Hello. I think I'm in over my head. (Mother with breast cancer)

picturegrl
picturegrl Member Posts: 1
edited May 2013 in Caregivers #1

Hello, everyone. I am a 39-year-old writer, photographer and editor, and my mother has just been diagnosed for the second time with breast cancer. I am an only child.

The first time, it was ductal carcinoma in situ. She had a mastectomy and reconstruction (which had a lot of complications and didn't turn out well). No chemo or further treatment was necessary. She didn't go back for checkups or a mammogram for three years, because my grandfather died and she was caring for my grandmother with dementia.

I had moved home, but after she was better, I took a job in another state and am now 250 miles away. 

She had a biopsy last Friday and we learned Monday that she has a very aggressive breast cancer that has spread to her lymph nodes. They don't know how extensively. They will begin chemo ASAP. [EDIT: They're saying it is Stage III, Grade 3 metaplastic cancer]

She can't tell me anything about it as to type, etc. All she knows is it is grade 3 and though the tumor itself is small, the cancer is spreading fast. I'm driving myself crazy reading things, trying to figure out what kind she has. I'm not hearing anything about a PET scan or anything but chemo.

I will find all this out when I go home. She is overwhelmed and fearful and probably not asking the doctor. 

Here's the thing: I want to go home. NOW. And I am angry at almost everyone I know. 

I had told my boss on the Friday of her biopsy that I may have to go home for a while, assuming it would be another DCIS. He said we'd cross that bridge later and suggested that I am not responsible for her care. (What if I WANT to care for her??? What if I love her and WANT to be there???)

He was out of town when I learned the news. I wrote a blog post saying I intended to walk this journey with her and he sent a text saying, "This is b.s. We talked about this before I left."

I asked him to call me, to talk to me, and he told me to do whatever I want. In the past week while he was gone, he has not communicated with me again. (I am his number 2. He talked to coworkers by phone all week.)

Not a single coworker has said they are sorry. One said her father has brain cancer and has two weeks to live and at least my mother isn't dying. (What? I don't know if she is or isn't. Since when did a parent with cancer become a contest as to who gets to hurt the most?)

One asked how she was, then when I started to tell her cut me off and said, "God, you're so dramatic."

A superior told me he had a building full of problems and didn't have time for mine. (I was just calling to say I had thought I would have to be off work but would be coming in anyway, but he cut me off before I could say that.)

A friend sent me a picture of a friend who died of lung cancer. He didn't warn me or anything. Suddenly it just appeared on my screen — a skeletal man lying on a couch with a bucket beside him. I can't shake that image from my head. Why send it? How did that help me? He said good people die of cancer all the time. (This makes it ok?)

People have told me I shouldn't give up my life, there are people who can be hired to care for her. People have told me there are people worse off than she is, as if that gives me no right to be sad or scared or angry. 

I was told at work that they are not sure if I qualify for Family Medical Leave. My friends keep telling me to cool my heels about leaving and wait until she is sicker. (And what shall I tell her? "Hey, when you're too sick to care if I'm there, I'll come take care of you!")

I do have the complication that I have some serious health issues, though what is more serious than cancer? I have early-stage COPD, with uncontrolled asthma and severe obstructive sleep apnea. I spent most of January and February in the hospital, despite taking daily medicines that would cost $2,000 without health insurance. With insurance, they're around $300. I have an oxygen concentrator and a CPAP, neither of which I can go without. 

A leave of absence (if I even get it) is only good for three months. What then? I can't take care of my mother if I am always sick, too. And she will end up taking care of me.

I am already stressed and overwhelmed. I just want to move home and begin this journey. But from a practical standpoint, not much is going to be accomplished if I become very sick, too. My employers do not seem open to allowing me to come and go as needed. 

All I do is cry, and I have no real support network. All my mother does is cry, and all she has is me and my stepfather, who is great but not emotionally equipped to be helpful to her and is squeamish around needles, blood, wounds, etc.

I'm sorry this was so long. I am just so torn and I am already sick of the insensitive things people say. I just love her, you know? I don't think I need to apologize or ask permission to want to care for my mother because I love her. 

Thank you for listening to me. I will try to make future sagas shorter. I am glad to find this group. 

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    breathing

    PG, I'm sorry to hear about your mother.  I know you are worried about her.

    What does your mother say about you coming home at this time?  Is your stepfather able to go to appointments with her, take notes, ask questions, etc., in spite of being nervous about the situation?  Is it possible for you to make some phone calls to your mom's doctor, assuming she is willing to give them permission to talk with you?

    I'm not saying you shouldn't go and I understand how emotional this is.  You've just missed a lot of work for your own health and if your stepfather is with your mom, you leaving right away might not be the best thing.

    Talk with your mom - you need more facts so you can make a competent and logical decision about what to do next.

    Stop and think - as emotional as this makes you, as an adult child you have the responsibility of keeping your own life going and doing what is best for you mom.

    You have a lot of questions that need to be answered.

    Come back and let us know what you find out.

  • Christine135
    Christine135 Member Posts: 71
    Stop and take a breath

    Hi picturegrl-

    Never aoplogize for writing a long post as this is what this site is for. It is to vent, scream, yell-what ever you need to do to release your feelings, you can do it here. Remember, we are all here for a reason so we share your need to vent so again, never apologize. 

    Your situation is a difficult one and there is no right or wrong answer but think things through. It sounds like this is a step by step process so the first suggestion would be to ask your mom to speak to her medical team if you don't have permission to do so. Talk to them and hear it Hopefully your mom would have no objections to you talking to her medical team and once you hear from them what the situation is with her since she was just diagnosed, then you can take the next step.

    I am really sorry to hear your employer is not being supportive so what about checking out possible jobs closer to your mom? Your step-dad is there now with her so she is not alone which I know is of little comfort to you being so far away but it can be an oppportunity for your world in order. Sadly, people do not know how to react to others who have a loved one with cancer, I have gone through that since my husband has been diagnosed for the 2nd time with esophagel cancer. My advice is don't talk to them about what is happening now, work on what you need to do to get closer to your mom and then tell them of your plans.

    You need to..and I know this is easier said than done..but you need to think of your health first for as you said if you get sick, then you will be no good to your mom. Right now your main concern is you and you need to get your affairs in order. I think once you talk to the doctors you will have a better idea what is going on. Don't assume until you hear it from them what is going on and what the plan is.

    Its ok to be angry and you have every right to be but don't let the picture your friend sent you or what others have said rock you. You feel the way you feel and you are perfectly within your right. She is your mom and you wanting to be there for her is natural but when you feel as angry as you do, stop and take a breath. Lord knows I have had to do that a few times in order not to lose my mind. This will all work out as far as you getting to your mom even though right now it seems impossible.

    Hang in there and check out your options closer to your mom. You will find something whether it is in your field or not. As soon as you can find that, everything else will fall into place but remember..take care of yourself..you don't want to wind up back in the hospital.

    Stay strong..you CAN do this..you have to believe in yourself and do not worry about others.

    Christine   

  • mzlisaj
    mzlisaj Member Posts: 14
    Similar Situation

    I am my moms only child as well, so I totally understand you wanting to be there.  I am so sorry your faced with all these adversities, but remember we only get one mom.  

     

    Lisa