Australian Sisters
Comments
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I've never heard of DES. There is always something about older drugs coming out and I'm sure in the years to come there will be things about the drugs that we take now that will be found to cause problems.
I'm 5'4" so not overly tall but never felt like a short ass until my kids grew up. The shortest of them, DD1 is 5'8" , DD2 is 5'10" and son was 6'2". The grands are all taller than I am now and they haven't stopped growing yet!!! Guess I'll end up being one of those little round grands that the kids all call the gnome........lol
Yes Racy, I thank my lucky stars that the Femara has been very kind to me after the effects of the Arimidex. When I started, the worst se was the fatigue but that is not too bad now and of course the hot flushes but other than being annoying I cope very well with those. The fingers get a little stiff every now and then but I also have arthritis in my fingers so I would say the stiffness is from that rather than the meds and the same goes for the other joint pain which I might add is not too bad.
Jenn, yes I forgot about the breathing exercises to relax, they really do work!
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JENN - I will be right there with you in spirit tomorrow. I feel exactly the same way about my #2 looming. Yep, pink poison is what it is... but... it is 'good' poison and for a reason and here's hoping that it is manageable for you again.
Please let us know how you get on afterwards.
xoxo
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Chrissy - it was called stilboestrol in Aust and NZ (I've been researching) - thing is how do I find out if I was exposed to it - the increased risk for bc and clear cell cervical cancer is quite high. I feel a law suit coming since 53 DES daughters have just been successful in the US. I just happened to see the thread here last night and had never heard of it, got curious, had a read of it, then remembered my mother had been given something back in 1952 to stop miscarriage.
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Well shit! Sorry girls, but I've just got off the phone to my cousin and she was dx'd with BC today. Damn I hate this disease!
Sue, is your mom still living? If so, would she remember? Other than that the only other way is old medical record but how the dickens can you find them?
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Chrissy, it's an epidemic and unbelievably common. I hope your cousin's case is more easily treated.
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Racy she's just waiting for her surgery date for lumpectomy and SNB. Apparently it's an early dx so that's good but I'll wait until she gets her final path before I breath easily for her.
Unfortunately it's getting waaaaay too common!
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Sorry to hear that Chrissy :-( Is she nearby?
Jenn0 -
Chrissy - yes she is still alive and now I know the name that was used in NZ, she may remember. I do remember us discussing it once years go but not in the context of increased bc risk. Sorry about your cousin - I hate bc!!
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Jenn - we're all there with you today. I can understand your feelings of dread, meds will help lol I always took a full valium on the days of chemo.
Chrissy - so sorry to hear about your cousin - that just sucks - but we all know that.
Sue - sounds like you have a lot of research coming up!
Well - tomorrow's the big day for me - I will be de-ported! Not sure what time it'll be yet. But it is done under a general anaesthetic. I did ask if it could be done with a local or twighlight - and they haven't come back to me to say whether it can be or not. Guess I'll find that out tomorrow.
Trish
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Trish, good luck with your de-porting....lol
Jenn, been thinking about your all afternoon. I hope everything went well for you, now just take it easy until the worst se's have passed.
Sue hope you can get the information you need from you mom and keeping fingers crossed that you are not affected.
Thanks re my counsin, she lives about 3 to 3 1/2 hours from me so not so far. She seems to be very pragmatic at the moment so I'm just waiting for the crash that I know will come. She knows I'm always here to talk to if she needs and just to chat......you know how it is........perhaps it's a good thing that I've walked the road before.
Well, I got a really unecpected phone call this afternoon........yes another one but this one is good......lol....the ortho's secretary rang to say they have an opening for an earlier surgery date for my knee replacement and would I like it...............what a silly question!!!! Of course I like it !!!....lol. So now the new date is March 30th so only a few weeks away.....yay!!!!!. I'm not looking forward to the op but I am looking forward to having a good strong knee that won't give me gyp everytime I walk somewhere!
Love n hugs all. Chrissy
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Trish, another celebration for you! I never had a port and think I would have hated it - just anothet reminder of BC.
You may think I'm strange but I am in the process of getting my radiation tatoos removed. I had them lasered in November but the one in the centre of my chest is still noticeable if I wear a lower cut neckline. I see the doc about it again next week.
I'm not really vain but I would like to look like my pre-BC self, especially as noone knows about it. That's why I have hair extensions and am getting my curls straightened next week too!
Take it easy Jenn.0 -
Chrissy - great news about the knee op. You won't know yourself and you'll be able to literally run around after all your grandkids, heck you might even outrun them. Good positive thinking there.
Jenn, wondering how round #2 went for you today. Have been thinking of you constantly and hope my happy vibes reached you.
I didn't realise that you get a real tatoo for radiation. My chest skin is the nicest I have left on my body so I don't want it permanantly marked when i have to have radiation, and what with my new boobs and fantastic cleavage I too will be wearing lower cut tops. Ah well that's way down the track for me.
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Chrissy that's great news about your knee replacement. Not too long to wait now :-)
Racy - I understand about getting the rads tats removed. My port didn't really bother me at all - well not after the first month or so, but I wan't to remove everything that I can that has anything to do with bc - my body has had enough! :-) I'm laughing at you about having your hair straightened though - I've always had curly hair, and the longer it's getting now the curlier it's getting. I wouldn't know what to do with straight hair!
Take care all
Jenn - still thinking of you
xoxo
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Back and straight into bed.
They gave me the Emend and Kytril tabs and then started straight in on the epirubicin! I felt nausea really quickly. Ended up having to have an Ativan and then iv maxalon. I'm now feeling overmedicated and lick ive been struck by a bus :-(
And I felt so ill i couldn't suck my ice - so I guess this time I'll wave bye to my taste buds :-(
I hate this so much...
Jenn0 -
Sending heartfelt HUGS to you Jenn.
Make sure you tell your oncologist about the reaction when you see them next. Theres a drip of something (think its antihistamine but I could be wrong as I had horrendous chemo brain back during chemo) but it makes you sleepy and helps curb the nausea when they start the chemo. They dont give it normally, only when people are extremely nauseus during delivery.
Take it easy mate, try to nibble on a sao and have very tiny sips of water as often as you can. All things I did to try and get through the nausea. Doubt anything could have saved your tastebuds. I had mine for the first few treatments, but they eventually faded and came back gradually over the months post chemo. Being ultra nauseous as far as I know makes no difference and tbh Im not sure sucking on ice does either. But the ice probably helps dillute the crap faster.
You'll get through this and feel more like yourself soon Jenn. Meantime please dont push yourself to go to work too soon. The accumulative effect of the chemo battering the good and bad cells is going to result in more fatigue each time and its not somethng you can fight through. Its your body telling you to take it easy and rest so it can recover.
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BTW, not sure Ive told the story before, but you know the red chemo they inject in?? the stuff that cant be dripped in?? I had just finished all the chemo for one of the days and as usual the saline made me need to go to the toilet straight after. So up I popped, went to the toilet and thank god the hand basin was close to the loo, cause that red shit was coming out both ends. The stuff wasnt in my body for more than half an hour and was coming out of my nose and mouth and mannnnn it burnt. I can laugh about it now so it goes to show, while it feels bad today/tonight etc, in a very short period of time you will hopefully look back and think, hey i did it, and if thats as bad as it gets, Im gonna get through this no worries.
Now is about the time you will realise that you are so much stronger than you ever thought you were Jenn and you should be proud of that. Chemo is not easy, none of what we go through is easy, but we do it, we get through it and at least in my case I can laugh about the bad times and think hey, that wasnt so bad.
A phone call to or from a friend or loved one also helps. I had a call from a friend I hadnt heard from in ages when i was at my lowest point throughout chemo (which for me came in the first week of the first treatment when I was swearing theyd have to drag me kicking and screaming to get another treatment. I was sitting at home by myself with tears in my eyes and a bucket on my lap when my friend called. By the time she hung up I was feeling better and not sorry for myself anymore and I never felt that bad again.
No idea if any of this helps, guess im just trying to tell you that you'll feel better soon and it may well be that this is the lowest point you get to so dont worry. Just rest and recover and with luck the next few treatments will be easier.
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Kate, I forgot to ask, how are the ulcers doing, did the diflam help for you?
Awe Jenn, hope the nausea passes quickly for you, in the mean time just take it easy.
Racy, I don't have tats for chest rads as I didn't have them but I do have a few little black freckles on my arm where they zapped the rat in my arm but they are not very visible to anyone else.
Lyndal, how are you doing?
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Oh Jenn
I'm sending you lots and lots of ((((((hugs))))) hang in there sweetie I hour at at time. And I know you probably don't want to but you have to keep that water up. The red stuff can fry your bladder - you have to flush it out.
Lyndal - that's awful - I wouldn't have gone back!! I know we are all "brave" but geez, some of us are just braver than others.
Jenn - hope you can sleep tonight and not have to worry about nausea.
Trish
xoxoxo
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Slightly off track, but recently found out information that may help you ladies now or in the future. The Oz government has a dental care plan that pays $4200 over 2 years for people that are on long term medication (far as I understand it). I didnt qualify for just arimidex or chemo but now I do qualify because of the medication given to try and avert osteoporosis. You need to be referred by your gp and it aparently takes 2 weeks or so for the paperwork to go through. I know of someone who received the benefit cause of asthma and another I think from bronchitis, so regardless its worth checking into if you feel that your treatment has affected your teeth or gums
My teeth have always been good but ive cracked 2 in the last few months and my bite isnt right. feels like im hitting in places I shouldnt be which is causing the issues. So now the govt will pay for a dentist of my choice to sort out all the issues so that hopefully i will retain my teeth in good working order. Not sure if you can qualify based just on the post chemo hormonal treatments of even for the chemo, but if you start having mouth issues, its certainly worth asking your gp.
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TRisha - Good luck with being de-ported tomorrow. Hope it is quick and easy and youré home and hosed soon.
Jenn - Oh no. I'm so sorry you were so sick and feeling so blah and miserable. I hope you have a good nights sleep and tomorrow is a much better day for you.What did they do differently this time to your first time that made you sick? Did they also give you the F & the C chemo? or just the E??
Chrissy. Mouth ulcers are nearly gone!!! I got some Deflam and they are on their way out. They were only small ones to begin with, but glad that they haven't turned into a bigger problem for me.
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Lyndal, thanks for the info. I'm going to check with my doc as when I was dx stage IV I was originally on Bonefos and I had to have three teeth removed, all of them molars and now I have problems chewing my food. I should have a partual plate but couldn't afford it........maybe I could get it through this scheme. I am no longer on the Bonefos because of problems it was causing me but it was because I was going on it that the teeth were removed......mmmm....food for thought.
Kate I'm so glad they are almost healed! Much better to get rid of them while small than let them develope further. When you feel them coming in future use the diflam and try and knock them out befor they even fully develope at all.
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Chrissy I sure hope the info helps. Do let me know the results when you speak to your doctor. The way the dentist explained it to me, if your health and treatment are impacting on your teeth/gums etc and your teeth/gums are impacting on your health, then you should qualify for the plan. Sound like that sure means you and I would love to be a small part of you being able to get stuck into a big fat juicy steak in the near future lol
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I saw a woman get her dental bill paid by Medicare recently and the receptionist told me she was diabetic. After the amount he charged me to fix 2 fillings - gap $188 after MBF refund - wish I could jump on that gravy train.
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Trish hope your port came out without any hassle and that your back home with your feet up having a glass of wine.
Jenn, Im guessing from your silence today that your feeling pretty lousy. I know the last thing I would or could have done was spend time at the computer the first few days after chemo. When you are up to it and see our messages you'll know that we are thinking of you and hoping you feel better soon.
Kate your feeling well now?
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I'm back in the land of the living lol I have this secret dread that when I have an aneasthetic I'm going to die. So usually a bit worried going in - even for something minor lol. But I"m here and all went well.
Yes - I'm up very early - having slept for most of the last 17 hours, wanted to get up and check in with you girls.
De-porting went very well. Was a bit uncomfortable yesterday afternoon (I didn't get done till 2.00pm - which didn't impress me - as I had to be in there at 10.30!). Got home around 7 and had some toast and tea and off to bed. I thought I'd be uncomfortable in bed, but went out like a light and really no discomfort at all this morning. My head is going to give me some grief I think - that's from my neck - you know how they have your head at unnatural angles when they give you the aneasthetic - I have a couple of spurs in my neck and get bad headaches from them.I can feel one coming unfortunately - they are called cervical migraines. So have taken a couple of panadeines to stave it off if I can.
But - as far as the port is concerned - hardly know it's been done.
Hope you are all well - Jenn thinking of you sweetie, hoping the silence isn't ominous
Kate - hope you are doing well?
Chrissy - how's all with you?
Lyndal - didn't have a wine last night lol - but had a great sleep! :-)
Sue - what's new with you?
Racy - hope the gym is still on your agena? Lost any weight yet?
Sheila - you still there?
Trishxoxo
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Hi Trish - glad the deporting went well. I have a big dent where mine was. I got some special stuff to put on the scar to minimise it - really expensive but worth it - Dermatix - obviously you can't put it on until it's healed.
I've only got the markets planned for tomorrow morning - otherwise I probably should vacuum downstairs now the rain seems to have gone. I hate housework and do the minimum unless it gets too gross to look at. Saturday's are always busy with grocery shopping and washing to do, hopefully I'll be able to squeeze a nap in.
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Fighting off the nausea again. It's not bad but I have to really time the meds. Am fighting the dry mouth as well as the thrush on my tongue that has come back (no blue cheese to cause it this time?).
Flushed in the face and chest this time?
Worked 3.5hrs yesterday morning from home (1/2 day) and did well. Then relaxed for the afternoon and a girlfriend came over and redid my varnish on my toenails for me.
Woke at 5 this am, took my Emend and then got cramps 5min later. I really think it was my ovaries protesting :-( I apologised to them and had a good cry.
Went back to sleep and have only just woken up at 8.40. I think I'll lie here a while.
Hoping we hear from Kate...
So glad you are ok after yesterday Trish!! :-)
Jenn0 -
So good to hear from you Jenn. Sounds like it's not great, but not as bad as it could have been. We're all there with you - is it feeling crowed at your place? lol
Trish
xoxo
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Hi everyone.
Sorry for my silence. I'm here and I'm OK. Had a mental meltdown day on Thursday and I've been dealing with that, but I am on track after having some counselling yesterday. Feeling my old self again with gratitude for other people listening to my problems and knowing that I am moving forward and that the future will be better.
Jenn - so relieved to see you here again. At least you know not to blame the blue cheese and mandatory from now on, to eat as much as you want after chemo, as it isn't going to make any difference. I'm impressed that you managed to work for a few hours.
Great news Trisha about your port. What next in your treatment? or is it all over now??
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Yay Trish!!!!! All done and dusted.......now to heal and really start to live!!!! YAHOOOO!!!!! So glad the anaesthetic went well for you....there is nothing worse than having the fear of not waking up so I'm very glad you overcame that.
Awe Jenn, rest, relax and really take it easy till the worst passes. It may not feel like it but you are doing very well.
Kate, sorry about the meltdown but we all have them and they are good to get rid of a whole lot of tension. It's really good that you got to talk to a councillor and get rid of some of the built up worries. Never forget that you have a heap of willing ears here as well.
Racy, yeah, we forget you're the good girl!!! How is that workout going? Has it started to improve the body tone and weight? Please let us know so we can pretend that we're well I'm a good girl too.....lol
Sue I'm with you on the housework front so it's just as well the I have a DH that doesn't see the dust..... hahahahaha! As long as he has clean clothes in his closet and good food on the table he is a very happy man.........lol.......aren't I lucky!
I'm doing ok but I had the worst night last night that I've had in a long while. The pain in my hips kept walking me up and then it was hard to find a comfy spot so I could go back to sleep. Needless to say, I did eventually and then slept till 10.30 this morning. There must be another change coming in as that usually sets the arthritis off..........oh well, if it's more cool weather on the way I'm not going to complain as I function so much better when it's cool.
Love n hugs all! Chrissy
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