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KarenS66's avatar
KarenS66
Member
10 years ago

my uninvited guest

Hi new friends, I have never written a blog so this will be more of a ramble that I hope makes sense. 

I have had an interesting few years since 2009 starting with a Uveitis flare, a recurrent eye disease due to my testing positive to the HLAB27 gene, I managed to keep it at bay for about 2 years without a flare, only to be diagnosed with Crohns disease last year.

Well I decided that this was going to be my year I turn 50 in March and was working on being slimmer and having my healthiest year, but the words to my dear hubby weren't even cold when we felt the dreaded lump, I went to the doc who said it could be hormonal but to have a mammogram and scan to confirm, but it was confirned an uninvited guest had snuck it's way into my breast and in moments had turned my life upside down, and the emotional roller-coaster ride began. ....

I am going to have a mastectomy on Thursday and perhaps having lymph nodes removed if necessary. 

As this all happened so quickly I decided to have a good riddance to the uninvited guest "" party,  but life had other plans for me once again and triggered an awful Uveitis flare in both my eyes so back to 2 hourly steroid drops and dilating drops 3 times a day and stuck in a dark room as the light is too much! 

I was feeling really sorry for myself as I was planning on having a final swim in the sea as a "whole "person, when I received my BCNA pack in the post. I also checked out this forum and was humbled to see so many beautiful ladies in the same or far worse situations than I am - I salute you all and hopefully can put my pity parties on hold for a while and provide some sort of encouragement and support as I know I will be getting from you all.

But. ... I am absolutely petrified for this journey I won't lie ?? 

13 Replies

  • PaulaN's avatar
    PaulaN
    Member
    10 years ago

    Hi Karen

    I'm new here too & Iv found it fantastic,  The support given has really helped me heaps. I thought when I found out "I didn't invite this thing into my body but it can just f#*k of out of me.  This has kind of been my mantra since I found out. Good luck with your surgery I'll be thinking of you

    Paula

  • amclarke's avatar
    amclarke
    Member
    10 years ago

    Hi Karen66

    I'm not sure if you will get to read this before your surgery.  Just to let you know you and your family are in my prayers. God be with you on this journey you are about to embark on. I wont lie and say it will be easy, but rest assured you have our support and prayers

    Lots of hugs

    Ann Marie

     

  • Ann-Marie's avatar
    Ann-Marie
    Member
    10 years ago

    Hi Karen,

    Welcome to the Online Network, my name is Ann-Marie and I am the Online Community Coordinator at BCNA.

    The members are just amazing and as they have mentioned this is the place for you to rant away, ask questions and share what you are going through.

    You have the support of everyone here, whenever you need us.

    ~Ann-Marie

     

  • KarenS66's avatar
    KarenS66
    Member
    10 years ago

    Thanks all - woke up this morning with the reality of one more sleep - am playing over my surgeons words "your breast has let you down ... it must go" to try and keep from going insane - even though my boobs are heading South they are mine and I am really battling to come to terms with tomorrow's surgery.

    Had a counseling session booked but had to cancel due to the Uveitis but do believe I will need some after.

    Will be keeping all my friends on this forum in my thoughts and sending strength for wherever you are in your Journey ??

  • rowdy's avatar
    rowdy
    Member
    10 years ago

    Hi and welcome to the site. Good luck for your surgery on Thursday.

    This site is for all of us and unfortuntley ,there is alot of us, we are lucky to have this site and each other to chat.

    Yes have your party,I had friends around for a drink before my mastectomy and it was a great night having the people round me that had supported me during my chemo.

    Take care and come back and visitxxx

  • Deanne's avatar
    Deanne
    Member
    10 years ago

    Hi Karen,

    That's the great thing about this site, you can let out your real fears and realise that you are not alone. Unfortunately there are lots of us.

    My husband has had Uveitis on and off for 23 years. Also due to HLAB27 gene. He luckily had no flare ups while I was going through my treatment (2013) but has had 2 in the last 6 months ( still going at the moment). So I know just how painful and disruptive to life this can be. Let alone having Crohns and now breast cancer as well!

    I hope you get to have that party at another opportune time on this roller coaster. It is important to grab onto the good moments whenever you can! Whenever you need to have a chat just jump on here. Wishing you all the best. Deanne xxx

     

  • Beppie's avatar
    Beppie
    Member
    10 years ago

    Hi Karen , 

    sweetheart , feel free  to rant and curse all you like. Terrible blow to you . I understand as I've had breast cancer twice. My sons just been diagnosed with Chrohns too, not nice at all. Wishing you well and sending hugs to you ????

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    My best friend has crones and is a powerhouse of strength to me. I don't know how she keeps going but she never gives in. I imagine although frightened right now, you will have the same strength pull you through the bc just like the crones.

  • KarenS66's avatar
    KarenS66
    Member
    10 years ago

    Wow thanks guys this is an excellent forum xxx wish I had stumbled on it sooner