Kiwi ladies who need encouragment, but all welcome.
Comments
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Well, its grey, windy & wet again!
So long as DH can get home tonight....he finally made it home at just after midnight last Friday via Palmerston North (drove there, then flew)
I hope you're all keeping warm. I have the fire going.
How were your results KiwiMum- I hope all is ok.
Take care
kt
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Hi ladies
My CT was all clear! Phew!! I'm pleased it was checked out, but stressful all the same! I guess I'm just clumsy!
I had the second stage of my recon yesterday. Nipple reconstruction and shaping/tweaking for symmetry. It was quick, compared the last op, only 2 hours. I have bandages on for 10 days before I get to see the new nipple. I'm not sure how long after I have the tattoo done.
I'm home for a few days recovering and am quite sore. Hubby is home with me, which is nice.
I hope everyone is keeping warm! Less than 2 weeks now until school holidays. We are off to Wellington for a few days to see my dad.0 -
Great news on the all clear for the scan Kiwimum! All the best for your full recovery from surgery too. Wow 10 days. I really hope that goes well and NO INFECTIONS! How lovely hubby home with you. Its so comforting to have them around. My hubby was with me right through the BC 'trip' and in fact was off work to look after me. I just don't know how I wouldve managed without him. Hubbys like mine deserve BIG KISSES
even though we can get snappy and crappy at times they just overlook stuff and keep on with the support. Mine deserves a medal LOL!All the best for your Welly trip. Weather warmed up here quite a bit for this time of the year.
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Hi guys - just found this Kiwi thread. Anyone else from Wellington?
I was dx January this year - have been going through chemo at Wellington hospital. Had AC and now just had 2nd Paxlitaxol treatment today out of 12 and will have radiation later in year.
So a long year!! Just found out today am in chemo-menopause - nothing like some surprises!0 -
Hi Kruise, pleased you have found us. We are a fairly scattered group, will check back and see if anyone is from Wellington. . How are you going with the taxol - not too many side efects?
Feel free to ask questions, will try to answer them. Also pop over to the Aussies thread as there are some very knowledgeable girls over there. Our treatment is very much in line with theirs while sometimes there are big differences with the US ones.
Annette where are you?
Big hugs to all
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Hi girls.
Welcome Kruise.
I hope your chemo is going ok. How often do you get it? (I had AC but not the one your having now). I'm in medical menopause (at least we don't have to buy sanitary products for now!)
I hope everyone else is good.
I'm glad your scan & nipple recon went well KiwiMum.
Nice to 'see' you Musical & Alyson
I've also wondered where midnights at. Hope you are ok Annette.
Not much happening up my way- I'm still waiting on my appt re pmx, sometimes wavering about whether I want it... Just the usual stuff.
Take care all
kt0 -
Thanks for the welcome Alyson and kt1966. And hi to the other girls on here.
I will check out the Aussies thread Alyson thanks. I am enjoying reading all the info on here and learning lots too. kt1966 - my taxol is weekly - every Friday morning. So far side effects are ok - a bit of joint/muscle pain from day 2-5 after but I feel ok in myself. The AC certainly wiped me out far worse - feeling pretty yuk for that first week and then ok for the 2nd two before being hit again. I have been lucky so far really though - just a bladder infection during the AC. Worst thing was my other half ended up with a collapsed lung while I was doing the AC. It happened twice within a week - no reason for it just 'spontaneous' so he ended up having surgery on his lung and in hospital for 6 days. That was more stressful than my own surgeries and chemo!!!
Hope your weekends go well.
Love and Light to you all xx0 -
Welcome Kruise! Im so sorry to hear of your issues with other halfs collapsed lung x2. right at the worst possible time. That would be terribly stressful. AC chemo is the pits. My sister had it and it was awful, but I had FEC which is supposed to be just slightly easier on the system. Nevertheless I ended up neutrapenic after the 1st round and ended up in isolation is hosp. for 5days. How many rounds of AC do you have left? I hope all goes well for you and nice to see another kiwi find us, but of course not for the reason why.
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Hi kt, well all the best for your appointment for pmx. and when that comes up. No doubt by then you will be more definite in your mind as to what you want as its a very personal decision. Hope you are doing well in the meantime and that "up north" weather is treating you right.
Midnight where are you? Are you OK? Please let us know.
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Hi all,
Have heard from Midnight, things are up in the air with business and this has turned her health issues into chaos. Will check on her again tomorrow.
Big hugs
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Hi ladies. Welcome Kruise. I had the same chemo as you. I found the AC quite tough, but tolerated the Taxol pretty well. Ticking off the 12 x Taxol treatments helped pass the time. I got right to the end and had my last dose delayed 2 weeks after getting shingles. Not a fun time!
I went on to have radiation daily for 5 weeks. I found rads ok but did get quite bad burns towards the end.
Please ask if you have any questions.
It's nearly a week since my stage 2 recon surgery. I'm still bandaged up and not allowed to get the bandages wet. It's very annoying sponge bathing every day. I see the doc again on Thurs and plan a nice shower Thurs night!0 -
Well only just got back online now... we had a storm a few hours back which crept up suddenly with a mighty clap of thunder and lightning which took out my broadband modem. :-X . Now I've just configured the connection to do dialup in the meantime grrrrr
. Oh well it's better than nothing.Heard from Midnight as well and sh'e having a hard time of it and doesn't sound like things are going well at all. If youre looking in here, I hope you and Hubby will be OK.
Kiwimum hope you enjoy that nice shower! and hope all your surgery is healing up nicely.
As for me, well Im flippin clumsy. I took a horizontal dive the other day on the concrete as I tripped over a pot plant coz I had 2 pair of glasses on ...sunglasses further up and reading glasses further down my nose.!!! and thankfully I didn't hurt myself. I thought at the very least Id get some good bruises but no. All good. At least I didnt break anything so my bones must be still OK on Arimidex. Don't know if it upset my LE though as landed on thatt hand quite heavily. Im having yet ANOTHER flare and its back to wrapping which I seem to be struggling with to get it right. UGH. Will see LEist tomorrow. Hopefully I can get on top of it.
Hope youve all had a good weekend.
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Hi kiwi ladies, just trying to connect with someone here that has bone mets. This is a great thread. Thanks in advance x
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Kia, go over to the aussie thread - there are a couple there with bone mets. Chrissy is wonderful at answering all questions - she is wonderful. There are some here in NZ as well.
Hope you all have had a good weekend.
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Hi again,
Nice to see you again Kiakaha. Sorry about your progression- I hope the tamox kicks those mets out.
I hope your LE is settling down Musical, no fun making it worse with falls...
KiwiMum I bet it will be great to get rid of the bandages soon- hope it all looks good
Alyson, thanks for checking on midnight. Its so good we have this support group, its lovely to share stuff & not feel so alone with stupid BC.
Nothing new happening here, apart from a new part-time job I should be starting soon. It will be nice to get out & about (I'm job-sharing with a friend)
Well, better go get my son from hockey practice...
kt
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Hi Kiakaha,
I have bone mets. Had them for over 5 years now. Started with one vertebra back in 2008.
Progression to hips in 2010, went on xeloda and then when they were gone went on to femara.
I have some small mets up my spine and in my ribs but they are stable and my onc calls them sleeping.
Happy to answer any questions you might have.
Moira
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Hi there, thanks for your concern, sorry, i have not been on, just problems that have occured in the bussiness, theft, you name it, they do it, been very hectic, my health has been chaos, bPs very high, blood sugars high, they have dropped again, but diabetes not in control. they found blood in urine other day,so have to do 3 lab samples, 2nd one of morning, i forgot this morning, they have alcahol in the jars, prepared, i dont understand whats that all about. it says not to discard of alcahol, they want these full jars, they know what they looking for, i guess., its been a nightmare, but anyway i will be back. the BP was 158/ 102 the other day, and the diastolic has not been going down past 98, which is the one that they worry about, the bottom number, have to see diabetic and thyroid specalist, thursday.we have employed a temp[ to take over from hubby with truck, so that hubby can have time to breath. been very hectic. will catch al later. love to you all.
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Hi midnight
nice to hear from you. I hope things settle down for you soon- you don't need all this stress at the moment.
I hope you can find some new reliable employees to help take the load off your husband & you.
Another storm on its way by the sound of it. I hope you all keep warm & safe.
It will be nice to have an excuse to stay inside at the mo, I've overdone it in the garden & my arm & back (just by shoulder blade) are feeling it- a mild flare of LE.
(has yours settled down Musical?- it must be hard having to wrap)
The rain has just arrived here...
Take care
kt
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Hey Midnight I hope things are settling down for you and you can get yourselves out of this horrible situation. You certainly DONT need dishonest people around you causing all sorts of dramas. Im not sure how blood pressure measurements work and what is dangerous and what isn't but oh dear it sounds like this is not good as well as your diabetes. I hope this gets sorted asap as you can do without this. Sometimes we have to make some hard decisions about what we take on board and what we dont and it sure sounds like youre having a rough time of it with all this on your shoulders. HUgs.
Well its a grey ol day out there kt and yea the fire is stoked up and its nice and cosy and warm as I sit as the computer.....still on dialup (grrr) waiting for ISP to come and give us another modem, since the electrical storm fried the other one....well Im 99% sure. Aywayz t did a moan and they are supposed to be coming this avo and are going to reimburse some of our bill when it comes ... so good. Still fighting with the LE and wrapping. Yu just gotta do what yu gotta do. I think there is some progress but it comes right then the darned thing just swells up again. Maybe I have to be a bit more patient and see that it takes time to get it under control.
Hope everyone is havig a good week
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Reporting that it's getting colder here in Auckland. Going down to Wellington tomorrow - happy dance because I love Wellington. Trying to decide what to take to stay warm.
Well DD1 is now a Dr; she had her DMA (Musical Arts) confirmed yesterday when she made her final submission. Boths DDs have academic doctorates now (DS is a lawyer with a double degree). Spent last evening helping her clean her house because she was off this morning to Brisbane for a Choral Music conference and her cousin was coming to house/cat sit. She was just so tired and getting stressed about things that I was getting worried as she has epilepsy and stress and tiredness don't help.
DD2 is getting settled in Canada, their furniture arrived Tuesday their time which will help things greatly. Do miss them.
Hope yo are having a warm day!!
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Alyson, hope you enjoy Wellintgon, we are not to far from it, about 2 hours drive, quite often go down if they have trade me stuff there to collect. my sister loves it as well, she lives in the far north, Hokianga, so to her, its like going to australia, big smoke. lol. and i am the opposite, i like being up her way, peace and quiet and no neighbours, lol, guess thats why i enjoy rural life, but not got it now, will have again one day i guess.
Well feeling quite happy today, we have employed a temp worker to do the run that hubby been doing, he lives in the area, knows the area, and hubby says, he semed to get the idea pretty quick of how to handle things and so let him to it by himself today, he sort of interviewed him as they were travelling around yesterday, maybe the answer to prayer, i mean we conduct these flash professional interviews and the whole lot lied about something and changed in to little brats, this one he got to see working, at the same time as he interviewed him and so far so good. got feiding done in very short time and throughly enjoying it. getting the job done. freed hubby up and hubby is quite relaxed about him using the truck. Bil seems to be happy with him too. he thought he was a nice guy, genuinely nice, not just to impress, some you can tell are nice, some apear to be nice and then change. Anyway i will not bore you. have a happy day, cold as.
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Before i forget, my sister went to her ladies place that she does home help for up north who has BC, she going for another mx of her other breast, anyway she saw another oncologist, she never seen before and he took her Blood sugar levels and she asked him why, and he said, because hormonal, Al's can give you Diabetes, esp if you are at high risk of it, yep the dam drugs can give you diabetes, just abit of info, if you had not heard it before, i know there is a link of BC and diabetes as i have read it and heard it happening and now i wonder if i am one of those ladies that has it because of BC or The darn Tamoxifen..
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Hi ladies
I seem to have developed lymphedema in my arm, it is fat tight and really sore.
I have been passed from provider to provider and it seems that the le treatment at Greenlane is only provided to Auckland oncology patients? Has anyone moved in there after private treatment?
Surgeon told me to contact the oncologist, oncologist said go back to gp, go said its nothing, ended up at er, they thought it was a clot.. It's not... Now surgeon saying contact cancer society... I'm really getting the run around and everyday I'm getting worse.
Sorry to complain and thanks in advance for any advice.
Xx kk0 -
Hi Kiwikid
Here are a couple of telephone numbers and hopefully someone will be able to assist
Dove House in Auckland offeres a Lymphodema Service - not sure what the criteria is for access to this. But give them a call on 575 4555.
You could also try the Lymphoedema Support Network - Joy Donohoe on 625 6463
Hope one of these can help
Was just popping by and saw your note Kiwikid. Hope everyone else is doing well
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Hi Kiwimum
I see my surgeon next month for nipple reconstruction. Im wondering how they do it and is it going to be very painful? Only the left breast needs doing. Who was your sugeon? Mine is Wayne Jones. I see him at Greenlane but get my surgery at Auckland Hospital. 2 hours seem like a long time for this kind of op. Im feeling quite scared this time and I dont know why. I guess cos its more surgery and a very delicate op. My next appoint is just to discuss things with him and get booked in for the surgery. Where do they get the skin from to make a new nipple? Its freaking me out.
Thanks in advance and a big hello to all other ladies with Best Wishes to you all.
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Kiwikid - definitely give Joy a call. She is my mother's best friend! Wonderful woman who I am sure will try and help you in the right direction. Tell her you know Jennifer from Sydney from here :-)
We are actually visiting Auckland from Sunday and are having dinner at her place straight after we arrive. Was quite shocked to see her phone number and name here because she has never mentioned she is involved in this way... Might try and get some advice from her myself.
Jenn in Sydney0 -
Wow! Isn't it a small world Jenn
Enjoy your trip over here...hopefully it will be nice weatherwise. We had a bit of a cold snap this week- heavy frosts north of Auckland.
Kiwikid, I hope you sort out the LE- sounds like it might be that.
I have a mild flare at the moment, I've started a new job that's a bit more physical than I first thought. I think I'll have to get measured for a new sleeve/gauntlet to help prevent it progressing. I'm hoping medical ins will cover it- I'm not in the public system for that, & I think it will take too long to get in there.
Patc- good luck with your procedure. I didn't have recon...but I'm looking into pmx.
Hope everyone else is doing well
kt
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kiwikid - I had to email Joy to find out what time dinner is on Sunday and I told her someone might be calling her. This is how she replied this morning (I think she thought you were here in Australia where I am):
"Lots of doctors don 't know anything about Lymphoedema - I
would be happy to give you some information and a copy of our latest
Newsletter to give her when you get back. Also I don't mind if she emails
me with her problems - I get all sorts of people emailing and phoning me
all the time and I refer their questions on to a Lymphoedema Educator who is
attached to our group."
Give her a call :-)
Jenn0 -
Thanks so much Jenn!
I went to pink Pilates physio and she can feel a cord from my armpit to my thumb (hence the agony) but my arm also measures 2cm fatter at the shoulder, so am seeing a lymphedema specialist this week and also going back to the physio.
My breast care nurse has finally referred me to greenlane but they have advised it will be 3 to 4 weeks till I am seen.
Feeling much better now the ball is rolling and I will can Joy for advice if I need to.
Have a nice dinner
Xxx0 -
Hello all, just been quickly scanning through the latest posts. Since the BCO board maintenance I haven't been able to get into the forums. Long story short, it was just a matter of me cleaning out the cache. (duh I shouldve known)
Anyway, kiwikid Im sorry you are getting this run around! I hope you get this sorted and get fitted with the right garments. LE is a pain up the butt but it is what it is, and we can do things to help the situation or to help minimize things getting worse until we get seen.
Some suggestions would be to keep your arm raised as much as possible and doing 15 to 30 fist pumps can really help. Keep well hydrated, dont lift heavy things with that arm, keep it away from things too hot or indeed too cold, keep it clean and moisturised and try not to get any scratches nicks bites etc. I always have on hand some antibiot cream which has saved my butt countless times. Try to be careful with those little snags of skin on your fingers when they get dry, and things like hangnails. Always be on the lookout for any red patches which could be indicative of the dreaded cellulitis. Unfortunately any node removal at all means this is what we have to be aware of from now on and the rest of our lives. The good part is many of us won't ever get LE and also it can be managed and controlled. Right now Im dealing with intermettent flares which are proving stubborn to get the upper hand on.
All the best!
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