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Kiwi ladies who need encouragment, but all welcome.

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  • JoTro
    JoTro Member Posts: 25


    Hi Ladies! Sorry I have not been here for a while, periodically checking what's happening. Life is busy again - I got a new job and have had a wee holiday up to the Far North, lovely!

    I am well, getting fitter on the exercycle, on holiday I drank too much to Shazza. Guilty - but kind of fun to be so relaxed.

    Kruise - great to hear results are clear. KT hope you are finding treatments not to much of a pain.

    Happy Pink October everyone! (blagh blagh blagh) This time last year those constant ads on tv were nagging at me to go and get my lump checked. Icky memories.

    xx Jo

  • kt1966
    kt1966 Member Posts: 1,021

    Hey JoTro,

    Good to see you. Sounds like life is going well for you. Hope you enjoy the new job :)

    I got a flyer in the mail today addressed to me about bra fittings & all the nice new bras I could buy :P  Little do they know I have no boobs so no need for bras, I find personal marketing like that so annoying...

    Having a quietish day today as I get tired easily these days, learning to pace myself :)

    Have a good weekend all- wouldn't it be nice to see some more sun like earlier in the week..

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    Lordy this weather is terrible. So much for Spring. I'm cuddled up on the couch with my sons rabbit ignoring my housework. I'm trying to get back some of the fitness I had before I started treatment so started a c25k program I'm have just started week 4 and am fairly despondent about how out of shape I am and how much weight I've put on during the last year. Also my eye lashes which had finally grown back all fell out again as have the few scraggly eye brows I'd got back. 

    Feeling fairly sorry for myself although I know I shouldn't be. Hope everyone else is having a good weekend  

  • kt1966
    kt1966 Member Posts: 1,021

    Hey Shazza-

    this weather doesn't help, it is awful. Windy+++& blustery showers, cold- not much good for anything.

    Curling up on the couch sounds good- have you got a good book or dvd you can watch? Sometimes taking your mind off things is therapeutic :)

    You probably need time out since you're working full-time & dealing with chemo etc- its bound to make anyone feel despondent after a while!

    I feel a bit the same- my energy levels are not what I'd like them to be. Since doing Tongariro I've hardly been out for even an hours walk let alone more. My fitness must be way down. Before starting xeloda I had lost 4kg without trying, now its back on :)

    Sounds like hubby is back with fresh bread for lunch & the paper :) small things give me pleasure

    Have a good weekend

    kt

  • midnight1327
    midnight1327 Member Posts: 1,331

    Hi Girls, wind and weather a real pain down here too,  if i had an umbrella, i could fly.

    Thanks Kt for your message about  mum and dog, he still not home, we dont what has happened to him,  for those who dont  know, we have lost our little foxy terrier, snoopy, we think he was trying to follow us as he has been going with hubby to farm and we has to some bussiness and left him home and he escaped out the cat window, where they come in on wednesday.  Then thursday my mum who has been on blood pressure pills had a dizzy spell and fell and has fractured her pelvis, she in Hospital, they wont let her out til her house  is fitted with some equipment, she is worried about her cat been out, my sister is feeding her, she is only partial to one person and that is mum, is not accepting of others, so hard to get her to come to you, sister left food for her and the cat door open, but who knows that she has eaten it and not another cat, that is not helping mums cause. she fractured same  place as she did four years ago. I am waiting, well offered my services to go up, she in Whangarei and i am down in Palmy North, hours away. just have to wait. as they ok and we are not very wealthy at the moment, i would go by bus when i go, flying  too much for us finacially.

    Shazza, hope your cough goes real soon and KT you just keep relaxing as well.   hope every body ok xxxx

  • nik1966
    nik1966 Member Posts: 402

    Hi

    Thank goodness I found this site.  I am definitely a kiwi lady who needs encouragement!

    I am a 47 (nearly 48) year old ex Wellingtonian living in Howick, Auckland.  I was floored when I was told that I had a large lobular cancer in my left breast.  I had noticed that there had been a slight change in the size of the breast, but both my GP and I were convinced that it was just a large cyst.  I have very dense breast tissue and had previously had a couple of fibroadenomas taken out before (including a 6cm one when I was 19).  It was 6 weeks before I was seen at the Middlemore Hospital breast clinic.  

    The mammogram was clear, but after an ultrasound a core biopsy was taken (not a needle aspiration as I had expected).  Still I didn't think that I had cancer, and trotted off the the clinic to get the results (by myself on the 21st August).  What a whirlwind after that! Mastectomy and axillary dissection on 19 Sept.  I went back to the clinic on Thursday to get the results.  A 13cm cancer with 9 out of 12 lymph nodes testing positive.  I am now waiting for a CT and bone scan before seeing the Oncologists to discuss treatment options and stage.

    I don't know what to expect, I am scared about the treatment. I really
    didn't think that it had spread. I am still sore from the axillary
    dissection, although the mastectomy itself isn't too bad, so I have done a deal with the Surgeon to remove the my right breast after treatment as it contains very dense tissue as well and I am so scared of it showing up in the other breast at some stage.  Not to mention it feels very strange to have a lone soldier just hanging around.  I was encouraged that she said that she would do it for me - means that she thinks its worth it.

    I don't know anyone else in my situation, and don't really know what to say when friends and family say "you'll be alright".  I am trying to keep it together for my husband and 2 teenagers, but it's those pesky, persistent middle of the night thoughts which are doing my head in.  I kind of feel that I am part of the Amazing Race, but each check-in provides more bad news :-(

    Thanks for listening :-)

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Kiwi1966

    (we're nearly the same age, I'm 48) Welcome! Sorry you have to join the club, but this site is great for information & comraderie.

    I wish I had found it when I was first diagnosed (11 years ago) but I managed to find it 3 years ago when I was looking for info.

    It is very frightening at first especially when you have diagnosis then treatment so quickly- good to deal to it, but a lot to take in etc! Things will settle down & once you have an ongoing treatment plan in place you will feel better.

    I hope your scans come back clear :)  but even if they don't there are treatments available & its not the end of the world (as much as it feels like it might be).

    I have 2 teenagers too, they were 6 & 8 when I was first diagnosed. They are good at keeping you grounded & living in the present :) Try not to second guess too much & just deal with things as they come up. (easier said than done I know)

    I had the same issues as you- a lump, didn't show on mammo- did slightly on US, they did a lumpectomy but didn't get clear margins so I had a mastectomy. I just had the other one removed too- no regrets it's quite nice being flat & not having to wear a bra :) I tend to wear patterned or gathered tops, sometimes just plain tops & its fine.

    Anyway, nice to meet you. Keep us in the loop & we'll be here to support you virtually!

    All the best,

    kt

  • kt1966
    kt1966 Member Posts: 1,021

    Midnight,

    Sorry your wee dog hasn't turned up :(

    Someone may have 'adopted' him and he's ok...

    I hope your mum is doing ok. Hard to be so far away. Hopefully she'll be home soon.

    Hope you & your hubby are well, thinking of you

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    Hi Kiwi1966, welcome to our little group. so sorry you have to join us. A Breast Cancer diagnosis really floors you at the beginning but things settle down over time. There is a lot of different information and support on this site as I'm sure you've seen.

    I was diagnosed Stage 4 a year ago and apart from weekly chemo and a certain amount of uncertainty life goes on as normal.

    Let us know how it goes with your oncologist appointment and what the plan of attack is. It's a small group of Kiwi girls but we are all here for each other. 

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi Kiwi 1966 you are not alone and we all know how you are feeling and what you are going through. There aren't many of us Lobular ladies either. If you go into the ILC sites on here you will learn a lot. Everyone on these boards is just so lovely and I think it really helps to know you are not alone. I live in Ararimu (by Bombay) and work in East Tamaki so pretty close to you. I am on my own now but do have a 19 year old and 21 year old who still live with me, even though they are hardly ever home. It's 6 months down the track for me and treatment has ended other than the drugs, but I still can't believe I had breast cancer. Can't wait for this horrible year to be over. Your story sounds a bit like mine, my cancer wasn't picked up by mammogram either, even though I knew something was going on. I thought it was normal to have a slight size difference in boobs, just like men often have one nut bigger than the other hahaha, or one foot bigger than the other. Little did I know :(

  • nik1966
    nik1966 Member Posts: 402

    Thank you so much for your replies Ladies.  I was encouraged by your messages :-).  I am so pleased that I found you.  I was told not to google stuff too much - but in this case it worked out for me.

    How did you cope with the chemotherapy, were you able to work while going though it?  I am lucky and work from home which means that I can pretty much suit myself when I work, but I do have to work.  I would like my job to be around once I finish treatment.  The hospital has said that I probably won't start treatment for about 6 weeks, so I don't know when I will see the Oncologist or have the scans, but the sooner the better for me.  My surgeon said that they will "get out the big guns", I suppose that means that things will start as soon as they can.

    I am having quite a bit of pain from the axillary dissection, does this get better?

    Fizzdon52, I live in Botany so definitely not far from where you work. Like you, I also still can't believe that I could possibly have breast cancer.

    Wow KT1966, you were so young when you were diagnosed - it must have been difficult with such young children, just having the headspace to deal with their needs.

    Shazzakelly, how long will your chemo go on for and how has it affected you?

    Loving your support :-) :-)

  • shazzakelly
    shazzakelly Member Posts: 620

    Kiwi as I'm stage 4 im on forever chemo. I will contine treatment for as long as it works for then change to something else. The upside to this is that because of the quality of life issues and the fact that there is no cure for stage 4 we tend to get the easy to tolerate regimes. I still work although now 4 days a week. I'm a single mum with 3 teenagers so life is busy. I don't have the energy or the eye brows I used to but life is still pretty good. Taxol has been much kinder to me than to most people. I've been on it a year which is certainly an Auckland hospital record. 

  • kt1966
    kt1966 Member Posts: 1,021

     Well done, Shazza-taxol record holder!

    I'm at auckland hospital- just had onc appt- everything shrinking except L1/L2. So I will be starting palmindronate (sp?) infusions every 6 weeks to help my poor bones. There is also talk of increasing the dosage of xeloda (which I am waiting for now- oral chemo to take home with me).  

    Kiwi1966, I'm on forever treatment as well as I became stage IV in July. 

    Back in 2003 I had AC chemo which hit me hard for a few days afterwards but so long as you keep up with anti-nausea meds it is doable. These days there are good drugs to help with side effects. Losing my hair was the least of my worries. And the kids were great at getting me moving & thinking of more than just me ;)

    I'm just working 2 days a week most weeks- it's enough. 

    You will feel better when your plan is in place- hope you get your appts soon :)

    Have a nice day all

    kt

  • fizzdon52
    fizzdon52 Member Posts: 382

    kiwi1966 the worst pain for me was the lymph node Incision. They didn't sew mine up properly, it leaked constantly then I got a huge golf ball like swelling and despite calling the Breast Care Team at the Manukau Super Clinic who told me not to worry, it burst. I ended up at Middlemore on antibiotics because I got cellulitis. That was the worst thing for me, apart from the shock, was the horrible and weird pains from that incision. Even after 6 months it still bothers me. I didn't have chemo either, because it wasn't in my Lymph Nodes. Are you going private or through the public health system? From what I've heard some of the ladies on here have a lovely Oncologist called Rueben??? I wish I had him. I don't like the Oncologist I got. I go to the Botany Super Clinic now when I have to see my Oncologist because it's so close to where I work. Who knows I might bump into you there one day. Good luck with everything.

  • kt1966
    kt1966 Member Posts: 1,021

    Doesn't sound fun Fizzdon, I hope it settles soon.

    It does take a while to bounce back after surgery, but you'll soon be comfortable.

    You too Kiwi1966, faster for you if no complications :)

    The last couple of appointments I've seen one of Reuben's registrars, Naera, & she's lovely.

    Home at last now, pick my daughter up from tech & did a bit of a shop.

    Catch you later

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    KT Naera is lovely isn't she. Although she'll be off to have that baby soon. They are all nice there really.  The Chemo girls are great.  We are so lucky with the care we get. 

  • nik1966
    nik1966 Member Posts: 402

    I am going through the public system, and have been lucky to have been dealt with so quickly.  I am hoping that the other scans will be just as quick.  It's the waiting that does my head in.  Fizzdon, I will probably see you at Botany sometime, as it is just across the road from me. The Breast Nurse at the superclinic said that Oncologists can be a little clinical and pessimistic, I am hoping that I get someone who is as positive as I am trying to be.

    You ladies have been awesome for me - no one else gets it, and I can't expect them to.  My husband isn't very good at dealing with illness, and I think would like to crawl under the covers :-)

  • shazzakelly
    shazzakelly Member Posts: 620

    Kiwi1966  I'm going through the public system at Auckland so I don't know much about how it works down in South Auckland but I think we are very lucky with care we get in the main centres. I have found the oncologists here pretty positive.

    I'm currently sitting in the chair waiting for chemo number 53 to arrive then off to work. Hope everyone is having a good day. 

  • fizzdon52
    fizzdon52 Member Posts: 382

    I don't like the Oncologist I got at all and would love to change to Rueben, he sounds lovely. I got a big fright yesterday and am still trying to calm down. I was put on Zoladex to stop my hormones from working so I could go on Femara. They refused to take my ovaries out (probably trying to save money). Anyway no-one has ever checked my hormones levels since my diagnoses which I think is a bit strange. So I had a blood test to check my cholesterol levels and I asked them to check to see if I was in menopause and I got a call from the nurse yesterday to say I wasn't in menopause. I totally freaked out and rang the BC nurse. She organised another blood test. It's possible that the medication I've been on for the past 6 months to stop the cancer from coming back isn't working. I found it very hard to concentrate at work after finding that out. But do you see what I mean about the Oncologist, wouldn't you think they would have checked this out??? Shouldn't it be normal procedure to check this kind of stuff. I don't know maybe it's just me :(.........

  • fizzdon52
    fizzdon52 Member Posts: 382

    Something else Kiwi1966, when you meet with your Oncologist (or any Doctor really), make sure you take notes. Preferably take someone with you who can take notes. If you husband isn't very good at dealing with illness, take him so you can hold each other hands, but get someone else that you really trust to take notes for you. Chances are you and your husband won't be thinking straight at the moment, you may not take everything in and it's really important to know everything you can about your cancer and treatment options.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all, 

    hope your chemo#53 went well Shazza :)

    Hope your scans get done quickly too, Kiwi1966, & that you get a nice onc.

    Fizzdon, I was on zoldaex & femara for 3 years, I don't remember having bloodtests re menopause...but Reuben did say that its good to keep your ovaries because the produce androgens & other things to help your body as you age etc. Z & femara are powerful - they kept me good for 3 years, hopefully longer (ie forever!) for you :)

     I'm recovering after work, then I've got to collect my DD from Albany- yawn, just want to chill out  ;(

    kt

  • fizzdon52
    fizzdon52 Member Posts: 382

    I'm coming back as a man next time!!!

  • kt1966
    kt1966 Member Posts: 1,021

    Hah! I don't have the energy to come back!

    My eyes are sooo tired....  :(

    kt

  • nik1966
    nik1966 Member Posts: 402

    Got my CT scan date - 20th of this month.  A bit scared of what they might find.  No word on when the bone scan will be.

    Thanks for the advice Fizzdon.  I will take an extra positive person with me or maybe record it.  Good luck with your next blood test.

    Shazza, apparently Counties Manukau contract their Oncology services out to ADHB, so all our treatment is done at Auckland Hospital as well.  I am really hopeful of getting someone that I feel comfortable with.

    It's so nice that that dreadful wind has gone now.  It looks like a beautiful day :-)

  • kt1966
    kt1966 Member Posts: 1,021

    Great, Kiwi1966.

    In my experience the not knowing & wondering what might be is worse than actually knowing exactly where you are at.

    Hope the CT is clear & your bone scan is not too far away  :)

    Yep, definitely nice today than yesterday- getting a bit cloudy now tho. It would be nice to have a decent stretch of sunny weather, but I'll take what I can get...

    Finished work for the day, phew, becos I wasn't feeling too hot today, for some reason my eyes are sore & tired & I had a bit of nausea, thank goodness for drugs :)

    Have a good one

    kt

  • midnight1327
    midnight1327 Member Posts: 1,331

    I would like to know how you lovely ladies get on with things like getting the flu injection, i mean it does not cover all strains of it and when you on chemo, what happens then? they inject flu into you and if you dont get it, you could get flu and alot worse.  i get mine free with the diabetes.  but i dont normally get injection as i get the flu all the time when i do have it.

    They put me on a new pill that lowers my blood sugar, by making the pancreas work harder to produce more insulin and it can also drop the blood sugars low and i have to eat six small meals a day to keep sugars up, but i am too scared to take it as it can take you into the low side that makes you feel awful and dizzy etc. i got them monday, have not taken one yet, am sick of pills. if hubby not around and i take one and fall over, i could be laying there for ages, i am very clumsy normally. i had a spill other week, over the hose and got a big sore on knee. so been dizzy, will be more awful if i fall.  i dont know what to do. i have jelly beans here if i have a sudden drop in blood sugar.

  • JoTro
    JoTro Member Posts: 25

    Hi Kiwi1966

    My feelings on what other people say to you about cancer;

    They have no idea what to say and can't imagine themselves in the same boat so they say things like "as long as you keep positive" (why? what will happen if I'm a bit negative? lol)

    At least you will get a free Brazilian???

    Heart attacks are worse than cancer.

    These comments can hurt but just say thanks and then come here and let it all out, this place is truly safe and honest and super supportive. We are all at different stages and places but we all totally get it.

  • kt1966
    kt1966 Member Posts: 1,021

    hi midnight,

    I've never had a flu injection even tho I've qualified for free ones for a few years now. 

    I don't know what sort reaction I'd get. 

    I know what you mean about pills, I getting tired of them too- but I guess the drs know what they're doing, a bit scary for you tho. 

    Well hope everyone has had a good day, night night

    kt

  • shazzakelly
    shazzakelly Member Posts: 620

    I've never had a flu shot. Not sure I've ever had the flu either. I'm joining the completely exhausted club. We have been so busy at work and I'm not getting home till nearly 8 at night. By the time we've done dinner I'm dead on my feet. Still a rostered day off for me tomorrow and then a long day Friday and a short 5 hour shift Saturday. I've also got a good friends 50th on Saturday. One of my goals when I found out I had stage 4 was to live long enough to have a 50th and be well enough to enjoy it. 1 year in I'm pretty sure that will happen. 

  • kt1966
    kt1966 Member Posts: 1,021

    Enjoy your day off, Shazza. Make sure you take it easy & recharge your batteries!

    I have a day off too, thank goodness. I've been feeling a bit crappy- not sure if I've got a bug or if it's the meds. So I'm going to read my book in bed for a bit then have a quiet day so I can manage work tomorrow. 

    Hope everyone else is well

    kt

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