what to say to my mom...still

Gizzy
Gizzy Member Posts: 12
edited March 2014 in Breast Cancer #1
hello, it's been a long road. My mom went for her first lumpectomy on Nov 24, we were called back to Albuquerque we live 135 miles away; the next day for news that the Dr did not get all the cancer. My mom had a lumpectomy again on Dec 15...and a chemo port put in on Dec 16 and yet again we were called to drive 135 miles again the next day for the Dr to tell my mom the cancer is still there embedded and the dr's main option was to remove the breast entirely with a 98% chance of all the cancer being gone or not doing anything and sending her to chemo and the other meds with a 50/50 chance that it would work 20% maybe ...our lives have been a mess since Dec 19. I can't possibly feel what she is feeling, I only feel what I feel, disgust and hate that this has happened and why the Dr did not get it all and since we live so far away....I can't cope with my family, and I don't know what to say to my mom. She cries and asks why me. I have lost total faith in everything. I talk to her and tell her that she needs to get her mind set on being well. I have a 7 yr old boy and he loves her so much. My mom lives with us and that boy of mine adores her. Right now too, I am hard to live with as I can't believe all this is happening because I really feel in my heart that my mom can not handle chemo. She is not used to being ill and with every positive things the ladies at our cancer center have told her, she still comes back with the negative, and she has that right. I am just out of words, out of emotions, and have cried so many tears, for my mom for me for my family because our world has turned upside down again. Since my dad passed away in 2006, my mom hasn't been herself and we've all tried to help, but she will not help herself, and now this...somehow I feel it's my fault for not being able to handle a job, my family my son and myself. I should be able to have enough patience for everyone. She will have her mastectomy on Jan 5, and she is scared to death. The port they put in with those steri strips have caused burns on her skin and I had to take her to our hospital emergency room and it was a nightmare. I wish I could get my mom to write and maybe get her feelings out. I'm afraid for her and I can't show it.
Thank you for listening.

Cynthia

Comments

  • zahalene
    zahalene Member Posts: 670
    Oh, Cynthia
    I am so very, very sorry that this has gone on and on as you describe.
    I do think though that the mastectomy will be a step in a more positive direction for your mother. Knowing she has a much better chance of being cancer free will give all of you more hope, and you will find that she is stronger than either you or she ever suspected if she has to go on chemo.
    I know these seem like empty words right now, but if you read posts of others of all ages and stages who have undergone treatment so many of them will say 'I never thought I could do it, but I did!'.
    I am as concerned about you as I am about your mother. You MUST have help. You are expecting way too much of yourself, as caregivers so often do, and you need to find ways to attend to yourself so you can be there for your mom. Coming here to vent is a step in the right direction but I hope you can tap into support resources where you are, such as other family, friends, neighbors.
    God bless and keep us up to date please.
  • KathiM
    KathiM Member Posts: 8,028 Member
    My mom had breast cancer, too...
    (BTW, I say, "Thanks, mom for the genetics...lol...my daughter says this to me, too...mammography at 30, colonoscopy then, too)

    She said "Hey, I don't use these things any more, I DON'T want to have chemo if I don't have to....take the thing off!"

    That was over 10 years ago, and she is doing fine. She took Tamoxifen for 5 years, but that is it....no reoccurance....

    I'm sorry your mom is having this challenge, dear Cynthia, but attitude is the biggest deciding factor, I believe. This was my second cancer in 6 months, the first being rectal cancer where I was given 6 months to live...that was 4 years ago. When 6 months came, and I was finished with my treatment, they said "Well, now that you survived that (!), we'll start on the breast cancer treatment." I said "Hey, I just beat the odds once (being part of 37%), with odds of 97% survival on this cancer...this will be just fine!"

    I am sending my warm hugs to you, dear soul, as part of mom's caregiver team. You guys are the unsung heros, having to hear everything the doctors say (we, as patients, are 'spared' some stuff), having to bone up on the lingo (what the HECK is a lymph node?), and smile as you are told by we warriors "You don't understand, you don't have cancer!!!!".

    Hugs, Kathi

    BTW, I am allergic to steri-strips, surgical tape, and Aloe Vera. Make sure they use cloth or paper tape on your mom from now on...I always carry my 'laundry list' of stuff in my wallet...If necessary, I just pull it out and give it to my treating doctor...I'm usually rewarded with a red 'allergies' band AND a pretty blue one that says "DO NOT USE THIS ARM!" for my 'special' side (lymph nodes were involved)...but, that's ok...better safe than sorry.
  • Chellebug
    Chellebug Member Posts: 133
    Hi Cynthia,
    First let me say

    Hi Cynthia,

    First let me say that I LOVE your name. My mother's name is Cynthia.

    Sometimes it's comforting to hear that other people have walked the same path. My circumstances were very similar to your moms. I had two lumpectomies. Both had unclear margins. My surgeon wanted to do another lumpectomy, but I told her that I didn't have the strength to hear her say 'unclear margins' one more time. As is probably the case with your mom, they had removed the invasive cancer with the first lumpectomy, but there were DCIS that kept popping up around my margins. I was convinced that my entire breast was filled with these DCIS's. So, I opted for a mastectomy and I do not regret that decision.

    I had a reaction to the adhesive glue they used to keep the steri-strips over my port incision. I didn't notice it right away, but about a week after the surgery, my skin was raised and red and itched like crazy. I thought for sure I'd have a have a huge scar from where the irritation was....but the only scar I have there now is the incision scar. It would be a good idea for your mom to ask the nurses to use paper tape on her infusion days.

    You are an incredible daughter, Cynthia. Your heart is so big and your love for your mom is so evident. In order to care for your mom, you're going to need to take care of yourself. Get some support from friends, family, neighbors, church so that you don't have to worry about the day to day. You certainly can't do it all. It sounds like you want to be present with your mom as much as possible, but you can't do that if you have to also always focus on dinner, cleaning, laundry. It's a wonderful idea to have some meals brought to you, so that you don't have to add that to your list of to-do's. If someone asks if they can help, say 'yes, we could use some meals!' They will be blessed by being a blessing to you.

    You can't be all things to everyone. You've got to be able to express your feelings and fears. Do you have a friend that you can lean on during this time? Maybe, writing things down in a journal......You need some kind of outlet to let your feelings out. This discussion board is a good place, but I encourage you to also find a friend that you can sit with and be real with.

    Praying for you and your mom,
    Chelle
  • cabbott
    cabbott Member Posts: 1,039 Member
    Hang in there!
    Dear Cynthia,

    There is such a learning curve when we are first diagnosed with cancer! One thing to know is that it is very common for doctors not to get all the cancer on the first operation. When the lump is big enough to feel on the outside, you can see it on the inside too. But invasive cancer sends out tendrils that literally invade the tissue surrounding it. Sometimes these tendrils are just a cell or two wide. The surgeon can see the lump, but not individual cells, with his eyes. They try to get clean margins by taking a bit of normal looking tissue clear around the spot of cancer. They mark the lump a special way to designate the top, sides, and bottom and send it to the pathologist to double-check. Many times the pathologist spots little cancer cells on one side or another of the lump of tissue. When that happens, the surgeon usually goes in again to get clean margins. If a second (or sometimes a third) lumpectomy won't get it all, a mastectomy is usually done. Getting clean margins is very important in the fight against cancer. It really does extend life and reduce reoccurance when you get clean margins.

    I had early stage cancer in at least two spots in my right breast. Because I was built small and couldn't go for the second lumpectomy to get clean margins in both spots, I had a mastectomy. That was 6 years ago. I'm doing fine now though I was a basketcase at the time! I chose to get a prosthesis, but many women have an implant or a tissue transplant done at the same time as the mastectomy. This is a great board to ask questions and get answers from folks that have been there.

    By the way, I'm allergic to clear tape adhesive too. Even for simple tests I ask for paper tape or silk tape. They can't use the stuff that looks clear adhesive tape on me for even 5 minutes or my skin turns bright red, swells and itches like crazy! The "burn" mark lasts for days afterward.

    There are lots of things your mom can do to recover from surgery quickly and get ready for chemo treatment. Just ask and the folks here will be glad to help.

    C. Abbott
  • gemsa
    gemsa Member Posts: 22
    I just wanted to add that
    I just wanted to add that what your mother is feeling is completely normal. In the beginning it is really difficult to stay positive, no matter what anyone tells you. None of us were used to being ill, I don't think it is something anyone gets used to. I'm not sure any of us thought we could handle chemo until we had to just do it. Your mom just might surprise you with how strong she becomes through all this.

    Maybe you could just offer to listen to her fears, tell her you are afraid for her, get it all out in the open. Then you'll hopefully be able to move on from there.
  • sausageroll
    sausageroll Member Posts: 415
    gemsa said:

    I just wanted to add that
    I just wanted to add that what your mother is feeling is completely normal. In the beginning it is really difficult to stay positive, no matter what anyone tells you. None of us were used to being ill, I don't think it is something anyone gets used to. I'm not sure any of us thought we could handle chemo until we had to just do it. Your mom just might surprise you with how strong she becomes through all this.

    Maybe you could just offer to listen to her fears, tell her you are afraid for her, get it all out in the open. Then you'll hopefully be able to move on from there.

    Thinking of you
    Cynthia, I really feel for you(and your Mum of course) I have only recently been diagnosed and am ready for my second chemo infusion...however I went through 2 cancers with my husband and fully believe that it is so much harder for the caregiver than for the patient. You need to take care of yourself and find friends to confide in and talk to us here. Chemo is hard, but maybe your Mum can find a group at the hospital or somewhere nearby where she can unload and not feel like she is complaining.
    Take care and keep in touch with us.
  • Gizzy
    Gizzy Member Posts: 12
    cabbott said:

    Hang in there!
    Dear Cynthia,

    There is such a learning curve when we are first diagnosed with cancer! One thing to know is that it is very common for doctors not to get all the cancer on the first operation. When the lump is big enough to feel on the outside, you can see it on the inside too. But invasive cancer sends out tendrils that literally invade the tissue surrounding it. Sometimes these tendrils are just a cell or two wide. The surgeon can see the lump, but not individual cells, with his eyes. They try to get clean margins by taking a bit of normal looking tissue clear around the spot of cancer. They mark the lump a special way to designate the top, sides, and bottom and send it to the pathologist to double-check. Many times the pathologist spots little cancer cells on one side or another of the lump of tissue. When that happens, the surgeon usually goes in again to get clean margins. If a second (or sometimes a third) lumpectomy won't get it all, a mastectomy is usually done. Getting clean margins is very important in the fight against cancer. It really does extend life and reduce reoccurance when you get clean margins.

    I had early stage cancer in at least two spots in my right breast. Because I was built small and couldn't go for the second lumpectomy to get clean margins in both spots, I had a mastectomy. That was 6 years ago. I'm doing fine now though I was a basketcase at the time! I chose to get a prosthesis, but many women have an implant or a tissue transplant done at the same time as the mastectomy. This is a great board to ask questions and get answers from folks that have been there.

    By the way, I'm allergic to clear tape adhesive too. Even for simple tests I ask for paper tape or silk tape. They can't use the stuff that looks clear adhesive tape on me for even 5 minutes or my skin turns bright red, swells and itches like crazy! The "burn" mark lasts for days afterward.

    There are lots of things your mom can do to recover from surgery quickly and get ready for chemo treatment. Just ask and the folks here will be glad to help.

    C. Abbott

    update
    Hi,
    Thanks for all your help. It's been hectic and I haven't gotten a chance to send you all an update. My mom will have the one side removed on Jan 5, 2009. She will have Chemo and a drug called herceptin. We don't know how big of a dose of treatment yet. She has her port in already.

    One step at a time and it's hurry up and wait. That's the worst part. You can't jump ahead and ask questions because you don't know what will come up.

    I will keep you updated. Thank you for your help and concern.

    God Bless

    Cynthia
  • mmontero38
    mmontero38 Member Posts: 1,510
    Gizzy said:

    update
    Hi,
    Thanks for all your help. It's been hectic and I haven't gotten a chance to send you all an update. My mom will have the one side removed on Jan 5, 2009. She will have Chemo and a drug called herceptin. We don't know how big of a dose of treatment yet. She has her port in already.

    One step at a time and it's hurry up and wait. That's the worst part. You can't jump ahead and ask questions because you don't know what will come up.

    I will keep you updated. Thank you for your help and concern.

    God Bless

    Cynthia

    Thanks Cynthia for keeping
    Thanks Cynthia for keeping us updated. The wait is the worst but once things start rolling they will roll. I hope all the best for your mom and for you as caregivers are our angels and suffer along with us. Best of luck, Lili