New diagnosis

crafty
crafty Member Posts: 17
edited December 2018 in Newly diagnosed
hi everyone,
I am new here, while I am saying I am newly diagnosed it occurred back in Sept. I felt so overwhelmed that when I looked at this site I couldn't cope, I had to shut it down. It has taken me many visits to get to this stage. While it was bad news that I had to end up here I keep telling myself I am so fortunate.
I saw my GP as I had felt some general pain in my right breast, when I checked my breast I found a large lump. I have been diagnosed with stage 3 cancer but all clear on bone and body scans. The cancer lump was 3cm in size.
It was a whirlwind since diagnosis was confirmed with my breast surgeon, I had 3 days till surgery to met with plastic surgeon and scans, and for us to tell our children. I had a mastectomy. All of this occurred within 10 days from the mammogram. 
I am currently having chemo which I honestly feel has knocked the stuffing out of me, from here I have no idea. Suppose I have been told however can't remember a thing, and my husband is not too much better. I will ask my oncologist at my visit in a couple of wks, I am managing at the moment step by step and not looking too far ahead. Chemobrain is a horrible/challenging thing.
We have just got my income protection, so I know we will now be ok financially, which has taken some stress off our shoulders.
Looking forward to sharing time and journeys with you all, and the support you all give so freely
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Comments

  • socoda
    socoda Member Posts: 1,767
    Hi @crafty, welcome to the forum. While having everything happen so quickly is a total whirlwind it can also be a bit of a blessing in disguise in that you don't have the time to ponder what is going on inside your body while you're waiting for the surgery. How old are you're children? Any questions that you may have please feel free to ask away as that can help take away anxiety of the unknown and also assist in any side effects you may be having. Above all else welcome, you are amongst friends who can offer advice, sympathy, laughter and friendship and make you feel that you are definitely not alone. Big hugs to you. Xx  
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    edited December 2018
    hi Crafty, 

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



    How to post on the main forum – use this
    link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion

     

    Navigating the online community formerly the
    what and how thread
    .

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

    Breast Care Nurses

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

    My Journey online tool and other resources. 

    https://myjourney.org.au/hp/step5


    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further
    information or support please call 1800 500 258. BCNA’s helpline will now be open from
    9 am-6 pm Monday to Thursday and 9 am to 5 pm Fridays.  

     

    How to understand your pathology
    reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

  • primek
    primek Member Posts: 5,392
    Hi Crafty.
    Yes it's a lot to take in. I'm hoping you've had some support from a breast cancer nurse. My confirmed  diagnosis happened between Xmas and New Year almost 3 years ago and unfortunately all the support people were on keave at this time. Sometimes it feels like last week that I was diagnosed.

    Yes the chemo is hard going. Well it certainly was for me. Normally a woman who did everything.... working mother, a manager, a planner.... Reduced to that of the patient who couldn't remember stuff all. I wrote everything down. It's all the anxiety that goes with diagnosis not just the chemo that impact on our memory. Our body is just trying to heal. That's it's job. On a bonus side, for me anyway, is very little recall what chemo was like other than feeling unwell and not being able to work. Hopefully it will be like that for you too.

    You might have radiotherapy after chemo depending on the tumor location, but you may not. Other than that it might just be a tablet for  the next 5 to 10 years to suppress hormones...if you have that type  of cancer. 

    We are here for any of those questions that just pop in your head. Kath x
  • Sister
    Sister Member Posts: 4,960
    @crafty Welcome (unless I've already welcomed you in which case just put it down to chemo brain).  The other ladies have already given you the good advice.  How old are your kids?  If they're really little it can be hard for them to help but if they're older you may be amazed at what they are able to do.  Mine were 11, 12 & 15 at time of diagnosis - it's a year on from that now and they have been wonderful.

    You need to focus as much as possible on yourself at the moment as you probably don't have the energy to do too much else.  The income protection does take a weight off when it comes through.  I would suggest (based on my own experience) to give yourself some time after active treatment to recover before rushing back to work.  I finished in September and went back at the beginning of this term.  I desperately needed to mental stimulation but physically, I wasn't ready.  Not that that probably matters yet for you but keep it in mind.

    Chemo is doable but it is a hard slog so be kind to yourself and get as much rest as you can.  On the other hand, you will find it beneficial, both for treatment, better recovery and mental health, to join a specialised exercise programme if there is one available near you.  Otherwise, go to see an exercise physiologist who specialises in oncology (health care plan should be available for this).  If you let us know whereabouts you live, someone here may be able to help you.
  • crafty
    crafty Member Posts: 17
    thanks everyone,
    yeah its hard being on the other side. I am a nurse and worked full time within the community, I managed my area, I have always worked, been the backbone for my family: organised everything within our family, like all nurses a control freak on everything.
    My girls are older and are getting there as they are not use to their mum in a non functioning role. I must say my hubbie has stepped up, I almost feel abit suffocated at times, he has become very protective. I know it sounds terrible but we have never had a joined at the hip relationship. I am not rushing back to work, actually I will need to find a new one eventually
    I am not pushing myself to do anything, We have spoken about me having at least a yr off work so I can recover and then we plan to travel abit round the Kimberleys/Darwin for abit. But lets see what happens with my path and if he can get the time off work
     my hubbie is having a big learning curve on doing everything. I am learning to turn off or more bite my tongue when things are not done my way, and not to look at my garden too much.
    I feel the the side effects of chemo has got worse with each one, am having Ristempa the day following my chemo. For the last 2 doses. The bone pain has been so horrendous, I am not going to have this next time and the chemo can be altered. The bone pain has become part of my day that stops me functioning, and then we have the other side effects. The fatigue has really hit me since the first dose. Sleep is not a problem for me.
    I was down to join a rehab group but ended up in hospital with febrile neutropenia, neutrophils were zero on day 8 of my 1st dose of chemo. So I must remember to asked the nurses to follow it up. I go for a walk each day when i feel up to it, to get the mail and a walk round my garden. We live on a small acreage so it is a wander around.
    I live just outside of Melbourne in the hills, a little unknown town called Avonsleigh, just near Emerald, I would love to connect if anyone is close by.

  • arpie
    arpie Member Posts: 7,521
    All the best for your ongoing treatment, @crafty  ..... those bloody neutrophils are annoying little suckers when they don't want to be found! A buddy had similar happen to him (hospitalised & isolated) when his went to zero too.

    When you get to the Kimberleys (or before) - make contact with @Annie C .... she is at Derby!   

    Great that your hubby has stepped up to the plate .... mine has dementia so is not always 'up with it'!  :(  

    Take care xxx
  • kmakm
    kmakm Member Posts: 7,974
    @crafty Sending you a PM.
  • primek
    primek Member Posts: 5,392
    Hey ...apparently clarytine really helps with those nuelasta injections and stops the pain. I haven't had personal experience as didn't know about it at the time but many women here have and said it made a huge difference. 
  • Doin'it
    Doin'it Member Posts: 377
    Claratyne worked a treat for me. It’s worth a try if your oncologist approves @crafty. Take care 
  • crafty
    crafty Member Posts: 17
    thanks for that, I have been given endone. Would much prefer a drug that is not so addictive. Especially as I am taking it 2-3 times a day. Thinking of buying more hot pacs as well, these seem to help abit with all the pain, could all be in my mind but who cares.
    I will send my hubbie out to get it tomorrow :) 
  • Sister
    Sister Member Posts: 4,960
    I used wheat bags a lot for aching legs.

  • Annie C
    Annie C Member Posts: 849
    @crafty
    You are very welcome to drop in on me in the Kimberley any time. We too live on acreage some 10 kms out of town. 

    Judging by your online name I am guessing that you are into crafty things. I love anything to do with a piece of fabric and a sewing machine. 

    My very best for your continuing treatment.

    Warm (very warm!) Kimberley wishes to you.

    Annie



  • crafty
    crafty Member Posts: 17
    hi Annie, yes I use to be a mad, compulsive quilter. Haven't done much recently. Wouldn't trust myself to cut anything out at the moment as I have a memory and abilities like a sieve. I often sit in my sewing room and attempt/pretend to read as it gives me a sense of peace in there.
    All going well we hope to be up your way sometime round mid next yr, but who knows as I am only in early days of treatment
    enjoy your warmth, cos I think its cold here. Unsure nowadays cos I am always bloody freezing
    Maryann 
  • Annie C
    Annie C Member Posts: 849
    @crafty
    Ah well Maryann.
    I will have to give you the royal tour of My Sewing Room. It is really a 40 foot "donga" pushed in under the shed roof. But it's mine and it has a lockable door for when I crave isolation to create. (It is also airconditioned).

    I found sewing difficult in the 6 months post treatment. Peripheral  Neuropathy  left my right arm and hand weak. Cutting out had some interesting results (along with the temper and frustration). All is good now. 

    I am a mad compulsive quilter. Got 3 on the go at the moment. 

    There are  discussions called Creative Corner and What Did You Like Doing Before Breast Cancer.  There you will find photos of  crafty items posted by other members. 

    Put up photos of your work. They are much appreciated by everyone.

    I don't know about enjoying the warmth, Maryann. The heat I don't mind. Could do without the humidity. We are at the moment copping a pasting with a terrific thunderstorm rolling in. Thunder, lightening and rain. The light storm dancing across the sky is beautiful. Lights up the whole bedroom. The house roof is crackling with static electricity. Expect to lose power soon. Ah rats there will go the air conditioning and probably no sleep for me. 



  • kmakm
    kmakm Member Posts: 7,974
    How did you go @Annie C? Did your power stay on?