Australian Sisters
Comments
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i reckon, and its even harder to see. i was going to type it out on nz thread, but i got a headache from the eye strain, so thought better of it. WHY DON"T THEY WRITE IN ENGLISH LOL so people like me can sus it out and do it in LARGE PRINT so people who can't see can read it. make life simple for us girls. we are in a compromised situation with all our health issues. Better still, why was i not more assertive and asked things. probabaly, did not know really what to ask. my mind was a blur, like my eyes are now. anyways i had better go, got somebody coming to pick up her girl kitten about two and then last one next week, he going to be lonely little chappy tonight. we will probably let him come in cage by bed, we have one set up there that one of the mother cats were in after her speying. this little boy is abit more timid than the others, so will be good to handle him abit b4 his new mother gets back to collect him. have a good day girls.0
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Hi everyone. Feeling on top of everything today. It helped that I had 14 hours sleep last night. A friend gave me some essential oils to use, which I did. I'm a bit of a sceptic about these sorts of things, but I thought what have I got to loose? anyway not sure if it was them, or just good old nature but today is like cheese to yesterdays chalk
. Midnight, I guess you really will have to write down some clear questions for your onc to get to the bottom of your report. Doesn't make a lot of sense to me and could sound 'scarier' than it really is. I know from mine that miotic means the agressivenss. Like you mine were a Grade 3 too and my miotic activity was rated 'brisk'.
Hope everyone has a magnificant weekend. Kylie no bus trips for you for the next two days = relaxation!!!
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Hey ladies, would like to run something by you.
I have a Bone Mineral Density scan scheduled for September, but have been having some really bad lower back pain that has been intermittant over the last year or so which I havent mentioned to the onc or BS as I havent been in pain on my visits to them and therefore it hasnt been in my mind at the time.
It may well be osteopenia/osteoporosis, arimidex s/e or related to a curvature of the spine that Ive always had, but Im wondering if I should ask my onc to check for mets just to be safe. The pain lasts for a week or so each time, I dont do anything to cause it, I just seem to wake up with it every month or two. The pain Im in at the moment is receding but it started on Monday while I was at work which is the first time I remember it happening during the day.
I guess, while I dont expect it to be mets, Id like the peace of mind in knowing for sure as its getting quite debilitating when its in full swing.
I realise once I talk to the onc, she will determine what test if any I should undergo but Id like to go into that conversation with an idea of which scan would be best. Should I be pressing for a MRI or a PET or some other scan?
Any advice would be appreciated. As I said this bout is receding now and I reckon by Monday I will be back to normal but seeing as Im having the BMD in September i figured I could get the ball rolling for a scan of some description for around the same time, while I remember the pain.
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Lyndal your DEXA scan is just looking for osteopenia and osteoporosis. You need to ask for a nuclear bone scan. This will show arthritis and mets and is the mist common scan used to check your bones for mets.
Sure hope it's nothing to worry about but you do need to tell your doc...........it's important!
Love n hugs. Chrissy0 -
Gosh we are getting a few shakes in our part of the woods, the other night, the house shook and the light just about fell off the ceiling, it was swinging and the house was rocking and today we got one, 5.7 and other night was 7.0. they are moving up the country, christchurch still getting them too, SCAREY. have felt little ones, but the other night was a real shake and a half. oh well. probably get more now, nz seems to be getting their fair share now too of earth quakes.
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Lyndal, I take the approach that it's not my job to determine what sort of scan I need but instead to report symptoms and let the doctor decide which test to prescribe.
In your situation I would see my GP now and if considered necessary the GP can order a scan and you can have the results by the time of your onc appointment. I would get a blood test too. I have one done before each onc appointment. Your GP should know what to test but include hormone levels, calcium, vit D, liver, cholesterol, sugar. I also had ovarian marker and thyroid tests.
Working on your feet all day cannot be good for your back!
I hope your pain has a benign cause but please get it checked.0 -
Thats scare Midnight. Glad your okay though.
Thanks Chrissy and Racy. I hadnt thought of seeing the gp, I should be able to get along to see him sometime this week and see if he can authorise a nuclear bone scan, would save bugging the onc which is a good thing. Racy, I was like that too, but have changed since Ive had too many procedures (including the biphosphorates) which if I had researched properly in advance I would have declined and saved myself a lot of pain and trouble.
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I agree Lyndal. I research here but don't like to tell my docs what to do, initially, but will have a conversation so I better understand their recommendations if I'm not confident. Ultimately, I do trust my doctors otherwise I would find others.
An example: You see ladies here saying you should get a breast MRI. My BS said I don't need one, without me asking. These docs lecture at uni, write research articles and sit on boards. I am putting my faith in their expertise.
My GP is always my first port of call, or the Wesley ER out of hours!
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Lyndal, I had back pain a couple of months ago and thought it could be mets, so saw my gp and he ordered a bone scan. It did turn out to be arthritis and I'm (and the gp) absolutely convinced it was caused by the Arimidex. I would see your gp to start with and see if he agrees you need a bone scan, don't wait till September - that's a fair time away.
Midnight, I did think of you when I heard about the 7 shake in NZ the other day. That would have been scary. Hope you stay safe.
Kate glad you slept well and are feeling so good today :-)
Trish
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hey everyone!
have an appointment with my surgeon next month yay! will talk about reconstruction and have my first mammogram since diagnosis on my other side.
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Mel that is great news that you have an appointment. Good thoughts for your mammogram.
Kate - I am sure you feel better after a good nights sleep.
I am so over this cr*p. I went to archery with DH and the boys today. They were having so much fun and there were women doing it also. All I could do was cry, when do we start to feel like we are a functioning member of the universe? Not happy....
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Hello Ladies, I occasionally come to this site to see what the rest of you aussies are up to.
Racy, thanks to your reply regarding my option of starting Tamoxifen after 4.5 years of Femara. I have to say though that I have not been able to find any article to say that it has any benefit, however I will keep doing research. My Onc in Sydney has given me 4 weeks to clear the femara out of my system, before we decide what I should do next.
Lyndal - I have just been through the sore back and terrible back/hip/sciatic pain scenario. Had pain in the area for about 8 months. Went to my GP and she fobbed me off saying it was probably from the Femara. Had my 6 months check up in Sydney 2 weeks ago, and totally scared me when my Onc said that he needed to check it out in case of bone mets. I totally had myself sick with worry. Sent for full body CT and full body bone scan, results came back that I had very advanced osteo-arthritis, and my bone density showed major bone loss heading towards osteoporosis. It would appear that the culprit is the femara, however I also had an oophorectomy so that may have also contributed. I am aged 57. I now have to go off the femara, and the Onc is trying to decide what to do with me. He is saying he might put me onto Tamoxifen, however I can't find any evidence to say that would be of benefit. So my advice is don't freak out totally if the Doc sends you for testing, as you may well have arthritis or something else going on there. I guess it is natural that we always think the worst, however I know it is hard not to.
regards Ched
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Katopet - Hang in there with it all. It will eventually get better for you. The rads are probably the better of all the treatments you will have. Give yourself 12 months and you will start to feel like your old self again.
There are sure to be some bumps in the highway, however at times. I have met some ladies that once treatment has finished for them, they have had no further hurdles and all has been smooth saiing. Me on the other hand, has had every conceivable problem going, however I am still here and and still working full time. It sounds like you have youngish children, so they will keep you busy, and I think the busier you are the better it is. You don't have time to think about it all too much. Becuase I don't have young children, I have found that I have focussed on keeping busy, and I know that has helped me through it all, as I wanted to keep everything as normal as I could.
Very had to keep it normal with all my trips to Sydney though. Had my 45 trip to Sydney 2 weeks ago, with it being an almost 1,000 klm round trip to home, so as you can imagine. our car has certainly had work out the last few years.
Best Wishes, Ched
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aussieched, good to see you here.
No I don't know that surgeon at Wesley.
I think you are lucky that your onc is considering extending hormone therapy. I'm sure there have been some trials of this. I would be prepared to manage menopausal effects to avoid mets. It seems a lot of ladies recur after five years.
Keep us posted!0 -
Kylie sending you ((((hugs)))) it's hard for you at the moment, but really it will get better, it just takes time, you need to cry when you need to. You've only just finished chemo, and Taxotere is pretty horrible drug that will take time to get out of your system. On top of that you are traveling every day for rads. Give yourself some time.
Mel, good to hear from you, hope all goes well with your appointment.
Ched, great to hear from you too. Wow! 1000kms per trip, where do you live?
I'm having a relaxing night in front of the tv :-)
Trish
xox
Edited cos my iPad thinks it can spell better than me lol
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Trisha-Anne - I am up on the Mid North Coast of NSW. When I was initially diagnosed, we didn't have a dedicated cancer centre at our local hospital. I could have had the initial surgery here, but would have had to travel to Newcastle for the radiotherapy anyway. My GP wanted me to go and have all my treatment in Sydney with a multidisciplinary team that she knew at Westmead. I said no, I wanted to stay closer to home, but my husband stepped in and said, No we will go to Sydney to see the doctors that are doing this type of treatment every day of the week. Therefore all of the trips to Sydney, and a lot of time and a lot of money spent staying in Sydney during all my treatment and issues that I have had during the last 5 years.
regards Ched
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Hi and welcome Ched. Mid north coast is lovely. My family originated from Coffs Harbour and I adore going there to visit, though havent been there much in the last 20 years except for funerals sigh. Might try to go for a holiday if I can get away from work for a few days, and once its warmer haha.
Thanks for all your advice ladies. I promise not to freak out. Im not petrified that its mets, there could be any number of things causing the pain, just thought for peace of mind, getting mets ruled out once and for all (specially as its now nearly 4 years since dx) would be a good thing for my poor arimidex riddled brain lolz. Even if it did turn out to be mets, it is what it is and worrying in advance wouldnt help either way. Hope that whatever is causing the pain can be dx and treated though, its awfully hard to work when you just want to grab your back and yell ouch.
Ched I could be wrong, but havent some high stage ladies been getting meds like tamox to reduce bone mets before advancing onto chemo? I vaguely think Ive read that here in BCO. So IF tamox can reduce bone mets and is used as a 1st treatment for those ladies, then it should also be able to help us lower stage ladies in preventing them, plus from memory tamox is good for the bones and doesnt erode them like femora and arimidex. Im with Racy in thinking that having the option for additional treatment after your 5 years (specially if you dont suffer s/e's) is a good thing. If tamox does give you s/e's I guess it comes down to qol and what your prepared to put up with. Personally if they offer me something after the 5 years, I will try it and if it doesnt cause the s/e that the arimidex does, Id take them as long as they are on offer. If it does cause the same amount of aches and pains as the arimedex has caused me, Id want to see some strong stats supporting the ongoing medication cause Im really really looking forward to the day I dont have to take pills anymore.
lol at the spelling Trisha, you made me laugh.
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Kylie, maybe consider some counselling. I don't know how easy it would be to access from where you are but it really could help to talk your feelings through with someone who specialises in cancer. Having BC takes a huge emotional toll.
I had psych therapy for over 12 months and don't know how I would have coped otherwise. A number of other ladies here have had counselling also.
The Cancer Council in Queensland has free counselling so similar may be available in NSW. Fees for psychological therapy can also be covered by Medicare. You can get a referral from your GP or specialist.0 -
Kylie, I had a similar experience towards the end of rads. I went to a big event I'd been wanting to attend for years. But I hadn't pictured being there in a chemo wig with rad burns prickling me and a flat chest. I felt so washed out and such a freak, like I was separate from everyone else there. Fortunately it was the bottom for me and all uphill from there. I think the day I walked into a major shopping centre without the wig, with a crop, was really liberating. I saw a man with hair shorter than mine and no one was looking at me or him, I felt sure people would stare but didn't see any. I know you'll have a day when you too feel the freedom of being over the treatments. A new woman who's been there and made it to the other side.
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Definitely get some counselling Kylie if you want too. You body has been through so much... and your mind probably tenfold more! It couldn't do any harm could it?
Well I have to write that my hair has come back very quickly once it got going. Honestly no-one would look twice at me now, it just looks like a boy cut with whispy bits where it is curlying out. I am going to have lots of curls, but I always did anyway. I'm still dying it twice a week with a brown rinse and I'm noticing that I don't get full coverage out of one sachet anymore, wherase when I started I only needed about half the sachet. It is probably growing a little slower at the front and sides than at the back, but at least it is growing at a predictable rate now.
Joy, I went to the movies for my first "outing" I was sure everyone would be sneaking looks my way, but not one single person did. I think we always think others are looking at us, but in reality people are usually pre-occupied in themselves and what they are doing or with to be fixated on people passing by. It was liberating indeed, although to be honest I didn't wear my wig more than a handful of times throughout due to the heat or itchiness of it, but I did have a big hat that I would always wear. Gone for good now
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Kate, really hope this doesnt upset you, but I just wanted to point out to Kylie how much better you are feeling now, when it was not long ago, you were feeling very down.
Kylie, see how much err perkier (haha) Kate is feeling now? hair growing, more energy for favorite hobbies, just a general impression that she is over the hump in the road. From memory Kate is about a month ahead of you in terms of finishing chemo. Its not a race to feel better, just hoping that seeing how much improved Kate is, that you will see that you too will be feeling better soon. Once those blasted rads are over with (not to mention that awful bus trip daily). Only you know whether you need to see a professional or not, just wanted to reiterate that it is only natural to be at the stage you are in at the moment and to not laden yourself down with guilt over still not feeling yourself.
I think Ive said it before but I hit that hurdle a few weeks after my last chemo when for some stupid reason I thought by then Id feel back to how I felt pre-chemo and was devestated when it didnt happen. A few weeks after that I got used to the "new" normal and kept improving from there. That last cycle of chemo takes way longer than 3 weeks to recover from in my opinion and experience.
Be gentle on yourself, give your body and mind time to recover from the belting its taken over the last 6 months and see how you go honey. Come in here and rant if you feel like it, you know we are here for you and each other always.
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Thanks everyone for your unconditional support. I went for a bushwalk (easy and not far) today as we back on to the national park. It was so relaxing and good for the psyche.
I do have a counsellor and I do find that helps for the emotional stuff. This was a different type of meltdown. I think I have had my head in the sand believing that once all this treatment is over, then I will go back to doing the things I did before. Yesterday was a realisation that physically I will never be the same and there are some activities I may never be able to do.
I am booked in to the lymphodema clinic in a few weeks, so I will have a good talk to them about limitations etc.
Lyndal - yes Kate is my inspiration. My hair is growing, it looks like a rug, and I can't wait to dye it. DH says I look like a 'smokey coloured cat', that's a nice way of saying grey lol. x
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Nah all good Lyndal and I second what you say.
I haven't wanted to appear too cocky? or boastful (not that I would have been but it may have been interpreted as that) because I'm sensitve that others are still in treatment and struggling with all the physical and emotional side, but now that I have the floor (so to speak) I will be honest and frank and hope maybe this helps.
Like you Lyndal, I was blindsided by a depression once all my active treatment was over (chemo and rads) and I too thought I'd be kicking along more than better than before. It really rocked me. I remember crying to Paul one day, very early in the morning (poor guy, comes out for a coffee and here's me just besides myself) and when he asked what was wrong, the only way I could explain it was by saying that I just didn't have any 'joy' in my life. I really felt so bleak and couldn't think of one thing that I was happy or excited about and I couldn't see any light at the end of the tunnel. It just wasn't there. This is a far from my normal self and I knew something was really off with me.
I rang the cancer help line, which I'd never done before, because I was really concerned about my mental state and I wanted to know if it could be a bona fide depression (which I would have gone and got help for) or just a reaction, like Jenn said in a previous post, like a post traumatic stress disorder. The lovely counsellor on the other end of the line said it was quite common and to give it a couple more weeks to see if I got out of the slump naturally. Well I think I'm repeating myslef here (sorry) but about 4-5 days later I just woke up and felt that little bit more joyous about things and it's been improving everday.
I do know looking back that I have come such a long long way and that all the treatments etc took a big emotional toll which didn't really hit me until it was over and the momentum was gone. But that is me. Some people it hits at the beginning, middle, end, never or all the time. We are all different, but I can tangibly see how much better I am now even though I thought at the time I had a relativey easy ride with minimal side effects, I was still in a strange land, with strange things happening to my body, no control over any of it, always on tenderhooks with 'what next' and of course the fear of the unknown and worry about the outcome. Looking back it wasn't such a peachy ride.
So Lyndal is right, with time 'this too shall pass' and one day you will be looking back in reflection and be amazed at just how much you went through. You know that you are not alone, and that we all 'have your back' Kylie.
On another topic. I have declined the 5 year hormonal therapy. I thought very long and hard about it and weighed up all the pro's and con's and in my case doing it would have only increased my chances of a non-recurrance of between 4-6%. My oncologist was supportive, although he did say it is the standard package of treatment for HEr2+, but that for me the very important treatment is the Herceptin, which I am doing. If I had have had any margin or lymph involvement I wouldn't have the option but to take it. No red arrows please..... I've made the choice that is best for me and only me.
Love to everyone. Kate xx
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Very well said Kate, and you could never come across as cocky. Regardless without you saying a word I could tell you were in a better place, simply from the tone of your more recent posts and thats a wonderful thing.
Not sure what a red arrow is, but I would never try to persuade or pressure someone to do a hormonal or any other treatment (other than surgery to remove dcis or invasive cancer before it spreads), if a decision has been reached with knowledge of the pro's and con's. I believe we all have to have the treatments we can live with and that give us peace of mind Kate. In your instance the Herceptin is vital and without lymph and margins needing to be taken into account, I may well have declined arimidex (specially when the s/e's hit me so hard that first year or two).
So glad you are in a better place now Kate and I hope Kylie can join you there soon. Also glad Kylie that you are feeling better today. Give it time and I think you will find you can go back to all the things that gave you enjoyment pre BC, subject to what your lympodema PT says, maybe theres a way to reduce the tension and therefore the jerk on your arms if you wish to participate in archery for example. I have mild lymphodema and havent hoisted a golf club or scuba dived since my dx, but thats cause a/ I dont have anyone to play with or dive with and b/ they just arent a priority for me at present. Maybe one day I will try them both again, but with work and life, that day is a while off yet.
I hope the rest of you have all had a good weekend, been lovely weather here and even sat out in the sun for a while today watching the dogs play. (Just wish they could play without the barking sigh)
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Kylie, glad you are supported and feeling a bit better. You can regain your physical strength. Many have and more.
Kate, Lyndal and Joy, thank you for your wise words. I do think having hair helps a lot.
Congratulations Kate and Kylie on your hair progress!0 -
Kate - how high were your hormone receptors - yes I'm going to try and talk you in to it. My mammos are appearing less dense since being on an AI which IMHO is a good thing.
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Kate, my comment, since Sue started it, is that you can always try for a few months and see how you go. What are you concerned about?
I respect your right to make your decision.0 -
Kate - life on Aromasin ain't all that bad - Arimidex made me depressed. I have arthritis anyway, so I'm not really noticing any extra pain. My onc lied to the government for me and I had 4 Zometa infusions to hopefully prevent bone loss and bc recurrence. I am due for a dexa scan - my first wasn't too bad for my age. The onc said that usually bone loss is more prevalent for those who start out with poor bone density and he didn't think I would have a problem. I guess I'll find out when I get around to arranging the test. One thing to remember is that some ladies who have bone mets are only on an aromatose inhibitor and it keeps them under control, so they are powerful on the bc front.
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Well for reasons not clear to me (I am 5 years post menapausal - totally done and dusted if you get my drift) I would be on Tamoxifan for 1 year then an AI after that.
I had a truly horrendous time with hot flashes for 4 months before I went running to the Drs insisting I be given HRT. They ruined my life and I could barely function. I'm sure I had them more severely and frequently than is considered to be in the normal range. Maybe 40 or so during the day and a dozen or so night sweats. Chemo bought them back again although not to the same extent, but still unpleasant enough that I knew I need my hormones to keep me feeling OK. I know ER hormones are the key culprit to my BC and hand on heart, I would give it a go if my previous experiences wern't so extreme. The other well documented possible side effects of tamoxifan don't really thrill me either and although I accept that in a lot of cases symptoms subside quite managably after a few months, for all intents and purposes my bc was removed at surgery. Everything I have done since is purely preventative. Statistically the odds are far in my favour leaving things as they are that I won't have a recurrence. No guarantees of course, but if I am struck twice by lightening it's a risk I'm prepared to take. I really value my QOL at the moment. Especially since coming out of the treatment phase and really starting to feel good. I mean I thought I had good days during treatment, but those good days are no comparison to the good days I'm having now. I really don't want to dilute how great it feels to feel great.
As I said, If there was any marginal involvement at the least (which there wasnt) or lymph node, then I would not hesitate, but I do feel that it is a 5 year solely additional preventative measure to what I've already had. So I do think I've given myself a good fighting chance. But enough is enough.
I'm very comfortable and I don't have any qualms with my decision as I know deep down it is the right one for me and what I want.
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Kylie, everyone has given you great advice, and I'll add my 2 cents worth lol. I was pretty depressed like you, but mine came a fair bit after chemo. I was still doing Herceptin, and while Herceptin is pretty easy on the body and I didn't have a problem with it, towards the end of the 12 months I was getting tired of treatment. In hindsight, I think some of my problems were also the Arimidex. I had a meltdown one day at the oncs. I'd been out of work for a month, the engine in the car had blown up, the washing machine had died and the ride on mower had also died. Lots of money out the door - and at that stage we had hardly any money left. On top of all that I felt old, ugly, fat and disfigured. It all got too much and I had a major melt down.
I also thought I should be doing so much better so many months out of chemo, and I wasn't. I saw a counsilor who specialised in cancer patients and she was just wonderful. Got me out of my slump. I know you are seeing someone, so know you have someone who can help you through it all. It does feel like it's never going to end sometimes, and I think we all go through that "I've had enough and want my life back". Glad you were able to enjoy a walk, it's the little things like that that can help sometimes.
Ched - the travel for your treatment must have been a nightmare on top of everything else, but I guess at the time you don't really think of it, you are just in survival mode.
Kate - I respect your right to choose not to take an AI. I'm not sure I could have lived with 4 more years of Arimidex, the se's were just too horrible. I'm hoping that Aromasin will be a lot kinder to me, if not, I'll try something else until I run out of options. But if I was told that anything I took would give me the se's of Arimidex and I had to take them for 5 years, I'd be seriously considering whether the terrible QOL was worth it.
Bloody freezing here again, this morning has been our sixth or seventh consecutive morning of at least minus 5! Saturday morning was minus 8 and even though our pump is enclosed and protected it froze - which meant no water and more importantly no hot water for a shower! brrr
Trish
xoxo
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