Forum Discussion

Claireabelle's avatar
Claireabelle
Member
12 years ago

Proper Introduction

It occurred to me I hadn't done a proper introduction on here yet so here goes. I'm the mother of soon to be two year old Amelia and the wife of my very own Magic Mike ( not a stripper of course but magical for all the very right reasons). We started on this detour late August after I had some lumps we discovered investigated which lead to immediate mastectomy and axillary dissection with 6 nodes removed, 3 positive. Staging scans resulted in our subsequent and horrifying diagnosis of lesions in the liver, ribs possibly lungs and pelvis. We have an amazing oncologist who promptly signed us up for the Peggy clinical trial which involves paclitaxel weekly and either a trial or placebo tablet. We are two months in now and feeling pretty good really. My hair loss has been the most obvious side effect for me. No nausea to speak of but feel pretty low and down in the dumps on days 3 and 4 and unfortunately I've started to get pins and needles in my finger tips and toes since my last infusion so that will be something to keep an eye on but otherwise things are going smoothly. I daren't say that out loud however, I feel like every time I get a handle on things and feel positive we get another piece of bad news. Go back to see the oncologist on Tuesday......I imagine our next focus will be scans etc for the trial as we are nearly halfway. I think that will be a nerve racking time. Anyway, love and light to you all, And thank you for creating a safe place to share be supported xxxx
clinical-trials
hair-loss
triple-negative-breast-cancer
  • NaturalBel's avatar
    NaturalBel
    Member
    12 years ago

    Once again, I cant understand how every one is feeling, or as you put it, being optimistic about  stage 4, is indeed an entirely different point of view.  It is important, that I have caused this response from you, because it wakes me up to the reality of what  a lot of other women are experiencing -  that I havent. (to date)

    I am a sure that I cant understand what you could be going through, and I guess my broad sweeping comments arent appropriate for all instances.  I do mean well, because my main aim is to encourage ladies to fight, and give hope.  For those who dont have that, I am sorry and it is an area I haven reached as yet.  As a Triple Negative, who has her portal in her chest, I always have a chance it can come back also.  

    Precisely why at the Cancer Council we quickly discovered that the "Coffee and Chat"  fell into a variety of cases too at one table.  One day a lady visited and brought out the photo's of the coffin she was decorating with her grand children, for example.  On that day, there was a teenage girl at the table, so its always a mindfield of emotions.  2 ladies said they werent coming any more, and that girl didnt return.  So, there is a clear need to have similar situations in the same room!  (tricky)

    Thank you for reminding me, and I will be more aware of other situations from now on....take care Deb

    X Bel

     

  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    While I'm sure you mean well with your advice Belinda, Claire and myself have moved into a whole different ball park to you. You see, for us there is no cure and I think both of us are trying to deal with the very real prospect of not being able to do all the things we want in life. I appreciate that your treatment, etc has come to and end, that will not be the case for us, we will have treatment for the rest of our lives. It is by no means that we don't want to talk about things, but you never had to walk into a group of pink sisters who are talking about how happy they are to finish their treatment, having a reconstruction, the fear of reoccurrence blah, blah and have someone ask you about your condition only to have the room go silent because you are stage 4, have you? So while I can appreciate that you are 'out there', I hope you never really 'get us' because that would mean you have joined the even smaller club of advanced breast cancer. I guess unfortunately we don't all get the happy ending and having people constantly shoving their pink positivity down our throats becomes a little tiresome. I really hope I haven't offended you, sometimes I just need to call it how I see it. Deb xx
  • NaturalBel's avatar
    NaturalBel
    Member
    12 years ago

    I apologise for not getting to say hello earlier, I have just gone back to work after my year with Breast Cancer, the sugery, chemo, radiation all 6 months behind me.  I am mindful now, that every one is different.  I learnt along the way, going to the Northern Cancer Support Centre and meeting others face to face, some people dont want to talk about it, some dont want to read about it.  Ultimately I found great relief to unburden myself, and didnt have friends or family close by, at all times, so met lots of new friends, and spoke to lots of strangers.  But in my past, I have also lectured infront of people, sung in a couple of bands, and talked and cut hair for 20 years, so we are who we are.  I have never held back..... some times some people may find that annoying, who knows. (smiling).  What is important is that you understand that any time, you need to learn anything, need support or just want to spend time with others who "get it" use BCNA for the things that you feel are appropriate.  I have lived in lots of different places in Australia, and I have found the beautiful Launceston people are a bit quieter than I, so I respectfully have learnt to not assume, we all think the same.

    Fear seems to be a common bond though, and how we all handle the scarey new events that take place, is very personal and different too.  

    I wish you wonderful doctors, nurses, counsellors, volunteers and surgeons, because I had them all.

    I am here, if you need me 

    xx Bel

  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    I'm hearing exactly what you're saying. Somethings are helpful, others not so much. I'm the same with my story, I've pretty much locked myself away because I just don't want to go through the same thing 100 times, it's just to emotionally draining. I think I probably need to see a psychologist but I guess to do that you need to leave te house. Like I said, I'm working on it. Keep in touch, either through here or on Facebook and I'm sure we can keep each other laughing. It's very hard for people who don't have mets to understand what we are going through . I get pretty frustrated sometimes and it takes a lot not to lash out. I just try to keep smiling. Deb xx
  • Claireabelle's avatar
    Claireabelle
    Member
    12 years ago
    Hi Deb, thanks for "listening". Hope all is going well for you too. Ive also joined both groups, with mixed feelings. I'm learning very quickly to mentally filter and read only what is helpful! I'm seeing a psychologist through the hospital - not sure how it is going yet. It's always hard explaining your situation to someone new. However it's good to know she is there if I need her.
  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    I have been watching your story with interest. I also have just been diagnosed with liver mets. I really hope that your scans come back with some great news and the clinical trial keeps working for you. I am starting a clinical trial in the next few weeks and have just undergone the removal of my tubes and ovaries as you have to be menopausal to qualify. Maybe talking to a councillor about your down in the dumps days could help with some strategies on how to cope. I love the Magic Mike reference, I love Channing Tatum but I haven't seen the movie. Just remember, there are lots of women living with secondary breast cancer, we can do this. I am also a mum, my kids are 11 & 13 and I want to see them grow up and I'm willing to do what I have to do to make that happen. There are lots of success stories and there is no reason we can't be part if that. I have joined the young pink sisters on Facebook and the women living with advanced breast cancer group as well. They are great for support and encouragement.
  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    I have been watching your story with interest. I also have just been diagnosed with liver mets. I really hope that your scans come back with some great news and the clinical trial keeps working for you. I am starting a clinical trial in the next few weeks and have just undergone the removal of my tubes and ovaries as you have to be menopausal to qualify. Maybe talking to a councillor about your down in the dumps days could help with some strategies on how to cope. I love the Magic Mike reference, I love Channing Tatum but I haven't seen the movie. Just remember, there are lots of women living with secondary breast cancer, we can do this. I am also a mum, my kids are 11 & 13 and I want to see them grow up and I'm willing to do what I have to do to make that happen. There are lots of success stories and there is no reason we can't be part if that. I have joined the young pink sisters on Facebook and the women living with advanced breast cancer group as well. They are great for support and encouragement.
  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    I have been watching your story with interest. I also have just been diagnosed with liver mets. I really hope that your scans come back with some great news and the clinical trial keeps working for you. I am starting a clinical trial in the next few weeks and have just undergone the removal of my tubes and ovaries as you have to be menopausal to qualify. Maybe talking to a councillor about your down in the dumps days could help with some strategies on how to cope. I love the Magic Mike reference, I love Channing Tatum but I haven't seen the movie. Just remember, there are lots of women living with secondary breast cancer, we can do this. I am also a mum, my kids are 11 & 13 and I want to see them grow up and I'm willing to do what I have to do to make that happen. There are lots of success stories and there is no reason we can't be part if that. I have joined the young pink sisters on Facebook and the women living with advanced breast cancer group as well. They are great for support and encouragement.