Kiwi ladies who need encouragment, but all welcome.
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lol Musical, Hubby asked me if they had a punching bag at the gym, i said, no, he said, what a shame, he said, you could pretend its my brother amd give it hell, lol as i have said, he drives me nuts and some days if i was near him, i would want to rearrange his face. i would not of cause, i would walk away, but if i had a punching bag at least, i would get the fustration out and all that really winds me me. hubby said, there are a few he would use it for too. Anyway my BP will be rising, better be good. lol
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Yup it's really a good idea to NOT get wound up about people if at all possible. The tyre kicking variety comes to mind and are really not worth it. Easier said than done though when its a relly or someone directly affecting your life. I tell you theres a few people I wouldnt mind giving a knuckle sandwich but in the end theyre not worth going down for.
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Amen to that Musical lol.
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I'm off today to see the surgeon and finally get my drain out. It's driving me crazy after 2 weeks. I think he's going to give my inflatable boob a bit of a pump up too :-)
Tomorrow I can drive so I won't be house bound and relying on others all the time. I'm going in to work tomorrow for some light duties too. So pleased I've been going stir crazy.
It's going to be a good couple of days. Hope everyone else has a great day too.0 -
Have a good day Shazza - don't do too much.
Big hugs for all, have a great week.
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Hi girls.
Yay for drains out! Hope it goes well. Like Alyson said tho, don't do too much. Ease back into work gently
It'll be nice to be independent again tho!
Hope everyone else is good. How's the BP midnight? Maybe you should get a punching bag for at home to get that frustration out!
It has been so warm the last few days it almost feels like spring is around the corner
I really don't like the cold...School & tech are back now, so I can have a bit more time to myself. It was nice tho to have cruisy starts to the day when I wasn't working
Cheers,
kt
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You never know these days with the health sector. People get treated so differently. Shazza just in case you havent been told about seromas... When you get your drain out, you need to watch for those. They generally arent too bad if you deal with them in enough time but they need to be aspirated or they can cause other issues like infections. Just a headsup.
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Thanks Musical. Yes I had problems with seromas way back in 1999. They took the drain out today but it looks like it was blocked and there was quite a build up of fluid which mostly came gushing out but I am still dribbling away a couple of hours later. Still better out than in. :-) the surgeon was unhappy with how my surgical wound was healing so I'm back on antibiotics and he's asked me to start taking vitamin c to help with the healing. He won't start pumping up my boob till he sees some more healing. I have an appointment with him again on Friday to make sure everything is as it should be.
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Shazzie I had an issue with one on my prophy side. It turned out to be quite a syndrome but didnt get infected. Lets hope yours clears up nicely. The rub is they don't like that tube to be in longer than a certain time frame or there are other issues. I think 10 days is what they prefer and if I remember coreectly no longer than 2 weeks. All the best with apptmt Friday. HUGS.
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Yay for drains out! I've used high dose Vit C to help with healing for my surgeries. It works. Do take things easy. Yay for driving too! Take care.
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ShazzaKelly - how are you? I've been thinking of you.
I'm guessing since you last checked in you have seen Reuben and your surgeon again? PET scan is next week?
I hope you are healing well and coping with the stress. Take care!0 -
Thanks for thinking of me. Scan is on Tuesday so keeping my fingers crossed it doesn't throw up anything unexpected. My surgery wounds are finally starting to heal although Stan had to stitch my drain hole up on Friday as it hadn't healed over on its own and I had been leaking all week. I had my appointment with Ruben on Thursday evening and it looks like I will be starting good old AC on the 20th, so suggestions for a good wig shop are much appreciated.
I started back at work last week and feel so much better for being back in the real world. Hope everyone else is going ok.0 -
Shazza glad your wounds are finally healing and all the best for your scan. At least one good thing with that leaking...better out than in! The last thing you want is an infection from the drain and/or a seroma. Also hope your chemo goes well. All the best for that and getting the right wig.
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Hi all.
Shazza, I'm glad you're on the mend. Thinking of you with your scans tomorrow. Hoping for good news.
I have my hospital appt re pmx on Wednesday, then I'm off for a DEXA scan as well. It will be interesting to see what the results are for both!
I'm hoping the aclasta has done its job & my bones are in good order...
I'm also v interested in what the public system says re pmx- will they do it & what will the waiting time be if they do...
Hope you are all well, enjoying the longer days. I think we've had a pretty good winter up here, no major storms or flooding- touch wood
kt
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Just wondering who else has had a PET scan. I'm wondering what to expect. It's a bit freaking being told you will be radioactive and need to stay away from children and pregnant woman for a few hours.
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Hi Shazza.
I haven't had a PET scan but I've had 2 bone scans (one when first diagnosed & one 2 yrs ago).
You get injected with radioactive tracer for those too
Sounds scary, but in my experience not really a big deal...
You should be fine & its only a few hours, so not too long
All the best, kt
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kt what was the name of the scans you had for your bone scan? MRI or CT or something else?
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Hi Musical,
I've just got back from a walk & coffee with a friend. Its a beautiful day out there.
The bone scan is also called bone scintigraphy. I've also had a CT scan & an MRI but they don't use radioactive tracers. (there was a dye? injected while I was having CT, but I'm not sure what that was)
Not to be confused with the DEXA scan which I'm having tomorrow- which is just a low dose x-ray to see how dense my bones are!! (edited to say oops the scan is wed not tomorrow!)
How's it going Musical- hope the LE is non-existant at the mo
kt
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Hey thanks for the clarification kt. All these dang scans I can never keep up with which is what. Im 99% sure when I had a CT they were going to use a RA tracer by injection but couldn't get the canula in my foot. They said for the test I was having the drink that you have as well, would be enough. My understanding was that was RA but its a while ago and not totally sure.
With the MRI I had, they gave me a tracer which I'm also 99% sure was RA. One thing I know for sure, I WONT be having that again as I got a nasty reaction (rash) which took a dose of steroids to fix.
Is the DEXA scan the same bone scan as the bone density scan we get before chemo and to monitor bone density every 2 years on the AI's?
My LE is all over the place and has been for about 4 months. Nothing is making a lot of sense with it but I just have to keep trying things to get it settled down. Just been to LEist today actually and got my new custom sleeve and glove. The last one has been worse than useless for the last 3 months or more. Sometimes I get the wrapping right and sometimes not. I just have to keep plugging on with that.
Theres new garments that come out all the time and my LEist actually had a couple of brands fresh in from the states to just "muck around with" and "experiment" with. None fitted me properly but as I donned them and generally experimented, I could get a general idea. One looks very interesting and might be a goer. It's supposed to be very reasonably priced compared to some of the monstrosities some girls have to wear. I see the girls over on the LE forums here posted about these new garments about a month ago.
Its surprisingly mild here today as well and has been for a while now. Very settled and actually got some gardening done yesterday as the soil was very pliable and well dried out. I hate having to lift heavy soil. Not good for the LE. You tend to want to bore in when all the green lights say go ... lol.
All the best for that DEXA tomorrow!
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I've not had a PET either and don't really understand the difference. I will google. I hope it goes well tomorrow.
Are you having AC x 4? At Auckland or Mercy? I had mine at Mercy and the nurses Elspeth and Emma are great ladies!
I'll be thinking of you tomorrow.
You too Musical and KT. Good luck with your DEXA.
KT, let us know how you get on with your pmx appt.
Musical, I hope you get that LE under control.0 -
Hopefully I'll be getting the chemo AC&T at Mercy. Still waiting I'mn pre approval. Think the PET-CT scan is pretty new. I haven't found anyone else whose has one. Guess all revealed tomorrow.
No wig shop recommendations any one? I'll need one for work if nothing else.0 -
Hi everyone
Musical I am joining you with lymphedema, sadly. Even tho I only had 4 nodes out and no rads, I'm young and fit and otherthancancer healthy, I still got the short straw.
Feeling angry at the world, and the dhb who don't treat lymphedema, and the surgeon who told me I wouldn't get it, and the garment shop who sold me an ill fitting sleeve than pushed all the lymph into my hand, so now I have hand lymphedema too. Gutted.
Ok that's my cry
Hope you're all feeling happier than me tonight
Xx kk0 -
Hi all
A pet scan is a cross between a cat scan and a bone scan. The dexa is different again and measures bone density.
Shazza I used the wig shop 34 Karaka St which is off Upper Queen St. Very nice people and my wig was great.
Kiwi LE is a pain. I have it quite badly in my arm, trunk and now fingers. Luckily I managed to get to Greenlane as well as seeing Mary Wakefield who is very highly regarded in the field. Which shop did you get your sleeve at? Hope they got you a gauntlet or glove as well. have you been taught to do the massage - I am sure it is the only thing that helps control things. I can also tape quite well and that really does help.
Please PM me.
Toomac www.toomac.co.nz/ which is over the North Shore is very good for sleeves and measures you properly.
Sending big hugs
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Shazza - I used the same wig shop. Wigs by Hair Creations, 34 Karaka Street. I found them good to deal with. I also bought some nice soft hats for wearing around the house there. I went in and they shaved my head when it all started coming out.
Good luck today.
KiwiK - sorry to hear about your LE. You are entitled to cry and complain! This BC gig, and all associated SEs sucks!
My hot flushes are at an all time high. They are brutal! I wake up 6+ times a night bathed in sweat and on fire. Thanks early medical menopause!
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Thanks Kiwimum for your kind thoughts.
I hope your hot flushes settle down real soon. Ugh what a nightmare waking up all the time! as if its not hard enough sleeping anyway.Kiwikid, HUGS and more HUGS to you.
If I saw you I would give you a big warm gentle hug!!! Im sorry you are having to deal with this. Theres nothing surer than that LE SUCKS! It a flippin deal breaker and feel free to rant complain and sob on our shoulders because it can be extremely frustrating and infuriating. Also feel free to ask any questions either here or by PM or both. Id say one of the worst things is dealing with someone on the med team that makes light of your situation and a flippin surgeon of all people (grrrr) . The sad fact that not only in NZ but everywhere, there is much ignorance about LE. Ive heard lots of girls on the LE board say they were "never told" and thats US girls. Well I was told, but some of it was minimized like RTO told me RT didnt pose a risk. On the contrary, Id say that was exactly what triggered mine.
One of the most important things that SHOULD have happened but didnt with me was a baseline measurement from a qualified LEist BEFORE surgery. Moreover, that baseline measurement should have been BOTH sides.
LE is a major and I'm likely to get very irate with people who glibly say things like now all your treatments over you can "forget about Cancer"....yeah right...what?... with LE demanding so much of your time and attention FAT CHANCE.
It's good that Alyson up in Auckland has been able to help you get onto the right people. Another thing that is a dealbreaker witrh LE is the dhbs can be soooo different in their approach to LE including funding, ranging from no support at all to get garments to a lot of support. Some of us have to pay for LEist/PTist some of us are funded. The general consensus is that garments like sleeves and gauntlets and gloves only last 6mths. I only get one sleeve/glove per year funded (both sides) some jurisdictions get 2. For me, one side is custom jobst 300$ for glove and sleeve each, other side off the shlef juzo. 150$ My LE is being such a COW Im looking at paying for the shortfall whereas before I could get away with it . Now I can't.
SHazza hope you find the right wig. It can be fun trying all those on. lol... I got a long one. After my 1st chemo it started lifting, and I was in hosp at the time being neutropenic. They came over and shaved my hair off which was 2 foot at the crown. I refused to look in the mirror for a few days after that. Now my hair is way down my back again but I STILL have my chemo curls at the bottom lol.
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Thanks guys for the wig advise I have had a look online and will pop into the store a bit closer to the time.
I have yet another question. I need to have a port put in. I didn't have one last time. Things have changed in 14 years. What can I expect. I believe it's a day stay procedure under general. I was wondering if I will be well enough to work the next day? Did anyone have any problems with theirs?
My scan went ok but now it's just a waiting game for the results.0 -
Shazza yes just one day for the port and then I went to work the next day but think they don't advise driving. My port was fine and usually worked well.
Hugs
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Hi all.
Shazza, I didn't have a port either, so no help to you there. I had a wig but only wore it twice because it was so scratchy! I prefered hats/scarves...but we're all different!
I hope your LE has settled down Kiwikid & yours Musical & Alyson (!)
So, I have just got back from my 'big day out' in Auckland. I had an appt with the surgeon regarding prophy mx.
She was happy to do it- and I'm pencilled in for 17 September!
I asked about risk of LE and she's set up an appt with Breast Care nurse for baseline measurements with a new fangled machine that sees how much fluid is in your arm? Any one had this? I hope it works...
How long should I expect for recovery? - she said 2-3 weeks. Last time I had axillary nodes taken so it was more involved. No nodes this time
My new job is fairly physical, I don't want to rush back too soon, but also don't want to take too much time off as its a new job!
After I visited my sister & her new puppy (labradoodle-v cute) I had the DEXA scan.
My spine has improved
but my wrists & my hips are worse despite the aclasta infusions. So the tech said the endocrinologist would send a report to my GP to say what is recommended to rectify...So, that's all my news...
Its good to finally get the pmx underway- I feel quite good about it, I think its the right decision for me
kt
(edited to fix bad grammar!)
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Just back from coffee with Kiwikid, so nice to put a face to a name. Do hope you get that LE sorted out and under control.
When I get back from the US and Canada I will get something organised so we can meet up. I hope to see quite a few oif the BCO folk while I am there.
Pleased to hear you are getting things sorted Kt
Big hugs
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kt, all the best for the 17th! thats not too far away. I hear you on the wig dept. lol. Still wrestling with the LE thing. New sleeves helping to a degree, but I wrapped last night with quite good results. Still need more practise.
Please find out what the machine is called kt. The ladies over on the LE boards here are wide awake to anything that doesn't cut the mustard. I know theres some devices that are not proven. Heres just a thought for my experiences. Recently (in the last month) I had a specialist measurer and yet he still used a tape measure and took quite a lot of time to do it. I would get somebody competent in measuring. It is important to get that baseline. Just thought Id give a headsup on that.
May I ask how you went on the eclasta? any side effects?
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