can differ depending on where you live. One thing I am so grateful for is that I didn't have to travel for treatment - I just heard of a woman who was having double radiation treatments here so she only had to be away from her family for half the length of time. I know what a strain it was on hubby to take over the reins of doing everything for our family with 4 kids.
I went back to wearing my old glasses after wearing the new contacts the last couple of days and my headaches are back. I am so looking forward to getting my new glasses even though they have those new progressive lenses in them because I have to face reality and realise I'm getting older! I am giving the Exercycle a break for a few days and will go out walking, weather permitting. I've had trouble with my lower back in the past but now every ache and pain takes on another meaning.
Spring is in the air down here. My friend has 8 lambs on her lifestyle block I'm itching to see. The daffodils are in bloom in time for daffodil day next week. My tulips are well on their way too. Knowing our luck we'll get a dump of snow at the wrong time - I have seen snow here in Dunedin in November. We too are hoping for things to dry out so we can get in to the garden.
Hope you all have a lovely sunny weekend ladies, Catherine0 -
OH Cath I hope you enjoy those lambs..... Awwww they are soooo cute. Better to watch than TV LOL. They can be so naughty too. You never get sick of watching them play.
Hey I hope the glasses help. Headaches are the pits. Ive been getting a little low back nagging ache lately and I strongly suspect Arimidex, but like you I've had trouble in the past. A long time ago I did a minor injury and if only I knew then what I found out later of course after having many pain killers, I fixed it myself with that wonderful book "treat your own back".
I was talking to my LE on my last visit about sleeves and funding, and get a load of this.... she said in our DHB we are only supplied with one per year where as a DHB in the South Island (sorry cant remember which one) gets one funded every 6 months which is supposed to be about how long they last. This is how it can be so different, because each DHB is responsible for how what and why it funds things.
Im gunna have a wee rant now. I know one thing that totally brasses me off and Im gonna stick my neck out here.Ya get the same drunks/gluesniffers/whatever (including teenagers) out on the streets on weekends, getting into trouble, getting a 5 star hotel (prison) for the night, compliments of a free taxi service (the cops) all at the tax payers expense costing 1000's and they CHOOSE to do this. We get BC and none of us CHOSE it and we get told the DHB has to tighten their belts, and something like a VIT D3 test is too costly!!!! REALLY !?!?!?!?! I still havent found out exactly how much it costs but I read a NZ article that said 50$ and someone else said 200$. Then I have to FIGHT to get a baseline bone density scan funded. That fight took 8 months for a lousy 160$. Yeah, whatever. Peanuts compared to the same dickheads that fill AE with their selfish stupid antics . Perhaps if they were REALLY made to pay for their choices they'de think twice. Rant over.
Im off to enjoy a bit of sun and pick some looovely Fresias (sp??) and enjoy the gorgeous perfume.
Hope you all have a good weekend.
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Good Morning Ladies, well today i am 15, turn it around and you will find out how old i am. Hubby brought me Mackers brecky home, nice, not too hot, by the tine we ate it, but still yummy, he also got me a baby bunny, seven wks old, he is cream, with mottled blue patches all over him, he is lopp eared rabbit come from auckland, BIL went and got him, she lives over north shore area and has about 80 bunnies, its a bussiness, i have always wanted a royal blue, well he got one thats almost that. yesteday hubby was looking for lucy the goat, she was having a kid. little girl, she is black and whilte, he says very cute kid. she had a white one too, but it still born. Amy is about to drop too, trevor done his deed, he is white and so is lucy. where ever the black and white came from, oh well. the kid goats are cute as. have a great day everybody. Anybody come up with a good name suggestion for my baby bunny, let me know, i am thinking yogi. i know that was a bear, oh well if you think of any, let me know.
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Happy Birthday midnight! Hope you have a great day.
Sounds like you have your hands full with all of your animals & 2 new ones! Very cute. I'm not too good thinking up names for critters, usually just think of a character in a book or movie I enjoyed...
The sun has just peeked out again after the latest rain- I sure hope we see more sun than rain over the next few weeks. The animals are fed up with mud, me too- makes it hard to get any outside jobs done. And its depressing!
Hope you don't get any more snow Catnz, I can't imagine how cold it must get for you! I'm glad that when I was in active treatment (chemo & rads) that I lived in Auckland- now it would be 1 1/2 hr drive each way- no fun when you're going through the wringer.
We are mostly pretty lucky with our health care in NZ- available for free when you really need it (for most things...not all as you have found out Musical).
My DS is still home, washed out from his gastro. At least he can eat & drink now. DD is at school, she's trying to figure out what to do next year when she leaves school- hard decisions, so many options & so few jobs...
Better get off here now & go & do some work!
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Happy Birthday midnight! Form the sounds of it my kids would love to see all your animal friends - do you have a farm or lifestyle block or something to keep them all on?
I have my oldest home now after sitting the first of her school exams this week. I got her macd's for lunch but didn't get anything there for me. I did see an ad for a choc-mint flurry which was really tempting. Anything mint and chocolate seems to call my name! Maybe instead of my monthly frappucino from Starbucks ( with the whipped cream on top of course) I might try one of these new flurrys instead.
Musical -what does LE stand for please? I've got a breast care nurse to get in touch with if anything crops up, but haven't talked to her in ages. Is this something similar? Other than that I just see my breast surgeon for the regular checks. I'll also have to see the
Plastic surgeon in six months as the reconstructed breast is bigger than my other one ( not to mention perkier). I have to see if I lose some weight whether it will come off the new boob as well as my tummy! Ah the joys of a TRAM flap - anyone else have this issue? Cath0 -
Hey Cath, Did you get to see the little lambs?? We have them running around everywhere at the mo and they are soooo gorgeous!
Im sorry that you are having some issues with a TRAM flap. Others may help here but as I chose not to have reconstruction its not something I know about.
LE ='s Lymphoedema. Im trusting that your med team somewhere along the line will have told you about LE. Just in case they havent I'll present a very brief summary of the things Ive been told........ Long story short, anyone who has any nodes out at all, will be at risk for LE for the rest of their lives. Some will get it with very little to trigger it while others may never get it, and they say the amount of lymph nodes out is not necessarily related to your chances of getting it. In other words there are many variables that go into sorting out the reasons for this nightmare..
In any case, LE can turn into a very nasty brute at any time, and trust me if it does, it can utterly change your life. We often hear ignorance is bliss, or ya just want to forget about BC for a while, but in this case prevention, or caution, is FAR better than dealing with the ambulance at the bottom of the cliff. If you ever have to wrap it is a total deal breaker.
On the good side, theres things we can do proactively, like using a sleeve when flying, always have antibiotic cream on hand for any bite, scratch, nick etc, and watch watch watch for any signs of cellulitis. Get onto it smartly if so. Theres also things that can really help if you are caught early, as was the case with me, such as MLD (manual lymph drainage) which is taught by Lymphoedema Therapists. Theres common sense approaches to things like the amount of lifting and exercise we do. We should not overheat our arm by staying in the sun too long with it exposed, or have hot baths with it submerged for too long.
Hope this is helpful Cath
kt, yes when all is said and done, and despite the favouritism as presented in my rant, I still believe we are fortunate in NZ. Insurance in any event is wide open for abuse of another kind, and I see quite a variation in what folks in the US get.
Did anyone see on the box about all these kids theyre lining up for Vit D testing? DIdnt get all the story but mmmmm a finger prick then dabbing the finger onto a swab??? What? Wonder exactly what theyre testing for, (VitD2???) especially when I had to get a certain amount of blood drawn for mine, and they cost anything between 50 to 200$... . Heres an excerpt from "Vitamin D Council" website.
QUOTE: (bold emphasis mine)
What blood test should I have?The only blood test that can diagnose vitamin D deficiency is a 25-hydroxy-vitamin D [25(OH)D]. Get your levels above 50 ng/mL (125 nmol/L), year around. Unfortunately, about 10-20% of the doctors in the USA order the wrong test. They order a 1,25-dihydroxy-vitamin D, thinking that by measuring the most potent steroid in the system, they are getting useful information. They are not. 1,25-dihydroxy-vitamin D is an adaptive hormone; it goes up and down with calcium intake. Furthermore, as 25(OH)D is a weak steroid, when 25(OH)D levels are low, the body compensates by increasing the amount of the potent steroid, 1,25-dihydroxy-vitamin D. Thus, a common cause of high 1,25-dihydroxy-vitamin D is low 25(OH)D or vitamin D deficiency. So these doctors see the 1,25-dihydroxy-vitamin D is normal or high and tell their patients that they are OK when they are vitamin D deficient, advice that may prove fatal.............
UNQUOTE
http://www.vitamindcouncil.org/news-archive/2008/vitamin-d-qa/
Musical
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Cath, alot of the animals are on a life style block at BIL farm, i have the bunnies here tho and the cats and the birds and the ginea pigs and the chinchillas. yes we have a zoo. its alot to feed at times, but most of them are too bad to get thru, they dont require every day feeding.
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Happy Birthday Midnight sounds like you have had a great day celebrating and a lop eared bunny as well. As for names my favourite names for rabbits are Thumper; Roger; Peter; Harvey; Hartley; Bre'r and Bugs. But I am sure when you look at him you will know what to call him.
Musical this is the place to vent, if you cannot vent here where can you. Sorry to hear that you are only able to get a sleeve every 12 months and there is another DHB that provides them every 6 months. But as Kt says we are very lucky to have the health service that we do. When I read some of the posts by the Americans and the amount of money they are having to pay if they do not have insurance I thank my lucky stars. Even though at times it can be a bit of a DHB lottery as to what you may or may not get!
Cath re your TRAM flap I cannot really comment I had a UMX with TE (although what I have is a silicone / TE). So I will not need to have it removed in totality just the port and the last fill at some stage. My BS wanted to do some work on my own boob and make it as perky as the new one, but after he had described what he was going to do and the loss of sensation and possible other problems. I decided not to bother as I thought my days of being a topless model were over (only kidding)! In reality I just could not be bothered with the extra operation and pain. In clothes no one would be any wiser
I your DS Kt gets well soon.
The ABs game was great and a brilliant atmosphere.
Hope the sun shines on all of us and the ground dries out for all of us. Have a great week everyone, may all the new animals be welcomed by the sun and not the rain, big hugs everyone
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Thanks Hills for your comments. At the moment I am lopsided to the extent I have to have a chicken fillet type silicon insert so as to fill in the cup - I have to say that it bugs me. My options will be liposuction on new breast or a silicon implant on the other side. I guess I'll keep on with the trial of weight loss and see how that affects the reconstructed breast, if at all. It is very noticeable in my swimsuit, esp perky vs droopy!
Having lived in the USA, and having two children while living there, I know how expensive the health care system is, and there are so many variables depending on which insurance company and plan you have. I, too, am grateful to be here in NZ. I know the shots I had after each chemo, having become neutropenic after the first requiring hospitalisation, cost in the vicinity of $1200 each. The dressings I was given when I started pinking up during radiation were for burns patients originally and I know they can't have been cheap either. Yes, it seems unfair that there are variations between DHB's as to what they provide but we aren't the bean counters who make the decisions and I don't know that I'd want to be either.
My hair is driving me crazy at the moment. It is so curly and while everyone comments on how much they love the curl they don't have to live with it. I had wavy hair before losing it and am hoping that as it grows, ever so slooowly, the curl will become waves again. Thankfully it hasn't come back grey but I have more silver hairs than before - I try and pull them out sometimes. Denial - vision is going, silver hairs, but I am not getting old! Cath0 -
Hi ladies
Cath - I've not gone down the recon path yet. I did visit a plastic surgeon earlier this year and he recommended tram flap. How has your recovery been? How long were you in hospital and at home laid up? I was put off by the scale of the surgery and the post operation recovery length. Having just finished 10 months of chemo, surgery and rads, I just couldn't face it.
I'm now considering scheduling the surgery for later this year, or after summer in April 2013. I'm really interested in your experience. Thanks
My hair too is driving me crazy. I have 9 months of growth and it's curly and wavy. It seems to be growing out as much as down!! I really struggle to like it.0 -
Hi all
Just back checking in after a great couple of days in Rotorua. It was our 40th Wedding Anniversary so we decided to get away .
Kiwimum, I didn't do the recon as they had to take so much muscle from chest area and it was deemed to be too difficult at6 the time of mastectomy. Hair was a problem for ages, was always curly but it came through really curly - it took ages to come right. And it came through white changed to almost apricot until it settled down (and I started to colour it).
Hope you have all had a good weekend especially you Midnight - Happy Birthday.
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Wow Alyson - 40 years is an achievement. Congratulations!!
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Thanks basically its too comfortable to do anything else and we have been through so much together.
What part of this big city do you live in Kiwimum?
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We are in Westmere (next to Ponsonby and Grey Lynn). Where are you?
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Hi cath, I am a kiwi living in Aus...
I am scheduled for a bilateral mastectomy and immediate free TRAM on the 28th of September. Had an appt with my PS today and he said that the fat transferred from the stomach always acts like stomach fat and so if you lose weight it will also come off the new breasts.
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Hi KiwiMum - if you go down the public health route for your TRAM you will probably have your op down at Middlemore. When I was discussing my choices earlier in the year I was told that there was a support group for women having these types of surgeries, where you could ask questions etc. If you are interested it may be worth asking if they can put you in touch with them.
Alyson congratulations on your 40th wedding anniversary, must have been great to get away for a few days.
Have a good Tuesday everyone
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Hi KiwiMum, where do I start about the TRAM flap? Firstly it is major surgery - my surgery took 5 1/2 hours with two surgeons working on me so recovery from the anaesthetic alone is one thing. I went in there without having talked to anyone who had had the procedure because I knew I could possibly be talked out of it. Today marks eight weeks since the procedure and while I still have issues, pain around the radiated area which was disturbed in surgery that comes and goes and getting used to no tummy muscle, I am pleased I had it done. If you had asked me in the first couple of weeks post surgery I would have given a different answer. I was in hospital for five days and it probably took two weeks before I felt like I could do anything much. At three weeks I was back driving the kids to school and home again and doing little things around the house but hubby did the big stuff. By six weeks I was back to normal duties well and truly and probably had been for a little while. My recovery has been okay with the wounds healing well but I have had an issue with nerve pain which has been with me since my mastectomy and it flared up big time one weekend - it's always in the weekend isn't it! That's all sorted with different meds now.
I don't blame you for putting it off. I had diagnosis July 2011, mastectomy Aug 2011, chemo 2011, radiation dec/Jan and then the small procedure before tram flap May before actual surgery June - looking back it was a lot to do in a year. My surgeon offered me the option of the June date when he could do it privately under a Govt contract before the contract ended on July 1st so I grabbed that opportunity but otherwise it would have been better to wait. Feel free to fire any more questions my way, Cath0 -
we had a very tragic end to my birthday, am a very sad lady today. last night we lost our little fox terrier Shadow , well he went out to toilet aboit ten and i left door open and both of us thought he was in and under the blankets like normal, but he had not, he went out and we found him on road this morning, we both got a shock to find he was not in, when hubby got up about 4 and he was obviously killed by a truck as he was not muh left of him. he was such a knowing little dog and was very human like in his understanding, why he went out there, Tremaine Ave is killer as all the main trucks go out of town south from from there and AFL depo just down road from us. i thought Shadow knew better than that. now he has lost his little life, such an amazing little fellow, he was 8. so we have a sad house, all the other animals are quiet, heidi our shihtzu is very solum as i guess she feels the loss, it was a very sad end to a lovely day.
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Oh midnight - not the way to end your birthday. So sorry to hear about this. It's always hard losing a part of your family like that as you are obviously close to all your furry friends. Hope the sun is shining where you are to help lift your spirits. Cath
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Sorry for your loss Midnight. Pets become part of the family, so hard to say goodbye to them...
Congrats on 40 years of marriage Alyson. I'm glad you had a nice time celebrating it.
I admire you ladies who go for reconstruction- I just can't go there.
I can't believe how tired I am these days, I want to have nana naps all the time! Must be the anti-hormonals, that & the joint achiness etc....yay. I really look forward to hopping in to bed each night!
Have a good afternoon everyone.
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Hugs for a sad Midnight.
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Oh no Midnight! I'm so sorry to hear that. Hugs!!
Cath - I really don't want to go through all that! But I really don't like having only one breast. I'm only 41 and I feel like I'm missing something - and the clothing part is a real pain. I'm always on the lookout for high necked clothes!
I have medical insurance and Southern Cross will pay for the tram flap - plus $5k towards getting the other side symetrical. My remaining breast is certainly not flash, after two children. I'm hoping for a perky set as a result. I think I should downgrade my expectations and it won't be like it was before. It's been 16 months since my mastectomy and 9 months since I finished rads. Gosh it a long recovery road isn't it?
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