Australian Sisters
Comments
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Hi ya Trish number2! Welcome to the Aussie girl thread.
I'm doing just fine and treatment for me is just Femara at the moment. How are you doing?
Love n hugs. Chrissy0 -
Welcome Trish! :-)
Hope everyone is just busy, not too sick to post?I've finished the Project training course, and wow - it was great! Now have to start 40 odd projects and remember how the software works lol
Trish
xoxox
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Trish I think everyone is still trying out the new format.....lol......now I've played with it some it's not too bad but will admit it is still a little harsh on the eye and does give me a bit of a headache after a while. There are still a few glitches aka the back to the top at the bottom of the page still doesn't work for me..............do you have any hassle with it or is it just me? I did let the Mods know but I shall do so again.
Doing fine at the moment and the knee is improving every day. The only thing that bothers me about it is after sitting for a while, even if it's raised, it feels very stiff for the first half dozen steps. Sure hope that passes quickly as it's annoying!
Glad to hear that your course is finished but now you have to put all that you learned into practice........I hate that bit as I'm always unsure the first time I do it. Hope it's not that way for you! Good luck!
Sure hope all you other girls are okay and just busy, which is a good thing.
Love n hugs. Chrissy
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Hi Chrissy - good to hear you are doing fine. When I've been sitting for a while I'm stiff all over and my first few steps resemble that of a zombie! lol
Yes - my back to top link works fine. Maybe it's to do with the version of Internet Explorer that you are using? I know I've had problems with another program - and had to download google chrome to use it properly. Mind you I'm using IE now (no idea which version though)
I'm a volunteer photographer for the Mother's Day Classic on Sunday - should be fun, except we are expecting a top of 12 degrees with possible showers yikes! Will have to make sure I have lots of layers on lol
Trish
xoxo
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Hi girls. My bottom button works fine Chrissy, maybe it is like Trish said and it might be more some setting that needs adjusting from your end. I like the new look to this site and find it easier to read. On my screen it just looks a bit larger and clearer font than before.
My echo was normal. I didn't go into specifics, but ONC just said 'perfectly normal' so I really didn't need to ask anything further. Now would you believe that on Wednesday when I was getting my Hercepting, there was a newbie cancer patient getting his chemo without a port and they were having trouble with his veins, so guess who advocated that he gets one - yep, me! I even showed him where mine was and told him how great it was. The only bit I don't like is being stuck with the needle (who does though). I'm sure the anticipaton of it is worse than it really is, but I was really conscious that he was watching me have it done so I was extra well behaved when they put it in and I never batted an eyelid (on the inside was a slightly different scenario). The nurses showed him the actual port that is inserted and I asked to look too as I wasn't shown it. I asked if mine was purple too, and they said yes. I like purple so it's nice now to be able to visualise what it is that is inside me.
Week 3 of radiation is finished and so far no side effects at all.
Chrissy I'm sure your knee will eventually become less stiff, that is unless you were living in cold old Canberra. I'm sure it would be frozen solid! Sorry Trish, but I'm still just in a t-shirt over here (mind you it is getting down to about 10 at night which is pretty chilly). It's amazing how quickly I've acclimiatised to this climate.
I hope you have fun Trish with your photography on Sunday. And for all the Mums/Nans out there I hope you enjoy the day with your families.
Kate xxx
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Trish good luck for Sunday and I sure hope it the cold weather doesn't keep the people away! I know you'll have fun either way.
Kate yay for you for championing the port! Who'd a thunk it?.....lol. So glad you are not having any hassles with the rads but do keep the moisturiser coming big time! Thank goodness your echo was all normal.....I agree nothing more needs to be said.
It's getting cold here as well, the weekend is supposed to be around 14 and the nights around 4 so it's definitely getting a bit nippy! I've got DD1 and two of the grands coming for the weekend so I'm looking forward to their arrival tomorrow. The other DD is in Cairns for DH's nieces wedding. She is representing the rest of the family. Hope you all have a good weekend.
Love n hugs. Chrissy
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Kate - do you put Emla cream over your port before you go for treatment? If you don't you should - expensive though.
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Hi all, just in from visiting friends. Used their computer and understand why some people are complaining about the new BCO - it was terrible on hers for a start then we logged in with Google Crome and all was fine.
Kate I was given the emla cream, oh it was so good. I would have paid for it if I had too.
Gee Chrissy it's not even that cold here, though it has been just on a frost a couple of mornings.
Big hugs to all
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Very quiet around here - am guessing it is the new format :-(
Did 9 of 12 Taxol/Herceptin yesterday afternoon. On my request the onc approved a dosage reduction on the dex (steroid) this week and I am sure that I feel better. Not so hyped today and actually feel like I slept better than in weeks last night.
Main problem now is that I think I'm getting hand/foot again. Got it after my 2nd FEC but it cleared quickly. Now my left heel is hurting/burning again when it hits the ground :-( So even though I felt better today I couldn't get out for a walk at all...
Hope all the mums have a good day tomorrow :-)
Jenn0 -
3 to go Jenn,hang in there mate. Hope everyone is alright and yeah its the new format keeping me away. hard on my eyes even with the reading glasses. Catch you all soon
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The format sucks big time - I only spend a few minutes and go
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Hope every one has a happy mother's day. Having family around for lunch so had better get a move on.
Big hugs.
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Jenn - only 3 to go yay!! Hope this treatment wasn't too bad - apart from hand/foot?
Hope all the mums had a great day yesterday.
I did the photography for the Mother's Day Classic, and it was fun - but so busy. My back and elbows were in agony by the end. 4.5 hours of standing didn't help much. Had a very teary moment when a good friend of mine crossed the finish line. I knew she was doing it, but thought she was doing the walk. She did the 5k run and was absolutely shattered when she crossed the finish line. She pretty much collapsed into my arms. She had filled in the card that some wear on their back, and her's said she was doing it for me and that if I could go through chemo she could run 5k. She's a sweetie :-)
It was a very expensive day though. On the way in I hit a roo - luckily I saw it and was able to swerve and slow down a fair bit, but it still broke my left hand lights and dented the mudguard and bonnet. I stopped and found it - I was more upset at the poor thing, it couldn't move but was still alive. A man who was only a minute or so behind me on the highway stopped. I asked him if he knew how to check for a joey in the pouch, but that wasn't needed the roo was a male - a young one too - lucky he wasn't full grown, he would have done a lot more damage. The man put the poor thing out of it's pain with a tyre lever. I couldn't watch that bit - but couldn't leave it there in pain and to starve to death in fear.
Then after I got home in the afternoon I had a very strange call from an asian sounding lady saying she was from Dell Computers asking me about why my husband's visa card had declined a purchase. We hadn't ordered anything from Dell - she hung up on me. Then I got a call from my Visa people saying they had declined 2 purchases from Dell ($2000 worth!!) as the validation hadn't been correct. So it sounds like someone has our visa details, so now have them cancelled and have to wait for new cards and set up all the automatic payments again, which is a pain.
I called Dell, but they said the people who check those sorts of things don't work on the weekend, so someone will ring today and hopefully we can find out who has been trying to use our credit card. I'll have to get my hubby a card with only a $500 limit on it for use on the net I think. It's a bad world out there.
Trish
xoxo
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Oh gosh Trish, yes an expensive weekend indeed. You poor thing with the kangaroo. That would have done me in, thank goodness for the good samaratin who put it out of it's misery.
Wow. What a wonderful friend you have running the race in your honour. They say actions speak louder than words and her actions didn't need any interpretation. You are obviously so special to her. I hope she recovers quickly and feels rightly proud of what she accomplished.
I wend to a Mothers Day church service with Sarah which was nice, and then I just came home to a still sleeping hubby. We went to a 30th birthday party the night before and Paul partied until 1.30am so he had a good sleep in yesterday.
Radiation fatigue has hit me. It's not too bad and nothing like chemo. But I have found the last few days I have a very deep sleep in the afternoon and when I wake up I feel like I am in treacle for a few more hours, just really exhausted for no reason. I'm fine up until about 2.00pm so I try to get most things out of the way in the morning when I have energy and am feeling normal.
Not much other news from my neck of the woods. Have a great week
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Hi there,
Poor kangaroo! So glad that someone came along that was able to help. Bad weekend for me. Felt OK Saturday but yesterday did not move out of bed. Truely felt like the chemo is killing me.
Hubby drove me to my follow-up appt with my BS this morning where we talked about the options for me if I decide to go ahead and have both breasts removed. No options right now as I have to have the rads due to having a positive node and not having the ALND.
She said though that in about January next year I should be OK to go ahead if I want and she feels that I will be a good candidate for pretty much any of the flap reconstruction options (actually, that basically means I've got enough fat in all the right places...). She would recommend a nipple sparing on my non-BC side and maybe even one on my BC side since my lump was nowhe near my nipple. She thought I could get a good result on both sides. She said the TRAM flap is the gold standard(?) but is also the biggest in terms of surgery and recovery time.
My DH came along but he really doesn't understand why I would want to do this although I have tried to explain the really high risk I face for local recurrance or new cancer in the same or other breast. I think he still thinks that once all this chemo and everything is done I'm going to never get breast cancer again, which is very unlikely as far as I can see. I just can't see me being able to turn around and go through all this again so would prefer to get rid of a lot of the risk.
What sort of reconstruction did you guys all consider or do?
Jenn
The only thing I wouldn't be likely to qualify for is TEs etc since I will have had rads.0 -
I'm an Aussie but I live in Sweden... a bit far maybe 0
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My 20yr old just texted me. Her best friend's mother died of BC this morning... What the hell is going on in our world that so many women are dying so young? This is the third of her friend's mothers from our suburb in the past 2 years. All in their 40's, all diagnosed not at stage iv initially. I'm so scared I'll be next (and so are she and all her friends I think).
Jenn0 -
Jenn, I know bizarre right - so much for this been an "old lady" disease. I was diagnosed at 45 and my eldest sister died of BC when she was 49. You asked about reconstruction - I'm not getting anything done. Hate the idea of more invasion of my body and scarring. I contemplated prophalatic removal of my other breast due to the genetic thing but decided that it is just as likely to metatasise to my lungs, bones etc and I can't remove them so why bother with a breast!!!! To be honest I have no real body image problem and will walk down the street with no prosthesis if I'm just popping to the supermarket - printed tops give good camoflage and most people never look at you anyway! And if they do, well I figure it is their problem.... give them an education maybe
I feel lucky - I have five boobs now although only one is real HA!0 -
I love your attitude Sian :-)
Jenn0 -
Hi Sian, what are you doing in Sweden?
Jenn, I hardly know what to say about your daughter's friend's mother. I pray we soon have the cure all. No other words can help.0 -
Hi Sian and welcome! Wow you sure are a long way from home!
Jenn, like Sian I have a one hung low and didn't get recon. I had planned to but when I went to see the PS he told me I had to loose 30kg before he would even consider doing anything. I said to him that if I could loose 30kgs it would have gone long before I saw him. Needless to say I was very angry at the time but over the years that anger has gone. Being stage IV I doubt that I could get it done anyway so now unless I am going somewhere very special I just wear an Ahh Bra with no prosthetic and if people don't like it?........well that's their problem not mine. So sorry to hear about your DD's friends mum. It's always hard to hear that another woman has lost her life to this aweful disease.
Awe Trish, sorry about the drama with the roo and the damage to your car. Glad you got through the day and that it turned out to be fun. Try to rest and recouperate!
Kate the fatigue that comes with rads is truly debilitating. You are doing the right thing and getting things done in the morning while you feel normal but also remember that even though you feel normal your body is still reeling so please don't push yourself too much.
Hope everyone else is having a good day!
Love n hugs. Chrissy
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Hi Racy, I live here, thank goodness.... best place in the world to be with BC. Free treatment and almost full income support with world's best outcomes. Feel really lucky that my work brought me here.
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Sian welcome - we'll give you your Aussie fix if you need it. Sounds like you are in a good place though. I chose not to do recon - I'm happy with the way I am, and really don't want to go through another surgery. I'll be 55 this year, so yes my remaining breast points more south than north and I feel that having one perky one and one saggy one would look a bit strange lol My DH is also quite happy with the way I am now too. I'm a bit like Chrissy - I do wear a foob to go to work or out, but not at home and if I have visitors and they don't like the one sided flat look - too bad lol
Jenn - I know exactly where you are at the moment. I was almost paralyzed with fear for a while - we have a pretty similar diagnosis. After a while I learned to just get past that, but it took a long time. You can't live your life thinking you are going to die from bc. Yes - you might, but then again, you might not.
I decided not to worry about something I had absolutely no control over. If I spent the rest of my life worrying about something that never happens, then I've wasted an awful lot of life. If it happens - then I'll deal with it. Yes - there are still times when I worry - but it's less and less now.
I'm not telling you to not go ahead and have the other breast off - I wish I'd done that originally, but was talked out of it. You have to do what is right for you. But honey - try to worry less - you need to try to get on with a healthy life with your family. It's probably not time for you to be in that space yet - you are still doing chemo - but hopefully it will come.
I'm sorry to hear that this lot of chemo is getting worse. I hate the taxanes! Getting a lower dose may help. Don't forget too that chemo messes with your head - so don't make any long lasting decisions until you are off the bloody stuff.
I'm thinking of you sweetie xoxox
Kate - I'm thinking of you too with the rads - rest and take it easy.
Trish
xoxox
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Kate - you should find you cope well with rads - most chemo patients do
((((((((((HUGS)))))))))
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Hi Everyone. Some good news from me. Sarah my DD and only child 25 got engaged last night? Neil (BF) came and asked us if he could marry her and Paul said "Gee, are you sure you really want too!" We are very happy for the both of them. He's a nice guy and she's just over the moon.
Another one of life's little milestones....
Love kate x
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Oh Kate - that's such good news! Is this the boy from Canberra?
I'm home with a bad cold. DH came down with it last week, and I told him to keep it to himself, but he just had to share. It's the first cold I've had in 20 months - I was in the middle of the last one when I got the bc dx. Was hoping I wouldn't get another one lol
Trish
xoxo
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Hi Trisha. No the Canberra boy is 'so yesterday'. Sarah met Neil in January and they have been hot and heavy ever since. I guess when you know the one, you just know. They sure are incredibly happy and so lovely to see.
Buggar about the cold. You know I don't mind a cold so much, it's the evidence of a weak bladder that I can't stand
.I'm a bit worried about Paul. He caught my cold about 6 weeks ago, and he just continuously coughs, it is especially bad in the mornings. I actually told him this morning that I was worried about it (it's just a dry one). He actually said "hmmmm" instead of his usual "no it's fine" so I think he is thinking it's more than just a pesky cough that won't dry up. I will give him another week and make a Dr's appointment for him if it doesn't clear up.
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Congrats Kate, wonderful news!!
Ive had good news today as well. Still NED yahoo. Saw the BC with the results of the US on the suspect area today and its his and the pathologists opinion that the changes in the breast are not suspicious at this time. What a relief!!!!! I was really worried after all the biopsies and unconfirmed stuff from Nov
I do have mild lymphodema running down my side but nothing to be alarmed at and he does not expect it will develop to be anything of major concern which is another blessing.
I had lots of questions to ask him thanks to BCO and got answers. He told me anyone with lymph involvement had a 50% of recurrance but with 3.5 years down the track and no recurrances yet, Im down to 20% and the longer I go NED the better the % becomes. I put this in there for anyone else who has wondered about that lol. There is peace of mind in stats sometimes, at least in my mind. Also arimidex v tamoxafin - he said tomax was actually good for the bones, so if my bone density scan in 6 months shows further deterioration, we will switch me to tamox before thinking about further biphosphanates. The pain from that first infusion was unbearable plus I broke 2 teeth in the 6 months after, so if I can go without them I would much prefer to do so.
It was nice to meet with him and ask intelligent questions thanks to all the ladies here and the BCO site. Hope everyone else has good news this week.
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Wow! Congrats Kate!!! I know the feeling of seeing your DD happy as mine got engages a few weeks ago. Mind you, she is a little older (39) and had given up finding 'the one' but it just goes to show that no matter what age you are there is definitely someone out there for all.
Awe Trish sorry about the cold..............I haven't had one for years and don't want one thank you.....lol......I guess it's the treatments that help to keep them away. I can just imagine a cold bug checking out our systems and seeing a BC with treatment system and packing their bags and heading onto the next person quick smart! Suyre hope you get over it quickly!
Yay Lyndell!!!!! That's really great news!!!! and the percentages are good to hear as well.........not much good for me but good for loads of others......lol
Winter is definitely here! I've had the fire going pretty much non stop for the last three days as it's been so cold! I like the cold but this year it just seems to have hit too quick and not given the old body a chance to acclimatise.......lol.
Hope you are all having a great day!
Love n hugs. Chrissy
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Sooo nice to read Aussie voices (?!?)...
Feeling strange today. Got my PICC line out after 7 months because now I am allowed to take my chemo drugs as pills. I keep looking at my arm in wonder and feeding my skin with Lucas Papaw Ointment (I drag big tubs of the stuff with me all over the world - its my first aide kit!).
My lovely onc told me today that I have another 5 weeks of chemo, 2 weeks rest and then 5 weeks rads - so hopefully finished by August 2nd YEAH!!!!!! I was diagnosed Sep 5 2011 so it will have been almost exactly 11 months of treatment - What the F&^%$
But all is not really so good - I have really quite bad pain in my left hip (that comes and goes according to the chemo cycle) and zero appetite (have lost 9kgs in past 10 weeks). Have told my onc (who I trust completely), he says my bloods look good but we shall see what happens with the next chemo cycle. I'm RCBIII and thinking that I have got mets already - before even finishing treatment. I suspect that he is thinking the same but sees no point in investigating cause we are already doing the treatment for mets (but not calling it that - calling it second-line chemo cause my first-line failed). Today he said we need to begin the radiation soon because the mastectomy was mid-Feb - already a long time out. and get me onto Tomoxifen as soon as chemo is finished - not waiting for end of rads. I think he is protecting me.
So strange - I haven't told anyone in my family (I'm single and all my family are in Australia - while I'm in Sweden). My eldest sister died from BC in 1999 (5.5 years start to finish for her) and so I knew I couldn't tell them about me over the phone- but treament has dragged on so long with no gaps that I haven't being able to get back. BUT YEAH tomorrow I'm booking my flight to Oz for my nephew's wedding in October... Can't wait to get there (even though I will have to tell eveyone and I just know they will be angry, shocked, upset etc and these are emotions that I no longer relate to).
A bit tough I guess, but I'm feeling increasingly very detached from all of this; just letting it wash over me. It is all just kind of technical and happening to someone else.......
And then I read about all of your good outcomes and I smile...... one day I will be me again .....
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