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Secondary Survivor Stories

julijapi
julijapi Member Posts: 3
edited September 2016 in Metastatic breast cancer

Hi all,

On the request of my friend, I am looking for survival stories. On March 30th, 2011 my friend Kimberly had a routine mammogram which came back negative. Three weeks later she did a self check and found a lump. A week after that she was diagnosed with Stage 2 breast cancer....three weeks after that, Stage four invasive ductal carcinoma which has spread to the lungs.

It's been a crazy three months and she is now on a chemo and herceptin, HER2 positive and those are the facts. But the real story here is my friend is afraid and living with so much incertainty. I want to be able to give her more hope than simple platitudes of "stay strong and postitve". That's what everyone says and frankly, it's starting to piss her off.

I would to give her that rare gift of hope and was taken here by a very nice nurse. Any suggestions would be very appreciated.

I thank you, each and every one for your time and consideration of a woman who shares your stories.

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Comments

  • pisces_tas
    pisces_tas Member Posts: 474 ✭
    edited March 2015

    hi, i understand your friend's shock and fear, plus uncertainty. these are emotions i have gone through.
    all emotions are ok..anger, fear, bargaining, rage, etc. and with diagnosis and treatment you certainly go through a lot. i found it took time to adjust and it helped me to get accurate information to make informed choices about treatment  and prognosis.  talking to others in similar situations may help, although everyone's journey is slightly different.
     if your friend is so distressed she may benefit from talking to a psychologist or GP and may get some medical or psychological help. i now take an antidepressant daily, which can help with several areas, not just depression. it can help with flushes from treatments and early menopause, plus perception of pain etc. after two weeks of taking it.. your friend may feel less anxious and distressed.
    she is dealing with " our worst nightmare", but there is hope. taking life day by day ..helped me. someone said that to me and it made sense and i have found it is a good motto now after i have finished treatment. just being there for your friend is a support. i guess you might feel helpless in that you want her to be better, and not distressed. as you and her work through the emotions, you may feel some calmness, if only for a short period each day; keep searching for answers.
     i had stage two early breast cancer and had chemo, radiation, plus some ongoing isssues, too long to go into here.
    i am not sure if your friend is older or younger.  there is the" my journey kit" and also the " inside story" for those with metastatic BC.
    with metstatic BC there is hope, never give up as new treatments are beng trialled and researched all the time. many live decades with it, or one day there may be a cure.
    i live with the thought there may be a recurrence and also i might get run over by a bus tomorrow. we ALL live with uncertainty of when we will die, or how long we shall live. so staying in a place of fear will not change that really.
    look after yourself and find out all you can, give it your best shot, let time help you to come to terms with it all, does help a little bit. right now, it is all so new and yes it is VERY SCARY and a BIG SHOCK!.. i hope you can find some calmness and a tiny bit of peace at this time. not sure if this helps, kathy.

  • Leonie Moore
    Leonie Moore Member Posts: 1,470 ✭
    edited March 2015

    Firsly I am so pleased that a nurse has led you to this site.  The word is getting out there.  This online network is a very supportive and informative site.  There are always women willing to help with any queries that anyone has.  There is never a silly question and there is never any judgements.  My story started in Oct 2006 and it was the shock of my life but life goes on.  My first thoughts were to organise my funeral.  However I had lots of good reasons to live.  I had a few surgeries to remove my breast cancer (lumpectomies) then  radiation then hormone therapy.  I returned to fulltime work and a year after my diagnosis I married my long-term partner.  What a celebration - instead of a funeral.  I figured that  as I was still alive  I would enjoy the celebration with all my family and friends - so it was Huge.  Life continued on and I enjoyed a long-awaited granddaughter.  I intended to get as much out of life as I could and set myself and my husband a 5 year plan of "good things" to achieve each year.  I got to 4 years and was re-diagnosed last December 2010.  Well I have been on a roller-coaster ride again with surgery, radiation, chemo and hormone treatment.  However how bad it was and still is, I enjoy each day as much as I can.  This is what it is about.  When I go out I look a million dollars (or as good as I can) and I look for enjoyment and pleasure each day.  It doesn't matter that my joints are aching like hell and it is difficult to sit and stand, I am living the best I can.  I set myself goals and always have "things" to look forward to.  People keep telling me that I am doing too much.  (I am doing what I can and loving what I can)  I live day to day with a future in sight and that is the only way to do it.  I get frustrated when I can't do things that I had previously found so easy to do but there is always tomorrow and maybe less pain.  When I was first diagnosed back in 2006, I was lucky to attend an information session and one of the ladies spoke of being a 20 year survivor.  She is now 25 years past bc and is heavily involved with bc activities.  She was and still is my inspiration.  My advice to you (a great friend to have) is to be a great set of ears.  This will allow you to support your friend in many ways.  If you are able to go with her to doctors appointments you will be able to "take it in" and make the decision process easier for her with "all the information on the table" when she has more time to digest it. I could go on and on but there will be other ladies online that will offer more good advice.  take care.  XLeonie

  • julijapi
    julijapi Member Posts: 3
    edited March 2015

    Thanks very much Leonie,

     

    It is very inspiring to read your story and the story of other's who have responded. I going from a lump to stage four in three months is a lot for my friend Kim to take in. But I am finding more and more information and this site has been more than helpful. It was a bit daunting to find very little in the way of secondary survivor stories from a stage four diagnosis. I can't imagine what you are going through and have gone through but you are an inspiration. Your positive attitude is contagious. Thanks so much.

     

    Julie

  • Annie Gayed
    Annie Gayed Member Posts: 204
    edited March 2015

    Hi JuliJapi,

    This is Annie from BCNA's Policy Team.

    We sometimes hear from women who are told to "stay positive" and this isn't helpful at all.

    I wonder if Kimberly has received a Hope & Hurdles pack from BCNA? It's a free information resource for women living with secondary breast cancer, and contains lots of quotes, photos, advice, recommendations and encouragement from other women living with secondary breast cancer.

    We also have a free quarterly magazine for women living with secondary breast cancer, called The Inside Story. It is a supplement to The Beacon Magazine, and contains personal stories from other women living with secondary breast cancer. It also contains information about secondary breast cancer issues, and details on where to find support.

    Finally JuliJapi, we have a brochure called 'Helping a Friend or Colleague with Breast Cancer'. It provides friends and colleagues with some useful information on how to help women with breast cancer, and importantly, things to avoid, like saying "be positive."

    If you or Kimberly would like to order any of these resources, which are all free of charge, call us on (free call) 1800 500 258.

    All the best,

    Annie

     

  • julijapi
    julijapi Member Posts: 3
    edited March 2015

    Thank you Annie!

    Your organisation has been very helpful. I have ordered a Hopes and Hurdles pack and am sending it to her. I migrated to Australia in 2005. My friend lives in California so that Hopes and Hurdles pack is gonna see some milage! I know she has a support team in place there but like you mentioned, sometimes friends and family...as well meaning as they are trying to be, do default to the "stay positive" lines.

    The scariest part is that when she asked everyone to send her links to stage four survivors, she was sent stories of stage one and two survivors, not even sure if they were secondary cancer survivors. This of course is a real blow to optimism.

    I had forgotten that a client of my husband has been a ten year breast cancer survivor and she has most generously offered to help find some material for me to pass along as well.

    The silver lining to all this is that my friend is young and has a great attitude, some days are harder than others of course but she is flighting.

     

    Thanks again

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