Kiwi ladies who need encouragment, but all welcome.
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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katcar0001 do you know anyone in Auckland to meet you at the Airport. Let me know if you need picking up, I would be only too happy to take you to your motel/hotel or whatever? But I could only do it if it was outside working hours as I've had so much time off work I don't like to push my luck, Donna
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OMG has anyone had to deal with Spark lately? Trying to set up ph in new house for a communications co they are very hard to deal with!!!
Trying to relax & let it go for now as I'm at chemo. They've got dates mixed up etc
(just got a txt from them) Hope you manage to get good flights Katcar.
Well done on the progress with your house Kruise. I hope it's a nice easy sale for you
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Donna, I'm glad you've adjusted to not having your animals, gives me hope
Nice to enjoy the benefits of country living without the work... Busy here at chemo as per usual. My lungs are mainly ok, but hurt on the effusion side when I laugh, hiccup, yawn & sneeze! CT in about a month. So we shall see. I'm thinking it's scar tissue from the pleurodesis.
Have a nice day, y'all
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Hi all.
Having a wonderful time in Canada with the family
Katcar. I would be happy to meet you as well and if you need somewhere to stay just ask though it might be difficult in January. Keep in touch.
KR hope all is well with the higher dose of chemo.
The colour is just so beautiful.
Hugs to all.
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Hi Alyson
I'm glad you're enjoying your Canada time with family. Fantastic. So far so good with chemo, we'll see how the next few days are
Did a wee bit more packing... Lots more to do...
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You ladies are simply lovely, kind people. I really appreciate the help with flights and the offers to collect me at the airport. Things are looking up, and I have been getting some better prices on my Skyscanner alert. Pete (bf) has a son in Auckland, so hopefully he will be available to pick me up. I would love to meet you, however, so if I stay with him for a day or two, maybe we can have coffee or something.
I wish you all a wonderful day!
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Hi Everyone. I hope the extra chemo is kind to you KT. Packing up a house is no easy task, I hope it's all going well. Nice to see everyone else here. Alyson, those leaves look delicious!
Off to get my eyes tested today - they have deteriorated a lot since before chemo and now it's just getting embarassing! Got to get a haircut as well. I have been having to have it cut every two weeks, but it's a lot thinner which is apparently because of the exemestane. Hopefully they can do something with it. Not sure I like being grey either.
Have a lovely long weekend ladies
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HI everyone. Niki I love your hair style, it looks fabulous. I have been wondering how you have been getting on, you are certainly looking good. Alyson how lucky are you to be in Canada at the moment with the change of seasons, it must be truly beautiful. Katcar, I live in South Auckland, not too far away from the Airport so if you are at a loss I could meet you etc. Just keep in touch and let me know. Well I for one am very excited about the long weekend. Probably do some gardening and sewing, my favourites. Although some friends and I might be catching the train into Auckland on Sunday to go to Britomart. Have a nice safe weekend everyone xxx
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Looking good Nikki.
I hope everyone has a great labour weekend. Sounds like you've got it sorted Donna.
I know what I'll be doing.... I can't believe how emotional it has been today (mind you it is my crash day). I have cried a couple of times- once because I don't want to leave where we are and once because the rental which has been 'cleaned' is still pretty dirty. And because I'm so tired & there's so much still to do! Luckily we don't have to be out of here till Monday 2 November.
Going to rest up now & hopefully be able to handle everything better tomorrow.
Night x
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KT. I hope this weekend is easier on you than Friday was. I understand it's over whelming when you don't want to move and you add all the other stuff into the mix.
I hope everyone is enjoying their labour weekend and getting some quiet time.
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KT - sending hugs and good thoughts. I know how you feel. Seems like every rental we've had that's been "cleaned" is filthy. So you spend two (or more) days cleaning the rental and two days cleaning your old place. Just sucks. And I can't imagine how hard it is to leave the beautiful property you have as well as your animals. So I would say a good cry or two or three is in order. Hopefully the new owners will let you come visit them. Do you have any Sweet Louise vouchers you could use to get the rental cleaned properly? Or to help in some way? Just an idea.
Nik - you look fantastic.
Alyson - beautiful colours. So glad you're having a good time!
Katcar - if you end up in Wellington, happy to meet up or give you a free place to stay. We're about an hour north of Wellington, but there are buses and trains into the city and we have a car. Where are you now (brain fog). Hope you're not dealing with the hurricane.
Donna - so sweet of you to offer Katcar a ride.
Hope you're doing ok.I was at a conference in Rotorua this past week. I had talked a former coworker from the US into coming over to be the keynote speaker. She and her husband drove back from Rotorua with me on Thursday. On a whim, we decided to detour through Napier. I'd not been there before (it's on my to do list), and it was lovely. We only spent about an hour there, unfortunately, but it was amazing. Can't wait to go back and do a real trip. At any rate, they stayed with us until yesterday. We went into Welly on Friday (HUGE mistake) and got caught in the holiday traffic. Over 3 hours to get home. And pouring rain, so nothing to really see. Yesterday, we went to a small nature reserve and down to the beach for a bit. Then took them into Welly for the ferry. And would you believe...at Pukerua Bay, the traffic was stopped. After sitting about 20 minutes (watching the clock tick away), my husband remembered that maybe we could go over Paekakariki Hill Road. So we did a U turn and went back. They were diverting all the southbound traffic (except buses) over the Hill, so we joined the crowd. We got them to the ferry 2 minutes after "suggested check in time". We would have put them on the train, but the trains were all replaced by buses yesterday for works on the line! We saw that they opened the road southbound at 2:30; their ferry left at 2:45, so it was good we didn't wait.
It was a bit ironic - I almost never get stuck in traffic like that. So I fear that between us getting ready to move (boxes EVERYWHERE) and the traffic experience, they'll just remember the visit as sitting in a car and tripping over boxes. Oh well. It was lovely to have them visit!
Hugs to all,
Terre
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Thanks ladies
I'm just having a rest between packing etc. I spoke to the letting agent and she had a look and has given us a refund of a few days rent & is getting another cleaner to go over the house. Phew!
Wow, what a crazy time you had with your visitors,Terre. I'm sure they just loved seeing you guys tho. The other stuff doesn't really matter! I know what you mean about boxes everywhere...
DH is coming with me to chemo for the first time tomorrow. We're going to Henderson to pick up my daughters old mini afterwards on the way home. So much to do & to remember to do! My poor brain is having trouble keeping up.
I hope everyone had a great weekend and is feeling relaxed & reenergised
Cheers, kt
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Just about to turn in for the night. Have had a hectic week and am so behind on emails and the forum. THANK YOU to Alyson, Donna and Terre for your lovely, generous offers. I am tempted to say yes to all of you so I can meet you all together! Wouldn't that be fun? It looks like I may be able to get to Christchurch via L.A. rather than S.F., so I am working that route now. I hope to nail something down in the next week. My BF purchased too early, and then his flight dropped by $150. Murphy's Law.
KT -- I hope things are not so rough now. My heart goes out to you for having to give up your place and then put up with cleaning after other people's filth on top of being in active treatment. I am so glad your letting agent got you some assistance. I wish I could give you a big hug, so I am sending you a virtual one ((((HUG)))). You are entitled to more than one good cry, that is for sure.
Alyson -- I so miss the change of seasons and big, colorful fall leaves. Thanks for sharing! Reminds me of my childhood.
Nik -- Your hair looks healthy and thick, and the cut is great.
Terre -- Your traffic experience sounded grueling. At least you got to see Napier with your friends. I'd love to go one day!
I won't be online much until this weekend as I have a deadline, but I hope all goes well for you ladies this week. ~kat
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Hi all.
Kat, thanks. I hope you get good tickets for your trip.
We are in the rental now, still some stuff to collect & sort out at the old place. Boxes everywhere here, hard to unpack. Just got the essentials we can find (can't find a lot! How does that happen?). I'm finding it impossible to sleep here with all the noise. It was so quiet where we were, and tho we're on the edge of town, there's a industrial area near by- so we have trucks starting up at 4am and roaring/rattling past and a factory? that plays music for the workers all night. The shift seems to stop at 5am cos that's when the music stops!
Luckily DH & kids managed to sleep, so just me with my eyes hanging out. I had a total meltdown yesterday. My poor parents got to witness - so I think I succeeded in causing them worry
It was my chemo crash day & I am running on empty as well... So tired...Terre, I hope your move goes better than mine!
Have a good weekend everyone
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KT - I cannot imagine moving back to the noisy city. I value my tranquility more than anything. I am so sorry that you are going through this very rough transition. Some things that have worked for me in past: a fan or white noise machine, ear plugs, a boring talk program. I hope you can get the rest you so badly need. Moving sucks even under the best of circumstances.
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Oh KT, so sorry your move is going so badly and you're dealing with noise and lack of sleep. That's no fun. I'd have a melt down too! In fact, I seem to melt down with every move, no matter how well or poorly it goes. The last one wasn't bad except the movers just basically put stuff in random locations and we have no storage space. The one before that...I was ready to kill my husband and bury him in the back yard. Which would have been easy (the burial) because instead of packing to move, he spent about a week turning over the garden to get it ready to plant. And yes, he knew we were moving! The movers wouldn't take anything boxed. Eighteen car loads later, we were finally out of the place and I was beyond annoyed. And no, I wouldn't really kill him. But...the thought did cross my mind, especially with freshly dug earth just awaiting . . .
Hopefully this one will go better; DH is actually packing and organising things.
Hope things get better for you soon, KT.
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hi all, just a quick question: for you follow up after active treatment (3-6 months check up) what sort of specialist do you see? Oncologist or somebody else
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Woody, I think it might depend in what area you're in as well as maybe what txs you had and staging and so forth. I saw my BS for 6 mth checkups but I think at year 4 I was referred to GP for 6 mth CHeckups.
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thanks for that Musical, just wondering what the differences are
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Hi Woody, I've gone down to 6 monthly Oncology appointments now and I think I still have to go to the Manukau Superclinic annually for Mammograms/MRI's but that's still up for debate as I got shitty with them and insisted on MRI's due to ILC so I'm not sure what's happening yet, but definately 6 monthly for Oncology. I'm only 20 months out though? Maybe it changes the further out from diagnoses you are?
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Woody, it's a good question and we need to know these things. Fizz it does change the further out you are, but certainly they will monitor you more if you are higher staged and I'd imagine for that sneaky ILC. Node involvement may also add to the mix. I know one thing for sure -- between the DHBs there can be inconsistencies.
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Hi Woody. I am at 6 monthly Oncologist consultations, and yearly Breast Clinic appointments (no mammograms or ultrasounds because I don't have boobs).
I had ILC, large tumour with 9/12 lymph nodes and diagnosed 14 months ago. Personally I would like to be monitored more, but that's what they do.
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thanks for your replies so far...would be interesting to collate these answers. I do wonder about different standards of care of diferent dhb's. Seems very wrong that care should differ based on where you live.
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It's been a bone of contention with me woody as well. I asked my LEist why this same inconsistency exists with funded sleeves etc. At the time, the answer was that each dhb decides how it is going to spend its money. Also at the time one dhb didn't fund them at all but cant remember which one.
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I can speak for Taranaki DHB, sort of. We have an oncology department, but our oncology specialists are all from Palmerston North - Mid Central DHB. I had mammogram and ultrasound, biopsy then surgery, all in January this year. Then I had bone scan, chest & abdo CT, and X-ray and MRI of femur only, which led to the Stage 4 diagnosis and Tamoxifen in early March. I see my oncologist 3 monthly, usually for about 10 minutes. Blood tests every 3 months.
Then no scans until I complained of pain in September, and got chest and femur x-rays and a bone scan which showed progression. I will be having a CT next week.
Does that sound reasonable? I was expecting to get scans every 3 months or so. I only got the Sept scan because of new pain, otherwise I wasn't due for any until December.
As for LE, I have 2 compression sleeves, for which I paid $37 each, and a vest/bra which I have not yet been charged for.
It would be interesting to compare with other DHB's, although maybe it more depends on the individual oncologist?
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I can't really remember follow-up after my first diagnosis. I think it was ultra sound & bone scan initially followed by yearly mammograms. I saw onc & BS alternately I think, 3 monthly then 6 monthly then yearly after a year or so had gone by?
This time around it depends on treatment. When I was on xeloda it was 3 weekly onc visits and 3 monthly scans. Now I'm on taxol, it's also a 3 week 'cycle' so again 3 weekly onc assessments, weekly chemo and still scans around 3 monthly (CTs)...
Thankfully my LE seems to have gone away- only had a couple of mild cases. But up here I couldn't find funding, maybe asked the wrong people?
I'm still really tired after the move. Just got my blood test results via email and my haemoglobin, haematocrit & lymphocytes are low- so that doesn't help.
Chemo again tomorrow- hooray...
Hope you are all feeling well. Catch you later
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PS hope your CT is ok next week Sue
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Suems that does seem a long time after a stage IV dx. I know the rule of thumb is if the pain lasts more than 2 weeks get it checked out. There's the idea that over monitoring is not good because of extra radiation from the likes of CT scans, but obviously there's a whole lot that goes into this and there's some Stage iV ladies that are years out, so no one should be made to feel like they're written off. May I ask what brand your LE sleeves are? The Juzo's off the shelf I understand to be around 150$ I wear a Juzo on my prophy side and a custom Jobst sleeve and glove on my BC side and I'm funded for one a year of each. Last time I spoke to my LE person about this there was a DHB that funded for two per year but I can't remember which one it was. If thats still the case I don't know. Things change all the time. The shelf life for sleeves is said to be 6mths. New Plymouth is such a long way from PN. Some one I know from up that way had to travel to PN for various things to do BC.
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My care is similar to Sue's, no surprise since I go to Palmerston North. Was doing 3 monthly checks, then 4 monthly, now six monthly. I've requested a bone scan; having some new pains. Haven't heard back yet. Haven't had a scan since January. Tumour markers are stable, but we're not 100% sure if they're accurate for me because Wellington (where I was dx) didn't do baseline blood tests.
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