Kiwi ladies who need encouragment, but all welcome.
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Hey lovlies,
That sounds good Holly, I certainly need the added support of a sports or comfort bra to keep things in place due to my droopy side!
Welcome Terre, this is a great place to be, you can say what's on your mind and honestly you'll get nothing but support and understanding!!!
My nipple recon is healing well, they took a bit of skin from my tummy (lets face it there's plenty of that down there), and folded it up and stuck it on - I'm sure they've got a better way of explaining it but that's it in normal human terms. It looks bloody good and once the tattoo'ing is done I reckon it'll be hard to tell which boob is faking it, they reattached the bottom skin around my recon boob to give it shape as it hung about an inch lower than the other side - and now it's looking so great. lipposuction is fricken painful, I don't know how those rich ladies can do it, guess they can afford to sit in bed for a week after, they did it on one side of my hip and it looked like i'd been kicked by a horse - great result but sheesh!
Have been cancelling my onco appointments so I need a kick up the arse, I'm going through a "just leave me alone for a while" stage, and I figure that I can get away with it since I'm not that long out of chemo, I'll be ready soon but for now I've just had enough with the appointments and the touching my boobs.
How's everyone getting along?
Much love,
Ange xox
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Hi Ange - great your nipple & recon came out so well, & I can understand wanting a break from appointments...
Sometimes its too much-
Kruise- how did your friends go on the Tongariro crossing? I need to get motivated to get exercising, have had a few local walks (just an hour or so along the coast or along a beach). It has been a while since I've done a half marathon & my fitness is way down....
This week I have 4 days work so I'm a bit tired.
Welcome Terre. Always nice to meet new people here
Yay Alyson, 7 years since diagnosis- you'll be catching me up, I'm 10 years out...
One more Taxol, Shazza?
I hope everyone is well. Still hot up here despite the shorter days (dark when I start work now
) I'm so glad I don't have to wear a bra & prosthesis...I think I won't bother getting a new set, I'm so enjoying not wearing anything Cheers
kt
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hi guys. I had taxol 24 yesterday. I have an oncologist appointment next week so will see if he wants me to continue. I'm due scans but there is quite a waiting list at Auckland so don't know when that will happen. Hope everyone else is going well.
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Hi Gals, well i'm here again finding myself in a pickle. I Had my oncology appt on tuesday. Didnt go to well... had a panic at being in the onc room(wairau hospital is small. Onc room tiny) This led me to have a blubby cry in front of the onc specialist, he almost yawned! Some comment about seeing it all before. He said we were there to window shop for treatments, chemo being one I have to make a descision to have. Radiation is definate. How do I make such a decision?? Feels like its the most important descision of my life. Im going back next week to let them know what ive decided. So I dragged myself off to the local cancer society to get more info & somebody to talk too. They were great, but perplexed at why ive been missed in the system. Apparamtly I should have had a follow up appt with a surgeon to discuss my path report. (My surgeon quit his locum position the day of my sugery, but kindly rang me from home the next week)
So the plan I think from here is to go back next week and get them to explain the report and why they even considering chemo. I think they dont relise I have been uninformed and have skipped an important step in all this.
I have decided to go ahead with chemo if my results suggest I am borderline for increased chance of recurrance(age, tumor size, dcis in tumor??)
If they just offering for the sake of it I will get a bit angry as I think its a huge waste of time and taxpayer funds and risk to my life and health. My nurse friend thinks I should get anything offered at this stage, might regret in a few years time.
Feeling angry now!
Jo (please excuse spelling and txt talk, laptop back getting repaired under warranty again!)
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HI Jo,
First off you are entitled to as many meltdowns as you feel necessary to cope with this.
Oncs often seem to fail to understand that what they deal with on a daily basis and have a medical detachment to is actually devastating and life changing for the patient. I understand they need to and for them they know whether what they are suggesting is "just another standard treatment" or something else. We don't!!!! For us this is a whole new world we don't want to be and deal with. Some oncs are better than others to be fair and I have had two in my 6 years. Very experienced and skilled onc, luckily. But my first one terrified me, not because he was off hand or unfriendly. Just how he was and I was and the circumstances of my whole dx and early treatment. It was very stressful and in truth we never established a better rapport but I trusted him with knowing that he was going absolutely everything to treat me 100%.
What he did have that I found a godsend was a breast cancer nurse. After each appt I would ring her and she would explain in gentle tone and words what the complete situation was. She talked me off many a ledge. And if I needed to ask about a question or something that was happening I could ring her just for advice. Does Wairau or the local DHB have any such service. It might be worth ringing and asking, we are not always told what is available to us. Even though the cancer society might be helpful they are not in the hospital system and do not have all the info we will need.
I would agree that at the next appt you ask for more info on what exactly you have,what that might mean in chances of reoccurrence, what are the benefits of chemos, what are any risks, why would chemo not be the best option. Then ask for a written copy of the meeting with all this written down in clear english. In some cases, and I'm sorry. I don't know your type and amount, chemo is not always needed.But you should be very clear as to why you would not need this to help prevent any future occurrence. If this ever does come back you want to know you made the best decision at the time with all the facts clearly set out and the risks explained. This is your life and future they are talking about. Be very proactive in making sure that you understand what the decisions you make now might have on the future. No one can be 100% sure of it never coming back and you can only go on what you know right now but you should do everything to make sure you are comfortable with having made the very best decision with all the info.
Many people can turn down chemo for many reasons and it is a personal choice. but if your onc suggests it's worth doing I think I would take it. Ask for percentages of lowering the risk with doing the chemo. It is not a waste of tax payer money or resources or even the disturbance it will make in your short term future, if this means you have the best chance of living a long and cancer free life. That is the end goal.
Ask for the written report, ask for more time to consider it and maybe do some research here on BC org, feel you can ask questions or read others experiences with the different types of chemo. Yes, make sure he tells you the names of chemos he is talking about. Not just "chemo" and the benefits of each regime. Is he suggesting hormonals or is that not an options for you? By the way, we "window shop" for shoes, not stupid chemo. What a man thing to say.
Sorry this has gone on so long but in the beginning you have no idea what to ask or how to navigate this horrible new world. And when the medical people treat you like "just another patient" it is hard to stand up and say this is me you're all discussing like I should be totally aware of what it all means. But inside we are screaming at how we found ourselves in this world we never expected to be in.
Hope that helps and again sorry it went on and on.
Moira
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Wow, Jo.
Great bedside manner your onc has, not!
I agree with everything Moira wrote. She has given you great advice.
I hope the next appointment goes better & that you can find someone like a Breast Cancer nurse to help you navigate all this. Its such a huge learning curve, when you are feeling vulnerable too. This site has lots of info so maybe do a bit of reading- but that will be easier once you know exactly your stage etc. Hang in there! The cancer society may have resources such as books and possibly someone who has had a similar diagnosis to talk to, might be worth checking out.
All the best, (((hugs)))
kt
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Thanks Moira and Kt, it is truly a relief to discuss (and rant). One of the Onc nurses rang this afternoon to see how I was feeling, that was nice. I told her I'm working on it but am leaning towards getting the chemo, I don't know how I would forgive myself if I get a reoccurance and knowing if I did something earlier it might have made a 2.5% difference! I wonder if the onc nurses read these posts??
Laptop arrived back today, sort of fixed (abit like me) LOL
Cheerio
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Hi Jo, he was lucky my hubby was not with you. he would of got torn to strips. i told him what your onc said to you, he just shook his head in disgust. Did you have anybody with you, mind you the room you describe is probably too small for more than two people, sorry you had to go through that. its enough you have to go thru BC with out that kind of torment. But moira has given you good advice and am pleased the nurse rang you to see how are you are. are you able to take a support person with you, they behave normally better when somebody else is there. Hope you are able to make decision thats right for you. I must say my onc are a bit slow on the uptake with some things, excellent with others, but all are extremely pleasent, except one, i was not too keen on, and he was a gyney, not oncologist. the communication is whats slow in the place,, once they have going, they are pretty up to date. cheers Annette.
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Miora, i love reading your posts, they are very interesting, too bad if they long. they have alot of valuable info. my hubby was really disgusted with the talk poor Jo got from her onc, I am afraid if any of mine had talked to me that way, they would of got a a very unfavorable dressing down Its hard enough facing the a world of BC with out any harsh talk from stroppy doctors.
Hi there KT, hope you are ok.
Everybody else hi and hope you all ok. have a good weekend, much cooler weather, infact it was rather cool last night. nicer than that hot hot stuff we been getting unless you like it like that. we into Autumn now, my fav season. have a good rest of weekend. cheers
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I guess I just took the experience as standard, have had a few of these dealing with the local HB. My surgeon was a locum and we heard him arguing on the phone in the next room with the local breast surgeon that she should at least see me even if she was too busy to do the procedure. . He resigned after my surgery (I think he was lovely and did a nice job too) I mean how many breast cancer surgeries are done here in a month - probably not that many.
My husband accompanies me to the appointments, he was (is still) pretty unhappy - and is struggling in terms of the stress and worry. He is about to get very busy at work, at this time of year it is harvest and his hours will be long and tiring for the next few weeks.
Did not get my appointment back to Onc this week, they rang to say sorry things have been too busy! Going in next week to discuss then treatment will start on the 19th. I will be having the standard Taxotere and Cyclophosphamide.
I'm o.k now - coming to terms with things, at ease with my decision to go ahead with this part of my "journey" (that always makes me laugh - lots of people told me that at the start, its 'your' journey... I think they must take some pretty average holidays.
Hope everyone is ok out there, make the most of the last of the summer days, I'm busy making some sauce and relish, thinking about having a go at tangelo marmalade (hubby brought large bag of them home from work off someone's tree - YUMM)
Cheerio
Jo
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Hi Jo,
I'm glad you're feeling better about everything, even if the docs there are less than ideal!
I hope your hubby will be done with his long hours in time to support you thru chemo.
I know what you mean re 'journey'. Not quite the same but I was asked when I got back to work after my month off for my PMX if I'd had a nice holiday- & they knew full well why I had been off work!
Today has been lovely warm & sunny
I've put the guinea fowl keets we're looking after outside to soak up some sun too...Hope everyone is good
kt
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hi everyone - feels like ages since I logged on but I guess it's only been a couple weeks - I tried once and the site was down for maintenance...so got sidetracked again! Had a weekend away to Auckland to see ol' Bruce Springsteen in concert which was good fun.
Jo - my heart goes out to you with what you are going through right now. It's so damn hard and yes life changing. It will always come down to your decision to have chemo but if they are offering then yes take it. You will survive it and get through it! And the sun will shine again! We will be here to help you through it too....
Kt I haven't heard directly how my friends enjoyed the Tongariro crossing but saw some pics on Facebook and they made it up the Devils staircase and were smiling
I was doing great with my exercise and then my right knee started hurting - I think I overdid it! It got better with rest but all I can manage now is a 5km walk and it starts to get aggravated again so am going to find some other exercise I can do that isn't so hard on my knee.
I have been busy doing St John work - did a front line ambulance shift in Otaki last week and ended up driving back and forth to Palmerston North ED three times. Your neck of the woods midnight. We transported all elderly patients - one lady was 97! She made me laugh to myself as she kept talking about me as if I was like 30 or something - saying things like back in 1974 way before your time....lol. She was so good for 97 though! I will do another shift in a couple weeks. Just some events to work at locally tomorrow.
Well hope you are all doing ok - the weather is certainly changeable now. Autumn for sure!
Much love K x
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forgot to ask whether you've had your scans Shazza and how they were looking? we're all keeping our fingers and toes crossed for you I'm sure. It must feel weird not going into taxol each week any more.
Oh and one other thing - has anyone been following Jennifer Dooblah's (sp?) story - I have through Facebook. Her page is called 'my name is Jennifer and I have breast cancer'. She is a young kiwi woman who was diagnosed with bc but was newly pregnant so delayed chemo to save her baby etc. She is so beautiful and courageous but knows she doesn't have long to live now. She writes from the heart and it's very touching reading. Anyway.... Bye again xxxx
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Hi Kruise. Sounds like you have been pretty busy. My scan is booked for Wednsday. I saw my oncologist on Monday and he wants to keep the Taxol going as long as possible so I will only stop that if the scans show it's not working.
I have been using my Sweet Louise vouchers to see a physio who does a lot of work with cancer patients and I have had a couple of one on one work outs with her and will be starting a Pilates class she runs next week. I'm trying to get a few walks in but with work and chemo etc I find I don't have a lot of energy.
We have a completely crazy foster kitten staying with us at the moment. I wish I could harvest her energy. She's like the energiser bunny never stop.
My son is doing shave for a cure on Wednesday as well. He has been growing his red hair for years and it's so long. He looks like a homeless ginger Jesus. It will be strange to see him with short hair. It's for a great cause though so I'm proud of him.
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kruise, is there anywhere else about that young girls Deborah as my face book does not work properly.
Gosh we have had a busy week, getting animals to sale and works. we took 13 little pigs to sale and brought them home again, prices pathetic. we not selling $120 pigs for 65 bucks, may as well give them away. so we are now thinking of new ways to sell them, would rather they go to sale than the works. then the next day we got sheep to the works, 62 of them. kept few lambs back, 10 went and the ewes. we have not got the feed, and it costs a bundle for the stock feed all the time. the remaining lambs will go to sale, they call it a store sale, farmers buy lambs and feed them up and sell them again, we cant afford to keep them with cutting our trucks off, and only keeping one run, the income has halved. so got make money of farm income to help. i feel sad sending them to worls. but not got a choice. i love them all. mind you, did not like the ram that knocked me over and just about broke me arm. have a big graze above my elbow. they were being naughty when we were mustering them up to the yards.. mind you i might too if i knew that the works was my next destination. but we must of chased them around that darn paddock about 20 times, i got my exersise that day,. anyway better go, have good weekend ladies.
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Hi ladies, just thought I would do an update as I had my first infusion of Taxotere and Cytoxan on Thursday. It went well, easier than I thought.
The Nuelastin shot threw me out a bit, achy, nausea etc... Now just getting through tiredness and achy pains, tummy rumbles but other than that I am fine. I am also happy with the decision I have made in regards to treatment. So hoping everyone out there is well and having a good weekend.
Cheers
Jo
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Hi ladies, been a little while...as life takes over again and the big C takes a backseat.
Glad that your infusion went well Jo, it's not always as bad as it seems before you start, though I can tell you that you'll be super glad when you've had the last one.
My hair has come back with a vengeance, just wish it would grow faster on my head and slower everywhere else! Went to work today for the first time without wig or hat and it was a bit weird but also felt good. Funny how the wig/hat became a sort of security blanket for me and I felt rather vulnerable without it (not to mention colder!).
Just curious: for those of you that finished treatment, what was the follow up? Checkup 3 month, 6 month?
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Just realised I should change picture now that I have more hair
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Hi all, this place is really quiet. Just giving early notice. The Aussie girls are coming Nov 28-30 so keep this date clear and come along and meet some great people.
Big hugs
Alyson
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Hey Woody looking good!!!
I have 3 monthly checks with either Breast associates or oncology (so 6 monthly with each one).
Hope your all doing ok! Not much to report - been feeling a bit lousy so just need to get onto getting in touch with oncology and see if we need to do any scans, I'm not worried about it, but the dizzyness is getting worse so will get onto it.
Loving the cooler weather coming on now, is good for the hot flashes!
Take care all, much love xox
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hiya ladies
Like you Ange I'm just feeling a bit lousy at the moment too. I went to the docs a couple weeks ago as had a rash come up on both my arms and didn't feel well. Got told it was a viral infection. I still feel tired, my chest feels heavy but it comes and goes. I have always had digestion issues so it could even be that. Anyway I will go get checked out again if it doesn't improve soon. Time of year I guess for stuff.
Hope everyone else is well? Weather has been bad lately - ever since the Royals arrived - today slightly sunnier but forecast for week doesn't look too good. I might go into the City tomorrow to see William and Kate if it's a nice day.
Love to all x
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lol, I love that Kruise, popping in to see William and Kate!!! Aren't they lovely - have won our hearts I think, she's just so gracious.
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well I did 'pop' into see the Duke & Duchess today and so glad I did. Weather was abbismal but cleared up a bit fortunately. Got to shake both of their hands and talked briefly to William too. Such a highlight to see them in real life!
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Hi all- I hope you're all well.
Ange & Kruise- hope you 2 are feeling better than you were, and that there is nothing to worry about...
Great photos Kruise! You got soo close
Not much to report up here. I'm having our water tanks cleaned out today- good timing becos it sounds like there's a bit of a storm going to come thru & fill the tanks up again
I seem to keep busy with work, the kids & the aging, unwell in-laws. Plenty to keep me out of trouble...
Hope chemo is going ok JoTro
Take care everyone
kt
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Awesome photos!!!!!!
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wow!!! Great photos Kruise. How exciting for you.
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thanks everyone. Shazza have you changed your little pic on here? Looks like your hair is growing back again?
Kt - the weather has been worse here today than yesterday and I saw some bad flooding pics taken in Auckland so no doubt your water tanks have definitely been filled again. Good to hear things are ticking along with you.
I am feeling a little better - have decided to quit tamoxifen for a bit and see if I start to feel better. My docs were all happy about that as there is that question of whether it's giving me any benefit anyway. I think it's giving me headaches, sore eyes and other things!
Anyway just wanted to wish everyone a Happy Easter and enjoy some treats from the Easter bunny. Xx
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Hi Ladies, nice to see some movement on this topic. I have been hanging out in the Chemo/march section lately, we all look the same (baldies) hehe.
I am coping well, few SE, nothing too difficult. Moods have been a bit blue, you all know too well the sense of loss and never ending thoughts about BC. Going to the Cancer society meetings and Look Good Feel Better that is coming up soon, looking forward to that one!
Almost halfway through Chemo, then its off for rads...
Hope you are all wrapped up warm this weekend
Kind thoughts back to you
Jo
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hi everyone
Good to hear all going as well as it can be Jo. You have probably done the LGFB day now - it's quite a fun & lovely thing really in amongst the other stuff.
Did anyone see the news last night about the Cancer prognoses etc. basically saying we should all be living longer now with a cancer diagnosis because of the treatment options etc.
have had some nice days again down here lately but it's definately getting colder. Hope you are all keeping warm.
Love to all x
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Hi lovelies - it's quiet on here!! :-) hopefully that means everyone is doing well and getting on with their exciting lives!?!?
Anyway on that note just thought I'd pop in and say that I'll 'see' you all in 6 weeks. My partner and I are off on a 6 week trip to Europe and a Cruise. Feeling very excited! We leave on Saturday and I've decided no checking bco while away - I am just going to enjoy every day and the moment and try and imagine last year never happened....well that's the plan. So I'll be thinking of you all and hope you are keeping warm and well.
I look forward to catching up on any posts when I get back. Xx
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