Kiwi ladies who need encouragment, but all welcome.
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Hi, thanks for welcoming me, yeah I'm sorry too to find myself here...on the other hand it's an opportunity to have a good look at your life isn't it? The TRAM flap went well, though I had some complications: I developed an enormous blodcot (700ml!) in my new breast, I looked like a Dolly Parton on one side only..they rushed me back to theatre again and 3 hours later I woke up. The following night I had breathing difficulties and they rushed me to get a CT scan of my lungs: the bottom part was collapsed probably due to the anathestics of two operations and then the night after that my heart went nuts 180pm & arythmic, it felt like it was going to pop out of my chest! However, after the all this was sorted and once I was allowed to get up - bent over like a 95 yo because my tummy was so tight where they'd taken the tissue - I was away and healed up real quick. Now, 2 months after getting out of hospital, my body feels as good as new, my arm moves fine, boob feels good and my tummy is as flat as a 20 yo.
2nd chemo yesterday was about the same as the first one, only difference was that I threw up before we got to the hospital! And in the evening still felt miserable, even all the anti nausea stuff makes me throw up, couldn't keep a thing down. Feeling much better this morning though, just had breakfast and it feels good.
My hair is still falling out at the rate of knots, pretty messy, feel like I'm moulting.
KT - you also had invasive lobular like me, what chemo did they prescribe for you?
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Oh gosh woodyhollow, sounds like a tough few days in hospital. I also had a transflap and mastectomy at the same time and very happy with the result. How have you found the numbness, I'm still very numb in parts and keep wondering if it'll pass and I'll be able to "feel" my tummy and breast again.
I had chemo yesterday as well, if your in Akl hospital for your treatment then sing out and I can pop my head in and say Hi. I had quite bad nausea so was prescribed nozinan - pretty good stuff, I found Emend, Domperidom and Ondansetron did nothing, if your feeling ok the next morning though then that's a good sign!!!
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Yes, I'm still numb, about 20cm radius around my (new) belly button, my tummyscar is numb an my new breast about 5cm radius from my nipple circle. Did you have a skin sparing mastectomy as well? Where they cut around the nipple and take the nipple and the inside of your breast, but they leave the skin there?
I'll ask about the nozinan. Thought it was hilarious that I threw up before I even got there! I get chemo in Hastings, but I have to travel over 2 hours to get there. Looks like you have the same chemo.
I take quite a few supplements as well, which I started as soon as I got diagnosed and I've been feeling really good. The oncologists are not too keen on them though, so I cut down on the antioxidants.
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Yes I had the skin sparring surgery - bloody amazing aye, I can imagine with a nipple on it it would probably be hard to tell the difference.
I was sick before my last chemo, and this round I'm taking all my meds regardless of whether I'm feeling ok or not, and so far today I feel great, I won some tickets to an event tonight so I've been telling my friends they'll be dragging me along to it whether I'm ill or not (I get a goody bag and boy do I want my goody bag - it'll probably be filled with hair products lol).
Hope everyone's doing ok out there x
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The nipple thing was something that I've been thinking about a lot. I looked at nipple prosthetics but I didn't like the stick on ones. I saw the custom made ones overseas and they looked really good. Then I thought about making one myself and then I went a step further and thought about setting up a small business to custom make nipples for other women who have had a breast reconstruction and are missing a nipple. I've made a few prototypes and I've got the proper prosthestic silicone sent from overseas, so I'm hoping to set business up properly in the next couple of months...
Hope you enjoy your event - hairproducts will come in handy sooner or later!
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Hi girls.
I'm glad you three (Kiwi, Ange & Woodyhollow!) are pleased with your tramflap recons.
I didn't get the option of immediate recon & had to have radiation (close margins) - now years down the track I have decided on prophylactic mx for my lefty instead of recon- so I'll be balanced & free to go flat or to wear foobs
. If things go according to plan that should happen on the 17th!Woodyhollow, I had AC chemo (A for adriamycin)- that was all that was offered back then. So it was only 4 cycles & over with in 3 months.
I also had a bit of IDC in the mix!
Well- I've finished work for the week. A bit of a yuck day for it... time to relax then I'm off out for parent/teacher interviews. My son managed to miss the school bus again today! We'll see what his teachers make of that...
Enjoy your outing Ange.
I hope your nausea is dealt to Woodyhollow
Take care all
kt
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Oh Woodyhollow, I wanted to ask- how did you find your ILC?
I had a lump- but the mammo didn't show it. The ultrasound also underestimated the size of it. I had a lumpectomy first with no clear margins, then had to have the mx...
(which is partly why I'm going for prophy mx, since mammo didn't pick mine up- I don't want to keep having yearly mammo's when they don't give me peace of mind...)
kt
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I was diagnosed with LCIS in 2009, after having my very first mammogram and had yearly mammograms since. This year I was due for my yearly mammogram and my left breast had been feeling a bit different in my new bra, just they way it sat, so anyway when I went for my mammogram I mentioned that and they gave me a scan as well as a mammogram and then did a biopsy. I was told, and found out from my own research, that ILC is a 'sneaky' cancer as it doesn't feel like a lump it grows sideways in a sheet rather than a lump which is why it's so hard to detect also in mammograms. This is why it's often not found until it's too late...guess I'm lucky. The histology report showed that it was not one tumor but two smaller ones, 1.3 & 1.6 cm with healthy breast tissue in between. The thickening that I felt was the inflamatory reaction of my breast tissue to the tumors.
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To jump in on the nipple discussion. I had nipple reconstruction as a second stage. It was on 1 July. My PS made a nipple which looks pretty damn good. The last stage is to go in and get it tattooed with colour.
My recon was 1 Feb. Even though I've healed well I certainly still have numbness. The new breast and the stomach have numb patches. It's an odd sensation to feel but not feel!
Enjoy your event Angstapp.0 -
My PS said that feeling may sometimes come back, but it certainly is strange. Have thought I might get a tattoo later on my waist over the scar, quite handy then if it's still numb..New belly button is still a bit of a weird idea, but it looks good. The circle where my nipple was and what used to be part of my tummy is quite a lot paler than my breast skin, and I noticed, has quite a few (light) hairs on it!
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My nipple skin has really light stretch mars on it lol, my tummy was a mess after big babies so i guess they couldn't find anything nice, I've exhausted my medical cover so don't think the reconstruction will be free for me, but i'm not worried about the look of it, no ones ever going to see it and I look normal in a bra - only problem is when i go into the chiller at work and come out with only one headlight on!!!
had a great time last night, so far reducing the chemo has made a huge difference, can feel the ache starting to just creep onto the bones.
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good to hear you enjoyed yourself. My tummy was also full of stretch marks, they must have just found the one bit that didn't have any. Also colour difference in above & below the tummy scar (maybe tattoo will also help disguse that?). I had my reconstruction in a public hospital, think I could have a nipple reconstruction, if I wanted one, but not sure on that yet.
With the limited experience that I've got with this whole BC issue, I feel that the major impact is what is happening between your ears, all the anxiety etc. I was feeling fine before the dx and if I'm totally honest maybe feeling better since the dx as I've adjusted my lifestyle, I'm doing more excercise, lost some weight etc. Not back at work yet. Have been using hypnotherapy to handle the anxiety issues and that has been really good.
Second day after second chemo now and feeling good sofar. Haven't had any achy bones because of Neulastin yet.
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Hi,
I'm glad you girls are feeling ok after your chemo.
It has been a beautiful day today- so good to get the washing dry & do some outside jobs.
I'm 'bumping' this thread up because a new kiwi is looking for support- Huntsco (I hope you find us
)Have a good afternoon
kt
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Yes it was a lovely day here too! Wasn't sure about hanging the washing outside, few clouds about. Went for a walk out the back and was planning to walk for at least 30 mins but slipped on my bum on a hill and got my hands covered in mud and sheep poo so had to race inside to wash them thoroughly..
Kt you into horses - looking at your picture? I haven't ridden mine for the last 4 mths, with all the stuff going on...
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Woodyhollow, that's my daughters pony & one of our goats. My daughter has moved on to other things (motorcycles amongst other things), so the pony is being leased. I used to ride him too- but not enough to justify keeping him here.
I miss him a little, but not all the work he entails! Do you ride a lot? I hope you feel well enough to get back into it soon
Well, I must go feed the beasties before it gets too dark & cold (alpacas, sheep & goats)
Cheers,
kt
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Only just hacking about, did a couple of treks, but nothing serious. Did one hunt once, but that was not really my cup of tea..Bit worried about getting back in, she may be a little feisty after all that time off, might get someone else to do a couple of rounds first! Motorcycles..., mine (11) loves karate. I prefer to stay in one piece - though horse riding has its painful moments..
Also going out to feed out some hay before dark..
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How are you all doing ladies?? My aches and pains have subsided after my taxotere on Wednesday and now just have the nasty metallic taste in my mouth - extrememly thirsty this time which is good as I couldn't tollerate water last time!
Looking forward to the weekend ahead, my Mum is taking us to Sue Nicholson (the psychic), will be fun to watch and a spot of work on Sunday - nice to get out of the house and have some adult company, i'm so jealous of those that cn work through chemo - that's a real achievement. Trying to get the energy to take Miss 6 and Mr 4 to the Ranfurly shield parade today, Counties finally won it - first time ever.
Hope your all well, xox
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Doing fine, lovely weather out here, really enjoying it.
Is taxotere the same as docetaxel or similar? I'm having one more round of FEC and then docetaxel. I went off water after my second chemo, maybe because I was trying to drink heaps of water and then I just couldn't stand it..should probably be trying to eat bad stuff during chemo, might be able to put me off that.
Enjoy the parade, sure you'll find the energy!
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Yep, Docetaxol is also called Taxotere, I had milky bar and burger rings on my chemo day and will never touch the stuff again - my body just squirms at the mention of it!!
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Hiya
Nice to see a bit of sun between the showers. Hope it stays fine for the parade.
I just a phone call from the hospital- they are a surgeon down & my surgery (for the 17th) has been postponed till Oct (8th- but we shall see...).
I am very disappointed. But there's nothing I can do...I hate feeling so powerless
Now I have to let work know- I hope they're not too put out.
kt
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Just a quick hi everyone from the travelling Kiwi. Long day driving today.
Big big hugs.
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KT - I feel for you, I remember when I was waiting for my surgery they wouldn't give me a final date until 1 week before, because they were short of anaestesists in Hutt hospital, extremely frustrating as you have to plan stuff too..! Felt I had to be the squeeky wheel to get things moving - not fair. Hope they get their act together.
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Feel for you too kt, hope they get sorted out quickly for you, it's hard when you have families to sort and work to juggle.
Ladies, with your diagnosis, what does ILC mean? Excuse my ignorance, it's hard to comprehend how vast the different diagnosis are and stages and grades - it gets confusing, especially trying to explain it to others.
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ILC = invasive lobular carcinoma, I think 80% of breastcancers are ductal carcinomas & 20% are lobular...something like that. I find the stages & gradings quite confusing as well..mine was pleomorphic as well - different cell structure I think.
Just out of interest, do you have any bc in your family? I have none myself.
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Thanks for the sympathy girls!
Its hard when you get psyched up for something to happen, then it doesn't.
Luckily my employers are understanding
The only family history we have for BC is my grandmother (dad's side) who was diagnosed at stage IV and died of it when she was in her 70's.
I think its more common to have no family history, isn't it & they don't really consider grandparents as being that close.
I hope you girls keep feeling well despite the chemo.
Alyson, I hope you're enjoying your trip!
Midnight- are you coming back here???
Cheers,
kt
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No BC in our family either.
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Hey everyone. Hope you are all going well. Port for me later this morning then we can get started with chemo
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Hi again ladies.
Good luck with the Port placement this morning ShazzaKelly.
Sorry about your op date change to kt. Frustrating!
I had my 11th paclitaxel last Friday but had a bit of a meltdown day! I think the combination of being exhausted plus some side effects playing up just made me 'hit the wall'. I cried on way into hospital and back again and had no idea why!! Lol
Fortunately feeling a little better this week.
Where I had the lumpectomy and in the left breast is hurting a lot and I can't help but worry about what is going on in there!
Angestapp my b/c diagnoses similar to yours - lump was 1.8cm when removed but I had micrometastis to the two sentinel lymph nodes - so I had the ALND which showed the remainder clear. It is interesting to see you are having a slightly different chemo regime to me though and you had a mastectomy whereas my surgeon talked me into a lumpectomy only.
The triple negative breast cancer diagnoses is more strongly linked to a hereditary link.
My mother was diagnosed at age 45 with no other family history. Back then they didn't really test the types of cancer etc so much. Plus treatment was different. I know my Mum never had chemo immediately after surgery. She had it about 3 years later. My Mum passed away 5 years after diagnoses at 50.
I had been having annual mammograms because of her history since I was 36 yo. I was due for my annual mammogram when I actually found my lump myself. I acted on it immediately as I almost knew it wasn't good! Had heaps of 'spiritual' signs happening too but that's another story!
So I was 44 with my lump and my mum 45. Has to be some kind of link there doesn't there? Genetic services are currently testing me for the BRCA genes - so just need to wait for those results. Like all of us I guess, opting to have chemo was my choice, but based on what my mum went through I knew I had to do it. No point in a couple years thinking 'damn I wish I had done that chemo now' etc. Have to go at it with all guns blazing!
I'm hoping I have a better week this week and yay! Last chemo treatment on Friday after 6 long months worth! :-)0 -
Hi ladies,
Shazza all the best with your port placement, I'm so envious of the ladies in chemo ward with a port while it takes ages to find a vein in my hand. Envious in a cancer ward - crikey! Do you have to be put to sleep to have it inserted or do they local you and do it?
Kruise, they recommended a mastectomy as I had 2 tumors, 25mm and 27mm if it had only been one then i would have had a lumpectomy.
I've had a bad day, feeling so low and teary - I'm finding the taxotere pretty tough emotionally, at least with the FEC I felt like crap and then "ping" I'd feel pretty energised.
Argh, at least tomorrow is a new day, hoping your all doing great x
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yes i am, sorry, been neglecting you ladies. i still think about you though and have the a read of yr posts. the boys gave notice on the trucks last night, at least three of the runs. no more drivers after Nov 29th, BIL will finish his contract for Whanganui over the next few months and then wind up completly or if he feels like it he may want to go on. up to him, i dont care. but it will be no more drivers, they are a pain in the A, trying to find the right people and they play up too much, so its out the door.
some of the reason i dont write much in here as alot of stuff is over my head as far as the cancer treatment is concerned and i dont find it easy trying to write about it and i dont like asking the ladies going thru it what it means, i do come in and read things tho,but have not forgoten you, guilty of neglect i know. so please be asured my heart is still here. love for now xxxx
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