Kiwi ladies who need encouragment, but all welcome.
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It's amazing how they can fit everything in when the slab looks so small. Here's hoping for some long fine weeks so that the building is not held up. Hope the chemo goes well tomorrow.
17k Shazza!!! Thats a long long way. I used to do quite a few 1/2 Marathons before I tore my cartildge and was diagnosed. Absolutely loved them and the sense of achievement afterwards.
Hi to everyone. I hope you all had a lovely weekend, and managed to enjoy some sunny weather (if you're in Aucks).
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kt, thinking of you today and hoping chemo will be ok for you. Shazza, I'm impressed at your fitness level, way better than mine!
Nikki, I agree with others that it's a good thing you forgot your two year anniversary, afterwards it's something to notice but not to dwell on too much. I forgot the date of my surgery last year and had to check in my diary. It's been a strange year for me, massively stressful during the diagnosis period and difficult afterwards too with all the scans and waiting for results of course. Finding this website has helped hugely though. I feel so much less 'lonely' with BC because apart from my mum I don't really know others with it apart from on here. Also have learnt so much about the intricate details of treatment choices etc. and I find it really interesting,
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I am with you Michelle. I don't know where I would've been without the knowledge is power thing and you all for support. Unfortunately I didn't know anyone with BC, and when I did connect, in person, no one was quite "like" me (but then we are all unique). Thanks for the nomination BTW. I hope those bibbetts are working well.
KT, thinking of you today and hoping for minimal SE's x
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Hi everyone, thanks for you thoughts.
It went well today- the actual chemo only takes 6-10 minutes, but flushes etc prob add a 45min or so. No premeds (apart from domperidone) so very easy so far. No se's yet... Hopefully will remain that way.
Well done, Shazza, 17km! Glad your daughters still enjoying her course
It is great to have this forum to feel less alone in what we are dealing with for sure- thanks everyone
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Hope the se's are still treating you well Kt.
1st day of Spring! The last couple days here were so beautiful but today a bit grey and overcast.
Some of you may remember me telling you about my Aunt who passed of stomach cancer in Feb this year, and I went to Nelson for funeral. Well her husband was travelling in UK and was found last week dead in his hotel room. Nothing suspicious but looks like a massive heart attack. I absolutely think you can die from a broken heart as he adored my Aunt. So sad for their two sons, both early 30's and one with little kiddies. Losing both parents within 6 months. So I'm off to Nelson again tomorrow for the service. I hope the weather is ok as coming back on one of those small Soundsair planes. Life huh...you just never know what's around the corner.
Well done with all that walking Shazza. You are an inspiration. I am determined to start some fitness now that spring has sprung.
Have a great day everyone
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Hi Kruise.
I'm sorry about your aunts husband, so sad. I hope the funeral etc goes well. Life is random for sure. Hope your flights are good too.
I'm still doing well, no real se's. Can't complain
I hope everyone has a good weekend. It's a shame that the sun couldn't hang around for it, but at least it's spring now.
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Hi everyone.
KT hope your chemo goes well today and that you're still feeling alright. It's a long way to go for a few minutes of infusion. Shame it can't be done closer to home.
Kruise I hope the funeral went ok.
I am off to an oncology workshop on Friday. This time with the Northern Health Alliance. Representatives from all the DHB's around Auckland will be there. This time it's about delivering long term chemo (including herceptin), and how best to do this. I did tell them that I was her- and had no experience with regular long term stuff but they still wanted me to talk about the difficulties we face as consumers and ways of improving the services which are currently offered and could be offered in the future - like having infusions at "home" DHB's. Apparently Auckland hospital will be getting busier because of keytruda, so while oncology consultations would still be at Auckland Hospital, chemo delivery could be closer to home. Any discussion points would be gratefully accepted.
Have a good day everyone.
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Hope treatment goes well today KT, it does seem odd that you have to travel when we have large hospitals in all areas of greater Auckland. Nikki I'm sure you will be a great advocate for BC patients as you express yourself so well on here. The issue I would raise myself is women having greater access to MRIs because as many of us know, lobular breast cancer very often doesn't show up on mammograms or ultrasounds. The public perception of mammograms being all you need is outdated and not true.
With Nikki Kaye being diagnosed, there will probably be a lot of NZ media coverage of BC. I wish all the "awareness" could translate into more health dollars for better treatments.
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Thanks Michelle. If this goes bigger (and is not just an "idea"), it would be good to get some other people's perspectives as our needs are really diverse and depend on our individual situations. Got some good news from the Cancer Society today. The postal appeal raised lots of money $150k+. I am happy with that. Hopefully it keeps their Nurses on the road.
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Hi girls.
Nikki, it would definitely be good to get chemo other places than Auckland hospital. North Shore would knock an hour of travel off each time for me. And the lovely oncology nurses that live on the Shore might have work closer to home with less rush hour travel...
Great news on how much money was raised.
I agree on the MRI issue to Michelle, I would like my daughter to have one before she's turns 30....
(And awareness that BC isn't curable once it spreads outside the breast, which it can do even years later. The 5 & 10 year survival statistics are quite misleading to the public. More research money for a cure would be great.)
Chemo was fine today- hour long appt again. Nice and quick compared to the taxol.
kt
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Hi KT. Ditto on chemo treatment *and* oncology consultations at North Shore Hospital. I am fortunate I can still (barely) afford medical insurance which allows me to see my onc privately outside of work hours (6pm).
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Hi Everyone. I hope you're having a nice Monday, and had a lovely weekend.
The workshop was really good on Friday. I have to admit that it's been a while since I have had to play with the big people, and I really enjoyed it. It got my slow brain moving again - however it slowed to a stop on Saturday lol, and I had to go to bed to recover. Sheridan Wilson & Fritha Hanning where there along with Nurses from Auckland Oncology and Counties Manukau, also the Ministry of Health. They are hoping to start Herceptin infusions in November then other chemo (bowel & breast) after that. Lots of logistical issues to work out first, like how to get the patient files from Auckland to Middlemore and back again (to name one)........ who knew that they were actual physical files. How to get the herceptin from ADHB to CMDHB etc etc etc. All very interesting. I did talk at length about the distance that people have to travel for a very short infusion time - they agreed that it was ridiculous.
Amazing to believe that it's been 15 years since 9/11. How time flies. Hope you are all well, and enjoying the start of spring.
xoxoxoxo
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Hi guys, sorry I've been absent for so long. I've only just managed to get my computer at home going and I don't go on this site at my new job, although I have started telling the guys I had BC a couple of years ago, some of them react really funny, one guy raised his eyebrows, said 'shit' and ran upstairs, I haven't seen him since. I have been there for 9 weeks now. Wow it has been such a challenge but I really love it. Sounds like everyone is doing well. I had a quick read and I must say I find you guys really inspiring
Nothing really exciting in my life. My job has taken so much out of me I've lost my mojo and just can't get it back. Every time I get sick or feel unwell my mind goes to a black place and I withdraw into myself. All my single girlfriends who I used to go to the pub with on Thursday nights now have boyfriends and don't want to hang around with me so much anymore. So I haven't really been going out much, but that's probably just as well because I am so tired all the time. Are any of you on Tamoxifen, I'm wondering if it's worth it. Shazza I'm impressed you are doing a 21k walk. I can't even be bothered walking to the letterbox. Although with summer coming I might walk up there one day haha! We have a very long driveway. Lovely picture Kruise. And KT I love your fantastic attitude and how exciting to have a beautiful new house to think about. Nikki let me know if you ever want to catch up. Take care all. Donna xxx PS I've finished my Mediterranean Diet study. I lost half a kilo (whoops) and my waist got a bit thicker (typical) but all my blood tests looked good, everything went down that was supposed to and I am eating so much healthier. I think the secret is Olive oil and eating heaps of veges, fruit and fish. 0 -
hi everyone
Lovely to read your post Donna - can definitely relate to the losing your mojo thing. But it sounds like your job has been keeping you very busy and out of trouble. Really glad you are enjoying it.
We had rain, rain and more rain over the weekend. At least the rest of the week looks sunny and nice. I am trying to get motivated to do some washing and housework but not really inspired lol
And some study too. Have to try and do at least an hour.
My eldest daughter is on the bus back from Auckland today. She's the one that suffers from anxiety and panic attacks and depression. Though (touch wood) she's been ok lately. She got some free tickets to that small Delta Goodrem concert last night at the Tuning Fork and was over the moon when Delta picked her out to dance on the stage with her. It will honestly make her year!!
Kt how is your new chemo treating you? When do you have your next scan?
How's your walking training going Shazza? I need to try and do a walk today.
Anyone else got any news?? Been a bit quiet on here lately.
Xx
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I agree Kruise - really quiet. I hope everyone is ok, KT I hope you're feeling alright.
Hey Donna, nice to hear from you, and I am so glad your job is working out. Your mojo will come back I am sure once your job becomes totally routine and you know whats what.
Daylight saving soon, I will have to get back out and walk after hibernating over the winter. I admire your commitment Shazza.
Well done your daughter Kruise! The concert sounds like it was fun for her. I took Louise to a mindfullworks thing for anxiety last night. She absolutely loved it. It's a 4 week course only for an hour a week. I am hoping that it helps her to focus and not stress out about every little thing, especially since her course is just about finished and she's going to have to get a full time job.
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Hi all. It is quiet around here. Hope that means everyone is busy enjoying life. Not much going on in mine. I'm still on the oral taxol trial which seems to be going well. I'm still on my walking program and hopefully will be ready for the 21k Pink Star walk in a few weeks. I have managed a 17k walk so I'm fairly confident. Mostly during the week I walk for about an hour but one day on the weekend I do a longer one. My fitness has really improved over the last few months.
Good to hear from you Niki, Fizz and Kruise.
Hope the new chemo and the house building are going well KT.
Hope everyone else is going well.
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Hi everyone. Sorry I've been mia.
I'm not feeling too flash these last couple of weeks- really tired and shaky, wanting to sleep a lot. I'm finding it hard to concentrate on replying to posts etc, but have read from time to time. (Finding it hard to concentrate, and my vision is playing up a bit).
Saw Reuben on Monday, he thinks it may be because of WBR - it does take the se's a while to peak. I hope it eases off soon
My tumour markers have come down 100 points or so, so I guess that's a good sign. Good on you Shazza re the walking. I'm glad taxols still working well.
Kruise & Nikki, sounds like your daughters are doing well
Are you keeping the med diet up Donna? I hope you're getting used to the new job now.
Take care all,
kt
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KT thanks for posting. I am hoping that your SE's will start to abate really soon and you can get on with feeling better and start getting on with everything to do with the kids house hubby etc (not necessarily in that order).
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Hi everyone, haven't posted for a while because my computer was out of action
and I don't like typing with my thumb on my cellphone. KT so sorry you're going through all that, really hope it gets a lot better soon. Nikki, my son went to mindfulness classes for four weeks and thought they were ok but he said he was the youngest there by about 20 years! He's been going to a clinical psychologist for six weeks and has learned some really helpful techniques to combat negative thinking etc.Donna, nice to see you back, your coworker sounds pretty lame with his reaction. So many people are though unfortunately, including some of my own friends and family, but that's another story. With my second diagnosis, I've told hardly anyone, and I must say I much prefer it that way. The first time I told lots of people, and was very disappointed and surprised at many people's lack of ability to be empathetic/helpful/caring. I've seen several threads here with lots of others having similar experiences. Also sorry to hear about your friends not being available to go out anymore.
I like walking too and try to do it most days but not in the rain. By the way, I saw Bridget Jones' Baby and really enjoyed it, have read the books too.
Bye for now, Michelle.
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Hi everyone,
I hope you are all going well.
I'm ok, saw the radiation oncologists this week & they're keen to do some radiation to my upper spine. Not looking forward to more rads, but if helps with pain, and deals to the LM mets I guess it's worth it? I'm very tired, so haven't been reading or posting much.
Hopefully we'll be getting some warmer weather & more sunshine someday soon, because life seems brighter with the sun shining!!
Take care,
kt
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Good to hear from you KT. What a bummer about needing more radiation. I guess anything to help with the pain.
Hope everyone has managed to stay dry. Surely we are due for a bright sunny patch.
I have my 21k pink walk coming up on Saturday so I'm hoping that it will at least be dry for that.
Have a great week ever
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My sister's pug Oscar.
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Nikki how cute is He?
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Don't let that mild mannered exterior fool you. He's a bit of a mischief Shazza!
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He's very cute. I have two cats but you can't really dress cats up. Good to see your post kt, I really hope you get some relief soon. Good luck for the walk Shazza, hopefully the weather is fine but not hot.
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Hey all. Hope you are all well.
Very cute pug Nikki
How did the walk on Saturday go Shazza? I can't remember what the weather was like, but I hope it went well! I can't imagine walking that far anymore!
I had my last of 4 radiation treatments today, hooray! Don't have to go back to Auckland until Monday for a med onc assessment thank goodness. Gets a bit tiresome travelling down everyday.
Really tired now, time to start recovering again.
Take care all, kt
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KT glad to hear your latest round of radiation is over. It's such a long way for you to travel each day.
The walk is this weekend. I'm keeping my fingers crossed that the weather is ok. A rainy 21k walk doesn't sound like much fun.
We have had a little drama here at home. They have started building on the section next door to me, for reasons unknown they drilled through a sewage pipe and filled it with concrete. This resulted in raw sewage backing up through my gully trap.
We have had to move out while they try and sort it. It's a complete mess. There are diggers everywhere. They have dug up our deck and taken down the fence. We only rent but have been here nearly 4 years. Hopefully it's sorted by Friday. Hope everyone is having a good week
Shazz
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Hoping that you start feeling better sooner rather than later KT. Seems like it might be an idea to snuggle down for the next few days - that weather isn't looking good. How is the house building going?
Have a great time on your 1/2 Shazza. I did the 10k last year and enjoyed it. It's a bit beyond me this year with my knee. Maybe next time. That sewerage problem sounds like a proper nightmare. I hope that no personal property of you or your kids has been damaged. What were those contractors thinking?
I have my next appointment with Rita on 1 November. I was hoping to be able to dodge her but it seems that she's the one that I have been given now. I hope I feel like I click with her a bit better this time. She said that I would've had my ovaries out by the time I saw her next - that's a big fat NO! I am still waiting for a date for that and my mastectomies to be revised. It will be sometime between 1/11 and 9/12 apparently. Maybe I will get both of those things for my 50th
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hi everyone - Kt rest up! Really feeling for you and everything you are going through. I hope after a few days you come right. Yes as Nikki said - how is the house coming along? They seem to get the framework up very quickly after the slab is laid - so you probably have a roof and windows even by now.
Good luck Shazza for the walk and I hope you are back home today? What a complete muck up.
I haven't been up to much. Studying, working, etc. Took my youngest over to Rathkeale in Masterton to get his uniform sorted for next year! He's starting college (yr9) and going to board during the week over there - home for the weekends.
I'm having more uterus issues so having a D&C etc on 20th October. Not looking forward to it but gotta be done.
Optimist, when I was a kid I used to dress our family cat up in baby clothes and pretend she was my baby lol. I don't think my cats would like it now though, or my dogs either! The kids tried putting a doggy Santa suit on our older one last year and he hated it. He just stood in one spot too freaked out to move 😜. Our puppy is nearly 6 months now. Virtually the same size as our other one.
Weather down here been windy and wet. Hope it starts getting better again soon!
Have a good weekend everyone. x
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Hi everyone. I have been missing in action but decided to come back on to BCO. I have read the last few pages to catch up on everyone. Have been busy with grandchildren and trying to sort out health issues.
Big hugs all.
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