Kiwi ladies who need encouragment, but all welcome.
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Apart from seeing KTs smiling face which was great.I didn't think much of chemo today. After over 80 infusions I finally had one in my hand as my port is out of action another week. My hand and I are hoping it doesn't need to be used again.
We are flying down to Napier tomorrow morning and the funeral is at 1 but I still don't know where as my step mother is being difficult. Families aye, "Big Sigh"
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Shazza - sorry to hear you're going through such a tough time. Sending hugs.
Terre
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Just passing on my condolences to you too Shazza on your Dads passing. Hopefully you find out where it is without too much more hassle. It should be a good day flying as the weather meant to be nice - cold but sunny and clear!
I'm working on ambulance in Palmerston North tomorrow and Feilding on Friday.
Hope everyone ok - and you all keeping warm and well!!
K x
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Hi Kruise
Hope work went well. How's the flooded areas looking now?Friday again at last. Hope you all have a great weekend.
I'm feeling pretty ok on taxol. No real side effects apart from fatigue. I don't seem to get the steroid high people talk about- apart from finding it harder to get to sleep the night of the infusion. Phew.
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Pleased to hear that the taxol is, so far, doable for you KT. Hope you have a restful weekend.
I have my niece and her boyfriend up for the weekend from Wellington. I love her but she totally turns my house upside down as soon as she steps foot in the door!
Seems to be a lot of BC around at the moment. My husbands boss's wife has just been diagnosed. Oh how I remember those first few months before I got my treatment started (after my mastectomy). I remember you all said that it would get better and it has.
Hope the funeral went well Shazza. Nice to see you Kruise :-)
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Hey Donna. Hope your procedure went ok on Wednesday?
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This is Goldie having sunday arvo cuddle with Hubby ron. lol she a big lass
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Awwww...love the pic of Goldie and your hubby.
Just beautiful.0 -
Hehe, Ron is swamped!!
It's bad enough having a fluffy cat
Did you see the immunotherapy on 3D? Would be nice to be on that instead of chemo.... Shame it's so expensive for a lot of drugs.
Hope you all had a good weekend. Mine was ok but for some reason I have been grumpy today. I guess I'd like some more good, fun stuff to happen
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Hello Kiwis, I hope you don't mind me posting a message on your thread. I may be spending half the year in NZ every year with my Kiwi partner, and I was wondering what you think of the medical system there. Is there a good oncologist and medical center on the south island, or do I have to go to Auckland? Is NZ up on all the latest breast cancer care?
Thank you kindly!
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Hi guys, sounds like everyone is doing well. Love that big fluffy photo of Goldie Midnight, I have a Black Lab and he's the love of my life but getting old now. My endoscopy procedure went well thanks Nicki. The Dr said there is no sign of cancer or anything sinister, but apparently I have a narrowing or some kind of blockage which he wants to see me in a few weeks about. I was kind of out of it and asked him 3 times what it was but he had an accent and I couldn't understand what he was saying and neither could my daughter. In fact he got annoyed with me for asking which p.....sed me off a bit! So I guess I will find out at the appointment if they can do anything for it. It's really annoying because when I am in bed at night I constantly have to swallow and feel like I am drowning. I can't swallow food properly and pills get caught in my throat and taste revolting when they dissolve. Hi katcar0001 it's nice to meet you. I'm probably not the best person to talk about our medical system about, I'm still angry that they missed my cancer. I personally don't think we have as good a medical system as a lot of people say. We have a poorer survival rate than other similar countries, in fact it's 20% poorer which I feel is significant. It's all about saving money in this country and I think it's because our medical is free. Also Doctors can't get sued over here so if they make a mistake it doesn't really matter! I'm sure other people will jump in here and disagree with me which is fine. However as you are not a New Zealander you will have to pay, so maybe they will look after you better. We do have good private Breast Clinics over here but I am not in a financial position to go to those. There will be a good Oncologist in the South Island, you won't have to come up to Auckland to see one. I'm not sure if we are up to date with breast care, hopefully others will let you know. Good luck and welcome to New Zealand
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Fizzdon, Thanks so much for your response regarding the medical system in NZ. I appreciate you doing so when you've been recovering from an endoscopy (hate those), and you are having trouble swallowing. That drowning feeling as you described sounds scary! I am so glad there was nothing sinister in there. To me, the NZ system sounds a bit like Mexico, although I loved my surgeon. It's a mixed bag here. I am a bit stunned by the survival rates in NZ, though. I wonder how much of that is because people got diagnosed too late, as I wouldn't think the standard of care for early stage would be all that different. I did, however, read a book recently where the doctor lamented that NZ doctors were not practicing neo-adjuvant chemo to shrink tumors prior to surgery. Well, I guess it just remains to be seen, esp. since paying out of pocket. I will be in Mexico part time and NZ the rest of the time, so I'll find out who does what best and work with that. In the meantime, still hoping to get a referral to an oncologist in the south island. Thanks bunches, and I hope your issues improve. BTW, my friend and my grandmother both had to get their esophagus' stretched? I guess that's how you'd describe it. Apparently, narrowing of the esophagus is another thing that can happen as we age. Thanks for the welcome, although I am not quite there yet ;-).
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Hi Katcar, and welcome (at least part-time) to New Zealand! Where on the South Island will you be based? I had the most amazingly wonderful incredibly GP in Christchurch. When I moved to Wellington, he told me I'd never get that level of care again, and he was so right.
I was horrified at the treatment for my Stage I follow up that I got in Christchurch. I finally got to see a breast specialist, who sent a very young fresh out of university person in to see me (never saw the specialist). The young lady asked me if I remembered if I'd had surgery. Well, half my boob is missing; I pretty much remember having it sliced and diced. Then she asked me if I remembered whether I'd had chemo. And radiation. She clearly thought that because I was over 50, I must be senile. I got somewhat better care in Wellington, until I finished Tamoxifin. Then they booted me out of the system, despite my being pre-menopausal and still very hormonal (with ER/PR+ cancer). They refused to continue me on tamoxifin, which is a large part of why I think I'm Stage IV now. It took forever to be dx with Stage IV, despite repeated appointments, and my oncologist in Wellington was a joke. Yes, I am being harsh. And yes, I am angry. I am now with a world-class oncologist in Palmerston North. I found out about him from the cancer nurse (who has moved on, but is an absolute star), paid for an appointment out of pocket, and he agreed to take me on as a patient.
So my message is - there are good doctors here. You have to make an effort (and perhaps go out of pocket) to find them. The nurses here are more heads up than the doctors in many instances, so liaise with the cancer society (you have to contact them) and the cancer nurse for the area. They can help steer you to the right doctors. Also, you really have to be your own advocate.
I don't say this much very often; I am from the US and I don't want to sound like an obnoxious whining American, but compared to the US (where I admittedly had wonderful health insurance), the standard here is quite low with regard to routine scans, proactive treatment, etc. So, be your own advocate, educate yourself and be demanding, and you're much more likely to get good care.
I'll also ask around some of my South Island friends about good doctors if you let me know where you're going to be.
Hugs,
Terre
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Terre - Oh my, you have been through the wringer. I am h o r r i f i e d at you you were treated. At least in Mexico, one can walk into any pharmacy and get Tamoxifen without a prescription. I read through some of your earlier posts, and that doc who recommended you get set up for hospice was beastly. I am so sorry you went through that. And you sound so strong. I would have been a blithering mess.
I assume we will be near Tasman Bay as my partner grew up in Nelson. He has a boat moored there, so we'd probably stay there for a bit before finding a place on land, or we will stay with family in Nelson temporarily. I guess getting to Palmerston North would not be that difficult? Or if your friends know of a good onc closer to Nelson, that would be great.
Do you mind if I ask how you know you're still premenopausal? My periods stopped on Tamoxifen, and I am not having any hot flashes--just mild joint pain and pain/swelling in one of my finger joints. I had a blood test recently that showed very high circulating estradiol, which concerned me hugely, but I have heard that Tamoxifen can cause this and not to worry. I cannot not worry. None of my docs will put me on ovarian suppression because of studies that show it is more effective for women under 35. I am 51.
Thank you so so much for sharing your experiences and for your recommendations. I will take all your and Fizzdon's advise.
Hugs to you,
Kat
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Hi Katcar - my sister-in-law (one of many) and a good friend live in Nelson. And I have a friend in Blenheim who has lost both parents to cancer (not BC), but who knows the system in the area, so happy to ask them who/what they recommend.
If you have insurance, you can potentially go to Palmerston North. The problem is that everything is funded through District Health Boards (DHB). We live in Te Horo, north of Wellington. So while we're actually closer to Welly than to Palmy, we're in the Mid-Central DHB, not Welly DHB. So, we get sent to Palmy. Note that we did this on purpose so I could tap into my amazing oncologist. At any rate, unless you're insured or paying your own way, you have to pretty much stay in the district that funds you.
I knew I was premenopausal because my periods never stopped. Ever. Finally got them stopped when I was dx with Stage IV by Zoladex injections and then it still took six months for my blood chemistry to say I was menopausal. I am 60 (for two weeks now!). My mother's periods stopped when she was 62 and my grandmother's at 68. So it's kind of a family thing. I wish I'd known about Zoladex sooner; I would have argued to get them stopped much earlier.
And trust me, I definitely have my "blithering mess" days. But I decided I could live in blithering mess (that really captures it!) state or be as happy and positive as possible. So I chose the latter. For the most part. Had a mini melt-down in April, fought some rather nasty depression for a couple of months, but back to even keel again.
Welcome to New Zealand, by the way! Who knows - I plan to come down to the Nelson area in the spring to visit friends, so maybe we can get a cuppa. Or a glass of fine Marlborough wine!
Hugs to all,
Terre
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Hi Tere, was that the breast cancer nurse in Palmy, Cheryl Mcdonald, is she gone now or is it some other nurse, I had the doctor Claire Hardie in Palmy, but now she has left and I have this other dude I am seeing on 8th, I stopped my tamoxifen as I am sick of feeling about ninety and so its a pill review. honestly I get about like I was an old lady instead of 53. My doctor said, I cannot be on nothing indefinitely, otherwise other bigger issues will return. hope they find something my dickey system can accept. This other doc has a very foreign name and I cannot pronounce it, glad the receptionist knew how to say it lol.
I find it apauling that you were asked whether you remember these procedures being done, how rude man, as if you were some kind of idiot who cant remember the time of day, how insulting. These young ones think once u over forty mark you over the hill. I worked in rest homes all my working life and my mum and I caregived her mum and dad, and I would tell grandma about the poor old darlings I used to work with, and she was 96 and they would be in there 80's and she would say poor old dear. she was very arthritic and had congestive failure, but very on to it, she died at 98, 2000. she brought many laughs to the house hold. she always said, my body is elderly, but my mind is young. anyway sorry to rave on.0 -
Hi Katcar. Welcome to the kiwi thread
I find health care ok here. If you need treatment they are usually on to it pretty quickly, but it does pay to be your own advocate.
Hi midnight. I hope you find a med that works better for you.
I'm having my 3rd taxol today. I'm feeling a bit woozy right now from the premeds. My daughter is with me & we're planning to go to lunch & shopping afterwards. Hope I'm less woozy then
Hope you're all having a good day.
(Good you had good results from your endoscopy Donna - apart from the narrowing)
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Midnight - I had Jane, the cancer nurse who moved to Lower Hutt. Not sure who it is now; poor lady keeps calling me and I'm in meetings or on an airplane.
I go to Richard Isaacs; he's amazing. I love him. He's so positive, an advocate for his patients, and keeps up on things. I love that he goes to the cancer conferences world-wide. He helps me stay positive and continue to fight against this disease.My grandma did the New York Times crossword puzzle (in ink) every day until 2 weeks before she died at 98. Sharp as a tack. Bit of arthritis. She chose to not have a cyst treated and developed blood poisoning. She knew that would happen, but chose that way out - she had survived her children, friends, husband, etc., and was just over it, I think. At any rate, she was not a "poor old dear" in any sense of the word. And if you thought otherwise, she was quick to correct you!
I think the health care here is ok;it's just highly variable depending on who you get and where you live.
Hugs to all,
Terre
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Hi Katcar. Nice to see you here.
I have been pleasantly surprised at the level of care I have had since diagnosis 10 months ago. I was offered neo-adjuvant chemo because my ILC tumour was 13cm. Instead I opted to have a mastectomy immediately - this was done within 3 weeks of finding out I had BC. I will be having my right breast removed Prophylactically sometime in the next 6 weeks. Although I am on a non urgent waiting list for this next surgery, I apparently will not be waiting more that 4 months from 21 April. Not bad service. A good friend of mine is a Nurse Practitioner in San Diego, and she's been impressed with our system. I'm not saying that it's perfect by any stretch of the imagination, but it has served and continues to serve ME well. The best thing you can do is have is an awesome GP.
I've been at Oncology this afternoon seeing the beautiful Rosalie. She and I agreed together to carry on with the Zoladex/Exemestane medication for another 3 months to see if the SE's lessen as my body gets used to the lack to estrogen. Shesaid that she knew the regime would be tough, but the 1-2% improvement in recurrance odds was worth shooting for. Ultimately it was up to me though, I am going to give it another try. These joint aches are difficult to get around though.
Turns out that they found bronchitis on my chest x-ray which is why I was SOB. Funnily enough, my breathing improved once my cold kicked in, so nothing to do with the hormone medication. and nor was it in my head!
KT I hope that you managed to have a nice lunch with your daughter. Glad to hear that your surgery went well Donna, and that everyone else is OK.
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Shazza, how on earth do you go to work after treatment? I'm absolutely stuffed afterwards! Maybe I'll get used to it?
Hope you had a good afternoon.
I hope you get used to your regimen too Nikki. I had a nice lunch & even bought a few clothes on sale (maybe that's why I'm so tired...)
Night
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Terre - I do have expat insurance, so I can go pretty much where I want. Once I get there, I can suss out the situation, and figure out if I want to stay in the district or not. Your friend in Blenheim may be a very helpful resource.
It's amazing to me that you are still premenopausal. My mother died when she was 34, so I don't have much to go on other than my grandmother and my aunts. But my grandmother was on Premarin (still is) and never really went through any menopausal symptoms. I think her periods stopped around 52? Same with my aunt. My estrogen levels are so high, I wish I could go on ovarian suppression. I haven't been able to convince docs in either Mexico or CA. I guess they know best :-(.
You have chosen the path that I am trying to keep on--which is that we have a choice to try to be as happy and positive as possible or not. I just had the best vacation of my life. I chose not to let anything bother me or get me down. It was wonderful. I am glad to hear you're on an even keel now--depression is no picnic. I would really enjoy getting together for a cup of fine wine! I do allow myself one here and there. I know we are coming in November but I have no idea the duration.
Nik and Kt1- Thank you also for your welcome and insights. Nik, it's encouraging to see you were offered neoadjuvant therapy prior to surgery. I can understand why you opted to go straight to a MX. I had no choice in that decision. I hope you get some relief from the aches and pains on your current regimen.
Thanks all for the warm welcome!
Hugs, Kathleen
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KT it was nice to see you at chemo yesterday. I didn't go back to working on chemo day for quite a while, I think my body just got used to it. Having said that I used to walk 8ks every day and I hardly have the energy to walk a couple of times a week now. I'm always shattered when I get home from work at 7:30.
Katcar welcome to the group. I'm in Auckland so can't really help you with a South Island oncologist. I have been in and out of the cancer system here since 1999 and don't have to many complaints but we need to remember that a country with 4million people offering mostly free health care is not going to be in the position of offering all the meds and treatments we might like.
My fathers funeral went ok in the end. I'm not really sure it was what he would have really wanted but it is what it is.
Hoping everyone is going ok. I'm still in bed and really need to swing into action.
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I was at Oncology yesterday afternoon - I did think of sneaking into the chemo rooms to see if I could see anyone familiar, but I figured you'd be done and dusted by 1.30. Hope you're feeling ok Shazza and KT.
Shazza, we had a similar experience with my FIL's funeral 2 years ago. I definitely don't think that it was what he'd have wanted but ultimately his new wife and (her) children called the shots. My husband and his two sisters merely participated, which I think was difficult for them, but it was what it was.
It's one of those dreary winter days - thank goodness I haven't had to go anywhere
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Would have been nice to see you, Nikki
I was done at 1:30ish, just...I don't know if I'm going to lose my hair on this - it seems to be still hanging in there. I forgot to take my domperidone at lunch, so am just feeling a little nauseous. Not long till my dinnertime one. Just me & my son home tonight, so easy soup & pizza for dinner
Had a nice walk on the beach with my daughter earlier, cold wind, but the sun managed to shine.
Have a good night
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Hi Midnight,
Claire Hardie has not left Palmy - I had an appointment with her this morning - the team come up to New Plymouth every few weeks. I finished radiation in Palmy about 6 weeks ago, and have now been signed out of her care, and back to my Medical Oncologist, Malcolm Anderson. Claire is lovely, but I don't have much rapport with Dr Anderson.
I am now on 3 monthly visits with him, first one was 2 week ago. He said there's no point in sending me for a scan before the end of the year, as the Tamoxifen won't have started to work yet - is this true?? The 2 mets in my hip were quite small when found after surgery, and I have not had any chemo, but isn't that an awfully long time to wait to see if the drug I am on is working? My blood tests showed everything normal (blood counts, calcium levels, tumour markers) but no-one has scanned anything since February.
I feel like I have been cast adrift - "don't come back until you start having symptoms" isn't very encouraging. If I wasn't Stage 4 I wouldn't be so clingy, but a blood test in September and a scan at Xmas don't sound like much monitoring to me.
Or should I just forget I have metastatic cancer and carry on as normal - whatever that is!
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Hi Sue.
I've been having scans 3 monthly, or thereabouts. Maybe it's because your cancer is grade 1, so it's indolent?
I don't know. Could you get a second opinion just to set your mind at ease. May even be worth paying for it privately (usually costs in the vicinity of $200ish).
If you're feeling well, with no symptoms, try & enjoy it
Sometimes easier said than done I know. So it is important that you are confident in your medical team. Hope you can sort it soon.
Ps I'm having weekly (& sometimes twice a week appts at the mo, so the opposite problem! It'd be nice to have a happy medium....maybe once I've been on this chemo a bit longer
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Hi Suems,
I don't go back to my MO for six months either, but my scan in Feb was clear and my blood work is fine. So basically, I was told the same thing by Dr Isaacs (who I totally trust and have good rapport with) - call if you have problems or anything new, otherwise, see you in six months. With Stage IV, they basically watch and wait. I don't know about how long it takes for Tamoxifin to kick in, but I do know that scans every six months to a year is not uncommon here. I had some bizarre pains and got a bone scan after 6 months, and it was Femara side effects and arthritis, no cancer.
It is hard to wrap your mind around that they're not more aggressive, but I've been stable for 2.5 years on Femara and am classified as in "partial remission" and stable.
Off to Auckland for two days of meetings. Should be good - they're bringing in everyone from the "outlier" offices, so I'll get to meet people from other offices. And I get to see Oscar, my Auckland boyfriend. He's a huntaway mix and we are deeply in love.
Hugs to all,
Terre
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Just thought I would put this out there. The Breast Cancer Foundation are providing 3 free counselling sessions for anyone who has been diagnosed with BC. All the information is on their website, including a form to download and get signed by your breast nurse or GP. My friends little company Stratos is co-ordinating it on a national basis.
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Thanks Niki I've thought for a while I could do with this service. It's just really hard when you work full time. I might see if they have any after hours appointments. Thanks for putting that on here. Hope everyone is doing well. Donna xxx
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Donna, I was offered counselling through the Cancer Society (for coming to terms with my stage 3 diagnosis, and moving on from that), but it was in town and I really need to be at my desk as much as possible during the week. These midweek appointments really mess with me because if I don't work I don't get paid. This counselling is local and I think (in some cases) available outside of business hours. I have my voucher number, and really need to get on with booking it, although mostly I think I am doing OK. Dependent teenagers are a leveler.
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