Very brave of me and us

Alsopt
Alsopt Member Posts: 225
edited May 2016 in Day to day

I'm a bit like a lot of gals on here keep your mouth shut be strong however I intend on reminding the medical profession we are not statistics I'm not an survivor I'm just someone living with fear and reality may be my last post here as I want to move on I'm sorry NOT for fighting and being real does my head in the last thing I want to see is more pink ribbons possibly I am in denial however I know my body I'm not prepared to sit back and just accept I'm not into more drugs I may of shoved that pen into my oncologist reality check I want to live no more drugs my story isn't different to any but for me if I can't walk exercise I'm done very difficult to put that into words I only hope one day that we stop being warriors and live without all the stuff that comes I know for me I plan on 20 years at least 

Comments

  • Alsopt
    Alsopt Member Posts: 225
    edited May 2016

    Sorry Christine I was being negative Nancy.  Today's another day xxx 

  • iserbrown
    iserbrown Member Posts: 5,542
    edited May 2016

    Nice to see that today is brighter than yesterday!  Goodness it is tough being a pink lady some days.  We all understand that!

    Take care

    xx

  • Mishie
    Mishie Member Posts: 10
    edited May 2016

    I'm glad you feel better today, but don't beat yourself up for being negative or having a bad day! It does you good to get it out of your system, and to be honest I think it's useful for others to see. It's good to know other people are having down days and bad side effects. Last week I found myself denying some of the serious side effects I had after chemo after reading a number of people sailed through it without any problems. It made me feel like I was being a big stupid wussy girl for feeling so sick and whingey. The fact was I ended up in hospital for 4 days last week, I should have accepted the negative and called my doctor sooner.

    I hope that made sense. I should have accepted that *I* wasn't ok rather than trying to be tough. I think you're actually doing other people a service to show your vulnerability and allowing us to share in the tough times. I hope you truly are feeling better today, and if not I hope you have some supports there to help. Big hugs to you!

  • [Deleted User]
    [Deleted User] Orbost, VictoriaPosts: 0
    edited May 2016

    Hi Alsopt,

    I think that we all have to be vocal during our various treatments, and ask questions all the time. We all need to have a clear picture of what is happening, and to be an active participants in discussions in regards to the options for the treatments relevant to our individual situations. 

    We all have options and need to gather information so that we can make objective decisions. Our families and those closest to us need to clearly know what we want so that they can speak for us when we are unable to.

    This network is a great place to go to for support and guidance. We are all here because of BC, however this disease does not define us as individuals. I thank my lucky stars that we can all come here and give each other the fellowship, gain advice and support.

    Dont forget how awesome you are ! Sending you a big cuddle, Trace xx 

  • suzieq
    suzieq Member Posts: 332
    edited May 2016

    Hi, you sound a bit like me.  Couldn't take the drugs - I am just one of the people whose body could not tolerate them, any of them.  Had I continued I would have been bedridden in some mental institution and most definitely divorced.  I resolved my fear by reminding myself that had I stayed on the drugs I may have gotten secondary breast cancer anyway.  There was just no way of telling.  Now I am working out (latest research indicates strong exercise, particularly weight bearing exercise can increase survival rates by 30%).  I have my health back and I feel fantastic.   Good luck..

  • Alsopt
    Alsopt Member Posts: 225
    edited May 2016

    Thankyou

  • Alsopt
    Alsopt Member Posts: 225
    edited May 2016

    Thankyou hugs to you also I know my body and this drug is not going well with it -  this has happened like you at other times and I kept on going til I fell looking into a different onco and other opinions 

  • Alsopt
    Alsopt Member Posts: 225
    edited May 2016

    Thanks Trace I think I may have to stop this drug and look at alternatives time for me to feel better not worst big hugs 

  • Alsopt
    Alsopt Member Posts: 225
    edited May 2016

    Yes sounds similar that's what's getting me down I was starting to feel better until the good old letrozole scared to not take it but my quality of life is backward on it so I'll put my big girl pants on get another opinion and see if I can come up with a way I just want to be able to exercise more that helps me a lot all the best - yes I fear I may be in loony bin if I continue on this lol 

  • suzieq
    suzieq Member Posts: 332
    edited May 2016

    Try and stay on the drugs if possible.  You are describing normal symptoms many women seem resigned to live with for 5 years. However, statistics (don't you love statistics) reveal at least 50% do not finish the 5 years.  If the symptoms are too intolerable for you perhaps your Oncologist can try something else. I didn't need to have chemo - I chose it because it gave me another 4% survival chance.  Had I decided not to have chemo I would never have seen an Oncologist and doubt I would ever have started the drugs in the first place as my GPs don't seem to have the same conviction as the Oncologists.  After trying every single one of those drugs the last thing my Oncologist said to me as I walked out the door for the last time was "you could be dead in 18 months".  Nice!

  • lrb_03
    lrb_03 Member Posts: 1,267
    edited May 2016

    Hi Alsopt

    I take my hat off to you. I've been a bit down recently, and felt like I had nothing to offer, so I just didn't come on the site. 

    I've been incredibly lucky, with minimal side effects from letrozole,  but I get your frustration.  As you've found before, be your own advocate. Ask to try another of the AI's, or tamoxifen, to see if you have less side effects from them. 

    I, too, get sick of the pink ribbons and other reminders. However, Idon't think we'll ever forget,  anyway.

    Do you have a breast care nurse you can talk to about your concerns? Itmight be worth a chat with them.

    Take care, Lyn