Australian Sisters
Comments
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Trish is right, because I too am wondering why my HER2+ cancer was not treated more aggressively the first time last year and now I have a recurrence. It is our right to get a second opinion. Good luck Kate!0 -
Kate....of course you can ask me, you can ask me anything you want. I see Albert Gan at The Mount. I believe he is hard to get into for new patients, he works with another onc....a lady called Dr Chan, who I've been told is very good but her bedside manner leaves a lot to be desired!! Albert is very well respected & highly praised in the world of oncology. I also went for a second opinion with some Professor when diagnosed but went back to Albert.....I find him very knowledgable, open to anything I suggest & an extremely gentle & kind person. I am a private patient but I do know he works at another hospital......I think Fremantle in the public system. He always says 'are you concerned' if I have anything to report & will order scans immediately if that's what I want. I could find out if you like. Call up your GP & ask for a referral. You are sounding a lot more 'positive', I do hope you're starting to cope a bit better......
I do agree, 5.00 am on a Sunday morning is rather early for a catch up! I know I said just call & I'd be there but there are limits.....lol. Look forward to seeing you next trip up to Perth....:)
I'm feeling much better today....been up since the crack of dawn (not quite early enough to meet Kate at 5.00 am!!) so my poor battered little body has obviously had enough sleep!! I just have to finish the course of horse tranquilizers.....lol
I felt my grandson kick yesterday......another special & joyful moment & a memory to keep with me forever.
Annette...bless your mum for holding us in her prayers xxx
How is everyone else? I can't get past Kate & the other posts seem to go beyond me....sorry ladies!
(((Hugs)))
Karen xxx0 -
Karen, Kate is in a place where you are or similair and therefore you can both meet each others needs. There are ladies that i love on the boards, but they talk about cancer issues that are above my undertanding, as i have not had to deal with where they at, but i am there more for support of them and ladies like yourself and kate, i find Chrissy, trish and jenn and Kylie. ladies that are knowledgeable and inspiring, you all are, and i ask things, not so much of you, as you have enough to cope with, kate also has, i would rather show my love and support to you and be there for each one. i love our Tammy, she is so supportive and kind and i miss Linda and Racy and of cause Alison is also a honey. Everybody is special and the Nz ladies, that i know, we all have the one thing in common, but our journeys are different.
But guess what the end of november is coming close. yippee. NO MORE DRIVERS. one of them is having an interview on tuesday the other one is going to work for the other owner driver as a temp over xmas and the other one is taking one of the runs as his own that he is doing now for us. we still have the run that BIL will be doing. he made me so mad the other day that i told Hubby that when bil gets old and past it, he is going to a nursing home. (in Aussy), lol sorry girls, lol and Karen sorry i am sending him to Perth. as far as possible away, though.
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Kate, a second opinion is a very good idea..........by doing this you will find out if your present onc is up to scratch and if not you have a good opportunity to change right now. Delaying a small amount of time is not going to make any difference so go for it girl!
Karen I'm so glad you are feeling better! I laughed out loud when I read your FB post regarding the changing of the sheets........that's something my DH would do.......lol.
I asked my DH to turn the stove on under the veg the other night as what I had in the oven was almost done. He was in the kitchen so rather than walk down the stairs again I called out to him.......bad move! When I went to the kitchen twenty minutes later expecting to dish up I found that he had not turned the flame under the potatoes. When I asked him why he said he didn't see them........really? are you kidding me? There was only the two saucepans on the stove top and he didn't see one?! i just shook my head in amazement ......... needless to say, tea was later than planned.
Having a relaxing day as I have an old friend........like I met her fifty years ago coming to stay over night tomorrow......so excited!
Enjoy the rest of your weekend all!
Love n hugs. Chrissy0 -
Kate - when I got a second opinion I was worried my onc would think I doubted his judgement. Then my hubby said it is not about him it is about you. If you are even thinking about a second opinion do it - if the treatment is the same then you have reinforced that you are getting what's best. If it's different then start asking questions. X
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Kate......just popping in to let you know I'm thinking of you today & pray you get some 'hope' today & can walk away feeling better & slightly positive......ready to take on the world girl!!
(((Hugs)))
Karen xxxxxxxxxxx
PS.... My onc knew I got a second opinion & had no problem with it, in fact encouraged it!!0 -
yes Kate am thinking of you. loads of hugs xx.
Karen, hope you feeling better today. take care. xx
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Hey you lovely ladies. Thanks for the warm "welcome back's" from Aussie, Trish, Kazzie, Midnight and Chrissy. Much appreciated. Chrissy, sorry I can't come to Sydney but thanks for the invite. I laughed over your DH and the vegies. I can just picture that.
Lots of good advice going out to Kate - I agree that a second opinion is always a good idea and Kylie had some really good advice when she said it's not about the oncologist's feelings, it's all about YOU. I am really impressed with this support network - all of you have shown so much love and support to each other. It makes my heart swell up.
Kate - I have a couple of articles on my website about dealing with metastatic cancer, I'll post the link to one of them here. I hope it helps you, Kate. http://marnieclark.com/offering-hope-to-those-with-metastatic-cancers-raise-your-vibration/
My oncologist was Dr Alex Powell, he worked out of Sir Charles Gairdner Hospital and also Joondalup hospital. Young, energetic, caring, he had all the right qualities for an oncologist. I liked him a lot and definitely recommend him.
Sending love and hugs to all of you today, and especially to Kate. xoxox0 -
Hi all
Back from my little stay in Christchurch. Had a wonderful few days now I just have to write up the report.
Kate sending big hugs and for you as well Karen
Big hugs to all0 -
Kate, how are you doing and how did you get on yesterday.? hope you are ok. big hugs xx
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Hi ladies, this morning I went to see a dietician who took my blood pressure and found it to be high. I went straight to my GP and had further BP testing and an ECG and have been prescribed blood pressure medication.
It's frustrating as I am not overweight, eat healthily, don't smoke, have zero stress and have increased exercise. But I do have very strong family history.
I start medication tomorrow.
I do want to lose a few kgs to reduce bmi from 24 to 21 so I am starting a formal weight loss program through a local private hospital. I'm hoping to be thinner by the time we meet in Sydney!
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Thinking of you Kate0 -
Hi Racy, i was having very high blood prerssure and since i have been going to the gym, it has dropped, i have lost 5 cm off my tummy and hips and 4 off around my boob area, i have lost about 4kg since august and blood sugars gave dropped as i am diabetic, am going to another three months. my bp was 150/ 100 for weeks and now the diastolic back down to 88 and even went down to 130/83, so quite pleased. i go to a diabetic, people who have medical problems gym and you are monitored with BP, heart and your blood sugar taken frequently, i have another 3 month and then i am on my own. hope you be ok on the pills and will help you. hugs xx
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hi Ladies
I haven't posted in this Aussie section before but noticed a few Perth sisters on here ( even if some jump across from the US to be with the best in the west
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You mentioned Perth onc's a page or so back ... I am actually under Prof Chan and find her to be GREAT ( so far
. Yes she is brisk and doesn't mince her words but she keeps me in check and what you see is what you get. She is Very efficient and no nonsense .....maybe ask me again in 20years if her chemo works )))
Anyway I will keep checking in and am up for a Perth get together maybe one day0 -
Thanks for your insights, Midnight.
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Hi all
Noncompromises I live in Perth, there's a few of us on here.
I got my surgery date today, 25th November so I need to ask for holidays again, just before Christmas, don't know what they'll say. I've also got an appointment on the 18th at the plastic surgery clinic because I'm having a different surgeon. I suppose there's not much I can do as I'm going through the public hospital.
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Hi Racy
Sorry to hear you need to go on medication. Sometimes family history can be hard to shake. I've always had the opposite problem, my BP is too low. Main problem is if I stand up too quickly, my head spins. These days what with aches, pains and arthritis, I tend not to stand up too quickly, so problem solved lol. I hope you enjoy your new exercise regimen. Look forward to seeing a new you at the end of the month.
Nocompromises there are a lot of Aussie Girls in Perth - must be a good place to live!
Kate hasn't been on here to update, but I got a text from her on Monday. She's been to the onc and is now staying with her MIL, so may not have internet access. Her head is spinning too I think. She's got an appointment to see a radiologist tomorrow to get some rads to ease the pain in her back. The good news (so far) is that it doesn't look like she has lung mets - what ever is showing up there, they think is scar tissue from a previous infection. Hopefully she'll get on here soon to update us all.
I'm going well, pain is pretty good at the moment, only a niggle here and there.
I'm so looking forward to seeing you all again in a few weeks.
Trish
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Trish, glad to hear that kate maybe free of lung mets, am sorry that she is in pain though. I hope that your pain keeps away too. thanks for the update. If you talking to her remind her we are all here for her and send her our love. xxx
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Hi everyone
Noncompromise....another Perth girl here (the one that said Dr Chan was known for her not so good bedside manner!!!!). Thanks for the update.....I did say she had a very good reputation & she does work side by side with my onc - Albert Gan - so I have possibly been sitting next to you in the waiting room....lol
I too have had a few texts from Kate & yes, her head is spinning but she is being very strong (we don't get much choice in that department!!!) & dreading telling her daughter. For me, by far the hardest part was telling the kids & I always put on the 'strong & positive' mum for them, natural I'm sure. I suggested to my hubby that we don't tell them.....lol.....a bit hard to hide it.
Racey.....I'm sure you'll be fine on the BP pills but don't beat yourself up....you haven't done anything wrong, it's obviously genetic. Good luck with the new diet/exercise plan. You'll be looking HOT for the get together....lol
Aussie...great news re your surgery date. I bet you're excited & nervous at the same time! Which hospital will you be going to?
Well, must go shower & dress, off to the hospital with DD to see the doc & discuss her birth plan, she broke her back in a car accident when she was 16 & may not be able to have an epidural because of it. She has made up her mind she wants one if she can!!! So should be interesting.......
(((Hugs))) to all.
Karen xxx0 -
Hi everyone - I must say it's been a beautiful morning here in Perth today. I'm really enjoying our new digs, we are surrounded by roses that are blooming profusely and I was out trimming them this morning. Garden therapy!
I wanted to say "hi" and "welcome" to Nocompromises, glad you joined us. Karen, wishing you and your DD a wonderful day and I'm so excited for you! Thanks for the update on Kate, thanks also to Trish. I've been so very concerned for her.
Aussie I'll be thinking of you on the 25th.
Hugs to all of you.0 -
Hi goils!!!
Karen sounds like plans for the arrival are heating up.......soooooo exciting for you and your daughter as a new baby around sure does change the focus of life. I hope she can have the epidural as it will make the birth so much better for her.
Welcome Nocompromises! You will find that we are a pretty good bunch of birds.......lol......and as the others have said, their is a gathering happening in Perth........is there something in the water?.......lol. Sorry for the levity but sometimes it seems to help. In all seriousness, this thread is a great place for support and a chat with others almost in the same time zone.
Mclark it sounds like you are settling in well in the new digs.......this time of year the weather is great but get ready, the summer is about to arrive!.......lol.
Trish, good to hear that your pain is a little better but as nosy as I am, I hope to hear that something has been done about it. Pain can be dealt with but the reason for the pain needs to be found.......it doesn't just happen.
Ye, I too received a text from our Kate and she does sound a little more positive in dealing with all of this. I think when the onc told her that he didn't think the lung things were BC it gave her a huge boost and I know the rads are going to help her pain level. Hopefully she will post when she can.
Racy, I'm also on BP pills. Mine was just fine but after my dx with BC it started to go up so meds were prescribed. Quite often we blame what we eat and how we exercise ....or not.....for having high BP but in all truth, many, many people get it just because they are getting older and for no other reason.
Yay Aussie!!!! Finally a date for your surgery.........soooo exciting for you! The timing could have been better but just think, by Christmas you will be well on the way to being healed and feeling a million dollars! Good luck with the surgery!
Aly good to see you home again.......glad you enjoyed your few days away.
Hi Linda! Hi Annette!
I had a lovely couple of days with my friend and we did a whole lot of chatting........lol.......there was so many years to catch up on and many laughs to be shared over our antics as kids. Hopefully we will do it all again soon.
Yup, summer is definitely on it's way.....boooo.......I much prefer Spring......lol. It's been hot here the last few days and that means time for me to start hibernating as I don't deal real well with heat as it makes my lymphoedema act up and that is sooo uncomfortable! Sigh.....at least I have many projects to keep me busy and I've even decided to paint my kitchen as well as all the cupboards and shelves.....it is going to take me a few weeks to get it done but its something I can do a bit at a time. The walls I will do one at a time as well so my arms don't get too sore........well that's the plan, let's just see if it happens or not.....hahahaha!
Love n hugs all! Chrissy0 -
Hi Ladies, well things were starting to look up for us with the trucks, no more drivers after Nov, that remains the same. But the guy who had the accident, we let have a the day off to do a job interview, tells us last night, that he is finished and today starting a line haul truck job at three. he has to drive up to Auckland and get unloaded and reloaded and come back, well its a 7 hour drive one way which by law he is supposed to have a nine hour break between, and apparently the driver before him just did the same thing and quit on the spot to that person who owns that company, now our driver is told he is getting 22 bucks hourly with the new person, which is good for over here, but at what cost. The line haul trucks that work at our banch, drive to a certain area and swap. so they get only the legal amount of hours driving. our guy is already proned to accidents, has three up his sleeve since he rolled the truck, not big ones, just running into the bank, by cutting the corner and damaged the indicators, knocked the telecom pole over somewhere else and no phone for about 5 people til fixed and dented the ther draw bar on the trailer we are renting.OMG the big thing is now i have to find another person for 3 weeks, This guy had already signed a contract to give a months notice, ie stay with us til end of time, if it had only been a week, would of been ok. Roll on november, while our trucks will stay intact now, it was bloody inconveient. Could have him up for breach of contract, but ah whats the point as we finishing anyway, i might have to have some alcahol that night to celebrate. i do worry wth his track record, whether he is going to be safe travelling all those miles.and not taking out inocent lives or his own and the worry of his diabetes, he is insulin dependent, they get really tried. i really hope it will be ok. we not sorry to see him go, had cost us alot of money, don't deny him wanting to get a job, but why did that other guy take our driver, yea of cause the dollars. Oh well thats society. long gone the handshakes and the written signed contracts obviously don't mean much as well.
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Hi Girls!!!!
Well, I am home after 3 days of being overly molly coddled at my in-laws as Paul had to fly back to work on Sunday. He wanted to stay here but there will be another time when he can stay with me, when it is needed more. I have family support down here so I have not been on my own. My inlaws hearts are in the right place, but I think they think I'm on my last legs!!!! Thanks everyone for your thoughts for me during this time. They carry me.
It has been bloody awful and very scary but I have my pain under control now thanks to Endone painkillers (morphine), which has made a huge difference to my emotional state. I mean not being able to feel anything now means I'm fine (right?). Down side is I am on another planet for most of the time and am well and truly buzzing. I've been reassured that radiation will greatly aleviate the pain, but I'm not sure when I am to start that. I am having more tests and am going to see the Radiologist to be marked up next Friday, so I will find out then I'm sure. Until then, I'm popping the pills
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Marnie, I do like the sound of your young Dr up in Perth. I like my Onc down here. Many don't, but I get on just fine with him. At this stage I am only going to have radiation, and follow up scans to check if it is regressing (?) if that is what they call it. My onc said he would keep chemo up his sleeve once he see's how it responds to the radiation. He too assured me that, like Chrissy, there are many Stage IV's who have carried on full lives for many years. So I am hopeful, but I'm also not blaise about it either. I was a bit too accepting the first time around that mine wasn't anything to really worry about and my treatment was more just a precaution. Well I've learnt a lesson now haven't I.
I am wondering if it means that the chemo didn't work for me properly? I am quite resistant to a lot of drugs, we had years of fertility treatments to get Sarah, and I know that I always got abysmal number of eggs for collection compared to most ladies who would get 10, 20 or more. I was lucky to get 3!. So maybe the chemo didin't work? I must remember to ask about that at my next visit.
I'm meeting Sarah in Mandurah tomorrow. Í often meet her there as it is half way and we usually have a great catch up, lunch and a movie. But tomorrow I need to tell her about the progression. I did not want to say anything at all to her until I knew for certain. I really wish I could not tell her at all.... and the thought has crossed my mind more than once. But I think I'd be mighty upset if the boot was on the other foot and I wasn't told, so I will do the right thing.
Oh! and I guess there is an upside. I've lost 5kgs in the past month. I'm not even trying, but I think it's the body being under pressure and in pain.
OKey dokey. Now I will get off here, read all the previous posts fully and write again about all your news.
Love to all
Me xxxxx0 -
Kate I'm so glad that you have the family support (all be it molly coddling...lol) it's good to know it's there. Most people who do not have cancer don't understand that stage IV is not instant death, they like us have to be educated to that thought.
You will marvel at the difference the rads will make although it can take a couple of weeks to get the full benefit but one thing for sure and that is in the area that is radiated it does kill the beast!....yay!!!!! I've been on an AI for four and a half years with one change and so far so good, I'm still stable so hopefully you will do as well.
Yup, hard day tomorrow but just take a big deep breath and explain to your DD the way it has been explained to you and that it is not the end of your life, just a change of direction. I'm sure there will be some tears but that is also normal for both of you.
Mmm......I think I've been a mum too long as I have a tendency to take you all under my wing.......I know you know what to say and what to do so I will just send (((((hugs)))) for both of you.
Love n more hugs. Chrissy0 -
So good to hear from you Kate. Glad the pain is under control and rads to follow soon. Hope it goes well with Sarah who I know will want to be there for you through this. Wish you were in Brisbane so I could visit and give you a hug.
I keep thinking back to our Brisvegas reunion where you, Trish and I were sitting and smoking on that lovely balcony and gasbagging about anything and everything for hours on end. I haven't forgotten Chrissy's visit to our balcony either. What a great time we had.
Take care hun0 -
Thinking of you today Kate....it will be a tough conversation & very emotional but you will feel relief once it's out there. Hopefully you're as 'lucky' as our mother hen Chrissy & no chemo needed for years to come.....xxxx
Our garage door broke yesterday.....I drove out of the garage & the bottom panel fell off!! All I could think is 'thank god it didn't land on my lovely new Jaguar!!'...... So we now need a new a new garage door!
Speaking of chemo, I think you all know I'm on Xeloda & it tends to have a very bad effect on hands & feet, well my hands now have cracks.....like cuts.....in them! It's very painful & not sure how to overcome it. Probably can't & will just have to put up with it. I see my GP on Tuesday & will see what she suggests. Good news is though, I'm over my virus & feeling good again (just tired)...... Lunch & shopping with my sis today....:)
Take care lovely ladies.
(((Hugs)))
Karen xxx0 -
tH
Hi girls, these are a couple of pics at my mum and her twin brother, 80th just in september, cutting the cake and the other is mum and my older sister, middle one and her Grandaughters, Harriet, older girl and younger one is Aleka. and the bottom one mum and her bro relaxing, later and mum with the Dad of the two little ones, Lewis.. Iearnt finally how to insert these photos on here. the photo on the top is My aunt, mums twin bros wife and hubby and Annette( me)
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Kate, I want to send my very best thoughts for a wonderful outcome with your treatment. The pallative rads are miraculous and I find I am slowly weaning myself off pain relief as it's really only my arthritic pain I need it for as well as I feel sick if I don't take it (addiction). Last year I was sooo sick and using a walker and now I feel like I am getting better after having a serious illness and getting back to normal lol. You will have a life, it's incredible what they can do for us. I am pasting my update I have put in another thread so you girls know where I'm up to. Sorry I am not up to speed with all the posts I share an I pad with my son who needs it for uni.
:wave: hi, I have just got home from onc and bone strengthener treatment and filling anyone thats interested my results. I finished abraxane chemo and was given afinitor combined with Aromasin tablets to take until I have progression. I have been taking the combo for 2 months and have got over the mouth ulcers thank goodness but have skin that without warning will start itching , and scratch my back in bed sometimes till it bleeds where I had the palliative rads to spine.i have been feeling pretty good overall and believe if I put any anxiety out of my mind it's not really there lol.
I saw my oncs offsider and preferred him to the last young girl I saw. I went through the usual of him not telling me straight up what my results are but more interested in how I feel as my tumor markers have been rising steadily, and in the last 2 weeks gone from. 74 to 142 which indicates something is going on. I always prefer to have the glass half full so asked him if it's possible it's a flare from the new medication and he agreed it certainly is possible.
The wonderful news is there is no further bone lesions and are stable and the cancerous nodes around heart and lungs have gone, yay! There is a area in my lower left lung that has no fluid but a white feathery area has appeared that usually would signify I have an infection, but I feel fine. He said this could , on further questioning could be cancer. Also there is a tiny 7mm spot on my liver which could be an unidentified node that's always been there and missed , or cancer of course.
I asked if I would continue on the A/A combo or have to do chemo ( no way I want that this soon) and he said he would discuss with the boss.
He came back and said "Good news" your onc thinks the lung issue could be just the result of the medication you are on, so will continue with the tablets and have a lung x ray in 4 weeks to see what's going on. I know the afinitor can give you serious lung issues, but at this stage I have no effects from whatever is going on.
I had 2 blood pressure tests, last week was high,and these 2 were an hour apart and the first was normal and the second was high! Go figure.
So I read my report and they say that suspected areas in lung and liver could be metastasis, but in my heart I don't think they are, but of course that could be wishful thinking. He said tumor markers can be unreliable as many that rise are nothing and others that are good have progression which I knew anyway.
Will continue on my merry way. Love to you all. Gail. :grouphug:0 -
Gail, thanks for keeping us up to date. Hugs to you too.
Karen, I think Jenn had some info on cracked hands and feet from a trial she was running? Glad the Jag didnt get hit.
Kate, it will difficult to tell your daughter but I am sure once she comes to terms with it she will be a great confidante.
Midnight I got all excited and thought we would see a photo of you. They were lovely photos and it looked like a wonderful occasion.
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There were not any clear pics of me apart from the top standing with my hubby and aunty, if some more come out she sends, i will post one, but the ones i have seen, i look like blown up baloon and would not want you to see that. that was all the problem with my thyroid,and went all puffy.
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