Kiwi ladies who need encouragment, but all welcome.
Comments
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Jenn - how are you getting on? You must have finished chemo by now? You are certainly getting onto it fast! Please let me know how the tram flap process goes for you.
I don't know if you remember us talking about schools. My daughter got into Dio and St Mary's (which is local and a lot of her friends are going there). We have decided to try St Mary's as she so desperately wants to go with her friends.
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Hi KiwiMum, I didn't mean to scare you off but did need to be realistic about the surgery and recovery - I would have hated it if you thought I had been less than truthful. I am 43 and the thought of going through life with the mastectomy bras and prosthesis was not appealing. I like swimming too and hadn't been able to do that as I hadn't found a swimsuit that worked with the prosthesis. My remaining breast is not flash either after nursing four children so I know what you mean. The scars are not too bad and will fade more as time goes on so being able to wear v necks, etc is not an issue now. It was so nice to go and buy bras off the rack after my six week check.
For all of us no matter what the decision about reconstruction life will never be the same and the physical is just part of it.
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You haven't scared me off Cath - just reinforced what I expected. I'm glad things are getting better for you daily.
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Hi all. Kiwimum, I am glad to hear that Southern Cross are footing the bill for your recon. I too have S.C. insurance, however they refused to pay for my left side prophylactic mastectomy (Right side had the cancer so they were okay with that). They would have paid more for me to have full recon, but I had already decided on no recon and to stay flat. I know of a woman in same position as me and they also refused her (she is a journalist and actually wrote about it in an article on her BC). She made a big stink about it and they backed down and paid. I spoke to supervisor and mentioned this case, but they still refused. End result, I had to pay around $7,000 for my left side. Doesn't make sense to me......
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Rowan - that's just wrong of SC. You are right. Recon would have cost more than your prophylactic mastectomy! When I had my chemo their chemo rules at the time were $60k maximum p/year but only $25k per "treatment". My chemo came to $25k + GST. We had to pay $3,700 which was all tax. It was wrong on so many levels!! I was entitled to be treated in the public system. Instead I saved the taxpayer thousands (including surgery), yet the govt made me pay them. They shouldn't even be taxing life saving drugs!! To add insult to injury, SC changed the rules 2 weeks after my last chemo. It doesn't make sense to me either ...
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So sorry to hear about 'Shadow' it must have been so upsetting for you. Sending you big hugs
Have to say not surprised to hear about SC, but I hear Tower can be even worse. But I know that does not help. It is crazy that the same company are providing such a different service for different people.
Hope Kt your energy returns soon
Take care everyone
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Thankyou for all your kind words girls, it was very comforting and gorgeous picture Aly, thanks you, i have saved it to pictures, it will take us abit to get used to not having him around. Hubby is feeling it tonight, shadow not under the blankets with him like always, it was his dog and then it became ours. anyway have a headache, so will retire for night. and thanks, love you all xxxxx
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kiwimum - so glad your daughter got into where you, and she, wanted :-) Dio was great (although I did not appreciate it at the time...) and I know some who went to St Mary's and also loved it.
Chemo (hard) ended in May and now I have chemo (lite). 3 weekly herceptin and now Tamoxifen daily. I'm tired and achy....
Will keep you posted on the TRAM. Date is 28Sep. Got a couple of work trips before then and am really busy at work so hopefully it will go fast.
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Hey Midnight, hugs. Its so hard when we lose pets. We've just been through the same here 2 and 1/2 weeks ago and it will take a LONG time to get over it. Last week it just built up and I sobbed on and off for 3 days.
I dont know how long the unfillable hole is going to stay there.Rowan, may I ask ....do you know how long you would have had to wait if you went public? (for your prophy) Maybe this is where I get to be fortunate for my DHB. My BS just required that I was absolutely sure as to why etc and then I think it was a matter of a couple of months tops.
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Hey musical, yea its huge lost loosing our precious bubba, he never went out on the road, which is so hard to understand why he did and was terrible tragic way to end my Birthday, we were goign to go out for tea last night as monday did not work out, but did feel like celebrating last night, but we will when the time is better.
have a good day girls.
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Oh and a belated Happy BD Midnight from me. Hopefully you will enjoy an eveing out when the time is right. Hugs
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Musical, my situation was slightly odd. Because I favoured BMX over rads and further chemo, my BS wanted to do it asap. She was 99% sure that SC would cover the cost. When I approached them they said they weren't sure and wanted BS to send in a covering letter. She did so, explaining that my BMX was further ongoing treatment etc. I was still waiting to hear from them 2 days b4 date of op.When I rang them the day b4, they said they were still waiting on letter from BS. Turns out they had received it but had then misplaced it! I was then advised to go ahead with BMX and they would approve it after the fact, as it were. Turns out they didn't....my BS was very surprised, as was I. I spoke to 3 different people about it, and finally go hold of a senior manager, who was sooo condescending, treating me like an idiot. She spoke very slowwwly, as if I would have problems understanding her. She couldn't really give me a proper reason for the decline, just kept repeating, "we don't pay for that sort of thing." Looking back, I could probably have taken it further, but honestly, I couldn't be bothered with a fight. Not very impresssed with SC now, although we have had good treatment from them in the past. On a side note, when I originally rang for approval of my mastectomies, the young girl on the phone asked, "What's that?" Seriously??!!0
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I know that when I was umming and arrring about having my UMX followed by reconstruction I was told by my BS that if I did not do it there and then I would have to possibly wait up to five years for the reconstruction to occur. This was Auckland DHB
I know each DHB is slightly different, but I know once the operation is not seen as life threatening then the time that passes before an operation occurs increases. For instance I am waiting for my TE port to be removed and for my last fill which will occur at the same time. It is not urgent - uncomfortable as the port is sitting on my ribs, but that is it. The BS told me it would be done in a month as there was no waiting list. In reality I have been waiting 3 months already and at the very best I can hope it will be done before Christmas. So it is definately not a precise science!
Rowan I cannot belive the girl and the Supervisor that you spoke to at SC, it is just so wrong. Sorry you had to experience this.
Hope Jenn you become less tired and achy with time, that is no fun
Have a great Wednesday everyone
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Rowan, Gosh you did get the runaround. As you say, at the time, who feels like a fight on their hands?. Wow as if you havent got enough to deal with as it is! Im sorry you had to put up with that, and I wonder how many of us have been in the 1% group once too often. As for the girl on the phone.... Im speechless.0
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Hi all, it seems that it really is a case of where you live as to how long you will have to wait in the public system. My BS made the referral to plastic surgery at the time of my mastectomy and I subsequently got a letter saying I was on a six month waiting list. While on that list I had all my chemo and radiation therapy, and not long after all that finished I was sent an appt to see the plastic surgeon. Four months after initial appt, and a day surgery procedure in between, I had my TRAM flap done. I have heard some places have delays before radiation therapy can start - maybe chemo is the same way in some places.
I had a dose of reality today when I bumped in to the husband of one of my radiation buddies. She had a different cancer which had already spread and while undergoing my treatments the call was made to stop for her as it wasn't working. She is now on morphine a few times a day, it has spread further and the end is getting close.
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Cath so sorry to hear your news re your radiation buddy, it sure puts everything into perspective........................
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So sad about your friend, Catnz. Cancer is a bitch.....You are quite right about where you live depends on waiting times etc. Hopefully I will NEVER need another operation. Fingers crossed....Now, on to a totally different topic; as some of you know, I live in ChCh and you may have heard we have had a spot of bother with earthquakes?? I was about to go into surgery for my first lumpectomy on Feb 22nd when quake hit. My surgery was cancelled (left with bloody hookwire in for 30hours b4 GP in Rangiora pulled it out!), lost our house and a close friend lost her husband. Bad times..... Anyway, I am in the process of writing a book about my experience of being dx with breast cancer and having to deal with the ongoing stress of aftershocks etc etc. I want to add a section about other Kiwi women and their thoughts on dealing with cancer (earthquakes or not!). I would love to know if any of you fine ladies would be interested in sharing your stories? I am really wanting your thoughts on being diagnosed, feelings about treatments (chemo, rads etc) and the importance of (or lack of) support systems (family, friends, other), and any advice you would give to the newly diagnosed. What I'm looking for is a brief (400-800 words, or less depending on you) synopsis of your experience. I am also focusing a section on "flat and fabulous" - for those who chose not to reconstruct. I am in contact with another member of this discussion group who wrote a brilliant article for an American paper. I will contact her publisher in New York as would love to share some of her essay. Anyway, hoping that some of you may share your story with me and give me permission to publish it in my book (using your names, or anonymously if you would rather). Please let me know if you would be interested. You can send your story to my e-mail (davidandrowan@hotmail.co.nz). I am hoping to publish in the New Year. P.S. you can also send photos if you want!! Any questions, let me know. Thanks
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Hi Kiwi ladies!
I am 31 and live in Tauranga. Diagnosed with IDC and DCIS ER-/PR-/Her2+ in June 2012.
Had a mastectomy in August and start some heavy TCH chemo in 2 weeks after getting a port.
Good to know there is a forum here for other kiwis with this 'malfunction'. ( That's my standard answer to people - I'm not sick, my body is just malfunctioning!!)0 -
Hi leanne1980 and a VERY warm welcome. Great to have you, but not the reason why. (of course) . Im so sorry you have to be here with us and Im looking at your DX and age. 31! It seems this monstrous disease is hitting anyone anywhere from babies to the elderly. Feel free to ask ANY questions you may have and it doesnt matter if some of us cant answer them, there are some who surely will.Its great to have a Kiwi forum where we can bounce things off one another and see whats relevant to our particular country.
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Welcome Jeanne to the club nobody wanted to join but we are nice folk here. And I am sure will try to answer any questions you might have.
On another issue. I have a real thing about getting bras. How I would love to be able to go into a shop and wander around looking before I decide, then I am happy to be fitted. I hate it that some-one else has to bring you the bra literally making the choice for you. There is one place in Auckland where they are on display thank goodness. Its bad enough having had an mx but to me it it worse having that treated as if it is still something we must not talk about. I have asked in various shops that sell mastectomy bras why they are not on display and are told that it is too embarassing foir ladies when they are on display. Another thing is cost. I know of many people who buy ordinary bras because of the cost but there are many like me who must wearwide supportive bra because of lymphoedema. If you wear an ordinary one it makes things worse. What also makes me fume is that many women have to pay off their bras. One boob and two bras is not right for four years - I know its a subsidy but there should be extra for those who must have them. I am so lucky because if I want a new bra I can go and buy one. Sorry about this rant.
I know some of you asked on another thread ages ago about prostheses and bras. I have the most wonderful breast form but I got it in Australia. It is by Silique. My problem was that my chest is so concave because they had to take all of the muscle under the breast, this form sinks into the hollow and also feels like a real boob if you touch the outside of you clothes. Naturalwear have said they would get my next one in for me so that's something.
Must stop getting on my soap box and get something done around here.
Big hugs to all.
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Rowan Im giving your suggestions/offer some thought, but whatever the case, I really hope your book does well!. Meantime, what a brutal scenario for you to have gone throguh all that! Thats just awful! The EQ's are SHOCKERS no pun intented. We get them quite a bit here, and we are by no means out of the woods for a good shake up. Recently on the forum here we were hanging out at geonet a bit. Lol.0
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Rowan, meant to say before I got on my soap box that I wish you luck. I have done some writing of my own so sorry, my story other than what I share on here is my intellectual property. I am sure that the combination of the Earthquake and your story will be great as its your story and experience.
Must get to my sewing machine.
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hey Leanne welcome, lovely to be getting new ladies, but sad for the reason you are coming in first place. you will find alot of support as musical has said, all the girls i here are wonderful and knowledgable too, i have found heaps of info more than the doctors tell me. so really glad you here, but not for the reason you are here and hope it all goes smoothly and yr treatments. love and hugs
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Hi midnight we are posting a the same time, what do you have planned for your day?
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Gotta go and blood test for oncology team and seeing surgeon on tuesday. they are doing a fish test and hormone survalance test, the hormones are probably all everywhere. and clean up my house, it badly needs it. so will busy alot of it doing that. hugs
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Hi Leanne welcome, love your view re your body malfunctioning. Wish we could all be meeting under different circumstances, this cancer has a lot to answer for!. As a numberot of the girls have already said this is a great place to ask questions or just vent so visit any time.
Rowan that sounds like a great idea, putting a book together. When all of this started I started writing a journal and have found it very helpful in that it has allowed me to explore some of my emotions and thoughts with regards to all of this. With the earthquakes as well for you this book I am sure will be very enlightening. I wish you all the best with this.
Alyson I found that the Farmers at Albany mall had a few mastectomy bras on display. I know that I bought a couple to use after my UMX and they were very reasonable in price, but quite simplistic and basic. I have also heard from friends that Smith and Caughey will sew prosthetic liners into any bra you chose - have never been in to see if this is fact or fiction. Hope someone else comes along and has some more info on this item.
Must go and do the food shop and then get my hair cut before my unruly mop of hair takes over the world. Big hugs to you all
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lol i went and got my blood test at hospital and they out my wrong DOB well wrong year making me ten years older than i am, HOW DREADFULLY RUDE lol, they had me born in 1951, i am 51 years of age. oh well thats how i feel at the moment, ten years older than i am. hope everybody is having a great day.0
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Hi everyone.
Hi Leanne. We are here to support you as you start this chemo journey! My advice is to take all the nausea meds they give you - don't wait to see if you get any! I had 16 rounds of chemo - 4 x AC, 12 x Taxol. I did drag myself over the finish line last October, before embarking on 5 weeks of rads. Looking back, the time did pass quickly.
Jenn - Chemo Lite? Are you doing weekly Taxol? Compared to the AC, I found the Taxol relatively easy.
Hils - I did not know that Farmers sold mastectomy bras. Are they just on display or do you need to ask? I was bought a new bra today at Naturalwear in Royal Oak (they have their mast bras on display). Gosh they are expensive! I also needed a swimsuit that would hold a prosthesis. I bought one there and for $25 extra they sew a pocket in. They had some good suits that came up higher under the arm and across the chest.
Rowan - good luck with your book.
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Kiwi, Farmers sell a Berlei sports bra which has a pocket. I find them OK but lately I have been wearing the 'thin Lizzy' bras from Amcal chemists. Some have pockets and inserts. The opening into the pocket is rather tight but you can get the prostheses in, had to get a smaller size bra which was quite nice. I always loved bras so it has been really hard for me to wear larger more supportive ones. The nice ones are so expensive.
By they way I am in Mt Eden not too far from you.
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Hi Kiwi they were just hanging on a rack so did not have to ask. They were lovely post op as they were soft and supportive, but unforunately not sexy! They are called Caprice Intimates and were cheap especially as when I bought them they had a 25% discount on lingerie. Have to say I was on a budget when I was looking so they may well have had more but I was looking for cheap and cheerful that did what I needed them to do.
Now that is just plain cheeky Midnight them getting your birthdate wrong - but at least it made you laugh
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