Kiwi ladies who need encouragment, but all welcome.
Comments
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I had to smile, midnight, you have Tequila for your screen saver...
He's our youngest alpaca, that's his mum looking at the cat.
The alpacas are in good nick- a bit fat if anything! They love rolling in the dust & long grass & rubbing themselves on fences after shearing to get rid of those short hairs that get left behind.
Take care all
kt0 -
he makes a lovely screen saver. lol too. kt
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hi all. Taxol number 10 for me today. It's getting quicker each time. I'm in and out in 2 hours. No real side effects so they are going to keep me on it for as long as possible, so that's weekly trips to the hospital for me indefinitely. Still it seems to be keeping the spread at bay so I won't complain. They are going to try and get me in for a CT scan before Christmas to see how things are going but my last chest X-Ray was clear and I had multiple lung mets before we started so it definitely appears to be working.
Hope everyone else is doing well. With the sunny weather I'm feeling so much more positive and have been doing lots of walking. I'm getting the most out of my Buff head wear as it has UV protection for that bald noggin of mind.
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Hi Shazza
I'm glad the taxol treatments are going well & working with minimum SEs.
Yay for clear scans.
I hope the CT before Christmas is clear too!
Sure has been warm- and humid up our way. Seems way earlier than normal. We could do with some rain as its getting a bit dry. I think there's supposed to be some this weekend.
Hope you are all having a good week
kt0 -
hi everyone
Gorgeous pics of the alpacas.
ShazzaKelly great the taxol is going well for you thus far and keeping things at bay. You must be feeling good if you are out walking so that is good the side effects aren't too major.
I haven't logged on here for a while. Been busy trying some different things - like acupuncture. I was very achy after finishing rads. Seem a lot better now. Still haven't started tamoxifen. Have started a sugar free dairy free diet though under supervision from my naturopath so it's going to be very hard for me - but I am motivated. Detoxing, losing weight and feeling better are my number one priority now that treatment has finished.
I also went and treated myself to an eyebrow shape, and eyelash tint today now that my eyebrows have grown back in. Feels good to do some nice 'girly' things like that.
Have also taken up my scrap booking hobby again - so getting creative.
Housework badly needs doing though.0 -
Hey ladies,
Been off for a while!
I have eyebrows coming in - yahooooooooo, they're growing in quite low - eek hope i don't get hairy eyeballs!
How is everyone going with treatment, life after treatment - hope everyone's doing ok
xox0 -
Hooray for eyebrows!
I hope everyone is well & busy with life. I can't believe its almost December, scary...
I'm hoping it chucks it down with rain soon- its been so humid & we were promised rain today. It has been quite dry previously so the water tanks & paddocks could do with a top up.
I managed to get some gardening in & limed a paddock- so I really want that rain!
(Just so long as it doesn't rain when I'm working tomorrow don't ask for much do I?)
My chest is feeling so good 7 weeks out. It's hard to remember how uncomfortable it was, & I'm loving going flat whenever I want! Its sooo good not to be lop-sided!
Take care,
kt0 -
So pleased everyone seems to be doing well.
My CAT scan OK but have to have more tests because nodules and strange thing on thyroid getting bigger. Not sure when that will be .
I am off to Sydney on Friday to meet everyone, getting quite excited - will keep you posted.
Big big hugs.0 -
hope you have a great time Alyson. Can't wait to hear how it went.
I have a CT scan on Monday to see how everything is going. As there is quite a waiting list at Auckland I'm having mine done at Starship. I hope the gowns are big enough.
Hope everyone is going well. Nearly December I really need to get into Christmas mode0 -
Hi ladies -
Alyson have a great time in Sydney. Try not to worry about your thyroid etc while you are away - enjoy the moment!
Kt - excellent that your chest is feeling great now and you are loving it. Amazing how quickly 7 weeks goes eh?! I'm sure you'll have rain. Looks like most of North Island was going to cop it. I'm in Tauranga this week - and really wanted hot sunny weather but it's been overcast and warm with showers but today it's raining well and truly.
Shazzakelly - good luck for the scan on Monday. Let's hope that taxol has been doing its job.
And Ange - the eyebrows will come right. I just let mine grow and they were super bushy but it was great to get them shaped the other day. You won't be far away from that either. I presume your eyelashes are coming back in too.
My 'no sugar no diary' super hard diet is going good - one week down. It's hard going out to eat (as I've had to do up here in Tauranga a couple times) but I try to just have a salad with dressing on the side. Boring I know - but gotta keep going while I'm motivated. Have also done some walks up here round the Mt and down the beach. Will be back in just over 3 weeks for Christmas. It has come around too quickly for sure - what a year!
Love to all
K x0 -
Hi ladies
been awhile since I posted anything. Sounds like you are all ticking over pretty good....My hair is sort of coming back, but I'm not so excited about it, mostly grey and still quite sparse, but more than my ork head before. Eyebrows & lashes pretty thin
Finished with chemo!!! But now lined up for radiation, to start 23/12 going to have planning CT tomorrow..Onc wants me to start tamoxifen at the same time as the radiation. Did any of you do the same?? Don't feel too hot about either rads or tam, particularly the tam, but as usual it's a catch 22 situation.
Been back at work full time for some weeks now - forgotten how much time work takes, not enough time for fun stuff left...
What a year alright, couldn't have predicted this one, guess you never know what curve ball is coming.0 -
Hi all
Alyson- hope Aus is fun. Must be great to catch up with everyone in person
Shazza, hope the scan went well today
Kruise, hope the diet is going ok. Are you on holiday in Tauranga, or working? Sounds nice to have a change of scene anyway.
Woody, hope CT & radiation planning go well. I guess its good to chuck all you can at bc. That's what I used to tell myself when I was having radiation- it just felt so wrong to be blasted by something so potentially harmful!
I'm enjoying the warm weather, getting lots of outside jobs done. Beats doing the inside stuff (ie cleaning)
Take care
kt0 -
Hi KT, hey was just reading your post on the travelling weather and you are are north of auckland and i have been thinking all this time you were in Waikato. lol silly me.
Musical, i don't know how you handle hot weather, but Gosh its muggy today, am hoping it may rain and cool it down, very uncomfortable today. got a feeling its gonna be the same for sleeping, too hot to do so. just got back from Ashhurst, brought some fantail doves , white with little fantails, thy have to stay in an avairy for a a month and then they can be let out to fly around or they will fly back to their original home. so they have a lovely big avairy and then about Chrsitmas, they can be let out.
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Hi Ladies, Woody...gosh this is baaaad. Im trying to remember what I did regarding Tamox and Rads and which came first. I *think* I started Tamox 1st, but I'll have to check that one out. I started my Rads in early Jan so youre about the same time as me. All the best for that.
Kt sounds like youre enjoying the summer! Ive been hard out working in the vege garden getting things up to speed. I prefer to do my jobs early or in the cool of the evening as I tend to get overheated really easy.
Annette yeah it is muggy. We got a few miserable spits of rain this am. Hoping to get some more. Things are starting to dry out again. Did you hear just recently that PN hospital has the WORST track record in all of NZ for waiting times in A&E? Apparently they either are or are going to be fined a couple 100K for falling below standards. Cant see how that is going to do anything except make the problem worse.0 -
no i did not hear that, wow, i just rang them up yesterday re hubbys scan that has been seven weeks ago and we heard nothing despite ringing them, as he has not got a doc gp, they tried to blame that, i said no they knew about that to start, trying to make excuses, anyway Mr Wilson rung me, the surgeon who will be doing his surgery to tell me that the results of the scan are fine, he has a build up of fluid in the not parts to mention and they were checking for any cancer there, but iy is clear, but needs to have it drained off which will be new year. one day surgery, and about a week or more doing nothing. lol BIl will have to carry the load.. won't hurt him. starting to cool off, thank God for that. yrs the water tables are already down at farm.
yes if they got to pay more fines, thats less money for the patients to have health care.will make it worse.
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Musical, did you have up dated checks on tumour markers from Palmy Hospital when you were been treated by them or does the GP do them. i read alot of ladies that get their tumour markers checked, is that only when mets are discovered or they have suspect you may have mets, i have never had tumour markers ever checked post op or ever. also have they eve rgiven you a bone scan just to check on things, i think they should check things more, Palmerston north are not informitive at all. abit hopeless if you ask me.
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Midnight, Im not sure about the tumor markers. I remember asking about it somewhere along the line but cant remember what the answer was. Perhaps some ladies might like to chime in on this. I *think* youre right in that they only do that if youre suspected or have mets. Maybe they do it in the higher stages and/or you have positive nodes. My nodes were all clean so this is probably why I don't recall much about it. Also I don't know what the actual test is. The confusion and overwhelming parts of it all can remain with us for a long time. There's so much I don't know. One thing Ive realized though is a lot of what youre told pertains to your situation and staging, for example, youre not going to be given an hours crash course on Chemo if you arent doing chemo. Another fact to consider is things change. Sometimes very quickly. They find new things/treatments/studies etc. so that has a bearing on what youre told.
Regarding monitoring, Im sure its the same with bone scans. High staging, suspected mets. I have BD (bone density) scans which are different. They are because Im on Arimidex. These are supposed to be every 2 years and I'll have to check when Im due for my next one. I had one pre chemo and Im 99% sure it was a BD scan.
I remember asking about "post monitoring" and wondering whether they were doing enough. You are right to be asking these questions and it's natural to wonder if youre falling through the cracks, and much more so with PN and how it is. The only dumb question is the one you dont ask. In NZ, they generally believe the US goes overboard with "followup" scans and so forth, which puts unnecessary stress on people and give you unnecessary doses of radiation etc etc. The US has a totally different medical system to us and that undoubtedly enters into the equation which has many sides to it, not the least being they are insurance based.
The general rule of thumb is youre given certain criteria which should serve as an alert if any issues arise. A main one is if youre having pain for 2 weeks then get it checked. The GP will be the 1st port of call, then the necessary procedures should be put in place from there, whether its a scan, an US or whatever. BTW, there is a HUGE waiting list for US's in PN. PN hospital really is dragging the chain. Another one that requires immediate action and probably goes without saying is any bleeding. You will have ongoing mamms unless youve had bi-lat mx. You will need to be doing ongoing breast checks. If you were to get a lump in the other breast, then Im pretty sure that is deemed as a Primary tumor in all cases. In other words, its not mets.
HTHs.
It would be good to hear from others in NZ and see what they are doing for post follow up.0 -
thank you, it just seems to me that with some countries it is like an automatic follow up, these happen for you and you don;t have to ask, here in PN, you gotta a drag it out of them and then they look at you weired, as much to say, why ask me that, that why do you need to know look. somethings you don;t need to know if the treatment is not for your situation, its like trying to get blood out of stone. Mum said, they are slack in your end of the country, Up in Northland they have so much going for them, like for the chemo patients, they have make up says, hair and face done, pedicures, manicures, they will bring meals to you, thats the cancer society mind you.. but the care my sisters friend gets is cool, she gets rung up by the cancer nurses to see how she is and she is BC as well, alot less grade than we have. Mum says, you gotta ask, or you don;t get it these days and the cancer patients get well cared for up there, but not all of us get it, i was treated very well at first. then went blah. i am not moaning, just wonder some times as you say, fall between the cracks, i wished i was more assertive and pushy.
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this what i call al lovely cuddle. AWW
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hi girls, hope everyone is coping with the pre Xmas madness. I got my scan results back today and there has been a good response in my lungs and everything else stable with no new disease. Which is great news. We are going to continue on with weekly taxol for as long as possible. A great early Xmas present.0 -
Congrats Shazza, thats fantastic news!
Midnight, is the truck business over for you now? Hope you're enjoying less stress if it is
Everyone else, hope you're all good. Enjoying the Christmas madness & warmer weather etc.
Just did an extra day of work today (early start, early finish) so that should help the bank balance! Need it at this time of year...
Managed to get back to pilates for the first time on Friday since my op, knackering, but good
Take care
kt0 -
wonderful news Shazzakelly - so happy for you!
I have an appointment with my breast specialist/surgeon tomorrow and also first mammogram since diagnosis to get a base one again. A little worried - but hoping everything will be ok. I will ask him about monitoring and scans etc. I have health insurance which I've had for years - daren't get rid of it now as would never be covered for anything bc related but because it was an existing policy I'm guessing the cost of some type of annual scan would be covered.
Christmas shopping is going slowly. Got my other halfs birthday on Wednesday to get through first
Love to all x0 -
Wonderful news Shazza.
Had such a great time in Sydney with the Aussie girls. Plan is to come to Auckland next November- think it is about the 21st. So start saving your pennies.
Early next year we should try to get at least some of us together because it is such fun and we can start planning for the Aussie invasion.
Big hugs to all0 -
What fantastic news Shazza! Great start for the coming year. I wondered about follow up as well and it all seems pretty vague.
Had the radiation planning session. I asked the radiation therapist about any creams and she said they don't recommend you use any.
In the meantime I've done my own research and it seems there are some good ones available, main useful ingredients seems to be calendula, aloe vera and manuka honey, might even blend one myself.
Work still sucks...though I am thankfully sitting somewhere else (which they say will be only temporary) and they refuse to give me a phone, which makes my line of work difficult. Trying to make the best of it, but I think an employment lawyer might be the next step. Anybody know a good one?
Anyway, need to get moving, time to get ready for work...0 -
Hi
How did your appt go Kruise?- all good I hope.
Woody, when do you start rads? I don't remember using any creams. I hated not wearing deodorant on that side!
I'm glad you had fun in Aus, Alyson.
Hope everyone is well.
I was just reading on another thread & staging was mentioned. According to a link posted (& in the staging section of this site) I'm stage IIIa not IIb!
http://www.cancer.gov/cancertopics/pdq/treatment/breast/Patient/page2#Keypoint9
Not that it realty matters of course, it's only a 'name', nothing else changes. Have the criteria for stages changed recently do you think?
Take care
kt0 -
Kt I think there was a change a while ago because stage 3c was added. It is just a measurement and there are other ways of grading it.
Sydney was great fun and they are looking forward to coming to Auckland next year.
Big hugs0 -
Hi there girls, went to gynecologist yesterday, he did a scan, Trans vaginal as they cann see womb, trying to see if bleeding is result of tamoxifen, as i stopped for a year the periods when i went on it, and then it started again. so they looking at womb for thickenss in the lining. what hr did say was that most wombs tilt either backwards or forwards, mine is straight up and down, trust me to be complicated. so i am going to be having an op called a hystoscopy and he wants to biopsy some things that he saw, but could not see well enough and explore. I tell you something the experience was a very very happy lady as i am normally fearful of these things to do with exams in that area, smears as well, he was so lovely and joviel, kiwi guy, who asked me, if i was ok when he was doing procedure and gentle that it took all the anxiety away and that made the difference all around. Some gynys treat you like a peice of meat, the one last year when i had a cervical polyp, said, how they managed to get a smear off that, is beyond me, i told the one yesterday about that, and he said, i will aplogise on behalf of all the gynercologist in this hospital, that was very out of order.so i will be having that op in 8 weeks. i could not of asked for a better doc, even hubby said, i am pleased you got him, i know you will be well cared for. he said i was alot less tense than i usually am.
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Hi Midnight.
I went thru something similar 2 years ago! Spotting in-between periods, so I had to have trans-v us as well, then D & C to get rid of polyps, since I was on tamoxifen too.
It wasn't bad at all- in fact I had a nice sleep & woke up to a nice cup of tea & sandwiches! The results were benign so all good. I hope yours is too I'm glad you have a nice gynae.
Alyson, you're right, its just one measurement. I might up-date my diagnosis tho, so that its in-line with whats here...
(I had a 4+cm tumour & nodes extensively replaced by met ca- one was over 3cm). Not that it effects anything really....
Well, the washing machine has done its thing so I'd better go hang the washing out & put another load in. Yay for nice drying weather!
kt0 -
My appointment went well - big chats with him about lots of things. Especially tamoxifen. Your stories kt and midnight are putting me off even more! Lol. He (my bs) basically said he cannot advise me what to do re Tamox as he knows it's not really targeted at my type of breast cancer tumour. In fact he said my type was so rare - maybe 2 or 3 cases in his duration of being a bs. But he said if he was me he'd probably give it a go in the hope it provided some benefit but if side effects were bad I could give it away with the knowledge it was questionable whether it was doing me any good anyway. So I am still back to square one. I still haven't started it but will need to soon if I'm going too. He was able to show me the mammogram images straight away on his computer screen and everything looked good. So I'm good to go for another three months.
Woody - I used Mebo burn repair cream during radiation and Mebo skin restore cream after I finished. 100% natural product. Just bought at local Life Pharmacy. They never recommended it but my naturopath did and I would put it on after treatment from day 1. It does have quite a pungent sesame/peanut type smell but it worked fine for me. I got red but no massive issues at all.
Sorry I don't know any good work lawyers. Sounds really crappy what you are putting up with. Hope you get a few days to relax over the Xmas break.
Alyson a party in Auckland next year sounds like fun :-)
Love to all x0 -
Hey Kruise
I'm glad you had a good talk with your bs.
Great to have one that doesn't rush you out nearly as soon as you've sat down. I know they can be busy, but sometimes...
Don't let my story put you off tamoxifen, like I said it was no biggie & turned out to be benign. Also that didn't happen till I had been on it for 7 years (atlas study said 10 was better than 5, but I stopped after my polyp).
Wow it's hot today Summer is definitely here. Hope you're all enjoying it!
kt0
