Australian Sisters
Comments
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Alyson - say hello to my Uncle Jack while you are in Hawkes Bay - don't forget to go to Havelock North - love it there.
Chrissy - SO glad you are finally free - I will investigate knee options - I think I only need half knee replacements.
Gerri - don't leave us - we'll miss you
Racy - I've been thinking of seeing that lady in Spring Hill - Wesley Breast Clinic is too stressful.
Having the day off tomorrow - the pest man is coming and I have a bs appt - that will be interesting seeing they found some micro calcs the other week. I think that the MRI in October will tell if there's a problem - I can wait.
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Great news Chrissy
- at long bloody last she says! xxxxx 0 -
Kylie - so glad you are on the up, just take it easy though
Kate - did you talk to your onc yet?
Alyson - enjoy!
Jenn - haven't heard from you for a while - how are you going?
Sue - calcification hmm - at least they are small now.
Trish
xoxo
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Good on ya Chrissy, it's good to see we can get through things other than those starting with a C. ....even if they do give us a hard time.
Hi girls, I almost forgot that today was the 17th anniversary of my BC diagnosis. Wow.......wouldn't it be great if I COULD forget...........I guess it's the gift (?) that just keeps on keeping on! Spending all Anzac day of '95 worrying about the mammogram I had the day before and having to wait till the day after is pretty unforgettable for the sheer fear factor.
Where the hell did all those years go.........and how did they pass so quickly? I got some indigestion.....throw in a little hip pain, this arvo, and thought I might be facing the end times for a while there. For those who are allergic to too much info, close your eyes here!
Having gas when you have a 'stoma or Colostomy bag is like walking around with a whooppee cushion in front of you, you are not responsible for 'sounds' you might make in passing..........and ones body has absolutely no control when those sounds might occurr.......it's sort of like Tourettes of the rear end but/t in your front where you can't deny that you heard it too. The worst thing is, the bags I am supplied with sometimes don't have very good gas filters so, as most of you probably know, hot air rises, and I could gas myself to death or unconsciousness and no-one would know what I passed from/with......unless they were standing very close to me at the time.
I hate having an unusual pain and then having to enter that world where you don't know whether to go to the hospital or stay home to wait it out. Even though I have recently had the 'all clear' re new progressions, I can't quite seem to trust all those tests when I am hit by a major pain demon.
Anybody ever wondered if we all get the same stable boy?..... maybe that's why he doesn't get around to all of us.
Hugs to all,
Sheila.
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Sheila - I had to laugh at your description of gassing yourself. My brother was diagnosed with bowel cancer within a month of my dx, and I really felt for him and his hated stoma bag. He was very, very lucky, they caught his extremely early and he didn't have to do chemo and only had his bag in for 7 weeks. Of course his op was a big one, and compared to mine took a lot longer to get over - my SIL keeps telling me how everything to do with his op and recovery was soooo much worse than mine lol At one stage I had to tell her this wasn't a competition :-)
Hope everyone is well today - and Jenn - thinking of you - another treatment today?
Trishxoxo
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Just got a call from oncology. They want me to go in today to sign papers for Herceptin? I will be looking closely at what I am signing. Will also be asking some pointed questions. Very odd I think.
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Yay Kate. The forms are a contract where you have to agree to heart testing and you have to agree that if your heart function drops by "x" amount you won't qualify for any more Herceptin.
Hopefully they will have booked a heart test for you too?
Jenn0 -
Back from the bs - She's not worried about the microcalcs - said we'll see how the MRI is in October. They can't see anything on the ultrasound at all. I do SO like her - much better than the prick I had first.
Trisha - Steve missed out on needing a bag by 1/2 an inch I think - he was so lucky, but not so lucky in that he had to have chemo twice and he did get mets in the lung. But then he's lucky that's gone and he's still here.
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But you have already started Herceptin I think Kate? Sounds to me like your onc is doing some pretty serious backtracking! I think the Govt. requirements are for heart testing BEFORE and during treatment.
It will be interesting to hear what your onc has to say...
jezza
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It will be very interesting to see what your onc says about the heart testing after you've signed your papers Kate. All seems a bit dodgy - back dating, seems like they are trying to cover their tracks.
Trishxoxo
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Pest man been and gone - what a relief - now I have to put everything back. He said to leave it for a couple of hours while it dries, so I guess I'll be busy later today.
Kate - it's good they're finally doing the right thing!!!0 -
Echo booked in for next Saturday which is prior to my next Herceptin. I also got the forms for the other three echo's I will need down the track. I got a bit concerned about the cost as it's being done in a Cardiologists rooms, but they're being bulk billed - yay!!! I feel better knowing I'm having the tests. I could be picky and say that I should have had one prior to my first Herceptin, but at least I'm getting them done... better late than never.
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Just wondering...do you think you would have got them at all without your phone call?
I do have an interest in this...long story...but a case where someone had a VERY serious reaction with their frist Herceptin.
Most ppl sail through it but the guidelines are there for a reason.
So glad you are getting those tests done now!
Hugs
jezza
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Kate - you should still ask him about why you are not getting a taxane with the herceptin.
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It's not unknown for Herceptin without the Taxane in the USA. I personally feel that the TGA guideline for Herceptin use in Australia is too restrictive because it doesn't allow for choice to be made by either the qualified doctor or the patient. My main concern was the cardiac safety testing and I am so glad that is now happening.
My whole job is actually based on ensuring patient safety is maintained at all times - I can sleep a bit easier now knowing that Kate is being monitored :-)
Back to my quiet... I'm really dragging now with the overwhelming Taxol/Herceptin SEs and seem to have a cold with a cough as well. It wasn't bad enough for my onc to withold treatment today though so I have gotten through Taxol/Herceptin number 7 this afternoon.
My girlfriend from Melbourne is flying up tonight and Tony has gone grumpily off to collect her from the airport. It's a 2hr roundtrip so I understand his grumpiness... It will be nice to see her - especially since it's my 47th bday tomorrow (and my son's 17th on Sunday).
Luv from Jenn0 -
Happy birthday for tomorrow, Jenn :-) . I hope you feel well enough to enjoy it and your friend's visit.
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Well happy birthday for tomorrow Jenn! I am grateful for every birthday I have. I think all of us here on these boards can appreciate and really celebrate them.
I will ask my MO about the Taxtane when I see him next. I do recall when I first met him and we were going through my treatment plan, that I asked him about if I would have to have it. He said he didn't think it was necessary and 'would tell a porky-pie'. Maybe as I had no cancer in my margins he really thought it would be over-kill for me and given it's side effects, something that wouldn't benefit me. I will ask again though about it.
It's only because of you guys that I know half of this stuff. I would have been clueless about the heart tests otherwise. I must say I have been on tenderhooks since the infusion, you know, watching and deeply analysizing every twinge etc, so having the tests and good results (I hope) will give me piece of mind.
So I have just finished my first week of radiation. So far absolutely nothing to report. I think it takes me longer to get undressed and re-dressed than the actual zapping takes. Radiation burns don't tend to become evident until a couple of weeks of cumulative treatment. There is nothing to say I won't have any burns at all ... here's hoping at least.
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Happy Birthday Jenn!!!
Kate, how big was your tumour? Mine was 11mm and I got Taxotere. What are you using on your skin - I hope you have some aloe vera - I used to take it with me and apply straight after the tx. I used Vit E cream the first time and I still got skin breakdown under the boob - unavoidable if you are large. The second time I used Moo Goo but wasn't really all that happy with it as I think it made the skin too moist.
Hope you all have a lovely weekend. The pest man said not to vacuum or wash any floors for several days, so I will obey
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Happy Birthday Jenn!!!! It truly sucks that you are feeling the accumulative effects of treatment but there is a light at the end of the tunnel and it's getting closer all the time. Hope your day brings some lovely surprises! Enjoy your visit with your friend and if you are anything like the rest of us and I suspect you are, you will take full advantage of having her with you and chat constantly...............enjoy!!!!
Kate, yay for getting things going with the heart monitoring with your Herceptin!!! Here's hoping the echos are all good and show no damage at all.....ever! Glad your rads are going well but remember to use your cream often. I have also heard that emu cream is also a wonderful healer and protector for the broken skin of rad burns.
Sue, I would take full advantage of the fact that you are not allowed to wash or vac your floors for a whole week!......lol.......what and excuse not to have to do them!
Sheila so good to hear from you! it's been ages!!! Glad you are doing okay and I laughed myself silly with your story of the gasses!!!............I'm still chuckling just thinking of it!!!
Trish, I sure hope your brother is doing well now.
Oh yes, I am finally in my own house!.....yippeeeeeee! DH arrived at lunch time to pick me up and after a marathon shop that took twice as long as usual as I was dragging a bit....well a lot actually.........but we got it done and the cupboards are now once again full as is the fridge with all sorts of yummy veg. The leg is a little sore tonight but I guess that is just because I probably did a bit too much walking so I'm thinking that tomorrow will definitely be a rest day with the leg kept up as much as possible. I did the stairs for the first tome tonight and didn't do too badly...........thank goodness...........a little slow but I did get both up and down without too much bother so bathroom stops are not going to be a problem........yay!
Love n hugs all!!! Chrissy
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Happy Birthday Jenn. Just think by the time your next birthday comes around chemo will be a distant fading memory. Chrissy so glad your home. Kate glad your getting the proper care now. Hi to everyone else lol
Just back from taking my mum to the Australian Outback Spectacular at the Gold Coast for her 72nd Birthday- what a great night!! Highly recommend it for anyone close enough to go.
Hope everyone has a happy & healthy weekend
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Been meaning to run something past you ladies the last little while and keep forgetting.
I have noticed the last few weeks that Im normal on one side of my body, but ripply on the other side ( my masectomy side). When I look down at the sides of my waist, on the weird side,from the bra strap area downwards, Im a series of rolls of fat or swelling though there is no pain at all. On the other side Im smooth going into the waist and then only bulge in the usual love handle and then upper thigh area. I just weighed myself and Im 61 kgs and am 5 foot 3 so Im not particularly overweight. Even if I was, I would think both sides would look the same instead of having such a difference.
As I said no pain involved, im just spinning out a bit as it seems weird. Have any of you seen or heard of this? If so what is it? I do have mild LE of the arm on the ripply side too, but it rarely hurts and hasnt been a problem since I got a sleeve shortly after it started.
Was going to ask in the LE forum but thought Id run it past my aussie friends in case its something really dumb so I dont make a complete fool of myself lol
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Lyndall I was going to suggest that it may be mild trunkel lymphodema as those little ripples sound like fluid. Check with the girls on the LE thread I'm sure they will be able to tell you for sure.
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Thanks Chrissy. I hadnt heard of that, but have googled it now and it certainly looks and sounds like trunkel le. I need some new prostetic bras anyway so will see if I can pick up a camisole or two at the same time.
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Happy birthday Jenn!! Enjoy your day as much as you can. Having a friend visit while going through chemo can be a great lift.
Lyndal - I was going to suggest trunkel le, that's not nice. I really hope if it is, it's only mild (((hugs))) it really is one thing after another isn't it. It's not enough we go through deforming surgery, chemo and all the emotional stuff, but then things just keep going wrong. Ok - rant over - on with life.
Kate - the echos are a lot easier than the MUGA's I think, I have no idea what gets done with an echo, and while the MUGA's were no fun, I would have rather not had them, except we need to know what's going on with our hearts.
Chrissy - home at last. Enjoy your days at home girl, you deserve it. xoxox
Sue - lucky you - enjoy not having to vacuum for a while. Although I shouldn't complain, now my DH is a retired gentleman and since my back pain especially - I don't do any vacuuming - he does it all. He's a love :-)
Have a great day everyone
Trish
xoxo
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Kate - echos are easy - just like an ultrasound
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Lyndal, I also thought truncal lymphadema. The ladies on the LE forum are very knowledgeable and quick to respond, if you want to post any questions.
Do you have a therapist? I'm sure they would have this service at RBH. I have seen the physios at the Wesley, who are also trained in lymphadema management and can teach the massage technique.0 -
Happy Birthday Jenn, enjoy your day and your son's tomorrow.
Welcome home Chrissy, your own bed and home cooking, yipee.
I am so excited, we are moving back home. It was all dependant on FIL moving out (love him but can't live with him) and it's official. 50 acres of peace and quiet and my 18 yo son at home again.
A question: The house is filthy but I am terrified of cleaning products. Bicarb and vinegar won't cut it, any suggestions?? x
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Personally, I think you should hire a couple of ladies to go in and clean the house top to bottom. I googled and found this one for my area. http://www.discleaning.com.au/brisbane-home-and-commercial-cleaning-services-spring-
Im sure there would be something similiar for yours. I remember getting a quote a while back for a elderly friend for a spring clean and from memory it was going to cost about $100 which included the services of 2 ladies for 3 hours.
I really do think this would be the best option if you can do it. Cleaning products, specially in bulk are not good for peeps in treatment. And you shouldnt be tiring yourself out doing that sort of labour either.
Good luck
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I agree with Lyndal, Kylie. It would be good if you can hire a cleaner or get the family to do it!
Happy for you and will also mean a change to a better school for your young son?0 -
Thanks, I have lined up the family for cleaning. I went shopping on the weekend and my legs were so wobbly, my knees so sore and I was so tired afterwards that I have to accept limited capacity. Not the best time to be moving, during chemo, but I will take it easy.
Yes it does mean a better school for my son which I am very happy about. xx
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