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Newly diagnosed

Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
So very scared advice greatly appreciated 
I had mammogram as have inverted nipple yes cancer so went through testing good news is not in lymph nodes so had ct scan for other body parts good news no cancer in them but had to have another scan with dye only to find out it’s extensive in spine so very scared bout dying my brain is in overtime stress levels are beyond belief and have no idea wats goin to happen but it’s not in other bones 

Comments

  • MazbethMazbeth BrisbaneMember Posts: 194
    Hi @Not_good_63_57 I am sorry you are dealing with so much and feeling so scared. I know there are lots of others who will respond to you over the coming days and we are all here to support you. The first thing is, you are not alone. This is one of the hardest parts, the waiting and trying to process ‘bits’ of information and not knowing what the next step is going to be. I hope that you will be meeting with your medical team very soon so that you can get some answers. I strongly recommend making contact with a breast care nurse as they can be a great source of support and information. Just from my own experience, I totally understand just how frightening the diagnosis is, but there is going to be a path forward. The Cancer Council also has brilliant support services which I can totally recommend as well.
    I think just about all of us here will tell you not to google - it will not help as everyone is different and often the information is old. Have you got someone who can go to appointments with you? I kind of zoned out or maybe I was just overwhelmed and didn’t retain a lot of what was said to me.
    Your medical team are going to come up with a plan and once you hear it and understand it, you will get on with it. At the start, I felt like I was plonked in a parallel universe, it was all just so foreign to me. Thanks to everyone here, I just kind of got on with my treatment plan.
    I found it really helpful to try and focus on the’ now’  and not to get too far ahead of myself. If you can, keep yourself occupied  - walking, reading - whatever activity that can help keep your mind busy.
    I am sending you hugs. You are not alone. Ask any questions. We are here. X
  • arpiearpie Mid North Coast, NSWMember Posts: 6,369
    @Not_good_63_57 - I am so sorry to see you join the club that no-one really wants to join .... but we are here for you.  Throw us any questions you may have and we’ll do our best to answer them honestly and in words that you understand.

    @Mazbeth has given wonderful tips .... I’d just add, to record your meetings on your phone so you can go over it later on if you need to.  It is easy to miss some info whilst pondering the previous bit!  Having a companion with you as an extra set of ears and eyes (and support) really helps.  Not having to drive to appointments is a bonus too.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,369
    edited November 2020
    @Not_good_63_57 -  Duh!  I hit the ‘enter’ button before I was finished!  Did I mention ‘fog brain’?  With so much going on in your head right now ..... your brain can go into overload .... 

    We have ‘private groups’ for some more personal discussions (check out the right hand columns) .... so feel free to join any of them, if they suit you.

    Try not to get ahead of yourself ... guesstimating outcomes makes it more stressful.  If you find yourself getting really stressed and upset, please get professional help ... your GP may be able to put you onto someone (or your breastcare nurse or medical team.) They can help you with coping strategies. Xx

    It is totally normal to be scared, angry and every emotion in between!  But don’t let it rule your life!  Every day will be different .... try and keep yourself really busy, doing things you love.  This will help keep your mind busy, as I found It mucked with my brain more than anything .... all the ‘what ifs’ .....Personally, I love kayak fishing, and after my GP found my lump, I basically went fishing every day from Nov to Jan, until I finally got my confirmed diagnosis!  Yes, it took that long (I live rural and everything takes longer here! :( )

    If you live rural, you can get $$ assistance to recoup money spent on fuel and accommodation.  Whereabouts are you? State/town - you can add it to your profile .... we may have members there who can help you out with local assistance.

    There are many ways of letting family and friends know (if you want to.)  I told most by email, and gave them weekly updates once my game plan was in motion.  Having their support will really help you get through this train wreck.  You don’t have to tell everyone straight up ..... just those who you think will support you the best! I finally told ‘the rest’ 2 years after .....

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

    Take care, take one day at a time, 1 hour at a time, if necessary ..... we’ve got your back .... so lean on us in these early days of confusion xxx
  • PV123PV123 Member Posts: 202
    Hi @Not_good_63_57
    Sorry you had to join this group.  Please remember that we have the best healthcare system and the latest medications in the world.  When I was diagnosed, I really struggled as well.  I asked Cancer Connect if they could put me in touch with someone who had a similar diagnosis.  After I spoke to my connect friend, I realised that there are many on a similar path as mine and they are still going strong and living productive lives. 

    Please make contact with a psychologist if you feel that would help.  I have over time used many different relaxation techniques such as meditation and tapping to calm my mind.  Sending you my virtual support and hugs.  
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
    Thankyou all 
    yeh went back to docs took my daughter I was so distressed bout it broke down crying as got it in my head not good outcome ... doc said it’s breast mastatic think that’s right so not classed bone cancer but in bone in neck shoulders spine hip/pelvis so that really upset me ... so now on Valium and off to psycholist tomorrow still waiting to get into P.A as soon as I can she marked it urgent ...I really hope there is treatment and hasn’t gone too far but it’s not in nodes or any organs doc said it’s weird lol 
    Does anyone have bone mastatic 
  • brightspacebrightspace Member Posts: 416
    Hi my dear... big breaths
    please join the metastaic group here
    Lots of postive stories and long duration
    Yes it does do your head in at the beginning but life does improve
    All the best
    Bright in hope
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
    Hi 
    how do u join I’ve tried got nowhere 
  • KattykitKattykit Member Posts: 252
    @Not_good_63_57, in the drop down box at the top, click on groups and hit the join button for the Living with metastatic breast cancer group. I'm sorry you've found yourself here but as brightside says there are lots of uplifting stories here and some of us have been around for quite a long time. Just breathe, you are among friends here. 
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
    Hey I tried that clicked join but still cannot acces it now when I click on groups and go to that one there is no join to click on I don’t know wat I did wrong 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,369
    Thats a bugger of a diagnosis and I think we all would react the same. Xx. Good that your daughter supports you at the appts.

    I am glad you are seeing a psych to help you cope.  It really does muck with your brain. :(  

     Being ‘older’ sometimes means it is slower growing and becomes more of a ‘chronic treatable condition’  .... I have a few personal friends in the same boat and they are going ‘ok’. Some have had surgery and meds. Some just on meds.  

    Try and get out and enjoy the beauty of the outdoors ... anything to give you a lift xxx

    take care and all the best xxx

    @Giovanna_BCNA,  @Riki_BCNA ... can you help @Not_good_63_57 to join the Mets group please?
  • Giovanna_BCNAGiovanna_BCNA Member Posts: 1,839
    No problem @arpie will do  giovanna
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
    So seen psychologist her answer to bein negative is to b positive with others that have gone through same have made it and others that have it worse made it and she is so right with that statement 
    she told me I will b ok and I will come out other side 
    that has picked my spirit up bit 
    so no more negative 
  • JoinmelbJoinmelb Member Posts: 31
    Not_good_63_57 I replied to your inbox message too and have just seen you post in here. This group and the ladies on here is exactly the medicine that you need. Mine is breast cancer that has metastatised to the bones only, no other organs at all that I know of. I'm coming up to my 2 year anniversary since diagnosis and am living well. I'm glad you have seen a pysch and fingers crossed your GP is amazing too. Another tip that I have is that if at any time you feel that you aren't being heard, don't be afraid to ask AGAIN and AGAIN no matter how you feel you might be perceived. ANd if you feel that you aren't being heard at all, don't be afraid to change drs. Take care and feel free to ask any questions xoxoxo
  • Not_good_63_57Not_good_63_57 Haigslea/Marburg qld Member Posts: 63
    Thankyou so much 
    yes this site and ladies have helped me so much and I appreciate every comment 
    I have calmed little bit but suffer panic and anxiety so I’m trying 
    once I start treatment think I will b better as then I will know wat to expect 
    but Thankyou xo
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