please help

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    My heart and spirit will be with Amanda and those who depend on her and love her. May all be safe. May this be the beginning of a new day filled with hope. (((((((Cathi)))))))

  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited August 2010

    I'm sending prayers and positive energy to you and your family, Cathi.  I truly think this is for the best.  Amanda has to leave if she's going to get her life back in order. 

    Love and hugs,

    Karen

  • 1Cathi
    1Cathi Member Posts: 1,957
    edited August 2010

    Thanks all,  yes Karen she has to eave,  and she is gone,  all loaded, moved and unpacked at Jaclyns, just hope she keeps her strength and faith that she has done the RIGHT thing,  it took me several attempts over 20years to stik to my guns,  always feell for the same old crap lines. This time I hope she is not at  all like her mom. i AM SITTING HERE ALL DAY,  WATCHING THE TIME click-click PAST,  EEXPECTING HELL TO BRAKE LOOSE LATER-  UGH kinda frightening.

    XOXOXOXOXOXOXOXOXOXOXOXOXOX

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Okay, everyone. At about 6pm Eastern time, let's send prayers and calming energy for SIL that he might grieve and take this as a very painful wake-up call. And that's all. Period.

  • cloudhowe
    cloudhowe Member Posts: 236
    edited August 2010

    Amen to all the above!!!!!

    Amanda's kick up the arse is on hold. Thank the lord she has come to her senses. It is gonnie be tuff for her, and I suppose, for him, but there is no alternative. He seems so volitile. Don't hesitate to get the authorities involved. It would be for the good of all, SIL included.The very best of luck xx

    Got mammo, seeing breast surgeon as my boob is very hot, bit sore and elevated temp.

    Didn't make  it down south, my cuz who couldn't make it to the funeral (work committments) is up for the weekend. Feels like nothing that I plan is going to plan. Last herceptrin on Monday, so being tied to hospital is coming to an end.

    Cathi - all good wishes and fingers mightily crossed for you.

    Nets xxxxxxx

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    Sending prayers to Cathy's SIL so that he may know his loss and resolve to make up for the cause.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Waiting. Praying.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Meanwhile, Nettie, here's me wearing your gift. I meant to have someone take a picture with Devin so you could see it better, but forgot. This is with my daughter Jill, but at least Devin is in the background. Thank you so much!!! People look perplexed when I wear it, trying to figure it out. Great fun!

     

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2010

    Cathi I have been thinking about you and Amanda. Hope all went well last night.

    Donald has been on vacation all week, he put in for this week off when we thought I would be off after the 30 th. I have had him do some work around the house while I have been at work. He did do something for himself, he went fishing on two separate days. Today we are taking a day trip to Asheville to see the big quilt show. We went 2 yrs ago when I was getting my tatts and he enjoyed it. When I said that the show was this weekend, he said let's go.

    Sheila

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited August 2010

    Sheila, enjoy the quiltshow. I used to love being in them. I've won everything from Viewers Choice to Best of Show!

    Cathi, we need an update!

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Hi Sisters 

     I know its been ages and ages since I last posted here !  I went thru several months since I broke my leg last November of being fed up of being ill and feeling heavy with bootface worry, so I became disassociated  and held back with all my thoughts, mainly due to stress and worry of the BRAC1 test etc. I hope you can all understand these feelings I know you will.

    Anyway I have been reading still on other topics for  couple of months mainly it was due to a hip pain I have had for 8 weeks now. The doctor is sending me for a fasting blood test. Meanwhile a month or so ago , I received my BRAC1 gene result and unfortunately it was positive, so I have been to some counselling sessions. I am advised to have my ovaries out and my other mastectomy, I have been coming here to read on the topic and am at a loss with everything at the moment. 

    I have been back and forth to my dads for the past 4 months whose chemo has failed him.

    I want you to know that I am around and still travelling the journey albeit  I have become very lonely with it.  

    How do I reconnect with this path I have pushed up the table for so many months . The burden is still there even though I have tried to escape it  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    You just did when you posted here.

    It is overwhelmingly likely that the hip pain is a result of the broken leg.  If the rod isn't exactly the perfect fit it will cause pressure on the rest of the leg, and favoring the one leg puts more of a stress on the other leg and the joints associated with it.  It's not like you have a sedentary job either, so that may be part of the equation.

    The surgical recommendations to deal with the BRCA status are just that.  You have had that mutation all along, and it has not suddenly become an emergency situation just because you are aware of it now. 

    Trust your instincts about how to proceed.  They have been accurate in the past.  You will know what to do, it's just a matter of getting your head into the right frame of mind to deal with it.  We all know that you can get through whatever life throws at you.  .  

    Enjoy your vacation.  Put cancer out of your mind and life as much as possible until you get back.  Once you get back, settle in, and everyone has figured out the normal routine for the coming school year, start dealing with the doctors again.

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    I have just caught up with recent posts ...Cathi I am truly sorry you have to endure such a situation, you and Amanda are in my thoughts and prayers. 

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Patmom

     Thanks for the advice. I will take it all on board .

      I am out of acceptance mode where bootface is concerned .

  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Sueps, I have the BRCA2 mutation which I understand is even worse than the BRCA1. Not that it makes much difference in living every day. Good that you are going for counselling. There are many of us with these mutations. If  you haven't already, check out the FORCE website. It is entirely devoted to those with BRCA1 + 2 and there is a lot of good information there. (FORCE stands for Facing Our Risk of Cancer Empowered). Best wishes.

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Thanks hrf

     and thankyou so much for the link , it will be really helpful to me.

     I am going to read it tomorrow night after work as it is almost Midfnight in the UK.

    The pain in my hip is linked to my right ovary area and I have been sick and bloated for about three months  , hence the doc wanting to do a good blood test.

    At least I feel that I have justice for my mum who obviously had the faulty gene when she died of ovarian at 42 , I feel I have been given the chance becuse of the test thats now available x It was not around in the  the 1980s

    xxx 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Sue, I'm glad you came. Much has changed here but what has not changed is the presence of wonderful sisters willing to walk with you. It can be heavy to be with others afflicted with bootface, AND it can be a huge comfort. I don't know squat about the gene, but I do know a lot about Sue. Do what you need to do, come here when it helps. You are blessed to have been born in a time when there can be hope. You have lost innocence but gained power. Whatever the future brings, your sisters will support you and celebrate with you.

    Devin was here last night and we shared a cup of Earl Grey and some digestives he brought from London. I have no idea why we don't have those wonderful bicuits here after all these years! Send me a case!!!

  • dink
    dink Member Posts: 240
    edited August 2010

    Sue, It's great to hear from you.  I'm sorry about your injuries and your BRAC1 mutation.  When I was deciding of whether or not to have this study performed, I looked at my daughter and I looked at my grandaughters.  I also thought of their children they will be having when they become older.  My test came back negative but I decided to take a different look at what this test meant.  The BRAC test is a scarry test especially if it is positive.  The good thing is you know what you may face in the future and you can slowly make the correct decisions on your health.  This study also informs your children and their children on how to take care of themselves. When I receive bad news or negative news, I always try to look at it and think about what is the one good thing I can learn from it or can do with it.  I realize you have alot of concerns.  My DCIS is not near as in depth as your cancer but the good thing was that it was found by mistake due to such a caring surgeon.  The other thing was I knew my daughter would need me around to help her with her children.  I could have taken the tamoifen for five years, kept my breasts with their abnormal and mutating cells or I could have my bilateral mastectomy, live longer without as much worries and see my children grow.  I can contribute to their lives by teaching the importance of knowing their bodies and like Cathi and all of your guys, the importance of family and friends.  Maybe this is God's way of telling us to get back to the basics of life.  I had the blood work done to test for ovarian cancer and it came back positive two times and negative once.  The sonogram was negative for anything other than small oavaries due to my age.  I opted not to have the ovaries removed because the blood tests for oavrian cancer is just a screening because that same test can be elevated due to many other reasons which have nothing to do with cancer.  I also learned through all of this to make the best of the day at had because I can;t change the past and i can't change the future except through educating all the ladies that are in my family.  I love you and you are in my prayers.

    Cathi, We haven't heard anything from you today, where are you and is everyone ok?  Amanda is going to need alot of support but you did the right thing which is you made her make the decision and you allowed her to keep her decision now she needs your support.  By letting her do it herself she will make it.  May God be with you and your family.  Please know we are here

    for you and your family if you need us.  To everyone else.  Hello and Goodnight.

    Judy what exactly does your shirt say? LOL

    Dink

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Leesa, it says "Gonnae NO Dae That". Nettie sent it to me from Scotland via my son Devin. I think the American English equivalent would be "Ain't gonna do that!" or "No Way!" Is that right, Nettie?

    Waiting for news, Cathi...pleeeeeeeeease!

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2010

    Sue glad to see you back here. I didn't do the BRCA test but my mom did after her dx like Dink said, not for her but for her children. Mom's test was negative and my doctor said since her test was negative and no cancers in the brca gene on my dad's side of the family I didn't need to do it. My surgeon though did recommend removing my ovaries after I go into full natural menopause, which I am almost there. I will consider it later on.

    Sheila

  • cloudhowe
    cloudhowe Member Posts: 236
    edited August 2010

    HELLO Sue!

    So happy to see you again.It's just crap  - all this afternath. I am seeing my consultant end  of September for txhe final verdict. Last Herceptrin tomrrrow tho. Nets

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Thankyou Sisters  xxxx

     Ok I have a little question about my situation .....

     The genetist said ( bearing in mind she wasnt a breast doc or nothing)

    "if you have your ovaries out that will reduce your risk of getting b/c again by blah blah (insert stats).."

    IF MY B/C WAS TRIPLE NEGATIVE AND NOT HORMONE RELATED HOW THE HELL DOES SHE COME TO THAT

    Any answers... would be lovely  bcos @ the moment I would like to have my other side done....

    I really thought I would be able to deal with this on behalf of my mum who never had the chance but my head is getting more cabbaged xxxxxx 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    My understanding is that TN is a separate issue that would not affect genetic risk. It is simply the type of tumor you had which is not fed by hormones. The genetic risk is for any type of bc. Frankly, at your age and with your history, I'd go the whole way...mastectomy and ovary removal. Since genetics was not an issue for me, I admit my knowlege is shaky, but nonetheless, I'd go for everything.

    XOXOXOXOXOXOX

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Judie xxxxxxxxxxxx This is the mail I just sent my dad .... great minds think alike.... this is what I am feeling..

    Hi Dad


    Sorry to mail again.

    The test results for this BRCA1 well they have sunk in now and although I am coping I feel really ripped up inside. I thought I would be OKish, why does nothing ever hit me until days/weeks after.

    This is what I am worried about : the genetist who I saw said ... I have a 60% chance of getting ovarian cancer and 90 % chance of getting another breast cancer.

    Well statistics dont matter too much, but I do have to take into account for the sake of myself and everyone.

    She went on to say " if you have your ovaries out, it will lower your chances of getting breast cancer again" now this ISNT the case with me, if my breast cancer was not growing from hormones then how can having my ovaries out protect me from another hormone negative breast cancer. I AM GOING TO SEEK AN ANSWER TO THIS.

    So given what I know and knowing that I want to avoid at all costs another breast cancer AND chemo AND risk then I am now leaning heavily to having another mastectomy. I know I cant live with the thought of anything occuring but I can live with the pain and the relief of removing almost all the risk. Its just having the courage to go ahead and do it.

    Ok so this is what I need to do I think.

    So right now , I am worried about , the blood test result , the testing of my ovaries when they are removed , but more than anything I am worried about this hip pain. UGGGH.

    So why am I emailing . Well , I don't want to talk about it because it is fedding me up to the back teeth. And I need to let you know where I am up to in my head, because you will never know if right now I dont want to talk about it.

    So , I get a blood test on Friday , go on holiday pretty much soon after (going to book somewhere tomorrow) come back , get blood test results , and actually of they come back ok , then my hip pain worry will reduce dramatically. Depending on whether when I have rested my hip pain goes or not the doctor wants to send me for a bone scan IF IT IS STILL THERE. It is not a painful hip pain , it is a squeezystabby deep pain.

    This is where I am up to on this in my head. Back to square one. With time and that I may feel better I am sure.

    Will speak before I go away.

  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Sue, as you know, people with BRCA1, have a very strong chance of getting ovarian cancer which is why it is wise to have ovaries and tubes removed. I don't know about it prevening another breast cancer but I (am BRCA2) had my first bc as a TN. I did have my ovaries removed but not my breasts. Then I got a second bc in my other breast and it was ES+/PR+    If I had removed my breasts at the time of the first bc, there was a 90% less chance of getting the second. Everyone is different but that is my story.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited August 2010

    Sue, I was going to say sort of what hrf just did. You could get a different KIND of breast cancer for the second one.....

    You will be in my thoughts as you work out all this crap. God Bless!

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    Oh thankyou sisters , this means a lot to me.

     I am definitely getting my ovaries out asap. 

    And yes too right it could be any type of breast cancer for the gene defect, so there goes the other breast , simples.... that is the answer in my head and in my heart. Not bothered about the look....I just cant hack the pain Yell  but for as long as it is given the chance to rear its ugliness it will forever mash my head every day for the rest of my life... 

    Now just to pluck the courage.... I do the ovaries first and get the hip investigated ...

    and thank the lord I have the blessing to choose xxxx

    HELP XxX 

  • sueps
    sueps Member Posts: 2,266
    edited August 2010

    BOOTFACE YOU STINK! I AM GOING TO BED AND YOU ARE NOT COMING WITH ME. GET OUTSIDE IN THE DIRTY GUTTER UNTIL THE MORNING WHEN I WILL CALL YOU IN FOR MORE STERN THOUGHTS !

    Sweet dreams girls xx 

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2010

    Sweet dreams Sue, I still love your bootface rants!

    Sheila

  • dink
    dink Member Posts: 240
    edited August 2010

    Sue I will hold you i my prayers.  You are one awesome sister.  You hold your head up and smile from ear to ear.  You so bootface who is stronger.

     Love you,

    Leesa (Dink)

    XOXOXOXOX

    Cathi, are you ok, I saw you on facebook but haven't heard hho everything went with Amanda is sh ok?

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