Hello

OverwhelmedOverwhelmed Member Posts: 2
edited May 2018 in Newly diagnosed
Hi everyone, I was diagnosed mid February and had surgery on the 4th April where the mass was removed and lymph nodes were involved.  I was scheduled to have further nodes removed but it was cancelled as more tests were needed on Liver and Spine but thankfully these were all clear.  I am scheduled to start Chemo this Thursday (hopefully no more setbacks) and even though I do want to get it started I am feeling very fearful about it too.  I am going to try Cold Cap treatment and wondered whether anyone else has had this done and how it went.  I am listening to Mediation Apps at night which is really helping on Positivity and Gratitude.  I feel like a part of me is missing, and have lost confidence in everything at the moment.  I know I will get myself back but wonder if I will ever totally be me again.  This is my first time on this site, and feel this might let me get out what I am actually feeling, as I do hide a bit from the family, so as not to let them worry too much.  Hopefully through this journey I will have learnt a lot and able to help others going through the same thing.  

Comments

  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,914
    @Overwhelmed Sorry that u have to be here but Welcome!!  I have just finished my third round of 4 of TC chemo. I was diagnosed with IDC and DCIS in February after a lumpectomy and went on to have a partial mastectomy and then a full right sided mastectomy with auxiliary lymph node removal. All nodes came back clear and a CT scan showed no spread and no skin and muscle involvement so essentially cured but decided to have chemo as I am relatively young and my oncologist said it really pops up in the other breast and if it did come back somewhere else we might not be looking at curative. I didn’t want any regrets 10 years down the track so decided to go with it. Chemo is very individual if u read all the stories I personally haven’t found it as bad as I expected. It’s a huge learning curve and u get to know when to take all your medications.  I found the first one worse than the second one but I had better pain relief by then so now I’ll just wait and see how the third one pans out. 

    I wm doing the cold cap. I have just gunned on the top but still have enough hair to wear a baseball cap most of the time with s pony tail hanging out the back. I have a wig that I wear for special occasions. @kezmusc had great results with it so she can fill u in on her experience. Definitely with a go but make sure to take some panadol before u go as the first 20 minutes can be pretty cold and some people can handle it. 

    The whole experience is so overwhelming and scary but you will find great support here. U will be u again - maybe a slightly different version but u will get there. Huge hugs and best of luck for Thursday xooxo
  • Hopes_and_DreamsHopes_and_Dreams Gold CoastMember Posts: 756
    Hello @Overwhelmed.  So sorry to hear of your diagnosis but I'm glad you have found us here.  You will find an amazing bunch of women and men who completely understand what you are going through.  All our diagnoses and treatment plans are different but we have all been where you are and truly get how you are feeling.  This is one place you can be yourself and not have to hold anything back.  I was lucky and didn't need chemo but there will be others who can give you information on both chemo and cold cap treatment.  We are all happy to share what we have learnt along the way as there is so much to take on board in the early months.  You will find yourself again - you will be the same but different, you can do this! :)
    Wishing you good luck for Thursday.  We will be here when you need us.   Jane x





  • SisterSister Adelaide Hills, SAMember Posts: 4,242
    Hi @Overwhelmed ; It's such a lot to take in - the golden words are "one step at a time".  And this is a place where you can ask questions, get advice and information, laugh, cry, rage - whatever it takes.  
    I had a partial with sentinel nodes removed in December but there were no clear margins so went back in a couple of weeks later for a mastectomy with axillary dissection (no further nodes involved).
    You don't say what your chemo regime is - I had 4 x 3 weekly AC followed by 12 x weekly Paclitaxel which I just started last Thursday.  I won't say it's fun but it's probably not as bad as you're fearing.  Just make sure you've got your anti-nausea meds and don't wait to ring your oncologist and say it's not enough if it isn't.  They tend to send you home with the minimum (Maxalon aka Smarties) until they know how you're going to react.  Also be kind to yourself - if you need to sleep, then sleep.  You may be one of the amazing ones who just go on as normal but most of us can't manage that.
    Try to do exercise when you're up to it, whether it's walking to the end of the driveway or walking 5km.  It helps get over the chemo.  And try to get on an exercise programme if there's one available to you but let yourself get an understanding of how chemo is going to affect you before you get anxious about anything else.
    As for cold caps, I tried them for the first couple of chemo treatments (mainly for the benefit of the kids) but while they mostly worked, I ended up with a large bald strip right across the middle of my scalp from ear to ear that no amount of combover could hide, so I gave it up.
    Anyway, welcome!
  • OverwhelmedOverwhelmed Member Posts: 2
    Thank you all so much so much useful information.  I can see already how we cal all help each other.  I'm still navigating the site, so hopefully I am answering you all in the correct way!  I just got back from an appointment and due to a small problem with my heart my Chemo treatment as been changed to AC one every 21 days four times.  Then they will go in and do a lymph node clearance and then I will start radiation treatment.  My daughter is getting married in January, so grateful that treatment is starting and hopefully I will have enough time to recover and be the best Mother of the Bride I can be!  Thanks again @Sister , @Hopes_and_Dreams, @Kiwi Angel
  • kezmusckezmusc Member Posts: 1,182
    Hi @Overwhelmed,

    The other ladies have given you some great info.  It's a bit of a hazy, foggy cloud at the start. One step at a time, one day at a time. 
     I had lumpectomy, full node clearance, re excision, 4 x 3 weekly AC and 12 weekly Paclitaxel as well and 30 rounds of rads.

      I had a great run with the cold cap.  Pretty much came out looking like I did at the start.

    If you like you can pm me and I can give you a run down on the cold cap.  How to make sure it fits properly etc.  Number one treatment is the make or break with these things so it seems.  

    Keep talking on here there is so much warmth and experience from everybody to help you along the way.

    All the best.

    xoxoxoxo

  • jennyssjennyss Western NSWMember Posts: 547
    Dear @Overwhelmed, looks like you're going great guns with your posting! Yes, a lot of network members share experiences and fears that we can't take to family. Thank you for thinking of supporting  others in the future, even though its all ahead of you. Keep in  touch  and let us know how you're going. I had AC chemo too. Best wishes to the mother of the bride from jennyss in Western NSW.
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,212
    edited May 2018
    hi @Overwhelmed
    The ladies have all given you great advice and support above here are links to help you find your way around....

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    Navigating the online community

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread#latest

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

  • kmakmkmakm MelbourneMember Posts: 7,432
    edited May 2018
    Hi Overwhelmed. The bit where you said "I know I will get myself back but wonder if I will ever totally be me again" resonated with me. It's how I felt, and still feel tbh.

    I was diagnosed early last December, went straight to white hot anger for a couple of weeks, and then dissolved into tears about several aspects of this disease, and quite specifically about the change that was being forced upon me. My breast surgeon was very kind, but very clear, that this experience does change you.

    It's five months later now and while I still struggle with the ongoing changes, it's got a bit easier. I'm having counselling which helps, and talking to my BreastCare nurse has been excellent too. Do you have access to one yet?

    I started to use meditation apps too (settling on Headspace) which I've found very helpful. In fact just out of hospital this afternoon, trying to have a sleep and failing, I used it to put me out for a very solid 75 minute nanna nap!

    Chemo scares the shit out of almost all of us so there's no use me saying don't be afraid (I had a massive full on panic attack two nights before my first cycle). We all react differently to the drugs, and mostly the medicos have good ones to counterract a lot of the side effects. It's not fun but you'll get through. Keep remembering why you're doing it and that it's temporary. One foot in front of the other, one day at a time. Accept all offers of help, you'll experience great love.

    I've had to hide a fair bit from the family due to my particular circumstances, and have found this forum to be a warm and supportive place that has been an ideal pressure valve on many an occasion.

    I had TC chemo and tried the cold cap but it didn't work for me. As it turned out I've quite enjoyed being bald and wearing all my different hats and bandanas! Showers have been fantastic, the sensation of water onto the bare scalp is lovely. And now my hair is growing back!

    We're all here for any questions at any time. You might also like to use the search bar on a particular subject. The accumulated wisdom of this hive mind is a wondrous thing! A big bear hug to you, K xox
  • EastmumEastmum SydneyMember Posts: 445
    Hi @Overwhelmed - I'm starting the same chemo regime as you next week - also a bit terrified over the whole thing but I'm gathering lots of info, particularly from the amazing people on this forum, to get info on a wider range of possible side effects and experiences. I know that everyone has their own unique experience with chemo but it's really helping me to hear what other people have gone through. 
    It's so lovely to have your daughter's wedding to look forward to!
    Best of luck with it all, and let us know how you're going xx
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