Australian Sisters
Comments
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Yay Lyndell, that's so good to hear. I'm so happy for you. I'm having my yearly u/s and mammo on Tues, a very good friend is coming with me for support, not that I think there'll be a problem, but moral support is good to have.
Kate, hope your DH's cough is nothing to worry about. My BFF gets a cough when she gets a cold and it usually drags on forever, she's had all sorts of tests, but it seems she just gets a cough that won't go away.
Sian, you must be lonely over there, going through all this with no family around you. Where's your nephew's wedding? Yes I think your family will react to your news, but I can understand that you didn't want to worry them.
Well this cold is the pits. I haven't been this crook since chemo. Headaches, body aches and nausea - sound familiar? No-where near as bad as chemo, but I am pretty miserable, and DH is worse than me. We are living on toast and mandarins at the moment.
Hope everyone else is ok.
Haven't heard from Kylie for a while, hope she is ok
Trish
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Hi everyone, finally back on line. We have moved, yay, am totally disorganised, oh well, and have had no internet access for two weeks, ahhh.
Second taxotere went off ok. I got pain patches this time which helped with the bone pain but it still hit me hard. I haven't travelled far from the loo and have lost about 3kilos. At least it is enforced rest and I am not tempted to do anything I shouldn't.
Jenn, sorry to hear about your daughter's friend. It is hard not to worry ourselves, but it sometimes seems harder to watch everyone else struggle. I have noticed that everytime a cancer ad comes on TV everyone seems to find an excuse to leave the room.
The weather is freezing, several minus 3's, but having a wood fire is great. Trish my 18yo had a run in with a wombat on Sat, the day he finally got his 'new' car registered. Lucky he is training to be a mechanic...
I went to my radio onc appt to sort out radiotherapy, I was hoping to be able to get dose dense treatment which is quicker but I don't qualify. I just try and keep reminding myself it will be over soon.
Lots of hugs, congrats on all the beautiful babies, that is lovely news about your daughter Kate. Kylie xxx
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WOW Sian - you haven't told anyone?
Well, I am sitting in a sunbeam at home this afternoon. My oncologist this morning ordered me to stay at home (not go to work) for these last 2 weeks of chemo. My tenacious cold or the Taxol or the herceptin is screwing with me. I'm anaemic, my heart is racing, my diastolic bp value is not good (high) and I'm easily breathless. Not hugely of concern as yet but I am now having a MUGA heart scan on Monday (3 weeks early) which should tell us if we should be concerned.
We really need to hope it's not the herceptin (which most of you know can cause heart problems) because I really need to be able to take that for the next year to bring my odds of recurrance way down... If my LVEF has been affected after only the equivalent of 3 full doses I am going to feel so doomed.
Now, I've just got to figure out what the heck to do each day. For the past four years I have been working full-time and carring a university half load of classes each semester. So I have had no spare time and now I have no idea what to do with spare time.
Doesn't help that despite me keeping working the medical bills over the past 6 months have us financially drowning (even with medical insurance). We are a lucky middle class couple with three teenage kids all studying that between us earn too much for any govt family benefits. The normal utility bills have been increasing, all the other bills are going up and up, the medical insurance subsidy finishes in June, the carbon tax hits us soon (remember - family home with 5 people and a dog!).
We maxed our mortgage last year to complete a renovation with the plan to work like heck for 2 years to get it back down and then sell up and downsize. With all the additional medical bills (and parking costs etc) we haven't been able to even think about paying down any extra.
I saw the other week that all these Australian celebrities got together for a huge fundraiser event for a female tv presenter who has breast cancer and is going through treatments. I'm so jealous - could do with a fundraiser here in our ordinary struggling middle-class, non-celebrity household :-(
Jenn0 -
Oh Wow Jenn! Ordered to stay home? You really must be under the weather. Sorry that you are not feeling the best and looking for things to do.....lol......why don't you grab some good books, a few good movies and just relax like a good girl.......lol......yeah I know that's what you've been told to do.
Mmmm I guess I'll have to go look up about the subsidy for private health being discontinued at the end of June. I don't know how I'm going to afford the added cost but I guess we'll be using candles instead of electricity soon as those costs just keep jumping by mega bucks too. Do you know if it's means tested or just straight out stopped?
Trish sure hope that cold eases up soon.........they really are the pits when you feel so bad.
Yay! Kylie is back! Grrr, don't you just hate it when you have no internet? Glad you are resting as you should but hope things improve soon.
Had my INR done again this morning and after not taking coumadin for three days after a reading of 4.3 on Monday I was hoping it would be back in range but no.......it's still 3.2 so again no coumadin for me for another couple of days and then test again on Saturday. I will be so pleased when all this crap is done with and I will make sure it never happens again now I know that I have Factor 5.
Hope your days improve.
Love n hugs. Chrissy
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Kylie, so good to hear from you, I'm glad the pain patches have helped but can sympathise with not going too far from the loo - it's horrible isn't it!?
Chrissy wish I could wave a magic wand and make it all better for you xox
Jenn wish I could do that for you too. I certainly relate to the financial worries that are caused by cancer and it's a real bummer. Especially when you aren't feeling well on top of it. I will be keeping everything crossed for you that the MUGA comes back within range. I know how important the Herceptin is.
I don't think the private health insurance subsidy is being scrapped completely, but for singles who earn over $80k and couples - but I can't remember the amount - will have the subsidy reduced, and again can't remember the amount - mabe 10% - I didn't take a lot of notice as it didn't apply to me.
Will have to go and look it up.
Trish
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Hi All
I don't seem to be able to leave BC behind so am back. I find the forum very helpful with each stage of treatment. I'm getting some information from others about Tamoxifen. I'm now up to week 7 and have developed insomnia. I can only sleep for about 3 hours a night. I've tried Melatonin but I still wake up and can't get back to sleep. I don't have any trouble falling asleep.
Anyway I've been reading about how you are all going. Do you play Scrabble Jen? I have got into Words with Friends (similar to Scrabble) on Facebook. It's quite fun if you are interested. Are you on Facebook? I can understand how you feel a bit nervous about suddenly having to spend the next 2 weeks at home when you are used to going to work each day. I felt like that initially but now I've decided I won't return to work. However I am older than you and was only doing casual nursing shifts. I hope you feel better soon and that you can continue with Herceptin. BTW the withdrawal of the subsidy for medical insurance ony effects those whose incomes are greater than $300K.
Glad to hear that the move went well Kylie and that Kate's daughter got engaged and that Chrissy is getting mobile. And I see you have a new Aussie from Sweden. Hope your cold is ok Trish. Sorry if I've forgotten anyone
Gerri
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Thanks girls for the info on the subsidy. It won't affect me thank goodness as I'm on a disability pension and only get $14,800 per annum. DH is about to turn 65 so will be applying for the aged pension so that won't be that much either.
Hey Gerri, nice to see you! Sorry you are having the sleeping problems. Have you tried taking it at night? I was having the same problem to begin with on Femara but changed to taking it at night and it is much better. With the Melatonin, have you tried the slow release one? It is available and will help to keep you asleep........worth a try.
Love n hugs. Chrissy
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Hey Chrissy if your still around. I saw Alesta's thread and just wanted someone to tell her it could be a simple torn retina. My sis who is 48 got one about 6 months ago and while its a pain in the butt and made her dizzy for a week or so, my understanding is it either repairs itself or detaches in which case treatment becomes necesary. As for my sister, she has had no treatment and while she still gets it occasionally it has no impact on her qol. She's still allowed to drive etc.
Dont feel right in posting anything in the iv forum, so if you feel this advice is okay to pass on please do so. For Alesta, googling detached retina will be much less scary than brain mets. Hope this is of help
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Lyndal I have passed the info onto Alesta for you. Thanks.
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Thanks Chrissy. Her symptoms just sounded exactly as my sister described them to me. Ive been told its very common in 50-70 year olds and half expect to get it myself in a few years, though I hope I dont. Amazing how our eyes deteriorate after 40 sigh. Kind of regret all that reading I did by torch light under the covers when I was a kid lol
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Lol, me too Lyndal as I now wear multi focals and am as blind as a bat without them.....lol The one thing about aging is that you don't feel old just your body breaking down and telling you you are most definitely on the wrong side of the hill......lol
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Wow Trish, these bank cards sure are a worry. I went shopping last night and my card was declined, then told me I had unauthorised use, a trip to town today to try and sort it out. I just spoke with DH, he drove to Cooma this morning (I told him to wave) and said he had snow blindness it was foggy all the way: I hope it clears to a nice day.
I lay there last night thinking about Jenn and her feelings about earlier xrays and BC. All through this I have looked up stats, read of factors believed to influence cancer etc and continually wondered where was the questionnaire about my previous history..... Seriously if I wanted to sign up for the Coles discounts I would have to give more personal info than I seem to have given during this whole cancer treatment. I had been put on several bi-polar meds over the years which made me put on weight, my breasts swell up, my periods go haywire etc. as well as other things and I always get the brush off. If we aren't taken seriously and our histories thoroughly recorded how the heck will they ever know. Well that's my rant. Kylie x
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Hey Kylie, Hope you are feeling well?
Yes, our medical histories are so disjointed here in Australia and New Zealand. We aren't legally entitled to copies of our medical notes and unless you spend your whole life going to the one GP everything gets lost.
I'm sure the MO, BS etc probably all initially asked about my medical history, but since those x-rays happened for me between the ages of 13 and 16 I had no idea they were "significant"...
Can't remember if I told you all I saw my BS on Monday morning. She seemed to be of the opinion that it's not unreasonable for me to be thinking of taking both breasts off - but she did kindly point out that if any breast cancer was going to kill me it would be that first one. I don't mind people talking straight with me...
Because of the positive node with no ALND she has said that I will still need the rads and then could look at surgery next year but my only options would be the flap surgeries if I want to do both breasts and have them match. She thinks skin and nipple sparing on the left and full flap on the BC right side. Those surgeries look like hell - not sure I am up for that much time away from work :-(
I have my meeting with the RO next Tuesday. She now has my "new" history and said she will discuss it on the day - should be interesting...
Still in bed as it's my first day off for the next 2 weeks at home. I have 10 of 12 Taxol/Herceptin this afternoon and my girlfriend is coming with me. Darned husband decided to "work" from home today - I feel cheated of my quiet morning. We have spent far too much time in each others company lately, particularly since he's obviously mildly depressed and is a very "wet blanket" for company. I don't have the strength to be "jollying" him along and although I have suggested he go see the psych onc he's too manly to admit it might be useful. So I'm spending my day with Eyeore (from Christopher Robin). Woe is me.... geez...
Jenn0 -
Heaps of cyber hugs for you Jenn. I hope you can relax and recooperate during this exile from work. Ive said it before but its worth repeating, Im in awe that you have been able to work for as long as you have. I could barely get myself out of bed after day 1 of the first treatment, never mind trundling off to put in a full days work. If you can't make yourself feel better any other way, think of this next 2 weeks as a break that you well and truly deserve for being such a trooper thoughout all of this.
I agree with you Kylie and Jenm about how they dont gather enough information to truly work out what is causing us to develop cancer. Is it the millions of litres of diet coke Ive drunk in my lifetime? Is it the rubella injection we all got? Is it the pimple cream we used when we were 14 lol. One cant help but think if they got a huge amount of data from all those diagnosed with the various BC's that they could really start to work out what is causing it, what to avoid feeding your kids etc etc. (My hope is that Brussel Sprouts turns out to be a leading cause of cancer and Brussell Sprouts are banned for all eternity lolz)
Meanwhile all we can do is what we are told and try not to wonder about things like that until commonsense in the medical industry catches up with technology and the fat pay cheques for dr's and pharmacies.
Since seeing my BC the other day Im really gonna try and make an effort to eat, drink and sleep better. The relief of not planning for another op is unbelievable and has made me feel like Ive been given a second chance - pretty much for the first time since I was dx'd. Its not my nature to get fully into vitamins and minerals (sick of pills and meds anyway lol) and I probably still wont exercise a great deal, but hey any effort is better than none. Guess the main thing I HAVE to do is give up smoking or I'll be dx'd with lung cancer next and that would truly suck.
I know one thing, Ive been worrying about a recurrance since my mammo and us in Nov, so 6 months later that on and off again worry was all a waste of my time, effort and emotion. Its hard but Im going to try and work on my attitude towards things and change my mental state to expecting to be ned for 30 years instead of worrying from mammo to mammo. At the end of the day if the worst happens, worrying about it for years in advance isnt going to stop it from happening and will only cause me to be living less than a full life in the meantime.
Thanks for listening ladies. Hope all not in treatment are feeling great and have plans for a good weekend. Hope all those in treatment are gentle on themselves and feel better soon.
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Well went to my gp this morning, this cold is horrible. Both DH and I are on stemetil to stop the nausea - geez really do feel like I'm back on Taxotere. Well almost, not quite. Have managed to keep down half a piece of toast and a mandarin today. I really hope none of you in treatment pick this up.
Trish
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Aww Trish. I cant imagine how bad you and DH are feeling. Last bloody thing you needed!!!! That magic wand sure would come in handy and Id wave it over you and your dh as well as Chrissy, Jenn and the rest who arent feeling the best at the moment.
Hope you get over this real fast so you can get back to normal mate.
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Trish, i hope you both feel better soon, it sounds horrible. I had to pick up ds from school sick with flu and hubby sick too; Day 8 after chemo I hope my Neulasta worked!!!!
Lyndal it's great if you are getting to a place where you can relax and take each day as it comes. I am in this weird headspace of trying to see beyond chemo and radio, yet worrying that once it's over then what?
Jen, I really hope you can enjoy your time off. I don't think I have ever been so frustrated and bored since this started. I gave up full time work 3 weeks before being dxed and although I feel rotten most of the time I am often at a loss for things to occupy myself. I love to read but even that is hard to do when you are sick. I spend a lot of time feeling guilty for doing so little, yet can't manage to do anything.
Chrissy, a big hug to you and everyone else. xx
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Hi all
Well have been able to keep a whole piece of toast down so far. Am not feeling quite so nauseous today, so hopefully have turned a corner.
Kylie, it was foggy yesterday, but that's pretty normal for this time of year. Your DH could have called in for a cuppa, but given the ferocity of this virus, perhaps it's just as well he didn't :-)
Good for you Lyndal with the new attitude. Yes I decided that it wasn't worth spending the rest of my life in fear. What will be will be. I'm trying to live a healthier life too, and had started a diet. Got a boost to that this week, I've lost 2kg in the last couple of days lol
Gerri - good to hear from you xox
Hope everyone else is going ok. I'm off to bed for another nap
Trish
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Hi everyone. I'm back from my cancer couples weekend in Perth. It was so good. The emphasis was more for couples getting lines of communication back on track due to cancer in the home (or on track if they never were there in the first place). It was highly beneficial. Both hubby and I took a lot from the course. Never too old to learn new tricks and can only improve things.
There were only 6 couples, 3 others had to drop out last minute due to health reasons, so it was a very small group of us and it was in the most tranquil bush setting with the Indian Ocean in the distance. It was facilitated by two councellors (councillers?) a man (for the men) and a women for us girls. It was open to any sort of cancer, and there were 3 of us ladies there with BC. There was only one man who had cancer and it was so interesting (and enlightening) to listen to his wife tell how it affected her and what it was like for her family (they had young children and sadly his cancer is terminal). There was lots of alone time where couples would to off into a quiet place and talk about what had been discussed in group. Some couples were moved to tears at the end of the weekend at how much it benefited them and I guess it gave them the opportunity to really open up and be honest with each other. So it was very enriching and we took a lot away from it. We were given accommodation in Perth with all meals and it was all funded by a foundation who stated that the money must be spent directly for cancer patients and not on third parties (administration etc). One lovely couple were flown in from Esperence to attend it, all courtesy of the foundation. How truly wonderful.
So if there is one being held over your way (the cancer council in your state would most likely be involved in organising it) I can highly recommend it for everyone and their partner/carer.
Not much other news from me. Oh as my hair is slowly growing back and is very silver and looks like it's slicked back and I'm a little on the chunky side, I am being told a lot lately that I resemble Maggie Tabberer. Seems I'm morphing into someone other than my old self and it's a little alarming not to look the way I used to. Early days though and I'm sure with more hair, I will have more choices.
xxxx
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Sounds wonderful Kate. So glad you had a good time and it does sound like a truly caring concept for those with partners.
If your anything like me when I finished chemo your face is swollen from the steroids and will slowly return to normal over time. It took me ages to recognise myself in the mirror, specially as I had very long hair pre BC and Ive kept it short since. Should be a law of nature that if you lose your hair to chemo, it should come back and never go grey or silver lol.
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Kate I'm glad you enjoyed the weekend and got something out of it. There is nothing wrong with being compared to Maggie Taberer.....she is beautiful!
The steroids that are given during chemo really do a number on your system but thankfully after a while it does return to normal. Also, your hair even though it's silver right now, you will be surprised that it does change colour and can look totally different by the time it has gotten a little length on it. Facinating how and why it does that.
Trish I sure hope you are feeling a little better and your cold is abating. I had another BC ring me the other night and I could barely hear her. She has what sounds like the same thing as you do and is really under the weather with it as well.
Jenn is it one more to go? I sure hope so as I know you will be struggling by this stage. That light is getting closer and the tunnel shorter. Soon you will be able to heal. (((((hugs)))))
I've had a quiet weekend just vegging in front of the fire. I know it's cold when the two cats and the dg are vying for the spot right in from of the hearth.....lol. Had another INR done yesterday morning and after six days with no coumadin my level had finally dropped to 2.3.............a good level but last Monday it had climbed to 4.3! Now that was a little scary! I will be having it tested again tomorrow and then again Wednesday and Friday. I think I'll get this to level out by the time I won't need to take it anymore......lol. I guess it just depends on the result of the US at the end of the month to see if the clot is gone or not............. here's hoping it is as this up and down with meds is really a pain in the ass!
Hope all have a good week!
Love n hugs. Chrissy
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Chrissy - 2 more :-/ Sunday was bad here for pain all over and some family emotional stuff with my 20yr old who was supposed to help out with something for her younger sister and who completely disappointed me. This chemo is truly trying to kill me and it appears that my daughter couldn't care less...
Heart function test Monday morning. Not even sure how I can physically get there as I am so weak.
Jenn0 -
I'm back in the land of the living again lol
Kate your weekend sounded fantastic, what a wonderful thing. I've not heard of anything like this, but it would be such a great help for the partners of cancer patients, as well as the patients themselves. I'm so glad you and your dh were able to go. And I agree with Chrissy, Maggie Taberer is one gorgeous lady! Go you! My hair was a weird color when it was growing in too, sort of a gun metal grey - absolutely nothing like my normal color.
Chrissy, hoping your levels stay good and you can get off the meds, they really are a pain when you have to take so many.
Jenn, sorry your Sunday was so bad, but as Chrissy says, the tunnel is getting shorter and the light stronger. You are almost there and we will all cheer you over the line
Trish
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Got here. Now waiting for the scan. Very nervous... I do bp and pulse at home and this morning I was tachycardic (racing heart) with a slightly irregular heartbeat according to my machine :-(
Jenn0 -
I'm thinking of you, Jenn now calm down and think good things. Keeping everything crossed for you
Trish
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Stayed calm and did breathing counting! The test was done much quicker than previous ones and when I asked why she said that the faster the heart beats the faster the test - ooops :-/
But, when she came out at the end to tell me I was good to go she gave me a secret little "thumbs up" and mouthed "looks ok". It always pays to get to know the staff and be nice to them ;-)
So, my heart is beating fast and my bp is doing weird things but it looks like my LVEF is not affected thank goodness. I will call my research nurse tomorrow to get the official word though.
I have a friend on her way over to pick me up and go out for coffee and a chat - looking forward to it after such a dark emotional day yesterday. I am still so angry with my daughter...
Hope everyone is OK. Glad to hear you're on the mend Trish, hope Kylie is feeling ok and glad to hear Kate is doing ok with rads.
Jenn0 -
Yay Jenn! Good for you. Enjoy your time with your friend xox
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Trish nice to see you back!
Jenn glad to hear that the heart is good to go! Enjoy your outing with your friend and please let the disappointment of yesterday go as it will only make you feel worse. Sometimes our kids do disappoint us when we least expect it but sometimes we also forget that they are the ones watching us slowly die when we are going through chemo. Perhaps they are struggling with that as well............let it go, yesterday is done and tomorrow has not yet arrived so just enjoy the day.
Love n hugs. Chrissy
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Hi all, Had my rad onc appt this morning so now have it all planned. The rads scare me more than anything else in this whole cancer thing - even more than getting the cancer back - yes! Particularly since we've all now realised that the large number of diagnostic x-rays in my adolescence probably caused this stupid breast cancer to start with.
But, even with me considering a BMX the rads don't come off the table because I had macromets in my sentinal node (and chose no ALND). So I went and was a good polite girl even though inside I was screaming NO NO NO and just wanted to have a toddler tantrum...
She preferred the traditional 33 days including boost at the end or the newer 25 days with boost happening at the same time. I preferred the 16 day "Canadian" protocol (geez it works for all the Canadian women!) or the 25 day (if I have to). She compromised with the 25 days (breast, axilla and she accepted my "no" to supra-clavicular) so I was good and agreed without tearing my clothes and spreading myself with hot ashes. I know that I'm going to be crying my way through this anyway...
Planning CT and tattos are on the 5th of June. Treatment will start on the 18th of June and finish on the 25th July.
So glad DH Tony came along. He has downplayed EVERTHING so far ("tired? You should go for a walk cause you'll feel better") and although I had clearly told him the side-effects of rads I could actually see him thinking "A few days of sunburn - no big deal".
Well the RO very clearly described the fatigue and burning potential and then very clearly spelt out all the potential long term side effects (lymphedema, up to 5% permanent lung damage guaranteed (this high due to axilla inclusion), guaranteed rib damage with potential for spontaneous breaks, secondary cancers etc etc etc). My poor Tony was quite quiet and pale by the time she finished. I think he now understands why this is going to be harder for me than the chemo...
I'm not having supra-clavicular rads even though she wanted it in the mix. The risk/benefit ratio just doesn't make sense to me. DH asked what would be the treatment for recurrance in that area and the treatment would be rads - so really no point doing them now - might as well only do them if we ever have to! I feel quite happy with that - although hubby isn't.
I have ongoing pain in my breast not near the original site and I had an ultrasound but they couldn't see anything there causing it. I asked her if the rads might blast the pain away - she doesn't think so :-(
Jenn0 -
Oh, and I phoned and got my LVEF from my heart scan yesterday. Down to 69% from 73% so not significant and can still do the herceptin!
Still no explanation for my diastolic increase or racing heartbeat though...
Jenn0
