Kiwi ladies who need encouragment, but all welcome.
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Hey Kiwi Kid, welcome to the family. we have a great bunch here and welcome you with open arms, but not happy you have to be here for the reasons you are. hope all goes well for you at the MO tomorrow. Kiwi Kid have you been here b4, i have a feeling i have seen yr name, i know we have kiwi mum, but i keep thinking you sound familair, maybe not. anyhow hope it all goes well for you. gentle hugs.
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Thanks Ladies
Yes it was a strong man hug, still sore today, ugh! Alyson I'm in East Auckland, where are you? Off to read about Lymphedema as yes, I've not been told anything about it. I had a micromet, .6mm so I wonder if I'll get chemo...
xx kk
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It is my understanding but I might be wrong that anyone who has any lymph nodes positive would have chemo. You may be told about LE at your upcoming appointment, but you should have been told about it already. For example, baseline measurements should be done BEFORE surgery. I didn't have that because I wasn't told. In any case it cant hurt to bring up LE.
Just a quick run down of tips for anyone who has had ANY lymph nodes out:
Disclaimer: It is NOT my intention to scare or overstate anything but to simply encourage those at risk to get knowledgeable about LE because it is a potentially debilitating condition with consequences that surely SUCK! You ignore it at your peril, therefore, the ostriche syndrome is not a wise course of action.
-You are at risk for the rest of your life for LE and new studies are conclusive that your prophy side is at risk also
-You can minimize that risk by taking precautions such as... wearing a sleeve if you fly, keeping your arm well moisturized and clean, having antibiot cream for any scrapes scratches nicks insect bites and so forth, wearing gloves when you are doing stuff like gardening or cleaning, keeping your arm from too much heat like direct sun or hot showers/baths...
NEVER EVER, let the med people put needles in you or do BP unless it's a life and death situation
Radio therapy increases your risk of developing LE
LE CAN exacerbate your risk of getting cellulitis and theres lately been talk that the more you get cellulitis the more damage is done to the lymphatics
You may not ever get it, or it may be 20 years down the track, or you may trigger it tomorrow by some seemingly benign action.
If you ever have swelling, pain and/or burning pain, or heaviness, you need to be checked out by a LE person ASAP.
All the best kiwi for your appt. I hope this helps.
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Kiwi, there is great LE treatment etc at Greenlane Clinic- and its free as are the sleeves you get. I have sent you a PM so feel free to contact me ant time, only too happy to chat. Who is your Breast surgeon? That can make a difference about info you get.
Hi other kiwis. In this part of the world it looks as if summer might just have come.
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Hi Alyson, Im new here and from Auckland. I have had all my treatments at Greenlane and Auckland Hospital and so far am very impressed by my surgeon and treatment. I had my last fill 2 weeks ago and will have swapover surgery in late Jan or early Feb. Yes summer is here at last and its beautiful. This afternoon my daughter and I are heading to Greenlane Hospital to see a genetic counseller and am so impressed that this is a free service to us. We are so lucky. My overall outcome is very good, no chemo or radiation or hormone treatment needed. Isacc Cranshaw did my partial masectomy and Wayne Jones did my skin sparing masectomy, expander and will do my swapover. Have a good day everyone lots of hugs.
edited to add Stan Govinder did my first excision and hook wire biopsy, do any of these names sound familiar to you?
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Hi Patc good to see you found us here as well. I am in Mt Eden and will send you a PM with my phone numbers so you can contact me if you wish.
I do know of Issac Cranshaw and have heard of Wayne Jones. I was unable to have recon because the the type and placement of the tumour and now I cannot be bothered. I have been very impressed with the treatment I have had both privately and through Auckland, nothing but good things to say about them and for me it still continues.
Not sure why but today has been crazy so I am going to have a cup of tea and work out what I have to do next.
Hi to everyone else and hope you are having a good day.
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Hi,
Feeling a tad low and wanting some support.
X-rays today show possible lung mets, to be confirmed Wednesday 19th.
I am struggling to breathe and now I can't sleep. What a 43rd birthday present : (0 -
I was awake at 3 this a.m. and didn't get to sleep B4 midnight. I almost got up and thought I'd check out the forums, but lay there instead to no avail. Gotta go out in a minute, but Im thinking of you KF and hopefully it's NOT lung mets. BIG gentle hugs. I am so sorry about your breathing issues.... youre so young to be having this. Hugs again. Will call back in later.
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Hey i am sorry you are going thru this KF. praying for you, is it yr Birthday, Happy Birthday, its my neices today, she 41. i really am hoping you will be ok, keep in with us so we know how you are going. warm gentle hugs. musical is great and she will be a real support for you too, has alot of knowledge and has been a blessing to me, the aussie girls are also a tower of knowledge. take care.
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Hi Keepingfaith69,
I'm going with Midnight and use the the KF.
This is hard news to take and it's worse when we actually have to wait to find out for definite. Our mind takes us to dark places and fear takes over. Hard as it is please try and talk yourself back to a calmer place. The waiting is terrible and just before Christmas too. Been there, done that.
There are still lots of things that can be done for mets and you have many treatments to try. Do you have any other mets or just this. When I say "just this" I don't mean that they're not important and bad enough but volume of mets can be important.
I see by your byline that you are religious and although I no longer follow a church some words have always stayed with me and I repeat them like a mantra. "Trust in the Lord and lean not on your own understanding. In all your ways acknowledge him and he will make your paths straight" Very popular verse but trusting in Him helps me deal with the whole uncertainties of this trip. I've always thought of the last bit,not as He would solve everything for me ,but He would help me to be able to walk the path that is my life. Sorry if this sounds preachy and believe me I'm not but having something to hang onto and focus on combats the fear and helps me breathe.
I hope things go well on the 19th and you have good doctors around you. Keep in touch and if you haven't already venture over to the stage 4 forum and have a read. We are quite a nice bunch and you will see many who understand completely where you are at.
Moira
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Oh KF it's awful waiting for results. Be strong and we are all here for you
Midnight I haven't been here before, I was only diagnosed in November, am starting chemo late dec/early jan. Then I'll be going back to have a nipple sparing mx instead of radiation.
xx kk
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Hello all the Kiwi Girls, you have a great thread running here.
KeepingFaith, I just wanted to add my support to you. It is awful waiting to hear bad news, I'll be praying that you get good results, know that there are many, many women who are thinking of you and giving you warm and gentle ((((hugs))))
Trish
xoxo
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Hey all,
Midnight was just gonna "call you out" and see where you'd got to. Was hoping all is well with you. LOL well some things I know but it brasses me off when ya have to keep having "updates" cuz your head doen't retain it. (grrrr) BC is also such a vast subject because of the different types that none of us could ever hope to know everything across the board. Thats why it's so neat to have different ladies and gents chime in and add their stories and experiences. If I can help someone a little and even make them smile sometimes, then I consider it well worth while.
KF, I prayed for you this a.m. on my way to the city. In your time, please let us know how you are. More hugs.
Moiralf, that very scripture was the one I mentioned to someone I know about an hour ago, and thankyou for mentioning it.
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Welcome Kiwi kid and KF and Pat, we are all here for you guys and just pop it when you feel you need somebody to talk to and even if we dont have answers, we will give you 100% love and support. and as you see we have lovely trish sending her support from ausy too. they are lovely lot of ladies and like musical can help you alot. There is a lovely lady in auckland called Alyson and she also is very supportive and will be able to be a blessing to you there as well.
Musical, I am here, jjust been abit caught up, the other day, had to go to woodville and pick up our meat. what started off to be 15 rams turned out to be 17, the man who killd them, had a mate up in the bays who wanted horned rams for studs, apparently they valuable, and would trade with ram hoggets, to which we were understanding that we would take them live and then send them to works later. well we ended up with 17 and they killed them and Andrew our mechanic took me down to get them as they wanted the freezer space. so we had all these sheep to get rid of and if you were close, i would of given you one. but we gave 4 to salvation army food bank and four to another food bank as this time of year people are so struggling. the man from one of the food banks said, they get 3 families a day needing help and to get meat this time of year is a real blessing to them.ands the rest went to our drivers, we gave them one and they brought an extra, which will come out if their wages as they know they cant afford to pay in one hit, but if i do it that way, they dont miss it. they both wanted an extra and ron said, buy and get one free. so that took alot of time up and yesterday i was getting over it. i get so tired much quicker, it is so annoying. i rang BC nurse to see if they could suggest another drug other than tams that was last week, no hear back yet, Slack really. have my six month check up with radaition doc in Jan, so will ask her, other than that i am thinking of getting the hysterectomy thing done, which will get rid of the estrogen instead of taking these stinken plls. that give me brain fog and a headache and s/es. oh well i have gabbled on here for too long, catch ya. xxx000
Dx 8/12/2011, IDC, 1cm, Stage Ia, Grade 3, ER+/PR+, HER2-Surgery 08/31/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 10/10/2011 ExternalHormonal Therapy 11/23/2011 Tamoxifen
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Kia ora everyone,
Thank you for your care, love Snd support.
My mind is still fuggy and everything feels surreal. In amongst it all, I am part way through moving house.
Today I feel exhausted so the progress has been very slow.
On a better note, I fly to Queenstown in the morning for a weekend at Milford Sound.
It's a place I have always wanted to visit and my husband booked a birthday weekend trip for me, a few months back. I considered not going, but I think it will be good for us.0 -
Hi all
I have PMed are new ladies and they know they can call me at any time.
Have been thinking we should try to get together at some point later in January. WIll try to sort out something because it could be fun. There is not alot in actual support groups here. I can't talked as I refused to go to any face to face things but good at doing coffee and as I live just off Dominion Rd there are wonderful cafe nearby. It has been so great to actually met up with friends in the States and recently Chrissy in Australia. Now Chrissy has wonderful knowledge and she will talk yuo through any worries. KF there is a Thread on Stage Four - Not Stage Four but have questions - well something like that and its great for worries.
I must go and pick up DD whose car is at the panel beaters and of course the other car has no insurance!
Be back Later.
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Keeping faith, i know how you feel, last year i was going thru radiation and our land lord wanted us to shift out as he wanted to do house up and that was the 16th of Dec and we got students to come and help us, i was so sore and tired and had the surgery and we had to move house, i feel for you. i donot know how i did it, well if had not been for the students, i dont think i would of. its was good having the massey students as they needed the work and we needed them. we had to get them for another big shift a couple of weeks ago, and for helping to shear sheep and they took them to their next destinations and just generally helped us all week, they were awesome, as hubby had to do a truck run, we have a trucking bussiness and we 2 drivers down,so its been busy busy, you go and have a lovely weekend dearie. i know exactly how you feel. it all gets too much. take care xoxo
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Hi Trish. Your post crossed with mine. Lovely to see Oz ladies pop in.
Midnight that is a lovely thing to do to give that meat to the needy. Im a bit hacked off because we had one ready to kill yesterday being in the yards all day and all, and another one as a companion so less stress, and the guy didnt turn up!!. Had an emergency, which is understandable but he could have given us a quick ring so we could put them back out to eat. grrrr. Sorry but I never was very tolerant of unreliability and I'm even less so these days. Perhaps I'll blame Arimidex. Course you have had that with your workers and so you'd know how annoying it can be. Supposed to be turning up at 6 tonight. I'm annoyed that it is hotter than yesterday and I've had to jack up shade etc. Hopefully we get a cool night. At the mo I can't cope with cutting up 2 ( hubby cuts down the center but I do all the rest) because of LE which I'm having some issues with ATM. Also, 2 for us is doable but with a lot of putting and taking with chilling. The freezing side no probs. We scored my mums freezer and it sure is handy to have 2...
You might like to check out the forums here about oopherectomy (sp???) Not sure if theres a dedicated thread but theres info here for sure. Its the procedure that some ladies do to have ovaries out as well as hysterectomy. I know very little about this and would never advise one way or the other except to look at the pro's and cons. Some say it's a very radical move and they may be right, hence the caution. It's good to know all the options.
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KF I hope you have a great trip to Milford S. How lovely for you and hubby. Its the only place/area in NZ I've never visited. Hope you get some great piks too. We'll all be thinking of you.... please give us a wave over the lower north island as you fly over
As for shifting.... theres no words, except it can be exceedingly stressful. I hope others will help where they can.
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KeepingFaith - have you had previous scans that showed nothing and this one now shows something, or is this the first scan you've had? Why is it going to take so long for them to confirm these results? Is there any way you can contact your doctor/health team and ask them to get back to you earlier since you are so stressed?
I am astounded that they can leave you hanging in a stressed state for such a period of time without support.
As I said on the thread you started, I am so sorry you have facing this uncertainty.
hugs Jenn
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Gosh just heard that one of the storeman at the depo, that we contracted to in palmy had a stroke this morning. he was rushed to Hospital this morning at 3, only in his 30s. young family. not sure on his condition, but you never can tell aye. poor lad, he is Maori guy, and as gentle as they can ever be, real lovely person. he had a headache yesterday and wanted to go home, but had to stick it out as they were short staffed, and now we know it was more than a headache. hope he recovers quickly, cant see him back b4 Christmas. shame it happened to him. he is such a warm lovely person. i am very sad that happened.
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Hi there Keeping Faith!
I am new here, but just wanted to say Hi! to you on your birthday!
So sorry to hear what you are going through, the waiting is just brutal. There are many, many women here thinking of you today, and we send a collective wish for good news on the 19th from all of us.
What a wonderful present your Husband has arranged for your birthday, enjoy every moment of it!
"Surround yourself with Angels!" is great advice that I was given.
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Hi Jennt28 can I ask, how long would you expect to wait for these types of results in OZ?. It has long been a bone of contention of mine with how long some things can take. When I get a D3 test it takes about 10 days and has to go dwon to Canterbury. There is a vast difference between this and a scan showing possible mets.
Hi Ariom, welcome to the boards. Brutal most certainly adequately describes the waiting....something every woman with a BC Dx knows.
Midnight don't know how many times Ive had "doubles" (dont believe in co-incidence) today but youve just given me another. The guy I was talking to in the City that I spoke of B4 told me his dear friend just died of a stroke. He was about 64 I think he said. NOt 30, but still very young to die.
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I get my CT scan and MUGA results same day and the echo I had the other day will be back by tomorrow...
Jenn0 -
Hi Kiwi girls, my first time on this great thread. Sending birthday wishes to Keeping Faith and just to let you know we are thinking of you....very best wishes for a good outcome, will say a little prayer for you.
Hugs Lola from Australian sisters.
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Keeping faith you are in my thoughts and i really hope you have a lovely weekend away. i know the power of the mind and the fear of results, so i empathise and my heart breaks for you right now.
Alyson I think organising something for us Auckland girls is a great idea.
Xx kk0 -
Hi there keepingfaith, sending you best wishes and gentle hugs. Im new here too and I find it awe inspiring to read these ladies posts. My heart goes out to so many battling this rotten disease. All we can do is cope each day until suddenly we find we are living again and a day may go by without even thinking about cancer. xo
And goodluck jen and hello to lola. Im in Aucks and and really up for a catchup sometime.
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Morena everyone,
Thanks for you hugs and advice.
I spent my birthday enjoying my husband and children. Really special. Abd now I'm in Milford Sound, ready to paddle a kayak out to the mouth of the sound. Very exciting.
The breathing is easing but the cough is getting worse. Advice please.
Have a wonderful day xo0 -
Hi Gals, good to see a support thread here, I just need to vent. How do you gals cope when you hear of friends being rediagnosed . 2 of my friends from 09 have been told. Just found out about 1 on FB. Am shocked and angry. I expect it is that I am scared, this disease needs kicking in the guts big time. Grrr, rant rant stomp feet,
Huge hugs to all.0 -
Hi zuzeee, yes its a swine of a disease, and unless you are very fortunate, there is no getting away from it. i am ok now, but i cant say that in a couple of years i will be, i have to have the tamoxifen with its s/e, but i agree, we just have no idea when it could strike again and you live with that fear and try and be loving and supportive to every lady you come in contact with and not always have the answers, but be there, you vent away because there is such an increase now in this country alone, several woman a day are being diangosed with BC and mets and men as well. its like pandemic in our own country and diabetes and strokes, a young guy we have reg contact with 30ish had a huge stroke yesterday morning. poor guy, loveliest young maori guy you could ever meet, had a head ache day b4 and was rushed to hospital at 3am next morning with a stroke. so we seem to be getting sicker. i wonder if its so much stress everybody is under all the time is a trigger for it sll, they say stress kills, we have a truck bussiness and the stress that we have had with that has been all too much. so really love and support is all we can do with our friends who get dx or re dx. our hearts break for them believe you me.
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