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Life After Breast Cancer Survivor Story

SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,418
Today a close friend who doesn't have BC  sent me this link she is a professional counsellor she knew I would want to share this 

https://www.refinery29.com/en-us/2017/10/176194/life-after-breast-cancer-survivor-story
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Comments

  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,418
    I found it absolutely true in many aspects and down to earth... 
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 283
    Wow what a read !
  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,418
    YEP but very true 
  • kmakmkmakm MelbourneMember Posts: 7,973
    Oh my goodness, she so eloquently writes exactly what I'm feeling. What so many of us are feeling. Weirdly good to see it written down. Thanks for posting that @SoldierCrab.
  • SisterSister Adelaide Hills, SAMember Posts: 4,957
    Wow...no other words, just that.
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,902
    So eloquently put!
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,408
    I miss having energy. I scrolled back on a conversation in facebook pre bc op and I had done 6 loads of washing, vacc'd the house and changed my bed sheets all in one day! Now I do no washing (my hubby does it), I vac only one room and it takes days for me to get the fortitude to change bed sheets. I cleaned rainbow bird do do off a chair on the veranda yesterday. That stuff is like cement and went to get a towel from the bathroom cupboard to cover the chair. I got dizzy in the cupboard and had to sit down. I did get the towel out though.
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,952
    Great and true read - just posted it to my Facebook page. 
  • kezmusckezmusc Member Posts: 1,544
    Brilliantly written. 

    Why, I wonder, do the medical and scientific professions not search out these stories to see what's really going on.  There are so many of them, so many people with the same issues and thoughts and yet the list of possible side effects is so small and how to handle them so placating. If you differ from what's on the list you are classed as a rare or extreme case.  To me it appears there is an awful lot of "rare" cases getting around.

    Crowd sourcing would provide so much more insight, whether or not anything comes of it is another thing.  
  • kmakmkmakm MelbourneMember Posts: 7,973
    The attitude is just too blithe. Kudos to my GP who took herself off to do a two week course in BC survivorship. She has so many women coming through her doors with the same problems, and identified that she didn't know enough about it.
  • MjhekeMjheke ACTMember Posts: 78
    I am seeing the medical oncologist tomorrow to talk hormone therapy. AI as I am post menopausal. I have had terrible menopausal symptoms anyway, and I am concerned at the quality of life with AI’s many of you talk about. I will have lots of questions about my overall risk of return of BC or a new BC and wonder if anyone has chosen quality of life over taking medication. I have been told by my surgeon that I will be encouraged to take them as my cancer was 💯 ER positive. I also have LCIS which I am told overall increases my chance of a new or return of my BC. 

    I have had a rough 3 months post surgery with seroma x 3 drained, infection and now severe burns post radiation. I have pretty much been in pain since surgery and was looking forward to feeling better, but worry this won’t ever happen!! 

    Michelle x
  • AfraserAfraser MelbourneMember Posts: 3,714
    Hi @Mjheke

    The problems with AIs that people talk about here are very real and they need to be seriously considered. However people have a range of experiences. I have been on letrozole for almost 6 years and have no aches, pains, stiffness or flushes. I do have vaginal dryness, at least triggered by letrozole but alleviated by a pretty small dose of oestrogen cream. The latter also needs to be read (both occurrence and treatment) in the light of my age (now 73). I have always been an advocate of trying something if recommended in your particular case and seeing how you go. You can always stop. No-ones can force you to take any medication and whatever the problems, the balancing up of the possible benefits and the known side effects is personal and particular. I hope you do feel much better, very soon. 
  • kmakmkmakm MelbourneMember Posts: 7,973
    @Mjheke Oh Michelle, it's just such a shitfight isn't it? I'm so sorry you've had such a rough time. I took a month off after my BMX & recon before I started on Letrozole. Give yourself a breather. Ask your oncologist how long you can wait before you start taking it.

    With my chance of developing another breast cancer at 27% (pre-mastectomy, but there's always a bit of tissue left behind), and that was before I found out about the CHEK2 gene mutation, and my tumour being highly ER positive, I don't feel I have a choice in taking it.

    Please remember that some people take it with no problems at all, and for many the side effects settle down after six months. Fingers crossed. K xox
  • Michele BMichele B Member Posts: 135
    What a read...wouldn't it be lovely for everyone who tells us how lucky we are that we are 'over it all' could read this article. I always feel such a whinger if I'm honest and say im feeling very ordinary. Nobody understands unless tney have walked this path too!
  • kmakmkmakm MelbourneMember Posts: 7,973
    Me too exactly @Michele B! I really do feel like I'm lying sometimes, having to say 'good thanks'. And it's awkward with people you like and know truly care. But then if you tell the truth you sound like a massive whinger!

    I think the thing is we have to get over the term 'recovery'. It suggests a return to how it was before. We all know that it will never be how it was before. This is the new normal. I'm desperately trying to get my head round that. Living with 24 hour a day pain, perpetual tiredness, grief... That is my existence for now, but within that I have better days and worse days. So when it's a better day I suppose I must embrace that, and say 'good thanks'. It's a different frame of reference eh?

    Hope you get a good rest tonight. K xox
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