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kezzababe
kezzababe Member Posts: 26
edited November 2016 in Newly diagnosed

OMG, just over 2 weeks since diagnosis of lobular breast cancer, head spinning like linda blair, not even sure how this blog thing works but will give it a try

booked for mastectomy and reconsturction on monday, scared beyond belief, i hope i am doing right thiing

 

ALL my surgeons and specialists and NURSES are fantastic

feel like the cyote on the road runner who is just dangling over the cliff.....can i hang on? stay tuned.....

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  • Chris
    Chris Member Posts: 813
    edited March 2015
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    Hi Kezzababe, welcome to this site. Sorry to hear your plight. We have all been there and done that, so hopefully we can give you lots of support and advice. I am 15 months since diagnosis, and now am coming out the other end. I have had 5 surgeries, ( that is a lumpectomy, mastectomy, another mastectomy, insertion of tissue expanders, and finally insertion of 2 permanent silicone implants only about 5 weeks ago.). I have also had 4 cycles of chemo, lost my hair, regrown my hair, and feel really good now. Still on mediaction for several more years, ( femara), but otherwise doing well. I'm sure you can't see a light at the end of the tunnel yet, but believe me, it is there, and you will get there sooner than you think. Please feel free to come on here and rant and rave or cry or whinge. We are here to support each other. All the best with your surgery next week. Love Chris xxx
  • TonyaM
    TonyaM Member Posts: 2,836
    edited March 2015
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    Welcome to this site- your blog got through. So sorry to hear about your bc diagnosis.It's like getting caught up in a twister,you just get carried along. Head spinning is also a good term to describe it. Keep yourself really busy from now until Monday- clean cupboards,pack the freezer etc. If you haven't got them then shop for pjs that button down the front.They make it easier for drips and drains and also your arm might be sore.It's normal to feel scared.I was sooo anxious they had to give me something to calm me down before I even got to theatre-  it helped.Blog here anytime  for info and support.We know how you are feeling as we have either been through it all or are still going through treatments.We all help each other here.

                                         Tonya xx

  • Di_BCNA
    Di_BCNA Member Posts: 896
    edited March 2015
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    Hi Kezzababe, just wanted to say welcome to the site, and good on you for giving the blog posting a go.  Feel free to ask questions, and share as much as you like, everyone here's very friendly and supportive.  All the best for your surgery.

    Di

  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    Hi ChrIs  am so sorry that you had to go through all that!!! but it sounds like you are through the worst.......well done!!!!

    i am a single parent and struggling to try and keep positive for my kids, I am VERY lucky in so many ways but just so scared of the big surgery awaiting me monday, great team working on me tho......also worried about my poor kids as they have been through so much in last 6 years since my ex husband moved on to new pastures (he is now on his 3rd pasture!), however, credit where its due he is coming to stay with girls whilst i am in hospital for a weeek, so that is good. 

    ironically i did a short chemo course last year and loved the aspect of helping people and being there for them, i am a nurse and find it really hard to take help, much prefer to give it...even when i am a patient i want to help the nurses.........ah well.....part of my makeup, people have been amazing, old friends, new friends, acquaintances are popping out of the woodwork, its inspiring in itself.....

    i hope your implants are going well!!! thanks for you kind message love kerry.xx

  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    Hi Tonya,

    you took the words right out of my mouth!!!! I think they have pre sedation sedation  ready for me already!!! They are expecting me to be a nervous wreck, great team but sooooooooooo nervous (worse being a nurse!!!) but try to be goood patient........scared stifff.....good advice, heaps to do just not much energy.......

    soooo much to be thankful for tho.....stilll not quite sure how the blog thing works, i have only justgot used to facebook (though my kiids do most of it for me!

    did you have a mastectomy and reco at the same time? if so how long were you out of action? (ie driving kids around etc i do hope you are well and happy now, thanks so much for your kind advice

    love kerry.xx

  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    thanks di, i figure i need all the help i can get......having a very emotional day,  so scared, so much to do before sun night admission......OMG, still unsure how this blog thing works but will get the hang of it!

    Kerryxx

  • JENNIFERJ
    JENNIFERJ Member Posts: 37
    edited March 2015
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    HI KERRY I TO HAD LOBULAR CANCER FOUND OUT JUNE 8TH  HAD MASTECTOMY, CHEMO AND RADIO. IAM NOW GOING IN TODAY TO HAVE MY PORT TAKEN OUT AND THEN I AM LOOKING AT RECONTRUCTION HOPEFULLY SOON . I HAVE HAD ALL THIS TIME OFF WORK AND I WANT TO GET BACK SOON. GOOD LUCK AND KEEP IN TOUCHXXXX JENNY FROM ADELAIDE.

  • Di_BCNA
    Di_BCNA Member Posts: 896
    edited March 2015
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    Looks to me like you have the blog thing figured out pretty well, so don't worry too much (you can't break anything :).

    But if you do want some tips on how everything works, have a look at the help page (there's some good links and a downloadable guide there), and also the Q& A page.

    I've put links here for you, but if you lose this post, just have a look at the top right of any of the network pages (just underneath the navigation strip) and you'll see links to 'help' and 'Q&A'.

    At the end of the day you all need to be able to chat together without having to worry about the technology, so ask any time you have questions or something doesn't seem to work -- everyone here is learning at the same time so questions and answers help everyone. :)

    *hugs to you for your surgery*

    Di

  • TonyaM
    TonyaM Member Posts: 2,836
    edited March 2015
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    I'm a nurse too -don't think we make very good patients cos we know too much.Ignorance is bliss-so goes the saying.I've had breast cancer twice.First was in 2003(age 47)and I had a lumpectomy,full node clearance and radiation. I was ok for 7 years and then it came back in the same breast,same spot,similar pathology.The cancer had grown 3cms in a year.I had a mastectomy and then chemo,middle of 2010.I am now on Tamoxifen and seem to be ok. I didn't have reconstruction for several reasons- can't have implants cos radiation stuffs up skin elasticity, I wanted the cancer out pronto so didn't have time to shop around for plastic surgeon- Diep recon is not for the faint hearted! Another reason was that I"d lost confidence in my health and I wanted to keep an eye on my scarline should cancer pop up again.Paranoid I know,but twice around makes you that way! I haven't ruled out reconstruction in the future but just not ready right now.There are no right or wrong decisions-you just have to do what feels right for you at the time and have no regrets. I remember it being painful for about 3 days post op and needing strong pain killers.The drain is sore and irritating on all levels but usually comes out after a week(?) I was driving and back at work(part time) after about 3 weeks- just some discomfort at that point.If you are having a full node clearance as well then it's a different story.Your arm might be sore/stiff - that op(2003) took about 6 weeks but hey,we are all different. I feel for you Kerry cos the waiting is the worst part of this journey and OMG,you have to do alot of that!!!! If you have any questions just blog back- always someone here who has had what you need answers to. We'll be thinking of you on Monday -you'll be ok cos I got through it and I was such a big sook.Sending hugs.

                                                         Tonya xx

  • Chris
    Chris Member Posts: 813
    edited March 2015
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    Hi Kerry, I too am a nurse, so understand what it is like from that side of the fence. One month before my diagnosis, I enquired about a job at the SAN in their oncology suite. I didn't have the oncology experience to for the job, but little did I know, that I would gain this experience first hand in a month or two. After chemo, I realised that this would be a great place to work. The nurses were so great and very compassionate. One day I might venture into this area, but will need to do study in this field first. Please don't worry too much about the surgery, as it isn't as bad as you might imagine. What type of reconstruction are you having with your mastectomy? Tonya is correct re the lymph node removal being worse than the mastectomy. It does take awhile to get full movement back, but the physios are
    great and it does come back. The mastectomy is fairly
    superficial as opposed to say, abdominal surgery.
    When I had reconstruction, I had tissue expanders put
    in at the time of my second mastectomy. ( called
    delayed and immediate reconstruction ). This was only
    slightly worse than the straight mastectomy, but really
    only involved a bit of extra tightness of the chest
    muscles, as the expander was also inflated at the same
    time with 200mls of normal saline to begin the stretch.
    There is adequate pain relief, and I was on panadeine
    by about day 2 to 3. After 3 weeks, I would go weekly to the plastic surgeon and he would add another 100mls
    painlessly. There would be a slight sensation of
    fullness, but this would pass in a day or two. As far as
    driving, you should be good in 3 or so weeks. Everyone
    is different, and your surgeon will tell you when you can
    drive again. All the best for Monday, and we will be
    thinking of you. Love Chris xx
  • Chris
    Chris Member Posts: 813
    edited March 2015
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    Hi Kerry, I too am a nurse, so understand what it is like from that side of the fence. One month before my diagnosis, I enquired about a job at the SAN in their oncology suite. I didn't have the oncology experience to for the job, but little did I know, that I would gain this experience first hand in a month or two. After chemo, I realised that this would be a great place to work. The nurses were so great and very compassionate. One day I might venture into this area, but will need to do study in this field first. Please don't worry too much about the surgery, as it isn't as bad as you might imagine. What type of reconstruction are you having with your mastectomy? Tonya is correct re the lymph node removal being worse than the mastectomy. It does take awhile to get full movement back, but the physios are
    great and it does come back. The mastectomy is fairly
    superficial as opposed to say, abdominal surgery.
    When I had reconstruction, I had tissue expanders put
    in at the time of my second mastectomy. ( called
    delayed and immediate reconstruction ). This was only
    slightly worse than the straight mastectomy, but really
    only involved a bit of extra tightness of the chest
    muscles, as the expander was also inflated at the same
    time with 200mls of normal saline to begin the stretch.
    There is adequate pain relief, and I was on panadeine
    by about day 2 to 3. After 3 weeks, I would go weekly to the plastic surgeon and he would add another 100mls
    painlessly. There would be a slight sensation of
    fullness, but this would pass in a day or two. As far as
    driving, you should be good in 3 or so weeks. Everyone
    is different, and your surgeon will tell you when you can
    drive again. All the best for Monday, and we will be
    thinking of you. Love Chris xx
  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    Hi Tonya,

    thanks for the lovely supportive message.....its almost 2 weeks since the op, much bigger than i anticipated, third op in one month so thought i would skip through it like the last ones......its been tough on many levels, first time back on computer......everything is such an effort.......ridiculous that an icu nurse gets worn out paying a bill or writing an email.....emotions all over the place.....seeing oncologist monday, believe no radio nec but unsure about chemo.....need tamoxifen......i

    do hope you are doing well and cant tell you how much your support means.....i am a single parent and its damn scary and not fair for the kids.....

    take care with loove kerry.xx

  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    HI Chris,

    thanks for your message, greatly appreciated!!! its now almost 2 weeks since the op, much bigger than i anticipated......i figured i had flown thru the last two ops so would do same again, had mastectomy and immediate reco, flap repair......kept nodes, and no cancer eslewhere........so far.....

    funny, like you i did some casual worke in day chemo and loved the nursing and helping people, did short chemo course b ut couldnt continue working cos of  my neck and back pain......now i am going to see oncologist at that u;nit.....monday to find out if chemo needed......blimey......life throws a few curve balls doesnt it......

    meanwhile all my doctors and nursing stafff have beeen fabulous.......

    thanks again for the support and i do hope you are doing well

    with love kerry.xx

     

     

  • kezzababe
    kezzababe Member Posts: 26
    edited March 2015
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    Hi Sam,

    thanks so much for your lovel;y supportive message!!!

    almost 2 weeks post op, much bigger than i anticipated.....emotions all over the place, same as you drove too early but who else is gboing to drive kids around??? love all my medical people, so lucky in that aspect, have wound infection but that is minor detail......so scared about future......

    first time back on computer.....even paying a bill by phone takes it out of me.....bizarre....

    do hope you are well and happy

    thanks again, love kerry.xx