Australian Sisters
Comments
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I too wish I'd had a bmx. I love Chrissy's description - one hung low - lol yep applies to me too. And Lyndal I love the one uddered cow comment :-) yep - feel a bit like that too. I had asked the bs if I could have both off at the same time, and he talked me out of it, I wish he hadn't, but I didn't know as much then as I do now. I wonder sometimes if some of my back pain has to do with being lopsided, I never wear a bra at home.
Kylie - a chainsaw, that's real farm purchase lol.
Jenn - no not great news, but certainly better than it could have been.
Well I'm off to Albury tomorrow girls. Doing a wedding for a friend. Bob's singing teacher is getting married and asked me to do the photos. I'm actually getting paid for it (extremely discounted rates though) which makes it our businesses first gig! lol Pity it's so far away - a four hour drive from Canberra - and we have to drive 45 mintues first to get to Canberra. So - going tomorrow and will be back Sunday. Not sure that I'll have time (or internet access) to post here, so hope everyone has a great weekend.
Trishxoxo
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Jen, i can't actually remember whether i did or not get alot of xrays. i will ask my mum, i remember the ones when i broke my foot at school falling of a stepping pole in the adventure playground, i kinda missed the grabbing ladder thing and fell between that and the pole and broke top part of my foot by toes. i was annoyed too as i actually and mastered those darn things and i fall off, it took alot of go's to get it to perfection, and i never got back on the horse so to speak. i had alot of xrays during that time. i guess yes alot of radiation would make sense from the xrays yes. see where you are coming from. i don't think i had chest xrays though.
Chrissy, i am going to look at your travel dairy too when i get an adequate amount of time to do so with out interuptions and noone wants anything of me. am looking forward to it.
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Chrissy, i hope all went for you at your Dr today and that clot has gone, and your knee is feeling alot better.
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Jenn it is a big decision to have a double mx. I had a single and nearly fell off my chair when my surgeon suggested that I have a prophylactic on the right side.(or at least to think about it) I thought about it over the months and it made sense to me. My mum had had cancer in both breasts and I was constantly waiting and being too paranoid to even do self examination.
I already had an expander in my left and when I told my PS of my decision she was VERY surprised (it was rare to have a prophylactic back then) but she did say that it would make it easier for her to match up the pair...lol
So I had the mx, expander inserted and the exchange to implants both at the same time...no regrets 20 years later.There is very little feeling which is a bummer but its given me peace of mind....even though I know there's no real guarantees with breast cancer.
Hope the trip to Albury goes well Trish..
jezza
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Trish. See you are coming to Albury on Friday. Maybe we could meet up on Sunday morning before you leave. I have guests on Fri and Saturday so those days are out for me. I am about 35 km south of Albury or I could go down there early. If not this time then another time. I will PM you my phone number. Hope the wedding photography goes well.
Gerri
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Hi Gerri - I forgot you were in that area of the world!
I've put your numbers into my phone. I don't think it will work though if you have guests on Friday and Saturday. We have to leave on Sunday as early as we can as my DH has to be back in Canberra before 12 noon to go to rehearsals (he's doing Iolanthe). The only possibility for me would be Saturday morning. I have the Friday afternoon tied up with rehearsals (for the wedding) and the family dinner.
I'll pm you my mobile number too - just in case. We are staying at Quest Apartments in Albury.
Trishxoxo
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Good luck with the wedding Trish. Pics to follow please..... xxx
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Thank you!
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I'm working tomorrow Trish and have commitments on Saturday morning. Not to worry. I'm sure it will work out another time.
Have a good time
Gerri
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Oh that's a shame Gerri - but if I'm down that way again, will certainly try to catch up - and if you are up this way same applies.
Trish
xoxo
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That will be a big weekend Trish, I hope you enjoy yourself and don't get too tired.
Well Chemo officially over. I got my smiley completion certificate and can't believe it's finished. Yipee.
A big hug to you all, thanks for all your unwavering support through all of this and as I head into the next stage it is comforting to know you will all be there. Kylie xx
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Yay, congratulations Kylie. Well done. A big pat on your back is in order I think (pat, pat, pat..) xxx
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Yay Kylie!!!!!!
I still don't really "feel" anything about not having to have anymore Taxol. Today was supposed to be the last day but because of the pneumonitis I will only have done 11 of the 12 Taxol doses, just like I only did 2 of the 3 cyclophosphamide doses with FEC (I officially did 2 x FEC and 1 x FE).
This week I have felt unwell from both the pneumonitis and the "usual" Taxol/Herceptin SEs and my hubby had his endoscopy and although we now know what his problem is he doesn't feel well and so there has been no celebration for my end of chemo...
I'm not sure when we will celebrate since next Tuesday brings ny rads planning session and today brings my first Herceptin only infusion.
It doesn't FEEL over for me... How do you feel Kylie?
Jenn0 -
Ladies, can you please enlighten me about a certain matter, i never had to last time but if it turns out i have to have chemo, i have heard the the imune system drops and you pick up infections easily, we are having to move house and going to a farm setting, how safe is it for me if i had to have chemo for having anything to do with animal stock, horses. cows, sheep, we have a number of animals. my sister reckons i t would be out of the question to even touch them. even cats. we have to move out there, the house we in has to be sold, end of story, that has been part of my worry, i love the animals and i like to be near them.
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FK. FK. FK. STOMP. SOB.
I have just gotten back from the optometrist. My eyesight has been getting worse (very short sighted already) quickly and I knew I needed to get it checked. I've had glasses since I was 10yrs old (now just 47yrs) and this is the first time ever that I was anxious about going.
Sure enough, my script has changed significantly. BUT I also now officially have CATARACTS in both eyes. I'm only just 47yrs old with freaking cataracts! Another SE from the chemo and steroids that is PERMANENT and will only get worse until everything is cloudy. At some stage I will need surgery to replace my lenses or I will go blind. As it is the optometrist said that my husband should probably do the majority of night driving from now on.
Good news (I'm trying here girls...) - no brain or eye mets (yay) and my optometrist tried to convince me that the cataracts are good news because once I've had the surgery I won't be short sighted anymore. She was kindly clutching at straws to find something good in this mess.
Jenn0 -
thats not nice Jen sorry to hear that, if you don't have enough already to cope with. glad you got some positive out of it, like no eye or brain mets. hope it gets better for you, Take care Hugs
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Nothing wrong with animals (my dog is sleeping up against me right now) but you will need to be very careful with your hygeine to try and avoid getting ill if your white cells are low.
Not every chemo drug causes low white cells. My FEC did but my weekly Taxol never did. Precautions I took are:
- antibacterial hand liquid just inside the front and back doors. EVERYONE in the family had to use it EVERY time they came in.
- antibacterial hand liquid in each car. Used it as soon as I got in the car each time. Made anyone else going to drive my car (touch my steering wheel) use it too.
- antibacterial towelettes in my handbag. Used them regulalrly if out and about and before eating anything while out.
- family constantly reminded to wash hands frequently, especially after using the bathroom or before touching the fridge handle or cooking.
- trained myself NOT to touch my face with my hands at all unless my hands had been washed.
- didn't "do" rubbish while on chemo. No touching the inside or outside bins.
- at work I had another antibacterial hand liquid thing on my desk. I used it always when returning to my desk from the printer etc and I asked others in my office not to touch my desk, computer, pens etc without using it first (or don't touch)
I don't thonk mucking out farm animals would be adviseable and I'm pretty sure that gardening is not advised without a face mask and gloves (if at all) as you can get cut causing infection or breathe in or pick up bacteria from soil etc.
Jenn0 -
thanks Jenni, that is good info. Take care. 0
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Jenn hit all the main ones Midnight. As well, flush the toilet twice for the benefit of those you live with. Wash your hands twice as well after going to the toilet or touching anything you know is dirty or germ infected, just to be safe. Pretty sure that was in my lit when I started chemo and I did it religiously. Avoid sick people like the plague cause for someone doing chemo, thats what its like lol. Have detol or some other antisceptic on hand in case you get a sore or a cut as you can get an infection very quickly. Would recommend buying bicarb of soda in advance for those pesky mouth ulcers that can start with no warning. (salt also does the job but Im not sure if it works quite as well as the bicarb). If you are advised to do chemo Im sure they will give you a lot of lit that will run thru the do's and dont's but for the most part if you think of cleanliness being of the utmost importance, I dont think you can go to far astray. In addition as youve read on all the boards, fatigue is the absolute pits. Dont try to do too much or it really runs you down fast. Im sure I went too far the other way and did absolutely nothing and then had a struggle to get back into any physical shape to even walk, but trying to keep your life at the same pace as pre chemo is very very very hard to do.
Not sure what the other ladies think, but far as losing ones hair is concerned, it really doesnt matter. Think of it as a badge of honour. It will grow back. Frankly I went bald around home and at the hospital and only bought and used a wig when I was well enough to pop into my shop or on the two occasions I had to go out for family dinners during that time. As a side note, dinner at a chinese restaurant when suffering nausea is a really bad idea
After the second treatment, I couldnt give a rat's a$$ if someone looked or stared at my head. The natural brazzilian is awesome and not having to shave your underarms or legs is soooo cool. Missed the eyebrows and eyelashes, but soon as I finished treatment and I had a few of each, I went to a hairdresser and had them tint what was there dark and that made me look like I had heaps.I have 5 dogs and all sleep on top of the bed with me and I managed to not pick up any infections by following the above. In addition being on the farm may well help keep you away from the sicko's as you REALLY dont want to be getting a cold or flu during that time as a few here can attest to. Supermarkets and their trolleys are just a haven of germs waiting to attack, walking past where someone has just coughed or sneezed in a shopping centre is asking for trouble and you cant make everyone cover their mouths lol, so avoiding places with lots of people is a smart idea. Ask anyone else in your family to avoid people with colds and flu's as well or they will just bring them home to you. Im sure for the short period of time involved, people will understand. Chemo is hard enough without having flu's on top.
Jenn, Im so sorry about your eyes. I had perfect vision once upon a time. I know that pre chemo I could read a book without glasses. I couldnt read thru chemo as had no attention span, but when I started trying to read post chemo, i couldnt see a thing. Went and got 1 x glasses and then the following year up to 1.5 but I think its more the age I am rather than the chemo, Least thats what I tell myself.
Working hard not to blame chemo for every single thing that goes wrong for me lol. I'm really glad about the no brain mets Jenn. Youve had a hard time and are due some good times I reckon. Stuff your eyes, you dont have to do any chemo any more and thats brilliant. Took me a few months to fully recover from chemo so if the same aplies to you, perhaps you and hubby can have a second honeymoon once you are both feeling better. Something really nice.0 -
I'm beginning with a question - have any of you had trouble with getting your onc to listen to you regarding bone pain? I am 90% sure I have a bone met in my left hip but my onc just won't react' keeps saying 'your bloods look good - but I have read heaps of people whose bloods were good and yet they were getting fractures from mets! Maybe he is passive because I am still in initial treatment and there is nothing more/different he would do any way... also read that they will put off identifying Stage IV until necessary as that has a pretty bad psychological impact (protecting us!)- but I would prefer to know what I'm dealing with.
Midnight - I live/d with animals during chemo and working with daycare kids (on the days I could get out of bed!). I live alone so do all the rubbish, cleaning cat poo tray etc myself .... No infections or anything (except one I picked up from surgery from the hospital!). I think if you are healthy going in you'll be fine. I'm on second-line chemo now and have not changed anything - still going ok which is about half my old pace!!
Lyndal - I agree ... Hair - who cares... it seems really huge at the very beginning but that perspective changes really fast and it grows back anyway - new outlooks and all that ;0 feel the same about my mastectomy now too - regulary go shopping without a prosthesis - but wear one at work so as not to freak the kids out.
Jenn My eyesight has crashed with chemo too... my onc doesn't believe me; keeps saying its my age but I know its too fast - went from 1.0 in Nov 2011 to 2.0 in March 2012... and its still worsening
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thanks girls, you are very informitive and its much appreciated. as far as my hair is concerend, not a big worry, i was born with tight curls and then they all fell out when i was about 8 months and my hair went straight and apparently my mum cried, and it is so fine, i am hypothyroid too so does not help the cause, maybe if i loose my hair thru getting chemo, i may get it back curly, lol, save the perms. just a form of optomism at the moment. I am expecting everything to be fine, but will deal with what ever comes, its the dam waiting that is the pain. You have to aquire alot of patience in the Breast cancer bussiness. Dam its cold here, think i will crawl under my warm blankey. the gas heater ran out and it needs a fill, so cant have that on. cheers girls.
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Sian, here is some advice I wrote to one of the January chemo women who was having
problems getting pain meds from her doctor. I hope this helps...
I find that with doctors you have to use words that make them realise that you are actually asking for something. Try words like untenable, unbearable, acute, persistent, significant, significantly affects my quality of life, to describe the condition.
Then specifically ASK for a treatment option. Use the words "I need you to give me a treatment option to address this."
We are mostly pretty bad at actually asking for what we need - on the whole we tend to assume someone will feel sorry for us and just offer us something without us having to ask. Mostly we are wrong...
Jenn0 -
Sian, Chrissy or one of the others will know more for sure, but off hand Id insist on having that area xrayed. Without being pessimistic or being a scaremonger , I remember yonks ago one of the professionals somewhere in the cancer field told me that by the time the blood count shows, its too late and cancer is already on the move. If its just one bone met, caught early it has to be better than many mets later. The sooner its identified the better I would have thought. I know if it was me, Id want to know and not just be worrying about it. Sometimes the dr's dont give us credit for having the guts and ability to cope with the hard stuff but we are women and not jellyfish and we can fight through just about anything life throws at us.
Equally there might be a trial on offer for a situation like that which may differ from your current treatment and increase your chances of ned or at least reg. I hope you can get this resolved.
Midnight, tuck up with a nice hot water bottle and snuggle under that blanket. Sounds like a wonderful plan to me.
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Excellent advice Jenn - thanks! I don't need pain meds; it is controlled now with paracetamol 2-3 times a day. What I need is a bone/PET scan.... but the advice still stands. I need to tell him what I want - I have been very passive; asking questions sure but really just doing what I'm told.
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Midnight, we have just moved onto a small farm during my chemo. As the others have said just be sensible, i think it is about day 9 to 14 your immune system is at its lowest. I got neulasta injections the day after each taxotere treatment to boost white blood cells, I don't know if you get them over there. It was actually good being tired and sore because it ensured I didn't overdo it, and I learnt to say 'no I can't do that' which was huge for me.
Jenn, Nope it doesn't feel over, in fact it is almost scary finishing; chemo felt like such a pro-active treatment. My mum brought me a survivor sash yesterday and I haven't come to terms with that yet; she just had her 10 year clearance and some days I just can't see that far ahead. I also got a two page list after chemo of symptoms to look out for and follow up appointments which did my head in.
Sorry about your eyes, hopefully it can be sorted although I am sure another op is the last thing you want.
Kate how are you going, thinking of you.
Hugs to all, xx
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Thanks Lyndall - you ladies have strengthened my resolve.... I will not be ignored or babied!!! I see my onc in 3 weeks and if i still have the pain I will insist on a scan... 4 months; 3 complaints and no action is long enough!
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Sian...did you have a bone scan when you were initially diagnosed? I did and one every year for about 5 years as far as I remember. Bone scans show up all sorts of things like arthritis. It may not be mets but you certainly should find out what it is. Apart from the pain if its stressing you out its not good.
jezza xx
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Hi everyone.
Jenn, that is terribly concerning news about your eyes - is it definitely a side effect of chemo?
I've noticed my back teeth hurt now especially when I bite down. I know that is from chemo because teeth were 100% perfect just before I started all this crap. Too scared to go to a Dentist cause I cant afford any work anyway. Hopefully they'll settle down and it's just the gums (wishful thinking).
Well I so very nearly got killed or injured today. I was crossing a street to go and see my hairdresser so that she could ckeck out my white hair and remember the look, for when I do go back to have it coloured (a long way off). Anyway so as normal I looked both ways and crossed the road. It's a quiet street with angled parking near the shops and nothing was coming in either direction. Next thing I'm aware of a very big 4WD reversing along the road staight at me. It hadn't just backed out of a park and not seen me, it was actually travelling some distance in a straight line. I only had time to literally jump out of it's way and even then it keep reversing. I was shaking for a good half an hour.
How ironic to do all the fighting to beat BC and you get wiped out by a car!
Jenn, I had my Herceptin today too. I am going to get some EMla cream as it hurt more than necessary getting into the port, which she had to do twice as she said it was gritty - a build up of scar tissue or something. So the cream should numb it. I don't like this particular nurse. Unfortunately she is high up and I don't want to be seen as a 'small' person by complaining but she is just so abbrasive and terribly matter of fact. There isn't an ounce of warmth or empathy in her nature. You know because I flinched today (it took me by surprise because the others haven't hurt at all) she might as well have told me to put on my big girls panties by her attitude. Do I complain or not? She has aggravated me since day one with her attitude - she's the one that would always preface anything I asked her about with "Now, Remember I told you...." which is very headmistressy I think. Certainly makes you feel like back you're back at school. Actually I've just answered my own question. This isn't about her feelings this is about mine. I'm the one doing all this stuff and then in an instant I could have been gone today, so hangit, I am going to speak to the unit manager about not having her infuse me and if that is too difficult then they can switch my days to when she's not there.
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PS Went bra shopping today. 1st time since my big surgery in December that I am wearing a normal bra. It's is a little racy lacy number and I'm now a size D (for Delicious) instead of my previous G (for gigantuan) LOL xx
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Kate, definately get a different nurse. Stuff them. The least they can do is be professional in a caring way. I bet you find you are not the first person to complain about her either.
On a sad/funny note depending on your point of view, life as I know it is over. Ive officially turned into my mum. Just spent 20 mins looking for my glasses and finally find them in the bathroom!!!!! WTH
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