Kiwi ladies who need encouragment, but all welcome.
Comments
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Hi Alyson & Musical, thanks.
Musical, they told me the name of the machine & it went right out of my head! I'll look on the LE threads sometime & see if something rings a bell!
I'm planning to go to Toomac (I see you know of them too, Alyson) and get measured for a sleeve too just in case- but it would be nice if I could get some funding
I was on the Aclasta (5mg) once a year for 2 years. I had horrible SE's the first time- headache, nausea, vomitting, bone pain, abdo pain...! that lasted a couple of days. The second time I took anti-emetic/nausea meds beforehand as well as nurofen & I was much better.
Shame it hasn't worked as I had to pay for it myself & it was over $700 a pop!
This year we have medical insurance as hubby got a new job- so hopefully that will cover anything I need!
kt
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kt Im so sorry you had that to put up with all that on the Aclasta and then pay for it and then it hasnt worked. Those side effects sound VERY SCARY. Yiiikes. Im sure its "funded for those who qualify" whoever that is. I see the ad on TV.
You should be funded for sleeves if you have LE. I'm not sure how things stand as a preventative though. My guess is you would have to be clinically dx as having LE to qualify for funding. I wouldn't know about insurance. It would also pay to ask some questions regarding anyone measuring you. I would ask if they have done any training. A lot can go wrong from ill fitting sleeves like making LE worse.
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Good news you are booked for your pmx KT. That will come around fast I'm sure.
We have a labradoodle puppy (10 months old now) and he is gorgeous. He is so easygoing and so gentle with the children.
Yay for medical insurance KT!
ShazzaKelly - I hope all is ok with you? I had a port for my chemo. Putting it in was done under general, taking it out under local. It was good to have one with 16 chemo treatments on my list. I did see some ladies having terrible trouble with their veins and was pleased I didn't have that hassle.
I did find the surgery hurt more than I expected. Mine was also very prominent on my chest and I couldn't wait to be rid of it. I was left with a horrible big scar. The PS cut it out when I had my recon recently and I'm hoping it heals much better!
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Yay Kiwimum, a labradoodle too!
my sisters labradoodle certainly is gorgeous- I'd be tempted to get one too, but we already have so many animals. The kids would love it!Musical, aclasta is funded if you have osteoporosis, but not osteopenia like me. I just need it to counter the effect of zoladex & letrozole on my bones (I guess my bone loss would have been worse without it)
I'm just trying to research what the latest advice is re garments following mx- also what exercises too. My last one was 10 years ago & I'm sure ideas have changed since then! I didn't really have time to ask the surgeon & I won't see her again until the mx happens!
Any opinions?
Shazza, when do you get your results? All the best with the port placement.
Where's midnight at?
Cheers,
kt
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kt thanks for that on the Aclasta. I could never read that (small) writing at the bottom of the TV screen when the ad came on.
There is a wealth of info about garments and commentary on exercise over on the LE boards. Summarizing from memory, yes opinions have changed regarding exercises. It has been discussed quite a bit. It has been found that doing exercises that have you lifting your arm above your head in the 1st 10 days to 2 weeks or so after surgery is a no no, whereas it used be encouraged. Research has revealed that this puts you at a greater risk for LE. It is said that excessive stretching while that initial healing takes place can cause more harm than good.0 -
I get my scan results when I see my surgeon today. It's also my birthday. Keep your fingers crossed for me ladies
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Shazza as a lot of folk say on BCO I will be in your pocket. And I do hope you can have a happy birthday. Treat yourself no matter what.
Super big hugs.
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Thank you. I'm off to see the surgeon now, but have had a call from the oncologists office asking me to come in and see him at 7:30 pm tonight and to bring a friend. Not sure what to read into that.
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Fingers crossed here Shazza.
Happy Birthday too! I hope you've managed to have some fun as well as your appointments
kt
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Happy Birthday ShazzaKelly. I'm thinking of you and hope all is clear and good!!!
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So it turns out I'm stage 4. I might have only had a couple of small little breast tumours but it has basically spread everywhere. Now everything changes. I still don't know how to tell my children. Not such a great birthday :-(
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Great big hugs, Shazza. Go over to the Aussie thread and chat to Chrissy- she is the expert on such things and there are quite a few girls who are Stage 4.
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Hi ShazzaKelly,
I'm stage 4 too and was from initial dx in 2007.
I was in Palm Nth and knew no-one else like me. Coming to these boards and reading and listening to the other women here made me so less alone.
I had no reason to believe I was stage 4 and everyone told me I would be fine. then boom, opps, yes indeed there are is a met. The feeling of shock and horror is over whelming but there is life after the dx. I am nearly 6 years out now and doing ok. I was 45 at the time and thought my life was over. It changes and of course is never the same again but it can still be a great and beautiful life.
Alyson is so right, come over to the Aussie thread or the stage 4 thread. It's a scary thing to do but there is lots of hope there and wonderful women. At first you might like to just read for a while but anytime you have a question or concern just ask, someone will have a great answer.
Be very kind to yourself and know that it will take time to work through all the emotions running rampant. If you don't want to tell your children right now then leave it a little while until you know what exactly is happening. I know on the stage 4 thread some women only tell them the basic facts and not the worse case. It depends a lot I think on the age of your children. Mine were grown and we didn't tell my 18 year old cos she was doing scholarship exams at the time. She was very cross at me at the time for not saying anything but I think we were right.
Give yourself a few days or weeks to let things settle. Cry as much or as little as you like and if need be get some help for any anxiety and grief you need. You don't need to be superwoman and this is something that is a huge blow to recover from.
I'm happy to PM if you want but you are also getting some great support from the kiwi ladies. I am kiwi too but I don't post much on this thread. But I do read it.
What a terrible way to have a birthday. I had an MRI on my birthday at dx looking for mets, that was sh*t too.
Moira
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I just read back through and saw that this is your third run through the mill.
So you know the fear etc, but ye gods how much are you suppose to have to deal with. This sucks.
Moira
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Thanks all for your support. All the mets are fairly small. I have extensive bone and lung mets and a fair bit of lymph involvement. One kidney and my thyroid gland also have some involvement. Having said that apart from a persistant cough I am symptom free and feeling well. We are going to try Xeloda first and see how long I can stay stable before trying a more heavy duty chemo.
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Oh Shazza, what a thing to find out on your birthday. (not that there's a good time...)
I'm glad you have a plan in place. I hope the xeloda kicks the BC's butt.
Thinking of ((you))
kt
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shazza, i am so sorry to hear that news. not a great Birthday for you. you are in my thoughts. we will be here when you need us shazza. Flaming cancer. its a sod, BIG MONSTEROUS HUGS. to you XXXOOXX
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So I don't need a port anymore well not just yet anyway so instead I'm going in tomorrow to have my surgical wound debrided and re stitched and a new drain put in under local anaesthetic. My wound was healing but much slower than expected and the constant seromas were putting a lot of pressure on the it as well. As the oncologist won't start chemo till things are looking better I'm hoping as is the surgeon that this will get things moving along.
Hope everyone else is having a better week.0 -
Shazza so sorry to hear of your recent dx. I hope treatment is kind to you.
Thanks for all the advice everyone, I am hoping to get a sleeve and glove on Wednesday when I go to the hospital for my LE appt.
I had reflexology last week before my LE massage and think it opened up the lymph system and the massage was great.
Have got a chicken soup in the crockpot, perfect day to come home to the nice smell of dinner cooking.
Hope you're all doing ok.
Xx kk0 -
Hi Shazza & kiwikid.
I'm glad they are sorting out your wound so it heals better Shazza. I hope that goes well for you tomorrow & wish you speedy healing so you can get on with treatment.
Chicken soup sounds nice kk, perfect for today. Hope the LE appt goes well.
I am going to light the fire in a minute- need to be cosy on a day like this.
I'm waiting for official confirmation of my op date from the hospital before I tell my new employers I need time off already (feel a bit bad about that).
I hope it comes soon! Or I'll have to tell them anyway & hope it doesn't get moved.
Have a good night,
kt
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How's that healing going Shazzakelly? Have you got a chemo start date yet or do you have to wait? Take heaps of Vitamin C!
Kiwikid, I'm glad you got some LE relief from your massage.
KT - any date yet? Waiting is so tedious!
I've had a sick house in the last week. My oldest (11) has had a week off school with flu. She's finally back today and my youngest (8) is now sick! Roll on summer I say!
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Hi guys. I'm certainly feeling more comfortable now the new drain is in. I don't feel like I'm going to explode. The surgeon will remove my wound dressing tomorrow but hopefully the debride and re stitch will get things moving along. It was great having that work done under local anaesthetic. I quite enjoyed the whole theatre experience and being able to chat with everyone. Getting to go home after a cuppa and a club sandwich was a added bonus too.
Hope everyone else is having a good week0 -
Hi girls.
Shazza, I'm glad you're feeling better. Hope your wound is looking good today
KiwiMum, no fun having sickies. I hope your daughter recovers quickly & no-one else gets it!
Its raining now, so a good day to snuggle inside. I just finished my job before the worst of it (some of it is outside).
Still no confirmation letter re pmx- will have to let my employers know on Monday I reckon- a months notice so they can plan ahead- and if its changed so be it...
Hope you all have a good weekend
kt
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I hope everyone in Wellington is ok. Sounds like you've had some big shakes there.
How about you girls, Musical & midnight? Did you feel it too?
Hope things settle down again soon
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Hi KT, i was in count down when the earth quake struck, the darn lights were flickering and the displays signs swinging and the floor was kinda rolling. then we got a shake about an hour later, we home then and that was lighter.so we were ok. i would imagine musical would of felt those. hope all of you ok. xx00xx
Did you get that same rolling sensation musical,? makes you feel sea sick aye.
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Hey,
Yup ditto repeato of the last one. I knew it before I even climbed on geonet that it was Seddon again. It went on and on and on. That same crazy rolling in all directions rather than from one way as per usual. Im not going to tell you where I was when it hit, OK... ;-) but I yelled at my elderly mum to get in the doorway.
Felt a few aftershocks this time whereas last time I didn't.0 -
My sympathy to you all. Been there, done that!!
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Hey everyone - it's been a while since I checked in on here. I have just been busy coping with my weekly Paxlitaxol treatments. I was just driving back from Wellington hospital today (after treatment #8 of 12) and was stopped at traffic lights when the earthquake struck. I thought it was a big wind gust initially as the car started rocking but then it got stronger and stronger and I knew then what it was. So felt like I was in an amusement ride with the car rocking and rolling. :-) Was a bit worried about driving through the tunnel immediately after.
Anyway it makes you realise that we do have to enjoy each day as much as we can (live in the moment) as we could spend the rest of our days stressing about cancer and what ifs, buts and maybes and how long we have.....and yet an earthquake or a bus could take us out instead!! Have to find the beauty and joy in each day!
A good reminder to myself as have been feeling very 'bluk' lately - fat and ugly, bald and next to no eyebrows!! Plus my hand has been a bit swollen too - starting to worry about lymphodema.
Thinking of you all and sending love and hugs x0 -
yes, i reckon ,Kruise. you don't know that maybe its your last day, something entirely different could be closed curtains for us than our present circumstances, so live each day and thank God he has given it to us. that must of been freaky with the earth quake, sitting in the car. my bubby was too at countdown, i was in the shop. we from Palmy and we were feeling its after shocks as well. We were wellington last wek in Petone and driving back i was actually feeling gutted at the thought of those big houses right on the top of the clifts, if ever an enormas one struck. man i made sure that thought perished for ever. oh well have a good day and rest of weekend everybody.
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Hiya.
Hope you've all had a good weekend.
How's the paxlitol going Kruise? Glad the earthquake didn't cause major damage- an 'amusement ride ' sounds ok
Midnight, you made me laugh (DH wondered what I was giggling about)- I had just read your story on the Aussie thread about vaccuuming
v funny!I'm feeling a bit clutsy at the mo- threw my cup of tea all over myself & the desk/floor, luckily not too full (or hot)- but, what the... how did I manage it?
Nevermind...Take care..
kt
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