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I'm 69 years old, 18 years ago I was diagnosed with breast cancer on the right side had a mastectomy, no reconstruction, went on Tamoxifin. Five years later I was diagnosed on the left side and had another mastectomy. 18 months ago I had a hernia repair on my lower left abdomen, breast cancer cells were found in the hernia sack and I went to an oncologist and was put on amrimedex. A month ago my tumor markers were up and I was put on Faslodex which is an injectable (0nce a month) anti estrogen. I talked to my oncologist this morning and it appears it may not be working and I may have to go on Chemo. I am single, still working, and generally enjoying myself. I have a brother 2 nephews and a niece all married. When this latest problem surfaced, my brother told me that I needed to think about getting myself into some type of assisted living because I can't depend on them to take me for appointments (which I would only ask for in the most dire circumstances) because they have their lives to lead. I felt like I was slapped and I don't know what to do because when I go to see the oncologist on 7/7 I would like to have family with me. We get along great as long as they don't have to do anything. As far as neighbors, most are away during the summer. I'm completely lost on this.

Comments

  • COCKERCATZ6-2006Jun19
    COCKERCATZ6-2006Jun19 Member Posts: 6
    edited June 2006

    OH, Just want to add something -- when I do try to discuss my breast cancer with them the stock reactions is "Oh!!! don't talk like that".

  • lizws
    lizws Member Posts: 1,892
    edited June 2006
    Diane.... How sad that your family is treating you that way. Do you have a church group or club that you are involved with. If not, call the American Cancer Society and they will provide you with someone to go with you as well as someone to drive you if necessary. You have fought this before and you will again. I admire your tenacity and hope all works out for you.

    Hugs

    Liz
    ----------------
    ILC Stage 2, Bilateral Mast w/ recon, 4 A/C 4 Taxol Arimidex
  • suzie14
    suzie14 Member Posts: 344
    edited June 2006
    Diane, so sorry your brother is treating you so shabbily... you don't deserve that kind of treatment.

    As Liz suggested, contact the American Cancer Society, it is my understanding that they have volunteers standing in line to help at times like this.

    Keep your chin up, you are indeed a strong lady.

    hugs,
    suzie
  • jgrjunque
    jgrjunque Member Posts: 47
    edited June 2006

    Oh Diane... I am so sorry your brother reacted that way. That must have hurt so badly... Please do call the ACS, and tell them just what your brother said. I suspect you'll have more than enough volunteers to continue to live independently!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2006
    Diane,


    How uncaring and lacking empathy your brothers response was!!!! I am wondering what he can possibly be thinking !

    Like others have told you, both Churches, Volunteers at both hospitals and for the ACS often assist people with transportation getting to and from cancer tx.

    Wishing you luck in both your tx and in finding some "real" empathy and support.

    gentle hugsssssssssssssss
  • cowgirl
    cowgirl Member Posts: 777
    edited June 2006
    Diane,
    So sorry to hear your story. Hopefully ACS can get you some help. I love your independence, and your spunk. I will pray for you during this time of figuring it all out.
  • KariLynn
    KariLynn Member Posts: 1,079
    edited June 2006

    Our hospital also has a van for people who need a ride. Family doesn't have to mean blood, sounds like it's time to create the family you need who will support you and celebrate with you when you kick this.

  • Annie62
    Annie62 Member Posts: 1,081
    edited June 2006
    Diane,
    What a shame your brother is so clueless. This site is fabulous for support and for communicating with people who 'get it'.

    Good luck with your treatment. I hope you find someone (maybe a friend?) who could go to your initial visits with you. I had someone with me for those visits since there was so much info I thought it was good to have 2 sets of ears listening and someone to take notes. Once I started chemo/rads I went on my own.
  • COCKERCATZ6-2006Jun19
    COCKERCATZ6-2006Jun19 Member Posts: 6
    edited June 2006

    I have been going to the oncologist for about 19 years and have always dealt with things myself. I am very independent, own my own home (I've lived here since I was 4 years old). I work 4 days a week as a computer data entry specialist at the local university and care for my 5 cats. Friday, I am going to check out the ACS (I used to be a volunteer)and also my Red Hat chapter. Had a long talk with my boss this morning and she said that if I can't find anyone she would find someone on campus that would do it. As far as my church goes -- it's a strange place -- not warm and friendly and even though I have been a member since birth, I wouldn't feel comfortable asking. But as it stands now, it seems like some one will pop up. My brother should have no trouble "getting it" -- he has had his share of medical problems with a kidney transplant and the associated problems. I know where some of this comes from and it goes back ages. I thought we had it worked out but it doesn't seem so. Thanks for letting me vent -- I feel kind of isolated having no one to talk to.

  • fd411
    fd411 Member Posts: 398
    edited June 2006
    Diane, I'm over in Rochester and a social worker told me to contact Cancer Care. I was given this number, not sure if it's a local affiliation. 1.800.813.4673

    I was told they help out with lots of things and I think they help with transportation.

    I'm sorry that you're brother isn't all that suppportive, but hopefully you'll find a new network of friends to help you along the way.
  • bearlysane111
    bearlysane111 Member Posts: 735
    edited June 2006
    Hi Diane,
    I,too,am very independent and had trouble asking for help w/bc dignosis,treatments,etc. I understand totally how you feel as I have gone alone to all (70 plus) appts since last Aug.I had early stage bc and no chemo. However,it has been stressful.

    Being an only child and single,I had a smaller number of very close friends. I did ask a friend/husb to help w/the biopsy and stayed one night after surgery at their house. The husb is not kind and there are too many issues there so,I am not comfortable being w/them. Also, the wife had bc several yrs ago and is not very supportive.

    Enough of my story,I learned there were resources available at the cancer ctr---counselor there was excellent. Also,ACS and Komen have resources here in my town. I felt so depressed(then) as did my elderly mother who lives 125 mi away. There are so many resources available and hope you have found. I do vol work now for the Komen Organization as I do not want other women going through what I have. I think this is my niche since my retirement. Luckily,I have re-connected w/sev old friends and that has been great. Also,found new friends at Komen.

    My mother had kidney issues yrs ago and I am very familiar w/some people who are not there. I think that some are just scared or perhaps have their own issues. Who knows???

    If ever you feel like communciating,I chat here. Best to you as there are some really good people who correspond. It has been so great to read abt so many neat people and their remarkable stories. We may can offer empathy and compassion to each other and that is helpful for me.


    All the best!!!

    ---------------------

    Iris

    Only the strong survive---Jerry Butler oldie
  • cowgirl
    cowgirl Member Posts: 777
    edited June 2006

    Diane feel free to vent here as you need to! This is a great place for happiness and sadness!

  • COCKERCATZ6-2006Jun19
    COCKERCATZ6-2006Jun19 Member Posts: 6
    edited June 2006

    You guys are the best -- Thanks for your suggestions. Friday when I am off from work I am going to make some phone calls and see what I can turn up. I was a Reach to Recovery volunteer for over 8 years. I stopped when I had too many other things on my plate. Right now I am on Faslodex which is given by injection once a month. I feel so yucky, tired, and achey but that is listed as a side effect. When I talked to my oncologist on Monday she seemed to think that the shot wasn't working -- but I had only taken it once and that was 10 days before I called her. I suggested to her that we wait a month and give it a chance to work before we do anything else. She agreed. I haven't had blood work since I started the shot so we don't know what is happening -- we will do that on the 7th

  • COCKERCATZ6-2006Jun19
    COCKERCATZ6-2006Jun19 Member Posts: 6
    edited June 2006

    Got a call though to the American Cancer Society. They were able to line me up with a ride. The person will call me the night before to get out times straight. Not saying a word to the family. Don't want to give them the ammunition to say sometime when there is a dire emergency "Why can't you call the ACS". What they need to know they will know, What they won't know they don't need to know. And I'm not going anywhere without you guys, you have been great.

  • csp
    csp Member Posts: 2,765
    edited June 2006
    Diane,
    I hope you don't mind but I have been following along on
    your post. I did'nt have info to give you becaues I am a family member, but I wanted to send you a cyber hug


    "my brother told me that I needed to think about getting myself into some type of assisted living because I can't depend on them to take me for appointments (which I would only ask for in the most dire circumstances) because they have their lives to lead."

    When I read that I was so upset, It still amazes me how thoughtless people and family can be! You will meet the most amazingly supportive people here Diane , My sister and I have been here a year now and these wonderful knowledgeable women welcomed us and supported us through one of the scarest times in our lives , so I stay in hopes I can give back some of what was given me.

    If you don't mind I will pop in and say Hi and check on you and give you hugs whenever you need one too.

    Hugs,
    Carrie
  • COCKERCATZ6-2006Jun19
    COCKERCATZ6-2006Jun19 Member Posts: 6
    edited June 2006
    If you don't mind I will pop in and say Hi and check on you and give you hugs whenever you need one too.

    Any time you want too -- I'm going to be here for a long time.
  • cowgirl
    cowgirl Member Posts: 777
    edited June 2006

    Diane we love you being here!

  • Baskervillhound6
    Baskervillhound6 Member Posts: 17
    edited July 2006

    Hi -- I used to be COCKERCATZ6 but for some strange reason I was blocked and I was not longer able to start new topics or post. I forgot my password and send a password request -- got the message that they had send me one but I never got it. I went though all the directions, deleted all my spam controls --every thing. Added the website and the email address to my address book and still nothing. I would really prefer to use the COCKERCATZ6 signature but it seems there is some reason why I can't. Called aol and they said that there was nothing they could do -- it had to be something wrong with the website. Hope this works!!

  • csp
    csp Member Posts: 2,765
    edited July 2006
    Hi Diane!!
    glad to see you back up and running again!

    I have been thinking of you, I have had trouble logging
    in too sometimes.

    The boards shut down a few weeks back and the boards are still a little fritzy sometimes.

    hugs,
    Carrie
  • ginna
    ginna Member Posts: 11
    edited July 2006
    Hi Diane

    Wish I was closer to you.I am in Westchester NY. I would have glady given you a ride and would have went out for a bite to eat and we could talk and talk......If you ever need an ear I am a e mail away......
    ginjonky@aol.com
    Hugs
    Gina
    I am on radiation treatment number 9 out of 33
  • Baskervillhound6
    Baskervillhound6 Member Posts: 17
    edited July 2006
    Wish I was closer to you.I am in Westchester NY. I would have glady given you a ride and would have went out for a bite to eat and we could talk and talk......

    Now that would be fun. I've been in one of the chat rooms and there are a couple of other women who are on Faslodex and having the same problems I am. If I have any place that doesn't hurt, I sure don't know what it is. Yikes I feel like I've been hit by a very large tank.
  • Baskervillhound6
    Baskervillhound6 Member Posts: 17
    edited July 2006

    I went to the dr this afternoon. I was retaining so much fluid that she thought that I might go on chemo immediately. I had to cancel my appointment with the cancer society driver. The guy across the street took me. Dr ran my bloods and the tumor markers have gone down so she decided against chemo for now. Gave me another shot of Faslodex. Tomorrow I have to go to the hospital to have the fluid drained off. Last time I went I did fine so I am going to drive myself this time. Right now I feel like I am 5 mo pregnant. But when the fluid is gone I will feel a ton better.

  • csp
    csp Member Posts: 2,765
    edited July 2006
    oh geez Diane sorry to hear about the water retention
    I do hope it helps relieve the pressure .
    That is very good news about the markers a big WHOO-HOOO
    for that

    keeping you in my thoughts ~~

    Carrie
  • Baskervillhound6
    Baskervillhound6 Member Posts: 17
    edited July 2006

    I drove myself to the hospital and back -- round trip about 25 miles. Had the fluid drained off -- 6 liters. I never though there would be that much. Last time it was a tad over a liter. But I feel a ton better. I'm sleepy but I just had a light lunch and I think after the soreness goes away I'll feel close to normal (for me )

  • cowgirl
    cowgirl Member Posts: 777
    edited July 2006

    wow Diane take care of yourself!

  • csp
    csp Member Posts: 2,765
    edited July 2006
    Hope you feel better Diane after getting rid of all that fluid, and you can have a nice
    weekend .
    I am thinking of you~~

    Carrie

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