Kiwi ladies who need encouragment, but all welcome.
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musical, you have come up in my thoughts alot lately, how are you, did you have a good christmas and new year and how is your mummy? just have not seen you around and hoping you ok. when you get a abit of time would love to hear from you even just to see you ok. hugs xx
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Hi Ladies, well the appointment went quite well. I have been assigned a surgeon who visits from Auckland (I am living in Marlborough) He seemed ok - he recommends a lumpectomy as my boob is largish and the tumor is he said 2 to 3 cm, grade 2, ER+PR+ and waiting for the FISH test result for HER2 status. He also said they have not seen anything suspicious in the lymph nodes but will perform a sentinal node biopsy at the same time to check for anything really small. (all in my words - I'm feeling a bit novice at this!)
Then it's radiation down in Christchurch. hmm that will be hard away from my family. Maybe Chemo, maybe not - time I guess will tell.
Questions; will I be able to drive the 320km trip back home between radiation treatments (I gather they don't do them on weekends) or will I be too tired/sore?? Maybe flying will be easier??
I am quite relieved about the lumpectomy, after reading loads of info here it seems there is no substantial benefit in a Mx in my case - although surgeon is not going to do any other tests prior to surgery. Is this normal? I thought I would be blood screened, x-rayed etc... I still have that anxious doubt that cancer is spreading through me as I type, or maybe its hidden somewhere... I guess I do need to trust them to do what they specialise in.
Also having doubts about whether I will get money out of my insurance company - I have trauma insurance, and with a large mortgage, two kids, credit card debt and travel costs looming, were going to need it. Anyone out there had any experience with insurance companies good or bad?
Cheers!
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Hi Jo
Pleased the appointment went well.
You may be able to drive home each weekend but that will depend how tired you get. I drove all the time I was having radiation but not that distance.
Are yo going private or public? I had my mastectomy private then went public for the rest - you can ask to do so. Insurance paid for surgery without question but you can get everything through the Health Boards.
You probably will have blood tests just before surgery and then scans if it is considered necessary. When is your surgery date?
I am sitting here at the computer if you think of any more questions..
Big hugs
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That does sound a very do-able plan Jo.
When they do the lumpectomy they will make sure they have clear margins around the lump and if the sentinel node is negative they tend to believe the cancer is contained just in the lump.
Ayson has good advice regarding insurance too. If insurance will also pay for scans, if you need them, you might be able to get them a bit quicker privately that public but onc etc can all be done through the public. Onc may decide there is no reason to go searching with scans if it is unlikely that it has moved out of the breast.
Not sure about financial matters but definitely check out what you are entitled to. It will take a lot of stress off if you can access it.
Hope the meeting today answered a lot of your questions. You will develop a whole set of new questions but that's ok. Still do it one day a time.
Moira
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Thanks Alyson and Moira, you can understand how relieved I am to chat to those who have the hands on experience, and this website has got such good information. I have been preparing for a battle with the insurance company - I believe the are not really in the business of handing money out even if they say they are, making $$$ off our premiums is more the priority! My practice nurse friend said that they trawl through medical records as soon as anyone needs to claim - the nurses find it a pain and try and give them only what they ask for (too much useless information they certainly don't need) I guess I feel they are experts at twisting the wording in the policy documents to trip us up. The two questions I answered "no" to where "have you in the past 5 years visited a doctor for anything other than a cold", I forgot I pulled a muscle in my shoulder blade and needed pain relief and anti flam during that time. The other was "have you ever had a cyst, lump, abscess, boil in your breasts. I answered no, but I had a staph infection in my "good/other" breast in 2006, my useless GP at the time passed it off as insignificant and did not recommend any kind of treatment or follow up. I did not think a staph infection came under those words when I filled out the questionnaire so I do think they will go nuts over that one. Maybe I'm just anxious and super paranoid and a bit un-trusting!
See what happens.
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Hi Jo
I'm glad things are underway for you- sounds like a good plan.
I have insurance too- haven't made a claim yet, but need to send in for my Dexa scan & something else (can't remember off-hand) and am anticipating questions even tho its supposed to cover pre-existing conditions...(at least we don't pay the premiums directly as its thru hubby's work)
I hate dealing with stuff like that too...I hope it goes ok for you.
How lovely that you live in Marlborough- I've never been but would love to have a look.
I just got a new hen yesterday- she's gorgeous- a blue australorp (10 weeks old). My 10 yr old leghorn chook & her were snuggled up together in one nesting box last night. It will be nice to let them out in a week or so to free range.
I will try & post a photo once I have a good one
Hope everyones having a good day
kt
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Hi kt
we used to have hens when we lived on a rural property in North Canterbury, loved them to bits. We were sure they knew their names and seemed to cluck back when we talked to them. We accidentally managed to rear a rooster too. He was attacked by the girls when little so we used to carry him around, made him super friendly and much more tolerated by the girls as he got older (lol) My daughter was two and named him Ernie (seasame street)
Now I just have a crazy insecure spca dog, who needs lots of loving - so we are having heaps of cuddles at present!
Yeah fingers crossed with the Insurance...
Jo
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not sure if im in right place - im definitely a kiwi though! Im having a diep tram flap reconstruction in a month - Had mastectomy 18 mths ago left side - lobular type- does anyone have any suggestions (im on a pretty strict eating plan and no alcohol) im really excited even though its a huge operation. Any suggestions hints or tips welcome! Thank you.
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Hi Intheclub, welcome.
You are in the right place- we are like you, here because of BC & kiwis! And a few Aussies & others from time to time.
The more the merrier
I had ILC too, as you can see, but had a bit of IDC in there too. I had a mx 10 years ago & couldn't have recon at the same time, so was a uniboober (wore prosthesis) for 10 years. But I got sick of yearly mammos & the worry of not being able to pick it up so decided to have a prophylactic mx last year. I didn't want recon (too much surgery for me! but everyone is different)
I know a couple of the other girls who post here have had recon- hopefully they'll pop in to give you some suggestions etc.
Anyway, nice to meet you- where abouts in NZ are you?- I'm an hour north of Auckland
Cheers,
kt
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hello and thank you for lovely reply. Im on north shore auckland. Do you have get togethers for the group.
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Hi Intheclub, welcome to our little group.
There are several Auckland girls here. Have been meaning to get something organised. I met with the aussie girls last November and it has been suggested they come here this year. Once I get back from Wanganui next weekend I will message people about meeting. I have had coffee with a couple of people.
Hope everyone is having a good weekend.
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A catchup would be awesome!!
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Best news I've had in months! Insurance got accepted (yay - phew - thank goodness) Wow I must have lost some faith in they way the world works lately...
Time to forget bills for a bit and put energy where it is needed.
XX
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Hi ladies
hope you are all doing well! I've now had 19 of the 25 rads & so far all good, skin a little bit red & i reckon my muscles on that side are a little sore, but nothing major.
Family is visiting this weekend so that's great.
Welcome intheclub, I had lobular also, but had a skin sparing mastectomy & immediate reconstruction, which is a bit different from your case. I don't regret going for the reconstruction, but I didn't realise what an impact the operation would have - it was big and I felt horrible for the first four days, like a truck was parked on top of me, but once I was up and about things improved rapidly.
Now that I am nearly finished with treatment, I do wonder about the follow up, how do they know if the treatment has worked?
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Hi all.
Its super quiet here!
Glad your insurance was accepted Jo... now you can get on with the important stuff.
Woody, 6 to go! or 5 by now! It will be nice to go home & get back to normality
Alyson a catch up would be nice
I hope you're all doing well & enjoying hols etc...
I can't believe its back to school next week for my son. My DD starts tec in a month, but we need to find a flat for her (& her friends) so hopefully something good will come up.
Take care
kt
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hi everyone. I've just had my 19th Taxol treatment. They will do scans around week 24 and see how things are holding up. But it seems from my bloods etc that I'm stable.
Super busy at work so I'm back up to 5 days. Going in on chemo days 1.30 till 7 so I'm absolutely exhausted by the weekend.
Hope everyone is doing well. A catch up sounds great Alyson.
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shazza, you are inspirational, you all are that go to work, how do you do it with chemo and working. your body must get so tired. you all amaze me in an inspiring way and i really admire your strength.
hope everybody is going ok.
Hi KT and all you girls. sorry Woody, i never caught up with you, hubby was in Hospital last week and that took time, sorting him out, he recovering and having his clinic apointment tomorrow and i have mine tomorrow to at one thirty at the rads doctor, his is at eleven.
have a good day. ladies take care big hugs.
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wow, Shazza. Sounds like you are doing well. Don't over do it tho! Can you not get chemo days off at least?
Hi midnight. I hope hubby is recovering well & that your appointments go well tomorrow.
Did you feel the quake yesterday? Apparently it was felt from Auckland to Invercargill- not as strong as around you of course.
I didn't notice a thing (but then I'm further north...)
kt
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we are short staffed at work at the moment with people on leave and someone unexpectedly leaving. Hopefully some one new is starting soon and everyone else will be back by the end of the month. Then I will drop down to 4 days. I'm absolutely exhausted by the weekend and take it pretty slow. I've got a 12 hour shift coming up next week which I'm not looking forward too. I work at a vets and we are on our feet the entire day except for an hour for lunch. Before chemo I worked those shifts a lot but I had a lot more energy then. Hoping the fact I have Monday off means it will be doable.
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hi lovelies
I started writing a bit on this thread the other night and then something happened to my phone and I lost it all - and didn't have the energy or motivation to start again 😝
Shazza well done on 19 taxols to date. I struggled through 12 so you are inspirational - just as midnight and kt have said. You are doing awesome.
Congrats Jo on the insurance coming through - I had my surgery privately thru insurance too and it wasn't a problem. I just hate all the paperwork stuff tho.
Woody - you are nearly there too with the rads. Are your last few boost ones?
I am still in Tauranga and felt the shake here. It was a goody alright by the looks of it. Had friends staying up until yesterday so it's nice to have some peace but I spent the day doing washing etc. It's just me and my 10 year old son here now as my partner Tim and my girls have gone back to Wellington now too after the Wgtn Anniversary weekend. I'm still deciding when I'll go back. A bit more sunshine before I have to pack up would be good.
I have forgotten what a pain it is growing out hair. Before I got bc I had just grown out a fringe I had - boy I'd love that fringe back now...hehe. It still isn't quite long enough for clips or hair pins but maybe another month.
Much love to all of you xx
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Hi Kruise,
enjoy the rest of your hols
, you've been in Tauranga a while now- its nice there.Shazza, hope the new person starts work soon to take the pressure off you. My daughter is going to be at tech this year (and next) to become a vet nurse
kt
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Hey all, just had lumpectomy yesterday. It went well or better than I thought - having never been under general anesthetic before I didn't really know what to expect. Older lady across from me in the ward was recovering from MX so we had a bit to chat about. Terrible sleep as a High Needs/Over Dramatic woman came in later in the night and woke us all up, and kept us up all night. No need to watch Shortland Street!
Lump was bigger than the 2.3cm dx on scan. Surgeon suggested the margins are wide and clear having taken a "fist" size out. The dye travelled into 1 node - so that's gone too. Fingers crossed. He mentioned there has been fibrosystic changes and he found a few cysts which he took out. That did not surprise me after the infections/bursting cysts/pus I experienced in both breasts in 2006. My concern on that one is that I have cysts forming or in place and I'm pretty sure in both breasts as I get really sore/lumpy/painful nipples before my period. I will talk to him about that when I return for a check up/dressing change on Sunday.
Hope everyone is enjoying some summer weather finally, and wishing you all well. xx
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Well done Jo!
First ever op out of the way
I'm glad it went well. I guess you're home now, there's nothing like your own bed for sleep (mind you last time I was in, the bed was so new & automated, really comfy) & who needs noisy neighbours after an op...?Hope the sentinal node comes back clear for you. Sounds like they took what needed to come out- probably no rads for you
Yay, long weekend up here. The weather looks ok too. Hope you all have a good one.
kt
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Hello all, very hot here in Palmy.
Sounds like everything went pretty well for you Jo, with a bit of luck maybe no further treatment!.
The eathquake was the biggest one i've ever felt, was staying with a friend in a little cottage on a hilltop in Pohangia. It felt like we were clutching the doorframe for ages, it was a good rattle and some things fell over, but no actual damage fortunately.
Yes, only one more to go!!! Stayed in Palmy this weekend as I have one last one on Monday so not worth going home. As most of the other inmates have gone home I'm mostly here by myself.
Was in the shopping centre yesterday and as my eyebrows are now coming back, decided on a whim to get them shaped then & there. Am 51 and had never had them done properly. the girl led me into this cubicle and then waxed them (thought they would be plucked), quite painful, but it did look good after a couple of hours, once the redness had faded a bit! Sometimes walk around without wig/hat now that my hair is about an inch - still feel a bit naked without.
Planning on having everything sorted tomorrow so after rad can immediately leave and hope to never come back...
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hey everyone
Well I'm back home in Welly again. Was very sad leaving Mt Maunganui - love it up there - the beach, the weather etc.
Woody I bet you are glad to have finished rads now and be back home. Hopefully you aren't suffering too much from after effects - and also not feeling funny now that active treatment is over.
Are you recovering well Jo? Any news on your node status etc.
hope your long weekend off work was good kt. Because I'm not really working at the moment you forget how precious those extra days holiday are. Weather has been good tho so we can't complain.
I had a stunning drive back yesterday - sunny all the way from Tauranga to Wellington and enjoyed the gorgeous scenery. We are lucky NZ is so beautiful - earthquakes and all
Hope you are well too midnight, Shazzakelly, intheclub, Ange, Alyson and Moira?? Hope I haven't left anyone out.
Much love x
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Hi all.
I hope everyone is good...
Yay for finishing rads & being home Woody- hopefully the family are happy to see you & are being super nice
How's Wellington, Kruise?
Midnight- how're you going? Had that op yet?
No news up here, just working & living life... trying to find a flat in Auckland for my daughter & her friends before she starts studying.
Its hot & I'm hiding inside till it cools down.
Take care,
kt
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Hi Kt, yes i had the op yesterday and today i had a bone scan, but have not been told of results yet. it went well. but not really alot said, i am assuming all went well, they usually say it went very well, but all they said, i would get histolgy report in a few days, what ever that is, cells ? felt alot cramping last night, but had panandol they gave to me. Thanks for enquiring. how are you doing?
Woody glad you all finished your rads, did you have any particular doc here or are yours all based in at home, mine Is Claire Hardie. she very good.
Hi Shazzakelly, glad you had a lovely trip home.
Hope you girls are ALL ok. hugs
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Midnight- hope you got good results from your tests. (If you have them yet?)
I just put a post on the flat chested thread- I was looking at breast forms & mx bras on line & I got so annoyed that the models for the bras have real boobs!!!
I'm not going to bother using my funding to get forms & bras, I've decided to embrace being flat & too bad if I look silly or freakish....
There's no way I would ever look like those models again & with no boobs if I lean over you would just see the prostheses, so I'm a cami girl now (hopefully prevents people seeing down to my belly button!)
I hope you all are good (& not grumpy like me right now
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Hi Kt, no results yet, i have to do the diabetes one tomorrow,fasting bloods then follow up to see diabetic nurse when results in. Thanks for asking.
. yea i am not in a fantastic mood either tonight, certain people really make my blood boil. not from these boards, close to home. say no more, or i am likely to explode. lol.
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Hi ladies,
Been reading all your news! Woody that's great that you've finished your rads!
I just had my last surgery - YIPPEE!!! They made a wee nipple (although it's massive and they say it shrinks down), and some nips and tucks on my donor site from where they did the tran flap. So extremely happy to have this done as I just got to the point where I didn't want to be touched anymore by surgeons, I said to my hubby if I could do it all again I probably wouldn't - but then I think I just find it completely overwhelming to look back on!
Kt I've been looking into togs as I'm going to be doing a Encore program with the YMCA in Akl later this month and everyone I saw was a size 10 real boob girl - bloody bollocks!!! Guess I'll be sticking to shorts and singlet!
Love to all,
Ange xxx
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