Kiwi ladies who need encouragment, but all welcome.
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Just lost long post
Kiwi and Angstapp I am always around for coffee and would love to meet up sometime. I am in Mt Eden which is close to hospital and most of the doctors. Kiwi I lived in Howick for many years. Botany had just started when we moved into town. Still have lots of friends over that way - was there on Monday. Fizzdon is not so far away either.
Shazza will keep you informed about the Get together. I am sure it will be a very long lunch and we would love any one else to join us. Sorry you will be away Kt but Chrissy is here for about 10 days and she would love to meet you so will be in touch.
Ladies, Chrissy is a real inspiration on BCO and on a couple of facebook groups. She has been Stage 4 for about 7years and is a font of knowledge and really cares about others. And she is a real character.
Big hugs to all.
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Sorry Angstapp. I have to work next Thursday. I am trying get to lots of hours in before I start chemo - all these appointments have whacked my hours. I know who you feel having 3 hours to kill at Auckland Hospital, I ended up walking down to Newmarket because I was worried about losing my carpark (it was crazy there yesterday). I'd love to chat to you. Perhaps we can meet half way at Manukau sometime?
Scans are all over now - so what ever will be will be. Praying for some good news, because up till now its all been bad :-(
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Alyson. Maybe we could catch up next time you are out this way. Perhaps Botany sometime for lunch and grab Fizzdon as well ........ and anyone else who is free and around the area. Honestly you ladies have got me through the last few weeks, thank you :-)
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Kiwi the parking was definitely hell at the hospital yesterday so greatful I have early morning chemos when it's not too bad.
The oncologist I saw on Monday had decided to order a head CT probably with my next set of scans which I was quite happy with. Obviously that wasn't soon enough for Ruben as I got a call from booking saying he had ordered an urgent as soon as possible scan so I'm having that at Greelane tomorrow. I guess it will be good to get it ove with but I'm not expecting it to show much. Hopefully a brain.
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Hi all.
I'm off to Auckland today for my onc appointment & the pamidronate infusion. I hope the parking's not too diabolical today!
My appt's not till 11 so prob the carparks will be pretty full!
Hope your scan goes well tomorrow,Shazza. Good to get it over
It would be nice if you ladies get to catch up out Howick way
I think there might be a Sweet Louise meeting coming up, up here one of these days, so that will be good to meet other stage IV's. It would be nice to meet Chrissy, Alyson- she sounds lovely from all her posts.
Catch you later
kt
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I'd be keen to meet any of you. It's nice talking to people who understand. Good luck with any upcoming scans etc. Donna
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I'm keen to catchup too. If anyone's free next Thursday send me a message - otherwise we could do a brunch on a Saturday morning soon before the silly season is upon us
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Brunch sounds like a good idea Angstapp.
I am stressing out about the results of my CT and Bone Scan. Anyone know how long does it take to get the results? Do they ring you or tell you the results at the next oncology appointment? The Breast Nurse at Manukau said that I could ring her and she'd go through it with me but I am too scared to do that. God I am turning into a nutcase - honestly I was a together sane person before all this stuff!
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Kiwi1966- when's your next appointment?
I know for my last scan my onc rang with the results a couple of days later, but usually you wait till the next appt.
It is stressful waiting for results, everyone talks about scanxiety
Not much you can do but try & keep your mind busy doing other stuff & not second guess. Easier said than done I know. I hope you can I had my appt & infusion- took longer than I expected, 2 hours all up for the infusion & flush after. So far so good, but usually any se's don't kick in till the evening so we shall see. I am hopeful there won't be any
kt
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Hey kt - hope you didn't suffer any se's last night or today. When you haven't had a particular drug before it's always hard to know how you'll cope.
Good luck with the scan results Nikki. It is hard waiting. Hopefully you'll hear something and if not get on the phone and ring and hound someone
I have my pelvic ultrasound next Wednesday the 29th - it's been ages to get the appointment through so I hope it really isn't anything to worry about! (I had a CT on 8th Sept and they found a small mass in my uterus/cervix area - but the onc is sure it's nothing worrisome).
That afternoon I have an afternoon tea catchup with the other bc women I did the Living Well course with. So that should be good as haven't seen them since then.
Went to Hot Chocolate concert last night as got cheap tickets through Grab-One. It was actually good and I knew the songs scarily enough!! Everyone was up and dancing to 'You Sexy thing' lol
Alyson I can't make it up on 29th November but I can possibly organise to fly up and meet you ladies if you organise a brunch - and tie in some Xmas shopping!
Xox
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Shazza - hope your head scan went ok too - they certainly got that organised quickly for you. I laughed at your bit about finding your brain
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Just got my hats from Headcovers Karen. Thanks for the suggestion. They were really quick, I only ordered them on over the weekend. If I haven't heard anything today I will call tomorrow and find out the results of the scans. The CT people said that the results would take a week, but I can't imagine that they'd take that long. Got the bra lady coming this afternoon - I am over being lopsided :-)
Hope your scan was ok Shazza.
Nikki
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Thanks Kruise, apart from being extra tired today & a little bone pain for a short time, pamidronate is not too bad
Hope everyone's scans come back ok.
Have a nice day all. I'm about to spend an hour or two on my bed reading
kt
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Reading a book on your bed sounds good kt - don't be surprised if you nod off tho...lol...I know I would
Great the Headcovers stuff arrived Nikki - they are pretty fast. I use to enjoy looking over their site - the often have sales. A bit annoying sometimes when the fabric or colour I wanted wasn't in stock but that happens. Also you start to notice all the cool scarves in the shops if you ever go out. I have so many scarves now compared to what I did have.
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I've just had my scan. Never had one at Greenlane before. Had a couple at starship when the waiting list is too long at Auckland. They always give you a lollipop. Guess its just wait and see.
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I sure did nod off- lovely to have an hour or so nap. Just got back from shopping- my son needed some stuff for cosplay for Armageddon
I guess no lollipops at Greenlane, Shazza - hope Reuben rings you with the results!
kt
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Hi everyone, pretty excited it's a long weekend. I feel so tired a lot of the time, can't sleep, am having a lot of side effects from the Femara, or might be the Letrozole. Try not to complain but feel at least you guys know what I'm going through. I've just started taking cholesterol tablets (Femara can increase cholesterol), heart pills to stop palpitations which were starting to frighten me, stomach acid pills because I've got a constant pain in my stomach and tightening feeling in my throat (stress), antidepressants (which I had to go on when I got diagnosed), and there is something else which I have forgotten. I feel just like a little old lady and can't believe this time last year I wasn't taking any medication at all, little did I know what was waiting just around the corner. I even fell over at Farmers just like an old lady would, flat on my face - embarrassing!!! And yesterday morning I got up for work an hour early thinking it was 6 o'clock (it was actually 5 o'clock) and wondered why it was so dark - duh! I hope everyone else is doing okay, hope your results come back soon Shazza and Kiwi I hope you are starting to feel a little more in control. I plan on doing nothing this weekend except sleeping, sewing, gardening and spending a bit of time with my kids, if I even see them that is haha. Happy Labour weekend all:)
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I'm joining you with doing as little as possible this weekend, really looking forward to having Monday off.
I live around the corner from the block houses so hoping that the open homes don't cause to much disruption. It's not an easy suburb to get in and out of when there's something on.
hope the weather holds and everyone has a great weekend doing as little or as much as makes you happy.
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Enjoying the long weekend, got today off too because its Hawkes Bay anniversary woohoo! Its beautiful down here, got a crew of 13 yo girls staying (dd bday) so lots of giggeling. They've got amazing amounts of energy...
Hope all your scans turn out ok...waiting for results isn't fun.
Fizzdon, isn't Femara the same as Letrozole?
Wish I could come up to Auckland for brunch, but its not going to happen...still in the middle of renovations.
Donna & Nikki- it's tough when you are on this journey and having all this things happening to you that you never even thought of...but a year from now life will settle down and it's only the checkups that remind you.
Enjoy your weekend!
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Hi Woodyhollow, yep Femara is Letrozole, same thing. Did any of you get a really sore armpit after Rads finished (4 months ago now)? Mine bothers me nearly all the time and it freaks me out in case it's lymph nodes. I have an appointment with the Oncs on 11th November so will certainly be quizzing them about it. I can't feel any lumps, cause the whole area is bumpy but it's always sore and my boob isn't and that's what was radiated - weird.
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Woody - enjoy all those giggling girls! And your extra extra long weekend. How old is your dd turning??
Donna - I know exactly what you mean about suddenly feeling like an old lady! That's a lot of how I've been feeling this year. I also have moments of feeling down. My armpit and arm hurt too. It's mild Lymphodema. My hand actually swells up too. Has anyone talked to you about Lymphodema symptons? There are exercises to help, massage, etc.
My long weekend is not going to be as relaxing as I'd like. My 10yo son has to go to school tomorrow as they are celebrating 100 years etc etc so an assembly and fair thing after. Sunday a million jobs planned outside if weather permits plus helping a friend for a couple hours tidying up their house as they are putting it on the market and have the photos booked on Tuesday. Hopefully some rest time on Monday.
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Yes I went to the Lymphodema nurse at Papakura and she said there was no sign, took all sorts of measurements etc. I also went and saw my BC nurse at the Superclinic but she said it was nothing to worry about. So maybe it's normal to feel discomfort in your armpit. I am the worst person to get BC as I am a real worrier with an overactive imagination. I just have to keep saying to myself relax, breath, let it go. Sometimes it works but I really get myself into a state. Hopefully it's something I will get used to but I doubt it. I also spend a lot of time on my own and get a bit sad sometimes in the weekend. My kids don't really need me anymore so a lot of the time it's just me and my dog and cat. Just as well I have a busy job, it takes my mind off things, but in the weekends - that's a different story.
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I agree Donna - spending large amounts of time by yourself with your own thoughts is difficult when you have an overactive imagination. I am exactly the same, and working at home doesn't help. I suppose that I could go into the office in Onehunga but the traffic and hassle of that would just add to my stress!
I have decided not to chase my results today - I haven't heard anything from anyone this week, so maybe no news is good news (hopefully the same for you Shazza). I don't want to trouble trouble until after the long weekend. Have a lovely restful weekend - hopefully the weather plays ball.
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Ok, got the call from Oncology. Assessment on 3rd November (my 48th birthday) and starting chemo on the 5th at 8.30am. Oh my goodness!
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Yay, Woody- extra days holiday. I can't complain, my next work day is Tuesday.
Fizzdon, I'm sure all these drugs mess with our brains! I find myself forgetting stuff etc,...
Kiwi- great to have a start date & just get on with it. I seem to remember the first time around my assessment was around my birthday too (38) weird how it works out.. I remember thinking great birthday present!
My dental appt went well, no fillings or trouble- good to know when I'm on a bisphosphonate- I def don't need ONJ.
Hope everyone has a good weekend too
kt
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Hi Ladies. I have an appointment to get my portacarth in (also on my birthday - turning 48 is going to rock!). Does it hurt? I had thought that they were going to use my veins for the first influsion, so I was supprised to get the appointment. Not sure I like the idea of something in my chest.
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hi kiwi I love my port. Everyone should have one. They make chemo sooo much easier. After 55 and still going I don't know what I would do with out it.
It is funny how these events seem to tie in with birthdays etc. when I was first diagnosed in 1999 I started chemo on my daughters 3rd birthday, the next time around in 2007 I got the call to say it was Cancer on my wedding anniversary. This time I got my Stage 4 diagnosis on my 46th birthday. Thought Rueben was going to have a nervous breakdown when he realised what day it was. Couldn't stop apologising. Poor bloke.
I'm having a very lazy weekend. It's a bit grey and uninteresting out there. Hope everyone's having a great Labour Weekend
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Hi girls
Can anyone recommend an oncologist in Auckland who specialises in fertility?! I am with Paul Thompson at the moment and I sought a second opinion from Reuben Broome (dr hot) last year, and he seemed very thorough. Paul is relatively old school and although head of onc at ak hospital, I'd still like to see someone else.
Thanks
Xx kk
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I see Rueben. Never thought of him as hot, geeky and a fantastic oncologist but not hot. He is very thorough and right up with the play research wise. I don't know any that specialise in fertility but there must be a couple at least, hopefully someone will chime in with some advice.
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Hi Nikki I am surprised that they are giving you a port...are you getting 6 rounds of chemo: 3 FEC & 3 Docetaxol? Or maybe your veins are more difficult. Apparantly it can be easier as Shazza says, once its in place, cause they dont have to go through the whole finding a vein ritual so that will save you 15min per appointment. The chemo stuffed up the veins in my right arm a bit, now nearly a year later its just about healed itself.
Donna, my armpit doesnt hurt after the radiation cause they cut the nerves when they took out the lymphnodes. Cant feel much at all there...makes it really tricky when shaving. They did also radiate quite a large area, not just my (reconstructed) boob, but also up to the collarbone and my armpit. Does get a bit stiff at times, probably lack of excersise. Would there not be swelling involved if it was lymphoedema? Just as well you've got that appointment, or otherwise maybe contact the breastnurse?
Any of you had a nipple reconstruction? Was it worth going through an op for? I've got an app with plastics in Nov and I know they will be asking if I want one.
KT- lucky that your teeth are ok, what is the biphosphonate? I went in last week because I had an absess by one of my front teeth, now they have advised I should have a rootcanal in the front ($900!). Now I have been reading about a link between rootcanals and cancer...wonder if I should get a bridge instead. The antibiotics worked fantastic, absess is gone and because the root is as dead as a dodo cant feel anything.
Kruise, my girl turned 13, she's my youngest and only girl. It was lovely having them all here, we drove to Gisborne and had a round of minigolf, then I let them go shopping by themselves for an hour. After that we went to the restaurant that her oldest brother owns, as a present to her she could take her friends and they could order what they wanted...loads of iced chocolate and desserts! Sleepover after and a good time was had by all...
Enjoying last day of long weekend!
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