Australian Sisters
Comments
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Morning ladies.
So sorry to hear about Moira that was a shock.
DH is back to work today- it is the busy time of the year for him. Loads is fruit will go out to US and Japan in the next couple of days for New Year.
Had a lovely Christmas. Dinner here on Christmas Eve. Was wacked afterwards but all was well. Great turkey and very good ham. Lovely peaceful evening. Christmas day was with extended family was fine though most of us could have found somewhere to hang DH's brother. He is a big mouthed know it all and is so loud. G niece was going around saying shshish little voice. Even Sil was pleasant which is a real surprise.
Above are DD and DDiL putting the topping on the pavlova. The best part we got to say hi to the Canadians about midday before we went out. They seemed fine but I do miss them terribly.
Looking forward to the new year
Big hugs to all my friends.
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Hi Girls - Happy New Year.
We are home - sorry I didn't see your post Chrissy - no puter access. Hope you had a nice time - I must say the weather in Adelaide was excellent.
The boys are gorgeous - the new one is quite alert and strong - I swear he tried to smile at me. Rather hectic week - didn't get to do much by ourselves but we did take one afternoon for a visit to a couple of our favourite wineries.
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Yay Sue!! Never mind about the post just so long as you had a good time with the boys......Oh, and their Mum as well.....lol. Good to hear that the little one is doing well, being preemie can bring difficulties but he saounds great!
Yes, the weather is SA in general has been really great for a few weeks now but that is all about to change dramatically as the next few days are supposed to be high thirties to low forties......time for me to begin the hibernation......lol.
Happy New Year to all my best buds here!!! Here's hoping that 2015 will bring better health with loads of love and laughter for all of us.
Love n hugs. Chrissy
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Happy New Year to all of you! Wishing you all the very best of everything, in 2015!
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HAPPY NEW YEAR ALL OF MY FRIENDS IN HERE. HOPE YOU HAVE A GREAT ONE.
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Happy new year girls!
Wishing peace, joy and health for all of us.
Trishxoxoxo
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Happy New Year! I hope every one of us has some positive news this year!
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hello ladies, just found this thread and hope you all don't mind me joining. Is there anyone else from Perth? I have just started on Arimidex a week ago and am hoping I don't get too many side effects from it. I must say I am finding it difficult to reconcile in my head that in my albeit ( until June 2014) very limited experience with any sort of medication but isn't it supposed to make you feel better? All of this ' treatment and therapy' just makes you feel ill when I for one never felt ill or sick until i started on this ' journey'. The only sort of 'therapy' that has made me feel better is loads of the retail sort.lol. On the Oncotype dx test, I must say I did not agree with the prognosis with Adjuvant online as to me it was merely data and everyone's cancer is different so i was quite happy to pay for the test as it was my tumour and genes being tested and not just numbers. It was worth every cent as I got a low recurrence score of 15 which was way better than the prognosis from Adjuvant online. Also this test is being used in 70 different countries and in the UK it is free on the National Health Service. Australia is very far behind on a lot of treatments and clinical trials. I had the chemo because nothing else had been planned as my MO had said that I would need 26 weeks and to forget about rads and HT for a while. Anyway, I had a trip planned to Scotland for the Commonwealth games and my BS said I could go ( 4 weeks after surgery ) so by the time I got back it was 8 weeks after surgery and I knew I couldn't delay any sort of treatment so went ahead with the chemo and because of my score it was reduced to 12 weeks. I was absolutely terrified but I thought 12 weeks was doable and even though it shouldn't have bothered me, I knew people would judge me if I didn't do it. Until this happened to me I was pretty much the same as everyone thinking that chemo is the cure all wonder drug when it quite clearly isn't. Didn't have too many SE's but the worst was the bone/muscle pain which is why I am now even more scared of Arimidex. Wasn't even sick or nauseous on chemo but maybe because I made drinks from fresh ginger. the thing that is bothering me most from chemo is my nails have been destroyed and have even lost a couple. But by far the worst thing of all is that I developed lymphoedema despite taking every precaution, travelled business class wore the sleeves and gauntlet, did the exercises, massage the whole box and dice.And now this has taken over my life apart from me hating to even look at my arm I am finding it incredibly distressing. But with my research skills I have found that several places outside of Australia are doing LNT with some sucess. I have only found one hospital in Australia doing it. So I went to see my BS armed with my research and he is going to make some enquiries and I have to go back and see him in February so fingers crossed. Sorry this is such a long post but no-one else really understands everything that we have to endure. Elaine Happy New Year and good riddance to 2014 :-)
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Hi allHappy New Year to everyone.
Elaine I'm in Perth, welcome to this site.
My sister had to put her dog down yesterday as it kept having fits all the time, so not a good new year for them.
I didn't do anything last night but had Mum and Dad over today for lunch which was good. Work rang me up yesterday afternoon and wanted me to work today, I said no that I had plans. If they haven't got enough staff who want to work that's their problem.
Carol
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Hi Elaine and welcome! Everyone is welcome here so make yourself at home.
It's almost 2.00am and I was just heading to bed so I will hat a bit more in the morning.
Oh Carol, good for you for standing up and saying no!
Night all, love n hugs. Chrissy
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Carole.. I know how your sister feels.. Dec 28 we had to have our 16 year old Maltese put to sleep... Very sad :-(
Shaz.. Happy New Year to.you too.!!
Elaine..Welcome .!! I'm from Brisbane...I'm on tamaxifen... Have been lucky so far with side effects..
Chrissy.. 2am...gosh.. I don't know how you do it.!!
We had 2 other couples over for dinner New Years Eve.. It was a good night, actually managed to stay up.until 12.30 am.. and see the New Year in.. I hope it's going to be a good one for us all..!! My daughter and her family came and visited us yesterday.. It was a lovely day, and we got to.use up all our left over food from the night before.
I weighed this morning.. Oh dear.. A bit of weight has snuck on over the last couple of weeks.. So going to try to start dealing with it today.. Up the exercise a bit.. and ignore the left over cheese and dips in the fridge from New Years, and the chocolats we got for Christmas !!
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Happy New Year everyone!!
Lucy, I'm still away until Sunday so I've managed to avoid the scales so far.....I don't think it will be pretty though when I do!
I second Shaz on positive news for everyone this year!
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Elaine, I just read up about LNT, sounds very promising. I don't have lymphoedema but I would be interested in finding out how you progress for some of my dragon boat friends. Dragon boat paddling has been recommended as a way to manage symptoms but a cure would be fabulous.
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Hi ladies happy 2015 I had a frantic lead up to Christmas so had a bit of a rest from the boards. Anyway I am back on the boards and back to work tomorrow. Welcome to Elaine u will find much friendship and support
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Hi girls! Been a tad quiet as we all have during the holiday season but I guess things are back to the normal side now.
I have my youngest grandson coming to stay with me for the next week and then his cousin coming the week after. I have scheduled pick ups and drop offs according to doctors appointments so that means less travelling etc........using the old head for somethings.....lol.
Here's hoping every one is feeling okay.
Hi Delvzy!
Lucy, there are some days that I don't sleep at all and at the moment refuse to take sleeping pills constantly.......just being a stubborn old broad and not wanting to add to the many pills I already take.
Elaine, how are you doing?
Love n hugs to all. Chrissy
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Hi ladies, thanks for welcoming me. I decided to take early retirement (I'm 58) so will finish up work on Jan 30th. I like my job, but the LE has meant more appointments and it is so time consuming managing it. I want more time for me so the job has to go. I am looking forward to being more involved with my charity that I support, Miracle Babies Foundation. Before my dx I was a prolific designer and knitter of tiny little garments for these precious little people, none of your boring pastels for me, the brighter the better although I do use some of the whites, pinks and blues. Since the LE I have not had time to do any knitting and that is what I love to do so I am going to do it! I will now be a 'kept woman' lol The heat here in Perth today has been horrible and so uncomfortable with this compression sleeve ugh! So far so good on the Arimidex day 11..just waiting
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Elaine sometimes the SE from the AI's often don't show up until months after beginning them so just enjoy and hopefully they won't show up at all.
I love to knit as well and at the moment am working on a 2 ply silk shawl for my eldest daughter. I made one for my other daughter last year. I seem to have moment when I can''t put the needles down and then I don't want to pick them again for months. I have so many hobbies I like to do they have to be done on a rotational basis......lol.
Enjoy your retirement!
Love n hugs. Chrissy
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wow Chrissy, 2 ply, that must take you ages to knit. Yeah, i know that the SE's can take a while to kick in, that's why I want to get knitting as I'm hoping it doesn't affect my hands too much. I'm taking fish oil and magnesium as well as D3 and calcium. I'm also signed up for a clinical research study on whole body vibration for women on AI's to see if it helps with bone density..start sometime in February so looking forward to that.
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Elaine, when I lace knit it is with larger needles so it doesn't take too long, Here is a pic to show you what I do.
This is a little scarf and is gossamer fine and has virtually no weight in the hand.
I was on Arimidex for fifteen months and the SE's were so debilitating they were dreadful but I put up with them until I had a progression and then I was changed to Femara. I've been on that for five and a half years with only a few SE's that come and go but it has kept me stable for most of that time so I'm happy. I find that when my fingers get stiff I sew and when they are not I either knit or crochet.
That vibration study sounds interesting and I hope it proves a good thing. Oh, by the way, I am 63 and was originally dx at 52.
Love n hugs. Chrissy
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I can vouch for Chrissy's beautiful shawls.
Elaine, to my surprise I have found knitting has helped the LE. My fingers do get stiff as I have rheumatoid arthritis and like Chrissy I change what I am doing. I am knitting at present for my DGD and once that's done I will get on to DD1's quilt. Then I hope to start a baby's shawl.
Have had a great few days away and now trying to get things organised like getting the decorations down and thinking about decorating the front room once it is gibbed. We have an old house which we have been slowly renovating and even though the room was papered 8 years ago it needs plaster board and insulation. Sad to see my beautiful paper gone but may use the same on one wall.
Bih hugs to all.
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Chrissy, that shawl is so beautiful, you are one very talented lady, I would love to be able to knit something so gorgeous
Alyson, how do you cope emotionally with the LE, I am really struggling with it, crying every time I think about having to live like a circus freak for the rest of my life with this horrible, ugly fat arm and no amount of massage and exercise is ever going to make it go away. I fought so hard against the BC not defining me and now the LE is doing it. I just can't imagine being able to accept this awful condition. I am seeing a BC physch but I don't know how she's going to help as she can't make it go away either. sorry if I sound so negative but I have sort of trained myself not to think about it ( not deal with it )but have been to physio today and that makes me have to confront it. I have not seen one single person wearing these awful compression sleeves and don't know of anyone else with this.
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Hi AussieElaine, I just read your post and my heart goes out to you. We are definitely sisters in arms hehe. I have bad LE as well and my right arm is HUGE, and being short, I have trouble finding stretchy clothes with room in the arms. I must admit that I wear my compression sleeve EVERY day, and I know that it does help a little bit, but unfortunately it does not cure it...... I have my moments and I just sit down and have a good cry, but that does not cure it neither, so I figure.... just put up with it. I go swimming every day and I have my regular lymphedema drainage massages that cost a fortune (not considering the travelling to and fro as well as I live about 90 km away from Adelaide) .... to no avail. I also do breathing exercises regularly every single day, and I will continue to do so, as I believe that if I give up, it will only get worse anyway. Yes, LE affects my quality of life, but what the heck! I am stil living, I am in so much pain at the moment as my LE is also in my chest and upper back and every breath I take, it hurts, so I will go for the painkillers in a moment and then get on with my breathing exercises because I have a long day ahead of me with my elderly mother and then two of my grand children and I will not let them down.
I must try knitting again, Alyson. I had to give it up last year because of my lymphedema, but now that my fingers are not as tight any more, I would really love to give it another go.... I just love knitting.
I am on my second week on Xeloda, and my feet are nowhere near as bad as they used to be, but my tummy seems to be more upset lately, oh well, a change is as good as ...... lol.
I hope everyone has a great day today.
Warm hugs
Mandy xxxx
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Hi, AussieElaine. I have also just signed up to this site. Like you I was a very healthy person before my diagnosis. I am still coming to terms with the loss of my life. Like you I am very upset with the side effects of surgery, chemo and radiation. These side effects are not spelled out at the start. Is it because the medical profession has it's head in the sand? The general community only sees pretty people wearing pink ribbons and never are side effects of cancer treatment discussed in public. If the general pubic knew what quality of life is left after treatment I think they would be outraged. I too have lymphoedema which has is constantly on my mind from when I get up (take of night wrapping, quickly struggle into compression garments, decide what clothes will fit today) to the night ritual (MLD, wash compression garments/bandages, put on bandages for the night.) I am also looking to have LVD over seas. It would be good to keep in contact to give each other info about what we have found e.g. Japan has a mdeical visa which we can access via the Japanese consulate in Perth/or online.
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Hi Terry and welcome both to the site and this thread. There is loads of information on the main part of this site that may help you as well as dedicated threads for Lymphodema. Sure hope you can get some info to help.
Mandy, lovely to hear from you! I have been wondering how you are and how you were managing with all this heat.
My Lymphodema is very mild in comparison to all of you girls so I really sympathize.
I have my youngest grandson with me for the week and right now he is veging on the couch watching re-runs of Two and a Half Men the early series. I love it! He is 16 and still wants to spend time with us. Next week I will have my 17 year old grandson and his friend coming to stay also..........I get really chuffed when they ask to come.....lol. I guess I will be spending more time in the kitchen as these boys love to eat but luckily I love to cook.
Take it easy in the heat.
Love n hugs. Chrissy
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Hi Terry, so glad to find someone who feels the same as me. Where are you in Oz? At times I can't quite believe all this has happened to me and am finding it very difficult being constantly told that I have a chronic disease and will have to learn to live with it. I was really hoping that after the surgery, chemo and radiation that my life would return to normal. I am apprehensive about the SE's of Arimidex but at least you don't have heaps of appointments to attend ( another thing I stuggled with ). Before this BC I think I was in a Dr's surgery 3 times in the last 10 years. Like you I am doing all I can to follow up on the different types of surgery. I wonder how expensive it is in Japan? Good idea to share what we discover
luv 'n' stuff
Elaine
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Hi Mandy, thanks for your post. the rational part of me says to keep it in perspective and there are loads of people worse off than me living with much worse conditions, but it's not helping me atm. I am hoping with time I will get used to it, but I am just feeling so overwhelmed with the events of the last 7 months and can't get used to the fact that my life that I had is gone and am living such an alien life, something I suppose we all thought would never happen to us. But it has happened, today's calender quote is by Eleanor Roosevelt " you must do the thing you think you cannot do". I will try and remember it. Keep well Mandy. Have to do some work now
luv 'n' stuff
Elaine
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Hi AussieElaine and AussieTerry, welcome to BCO and so glad you found this site full of support from caring people.
LE is a very difficult condition to deal with and you have our sympathy.
You'll find there is fantastic support from locally in Oz and from overseas on this forum and we hope you gain much from the various discussions as to how to deal with LE.
All our best
The Mods
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Hi Trisha Anne,
I'm so pleased I found this site. I was diagnosed on December 16, 2014. Happy wedding anniversary and Christmas! First biopsy inconclusive, the second came back with the not-so-good news. Hoping it's small, early and about to have its butt kicked good and proper! Because of the Christmas break I haven't been to see the surgeon yet - that's this Friday in Sydney. I started researching but it all got too overwhelming for me. But, when I came to this site, it was encouraging to read of so many positive stories - survivors who are living well. It makes me feel better that there is a whole community of people here that hopefully I can share this journey with.
Best, xo
PS: I'm from rural NSW :-)
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Hi Carla and welcome to both BCO and this thread! So glad you found us. Yes, you are definitely not alone with this disease, it has afflicted many unfortunately but there is definitely life after BC.
Good luck with your doc appointment on Friday. Don't be afraid to ask as many questions that pop into your mind and keep coming here to get support, ask more questions, get loads of cyber hugs and an enormous amount of encouragement while you go through your treatment.
Love n hugs. Chrissy
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