Kiwi ladies who need encouragment, but all welcome.
Comments
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KT I've just seen your post. Hope things are going ok and that you don't need to stay in hospital too long. Let us know how things are going.
Kruise so sorry to hear about your Aunt. I hope the funeral goes ok and you are able to enjoy your party on Sunday.
I'm enjoying a lazy day doing nothing. I start on the oral Taxol trial on Tuesday so that's my chemo break done and dusted. I was really enjoying feeling human again.
Hope everyone is having a good long weekend. Keep us posted K
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Home again now, thank goodness. As if I don't spend enough time in hospitals already!
So after 2 lots of blood tests, an X-ray & hours of being on a monitor I was finally released. Phew. It wasn't my heart thank goodness, prob just the lungs (mets)- but good to be sure I guess.
I'm glad you've enjoyed your chemo break Shazza. I hope the oral trial goes well, are you staying in for the first couple of nights? If so, I hope it's nice
Have a good weekend everyone!
I'm so glad I can get on with mine now!
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http://www.stuff.co.nz/life-style/well-good/inspir...
If I'm not mistaken, this is our Amber. Well done you!
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I just saw that on stuff too. Awesome Amber!
Kruise - the Tamoxifen is to blame for the endo issues - does a number on our lady bits. I'm really pleased I had the total hysterectomy. Less chance of hormone imbalances creating tumors again. I'm back on Tamoxifen and am having excess vaginal discharge which is irritating and combined with the estrogen starved vaginal tissues I have to manage my situation downstairs several times a day. I'm finding Cocnut Oil good for keeping skin moisturised. Sorry if that is TMI...
Oh and big congrats on the wedding news, very cool.
Amber - I read somewhere early on that tumor grades are more a 1 or a 3 - that a grade 2 tumor is more likely to be more a 1 or a 3 - if that makes sense. Bummer on the HER2 +. I worked through chemo - took a few days off after the infusions but I would say each chemo got progressively more difficult to recover from and as I was on a fixed term contract that was coming to an end I was pleased to take 3 months off to then go down to Christchurch for Rads (they don't do that here in Marlborough)
So I am at my 2 year mark - yay! But I seriously thought I would be over all this by the end of year 1. Well my health is better now and I'm feeling more confident that I wont develop more cancer but this crappy ride has introduced me to some amazing people here and in my original chemo group from the USA.
Amber I hope you join some of those other groups ( there are so many) It's great having perspectives from larger population countries.
Hope you all had a great Waitangi Weekend.
Yep hot weather and hot flashes....actually looking forward to cooler weather!
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Hi guys, well done Amber, it's a great thing you are doing and brave too! JoTro it's my 2 year mark as well and I am finding this horrible weather and hot flushes quite distressing. I can't wait for winter and I never thought I would ever say that. KT I am sorry to hear you were in hospital and I hope you are feeling better now! Kruise I am sorry about your Aunty
Good luck with your trial Shazza. A few weeks ago I saw something on Facebook about the Auckland University doing a study on the Mediterranean Diet and Breast Cancer. So I applied and I have been enrolled. I will find out more about it next Thursday when I have to go into Auckland so they can inspect me hahaha. I'm really hoping I get to try this diet. I will keep you all posted. Take care everyone, Donna xxx0 -
Donna, interesting about the trial, I'd love to know how you get on. Eating feta and olives (mediterranean diet) sounds good to me.
Shazza, I hope your trial goes well.
Sorry to hear that you've been in hospital KT, pleased that you're out now and that they didn't find any heart problems.
Hi to everyone else.
I have a large pool in my backyard (K-mart special) - I float around in an inflatable armchair and it's been so good for my hot flushes (thank goodness my backyard is private). The maintenance is a bit time consuming but worth it when I am drenched. I have been known to drive down to pac n save to hang out in the walk in chiller when I am really desperate. Doesn't stop the makeup from sliding off though
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Hi ladies,
Thank you for your kind words regarding the article on stuff! The whole thing has spiralled but it has been a real boost to my family and I. I am a very open person naturally so the whole process has felt right. The response has been amazing and now the daily mail has done one also I'm getting messages from kiwis living in the uk.
Had egg collection today
5 healthy perfect eggs are being frozen. Sorry I have been a bit quite. Things are still full on at work then this has gone crazy this week. If any of you are in Auckland and would like to come to my shave my head BBQ let me know I will have a bit of down time coming up I imagine so I look forward to reading more articles and gaining more information.
We are in this together xx
Hope you are all well
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I haven't shown anyone outside of work this yet
The company I am sales and marketing manager for we manufacture leather toolbelts in NZ the brand Taurus Leather Company. Long story short, I have had pink toolbelts made, this is NZ made, NZ cow leather.... I'm so excited about it the picture doesn't do it justice but I'm hoping to do something great with them 
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OMG Amber I love those tool belts, they are gorgeous. Lets us know the details of the Shave your Head BBQ and maybe a couple of us might come, if you would like?
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Hi all.
I'm glad your egg collection went well, Amber. Good to see the article, let people know it's not just older women at risk for BC.
It's lovely down here in Nelson, hot but not as humid as up north. Good idea about the Pak'n'Save chiller to cool off
Hey, Donna, if you get any good recipes or meal ideas with the med diet trial please share
I'm off to enjoy my hol!
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yes anyone in auckland who would like to come please do!!
this is the blurb i put as a fb event
Hi everyone
Most of you know what's going on at the moment and that I am about to start 4 months of Chemotherapy. Instead of letting my hair fall out, I would love to be surrounded by friends and family for an afternoon BBQ and to be with me when I have my hair shaved off.
I have read articles about others who have done a similar thing but they did it after chemo started. I want to do it before treatment starts so I am at my strongest before my immune system is knocked and so I don't go through the process of it falling out once we start treatment.
Basic plan for the arvo would be
12:30pm - 1pm arrival, meet and greet
1:30pm-2pm - BBQ
2:30pm - Head shave
You are welcome to pop in for a visit or stay all arvo, leave when you want, no pressure at all. If you have kids and feel it would be okay with what will be happening they are welcome also.
Mad Butcher is donating sausages which is awesome and we will have some salads so there will be some food available but if your coming for the arvo and want to bring a plate for BBQ pot luck type thing you are welcome to do that also, honestly no pressure at all, what ever works for you
BYO drinks
Plus for any of you who haven't yet, you will get to meet Ava she loves people. If you are dog people, please feel free to bring your fur babies if they get on with other dogs
Please let me know if I have missed anyone or if there is someone you want to bring with you, no problem with that at all, please message and tell me so we have an idea of numbers.
Tissues will be provided for those who need them myself included
For those out of Auckland I understand it's not easy to get here just wanted to include you. we will film it so you can still be part of it
Can't wait to see those who can be there xxx0 -
Hi there
From Wellington. We are waiting on a biopsy result from an FNA on a lump that takes 7 to 10 working days for the pathologist to write up. It is now 7 days and it is very hard waiting and anxious.
The lump itself is 10mm. Everyone says try not to worry but it really is an impossible tunnel
The nurse said she would contact with results, otherwise all the communication we had was from the receptionist of it takes 7 to 10 days and handed an FNA leaflet and sent us on our way. Had to make an enquiry from there and they said if it is bad news the nurse would ring otherwise you will just get a letter in the mail so we organised the nurse to ring us with the results. Overall it has been 12 days now since the biopsy
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Hi Supportive. Nice to meet you. 12 days is a along time to wait for results. I would ring them to see if they have the results back, then at least you'd know. In Auckland (Manukau Breast Clinic), it takes 7 days to get the results, well it did for me a year or so ago.
Good luck.
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yea we queried and they said it takes 7 to 10 working days and with waitangi but i was suprised especially as we have gone private
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Hi again Supportive.
Years ago I had FNA done in the public system & had to wait while they looked at it. I was told then that there were abnormal cells (don't know if it is still done like that in Ak). So I'm hoping no news is good news for you.
My other tests usually take longer and I don't get results until my next appointment.
I hope you find out soon. Waiting is the hardest part.
Hi Nikki. Hope all is well with you & that the rain reduces the humidity!
I really noticed it when I got back from Nelson. It was lovely there, blue skies & warm but not humid. We had a great time. A highlight was getting a sea shuttle into Abel Tasman & doing a 4 hour walk!! The longest I've walked in ages and I was worried it would be too much. But I made it! Very slow esp up hills. Had a lovely swim at the end (anchorage bay).
I'm back at chemo now oh joy
Hope everyone else is goodkt
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thanks everyone. Yes 7 to 10 working days. His is day 7. I am not sure if people on here when talking they got theres in 3 days whether it is working days
Nurse said she would call when they had results but not sure how efficient and can imagine the work load might distract her
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Hi there, Supportive I would call them. It can't do any harm? Waiting is so horrible, I remember it well. Good luck to you.
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Supportive, so they've had their 7 days (I had my results in 5 working days with Counties Manukau. I believe that privately, at least in Auckland, is usually a bit faster). I would be ringing. At the very least, by contacting them you're making it clear that you want the results quickly (good or bad). Hopefully the results are available and you don't have to wait any longer - that is agony in itself.
Hey KT. So pleased to hear that you enjoyed your break away to Nelson. Wow, I admire you doing a 4 hour walk. 40 Minutes seems to be my limit. I am off to Sydney with a friend in May and I am trying to build up my stamina (first break away since my diagnosis). The exemestane/zoladex has messed with my bones and I have the terrible joint pain SE, particularly in my right knee which was already damaged prior to BC. Rosalie is starting me on Fosamax next month to try and spare my bones. My bone scan prior to chemo was pretty bad - riddled with arthritis, so no wonder I'm doing it hard now. Hopefully the fosamax will do the trick or at least not make things worse. Any of you been on it at some stage. Apparently I need to stay standing for a while after taking it so it doesn't head on out - sounds blimming delightful!
I finally had my braces off last Friday. I needed to do it before starting the Fosamax, because of the risk of ONJ if I need further dental work. Finally being able to smile like a normal person is PRICELESS!
Shazza, I hope you're oral chemo is working out.
Hello to everyone else.
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Rung 2 days ago the nurse rung back and said she would call us when results are in. She did say it was day 5 and today is day 7 (technically 7.5). They do stand by the 7 to 10 working days. Have not heard unfortunately and as naive as this sounds i am hoping that bad news travel fast and we have slipped down the priority line
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Hopefully, you will hear from them before the weekend. I would call them if you haven't heard by Friday afternoon. Another weekend worrying doesn't do anyone any good.
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Hi guys, hope you are all doing well. Supportive I'd be taking my tent and sleeping bag and telling them you will be staying there until you get your results. That is just cruel, I'm sorry but it makes me really mad. I know things take time, but they obviously don't know what the waiting is like. Anyway enough of a rant. I went into Auckland this morning to the University Medical Research place over the road from the hospital. I had my blood taken and weight, height etc. I have been accepted into the trial to see if the Mediterranean diet reduces the chances of breast cancer coming back. I could be in that category (which is the one I am hoping for), or a low fat diet, or just eating the same old crap that I usually eat. So it will be interesting and I will keep you posted. Niki I am looking forward to catching up on Sunday and meeting Amber. Take care everyone, Donna xxx
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wish i had the strength to go put a tent there but part of me fears the result also
The other sidethat could happen is the nurse forgot and there is a letter in the mail. They said from the beginning if they find an issue the nurse will ring otherwise i believe you just get sent a letter Cn you believe the speed and this is private
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My mastectomy was private as was pathology. It took about 10 days.
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Hi everyone. I hope you all had a good weekend.
Supportive, have you heard back about your results yet? It seems so unnecessary to have to wait soo long.... I wish patient portals were the norm everywhere & we could look at our results on line.
Congrats on braces off Nikki
When do you find out which diet you get Donna? Did you two make it to Ambers?Hope your BBQ went well Amber
Hi Twofer- how's it going with you?
I had a quiet weekend around here. Went & saw Deadpool (cringeworthy violence, but funny) with hubby after dinner out while our kids entertained friends at home (they stayed all night, but thankfully we got sleep as they were pretty quiet).
Yesterday I mowed our sections lawn (ride on mower) while DD & DH attempted to assemble a shed. Warning do not by an assemble-it-yourself shed! It took them about an hour to assemble one door!
Well, catch you all later
kt
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My husband brought a do it yourself shed once - it took days! Sounds like you had a really busy weekend KT. Any joy with builders etc?
I am getting used to not having the braces - but I still have a lingual brace on the top and bottom teeth. Feels like a stack of lego bricks in my mouth but at least no one can see them, and I can eat crunchy stuff again.
I am just off to the Lymphedema nurse - It's been far too hot lately to wear my sleeve everyday - hopefully I won't get in to trouble with her.
Have a lovely day everyone.
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Hi guys, you know I blame one of those sheds on my impending divorce - not really but I do remember a lot of swearing and one day after a big storm, that shed was never seen again. We did make it to Ambers, it was a lovely day, fabulous food etc. Great seeing Nikki again who is looking rather fabulous without her braces and her lovely hair colour. I also met another nice lady called Robyn who lives by Amber and me, we exchanged numbers and will be staying in touch. Amber has the most amazing attitude, I did shed a few tears as did most people. She has a lovely family and partner and was so so brave. She is young and gorgeous enough to get away with having no hair. Anyway take care everyone, Donna xxx
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Hi my kiwi sisters! I am locked and loaded! Xxxxx
Loved meeting Donna and Nikki at the BBQ the other da
Will let you know how I get on
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Hi Amber, it was so neat meeting you and your lovely family and friends. You are rocking that beautiful bald head. Good luck and if there is anything you need, some soup, house work done, cleaning or anything, please don't hesitate to ask okay. Hope everyone else is doing well. I got into that Mediterranean Diet trial. First they told me I was in the 'no change to my normal diet' arm of the study, but someone pulled out so now I am in the Mediterranean Diet arm, so I am pretty excited. Take care everyone, Donna xxx
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Afternoon all.
Hope your chemo goes well Amber.
Yay, you got the med diet Donna
Please post any recipes/meal ideas as I'm always looking for dinner inspiration!(Edited to remove silly pic
)My DD is at chemo with me today & has taken a pic which she has altered so I'll pop it up :P
PS she altered it bcos I was complaining about my wrinkles- & she has a warped sense of humour (the first alteration was a smiley pile of poop after I said airbrush my wrinkles out...)
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KT you look gorgeous! I like your hat underneath. You look good too Amber. I found the first chemo fascinating, the next ones not so much. Ask about the Emla ointment if they don't offer it to you - saves the discomfort of them accessing your port.
Great news about the Med Diet Donna. I bet that put a smile on your face - being in the no change group would have been disappointing. I'm hanging out for some miracle recipes.
My son (at last) got his learners licence last week - there goes my swift, I can see it coming!
Off to take Mr Stu to the hairdressers - he looks like a little woolly sheep and is finding the heat as difficult as I am. Then having a meeting with the girls for a "thank goodness the kids are back to school at last" debrief. Busy old afternoon.
Be well everyone
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