Australian Sisters
Comments
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Hi Ched
So sorry to hear about your journey so far - it really sucks doesn't it?! A friend of mine who has been clear for five years now said recently that she'd really like to get her hands on the travel agent that booked her on this journey - she wants her money back lol
I read somewhere that you can get some financial help if you have to travel for treatment, but I can't remember where I read that - in the all the information that was given to me by the breast care nurse I think - have you heard of it?
It's hard for those around us to completely understand what we are going through, and it's just as hard to try to explain exactly how we feel. I too find this site great as we all understand each other so well
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Ched - as Trisha-Anne said check if you are entitled to financial help with the travelling. I had to travel to Melbourne for most of my treatment (except rads thank god!), and I've just put in a claim for travel (mine was if you travel over 100km each way) and some accommodation costs (I think I get back 17c per km plus a rebate to put towards accommodation). I also got to claim the travelling I did for rads because I travelled over 500km a week for 5 weeks. I think it varies from state to state but there should be something there.
Good to see some familiar faces (well names!!) on here from the bcaus site. Sue so glad you were able to have your last chemo today!!!!!
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Hi Ched,
You sound as though you have had a very tough time. You mention you feel old on Femara. I finished chemo 4 months ago and started Femara, also have 3 weekly Herceptin. I still have tingling hands and feet from the chemo and feel old and my legs feel heavy. Haven't been able to work out what causes the old feeling. I was hoping it wasn't the Femara as I am on that for 5 years but perhaps it is. Everyone seems to be so different. Hope things go better for you soon.
Vicky
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Hi Trisha-Anne,
Thank you for your interesting posts addressing the Australian sisterhood. Like you I'm in Canberra and would love to catch up with you and share some information and experiences.
I have had a long history with this disease, starting in 1997 and culminating in my third recurrence in Jun this year when I required neurosurgery and lost my sight in the aftermath - my husband, Steven, acts as my scribe.
Currently I'm on Xeloda for bone, liver and lung mets. It seems to be working well but it is a constant battle to stay positive in the face of this hideous disease.
Best wishes to you and all the other ladies on this site. Hope we can catch up soon.
Susan
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Knock knock! Can I come in..............I know I'm a bit late but............I keep forgetting to come back.
Okay fellow Aussies.............I'm in Qld, Wide Bay area, almost cut off from the south at the moment, but used to be a Brisbane girl about 21 yrs ago.
I go to Royal Brisbane whatever-it's-called these days, never wait long for app'ts and, in fact, was treated like royalty a year ago when I almost had a life threatening emergency. Luckily for me, it wasn't, but it gave me an understanding on what to expect in such a situation.
I have been a member here and the bcaus site for just over two years and wish they had been around when I was originally dxed in '95.
We get financial help up here from the Gov't and Cancer Council, with both accomodation and travel expenses which, touch wood, I have only had to access once so far. Nice to know it's there though!
It's good to see so many girls from the 'hood' so far from home,
Sheila.
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Hi Ladies, thanks to all who have responded regarding financial help. I did eventually find out that there was financial assistance, however not until all of my surgeries and treatment was complete. Being directly sent to Sydney by my GP meant that I somehow fell into a black hole through the cracks, and did not become a statistic at our local oncology section at the hospital, and therefore was not advised of the assistance available to country patients. I guess being in Sydney it was not mentioned either, as I presume they are used to mainly treating city dwellers, so the subject did not come up.
Mind you, if that is the worst that I have to contend with, then I will be happy.
Ched
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Hi all....it is nice to meet up here and see same more familiar names...hi Sheila!
Aussieshed...there are a few from around your way on the bcaus site.Yes its tough having to go to Sydney for rads. I've read posts from others who had to do the same.
Annmark....we have quite an active little group in Melbourne who meet up from time to time. I was very pleased to see that your Dr ordered the oncotype test.It is quite rare to be offered it in Aust. so your onc must be on the ball...you are in good hands!
That test wasn't around when I was diagnosed (almost 19 years ago).There have been some great advances over the years.Herceptin is one of them Trisha-Anne !
sunny210 The Perth girls meet up too. I'm sure you will be made very welcome when you arrive!!!!!
hugs to all
jezza0 -
Jezza -
Thanks for the info. I'm really excited to make the move - except of course for all the packing, etc.
Sandy
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Yes the packing!!! It is a long trip. I went to NYC at the beginning of Nov. I absolutely loved it...NY...not the flight...lol
We'll keep in touch. The Perth girls are a friendly bunch.Closer to your move you might like to join the Aust. forum and meet them.Might be helpful chatting about places for treatment etc.
hugs
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Hi girls
Well - finally - a Canberra Girl!! Susan! Nice to meet you - although it would have been better under different circumstances, and you have certainly had it rough. Are you finished with treatment apart from the Xeloda? I have my chemo at the Canberra Hospital - would I run into you there at all? We should catch up for a coffee at some stage :-)
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Hi Girls,
Yes I did have my last chemo on Wednesday but I'm so so sick with this chest infection. The Onc listened to my chest before the chemo started and decided to put me on stronger antibiotics, I seem to be getting worse now. Very worried. I will wait to see how I am tomorrow and if no better I'll have to do something. I've just had enough.
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LML,
You poor thing i'm so sorry you are feeling so bad. Do you think maybe you should go to the hospital and get some IV antibiodics. You can get much worse over 12hrs if the medication isn't helping you.
As you said you are very worried... maybe getting checked out will put your mind at ease.
Kerrie
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Hi Kerrie,
Going to hospital scares me. I don't know why, perhaps I'll be better off there but I'm petrified of having tests done. I think if something else was found I'd not be able to cope right now. Surely if the Onc was worried he would have kept me in hospital or held off chemo. God I got so close to finishing chemo with no issues. I'm going to wait it out and see how I am tonight. I'm thinking that maybe the stronger antibiotics are just taking longer to kick in due to having chemo on Wednesday. I hope that's the case anyway. I just took my temp and it's in the normal range.
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LML,
The chemo... especially at the end of it as you are, puts our blood work results in turmoil, especially our white cells which help fight off infection. I think all the drugs have a cumulative effect and buy the end of it we are just rat shit!
I can remember feeling so bad that i was convinced there was something else wrong.But it's just the results of your body going through unbelievable stress. Thank goodness you are finished with the chemo.
If your temp is normal that is really good but keep taking it and if it goes up do something straight away.
You will start to feel better soon.
By the way.. i love you lab.
I have a golden lab called Samson who is 3 years old. He is so gorgeous and has been my constant companion over the last 12 months.
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Thanks for your kind words Kerrie. I certainly hope you are right.
My lab is beautiful but missing his walks through the park each day. He is 9. I also have another lab who is 8mths old, he's a white one and very cute.
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Hello Trisha Anne,
I am a couple of hours away from you on NSW South Coast. Like Suepen, I stay on the US breast cancer websites and their chat rooms because the data is from a wider source, and is more up to date than a lot of material on the Australian sites. There is also another very, very important difference to me - I have found many of the Australian sites and chat rooms unfortuately to be controlled by some narrow minded women who appear to think their sole purpose in life is to shut down any discussions whose content they have a personal problem with. Its actually appalling - the concept that ANY topic is off limits for discussion for any women with breast cancer because we are all so diverse and have such varying emotions. We are not cookie cutters experiencing the same responses. I actually had one grande dame who was a 10 year self appointed veteran of an Australian breast cancer website send me private messages trying to blackmail me into not expressing certain views - the emotional blackmail was claiming there were women with little children who would not see them grow up because they would die, and I should think about them before posting. This self appointed cheer leader ONLY wanted happy, upbeat and positive postings! Her ''method'' for achieving this was the aforementioned emotional blackmail of any women who expressed anger, despair etc. The United States has freedom of speech as part and parcel of its Constitution and a much more vigorous sense of entitlement to free speech, which suffuses the media. So apart from the better quality and more up to date information, I find the posts far more reflective of our full range of experiences and responses - with no small mindedness operating to censor us expressing our authentic views about what we are going through.
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Hi LML......Normal temperature is good, Sorry that you are doing is so tough at the moment. Its just not fair.
Hugs
jezza0 -
Hi LML,
How are you feeling ... hope you are doing a little better and the antibiodics are doing there job.
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Hi Girls,
Still not good. Antibiotics still not working. I called the hospital today and spoke to a chemo nurse. She spoke to a fill in Onc (mine is away) and he said it's pretty normal to take a while for antibiotics to kick in when on chemo and so long as I don't have a temp then to just sit tight and rest. She is going to speak to my onc tonight hopefully if he pops in and get him to call me. I had a rough night but feeling a bit more settled today. My jaw is really sore as well which is strange, not sure if I've been clenching.
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Sheila....How are you doing in the Wide Bay Area? We have seen some terrible footage of the flooding in Qld. and I think your area is pretty badly hit? The clean up after a flood is awful. I hear it hasn't reached its peak in some areas. Hope you're ok.
LML....Thanks for checking in although I'm so sorry to hear that you still feel like cr*p, This sounds weird but I have often had a sore jaw when I've had flu. I think its because I hold my mouth open to breath through while I'm asleep and its not used to being in that position? I'm not sure if you're stuffed up or not though if its in your chest....could be that you're clenching.
Aussieched....Good to see you in Australia....lol...been nice chatting to you at bcaus.
Fidelia.....I'm glad that you have such a great husband who helps you keep in touch with this forum. I'm sure you have made some great friendships here over the years.
Trisha-Anne...Thanks for starting this thread. Its a great site isn't it.
jezza0 -
LML i had a constant sore jaw throughout my chemo... i think it was a stress thing... i would clench my mouth when i wasnt well but particularly when i was scared and stressed out.
Hope you start to feel better soon.
God this treatment is just the pits. if we can get through this i don't think there is anything we can't conquer .
Take care and remember to drink heaps of water.
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Cocococo: I did post on the Aussie site for a little while but as they don't seem to have a thread for chemo for a particular month I ended up sticking with this site. The girls from my Nov09 thread are the sisters I never had. When I was diagnosed again in October 10, they started a special world wide hug for me. There are still quite a lot of us still in touch nearly every day.
I guess none of us has ever tried starting a thread for rads or chemo for a particular month on the Aussie site. Maybe someone should. I think this site had a much better layout eg the range of topics whereas, the Oz site just has primary bc and that's it. I have made one friend here who lives near my cousin in NZ - we write regularly and I'm going to make a point of going to meet her next time I can escape across the ditch. I would love to be able to afford to travel to the States/Canada to meet some of my Nov09 sisters - maybe one day.
Sue
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G'day Jezza...............we are doing okay where I live, most of the water is about an hour north of us at Bundaberg. We are lucky that our town has not had much flooding at all yet..........keeping my fingers crossed...............which is unusual. The day we moved in to our first house here, we lived about 500 metres from the river and it was rising! I didn't know whether to send the removalist truck back or just carry on. The river didn't reach us but the only bridge was under big water which cut all north-bound traffic off.
My son had to cover the flooding all weekend for 7 news while he had the flu...........I was quite worried about him wading through sewage laden water for three days.
Thanks for asking Jezza,
Sheila.
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Hey Sheila.....Did we see your son on the news....was he a reporter? Yes I have heard that it is a real worry about the sewage and also the SNAKES! ugh
Suepen...thats a good idea about a chemo month. I guess the Aussie forum has been a little small for that as only a few go through at the same time..but its growing and thats something to be looked into. I agree that such a bond is made and I have seen that happen a lot over the years I have been on this site.There is a Secondary section on the Aussie forum as well and the ABC girls meet up for chats in the chatroom which is fantastic.
LML I hope you are walking those doggies again soon! We still haven't got a dog. (we had to have our elderly one put down in October). Believe me we talked about the 4 year old staffie you mentioned on fb...just worried how a 4 year old would get on with our siamese who runs this household!
jezza
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To all Australian BC survivors - just a quick message about the mess that is the Australian Medicare rebate on breast MRI's for ongoing monitoring. In Australia, survivors only can get the Medicare rebate IF you are under 50 and have tested positive for BCRA genes. The BCRS gene test is around $2,000 by the way. St Vincents in Sydney charge $690 for dual coil breast MRI - if you get the rebate it ends up costing around $90. MRI's involve no radiation, which is a positive to me but they do require an injection of contrast dye. MRI's involve no breast compression which can be a serious problem with mammos after surgery. If you have tender breasts, painful scar tissue and/or seromas then compression mammos can be unbearable without pain relief, which seems to be uncommon in Australia! Apparently we are supposed to simply put up with retraumatising of our surgical site while perfectly simple and cheap pain control means are available yet the medicos choose not to use them. The gas the dentist uses for example could help, as could EMLA cream applied an hour before the mammo, or a local or even a tablet like Valium or Endone. I still cannot fathom the mentality of any medical professional who actively avoids providing pain control when it is such a simple and non-controversial issue. In fact, I say it is a human rights violation not to actively consider pain relief for all patients. It is also shocking that some of us are not having breast scans post BC because of the pain involved with mammos comopression and the cost of MRI's. MRI's are also far more sensitive than mammos, so they detect smaller BC sooner than mammos. The criticism of MRI's I read is mostly centred on their sensitivity - however ask most of us - we would rather have a scan that is too sensitive and picks up all anomolies for further investigation [false positives] than have a scan that is insensitive and does not pick up cancer till its much later on and eg., invasive. MRI's are better at detecting invasions early whereas mammos are better at detecting calcifications. I had mammos for 12 years biennially - I started many years earlier than mammo guidelines recommend because I had a couple of features that put me at a higher risk for BC yet when BC was finally detected , the KI67 index [cell proliferation score] was so low that an algorithm used by scientists to calculate this found my BC had been present for 13.8 years ie., the entire 12 years of mammos returned clear results when the BC was present. Women with dense breast tissue and who have eg., not had children or not breastfed can face false negative risks from mammos in the order of 60% or more. So for many of us in Australia, MRI's are necessary even if we are over 50 and even if we are not BRCA positive or our BCRA result is unknown. I would encourage any of you the contact your Federal MP and complain about MRI subsidies not being available for BC survivors who have been demonstrably let down my mammos in the past. Why persist with a screening technique in cases where it has been proven to be ineffective in a particular patient? It does not make sense.
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Coco: As you already know, I second that. If I had had an MRI pre surgery last year, I wouldn't be going through this again so soon - it would all be over. Lobular cancer is SO sneaky and is known to not show up on Mammos, so how many women are there who don't even know they've got BC. I was lucky that mine did show up then at such a small size, but the ductal cancer in the other breast was missed by BreastScreen QLD.
Something to add to Coco's post - if you are under 50 and have the BRCA gene, you only get MRI rebate if you have not already had cancer.
I have already spoken to my federal member and she thought I put a good case forward for MRI rebates. She asked me to email her an outline of the issues we face but I've been slack and haven't done it yet - been busy having multiple surgeries.
Sue
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Hi Girls
Sorry I haven't logged in for a few days. I had so much energy on Saturday, Sunday and Monday that I spent a lot of time in the garden catching up on all the things that haven't been done for weeks. In between garden I spent time napping lol.
Then yesterday I had my third and last treatment of FEC yay! Was fine until around an hour after getting home, then it seems I was hit by a truck. Felt quite queasy and developed a migraine. I had this on the last FEC treament (although not quite so bad) and the onc changed my anti nausea meds to stop the migraine - it didn't work. Slept from around 7.00pm last night to 7.00am this morning, and have come into work - feeling a lot better, but very tired.
I start my final 3 treatments (Taxotere) at the end of this month, and while I"m happy to be finished with FEC, I'm already worrying about dealing with the new unknown se's that will come with a new drug. At least now I'm half way there - apart from the 12 months of hercepen :-)
LML I'm sorry to hear you've had problems - how is everything going now?
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Hi Trisha-Anne, I hope you have recovered some more you poor thing. At least you are done with the FEC now. Hopefully the SE's of Taxotere will be kind to you.
I still have this infection, not too bad today, feel a little more upbeat. I am waiting for Onc to call me back to see if I need to change my medication or just keep taking it. I am starting to think he really shouldn't have given me the final dose of chemo but I would have been devastated if I couldn't have it.
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I'm wondering how all you Queensland girls are going? The floods look really bad, I'm thinking of you all and hope you aren't being washed away - so many have died in these floods, and now Brisbane is in trouble too - it's just terrible.
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Trisha-Anne - We're ok - we live on a hill. I lived here during the 74 floods so knew where it was safe to live. It's absolutely shocking what happened in Toowoomba yesterday - so sad.
Sue
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