• Help Help. I need advise on dealing with what i am feeling right now. Please read and give any advise you have. This might be a long post

    Asked by sbmontgomery on Monday, October 8, 2012

    Help Help. I need advise on dealing with what i am feeling right now. Please read and give any advise you have. This might be a long post

    Grade 2 Astrcytoma July 3 2012. Finished Chemo and Rad about 2 wks ago. Feel worse than ever. Have dr. app. Tues. Feel like I'm losing hope that anything is going to make me better. Fell about a wk ago and hit my head. Had MRI and they said everything was fine. I saw the MRI and it looks like nothing changed since they found it the first time. How long will it take to see if anything is working. Will it get small, get big, or stay the same. My temper is bad. I have 4 children, 22yr daughter who cares for me and now seems to resent me for being sick. She yells at everyone and takes out her anger on my 12yr son, 10yr daughter, and 4 yr son. I yelled at her this morning like I never have before. Its been building up for so long it all came out at once. She gave up fall semester at college to help me. I do feel bad that she can't go to school or get a job right now. I try to keep things inside to protect my kids. Yesterday was the worst. My husband had to help me off the toilet 1st time

    17 Answers from the Community

    17 answers
    • Queen_Tatiana's Avatar

      I am so sorry you are going through all of this. In regard to your daughter it sounds like she is projecting a lot of frustration, at her caregiving responsibilities, onto her siblings. Serving you as your caregiver, I can tell you she needs to have an outside activity with friends to help her keep some space in her life to herself. Whether she has a regular coffee date with a friend or she takes a 'fun' class at the college she needs a place she can go that is just about her. from what you are describing it sounds like she is overwhelmed and feeling resentful, not so much about your getting sick, but more about the fact that she doesn't feel she has a life of her own anymore. I speak of what I know, as I stopped working and took on the 24/7 care of my mother for 3 years and by the end I had for a complete breakdown. I had no friends, no life, and my husbands cancer returned. Therapy helped me and getting out and reconnecting to the outside world helped me. I am 100% better today and my mom and I are back to a healthy, happy, loving, respectful relationship. Looking back there is so much I would change with the most important being not giving up my entire life. A caregiver must take time for themselves and care for themselves or they cannot care for another in the way they need caring--with love and respect. I am keeping you all in my thoughts.

      almost 9 years ago
    • ticklingcancer's Avatar

      Chemo is rough. It does horrible things to your body. I pretty much stayed in bed a solid week following my treatment. I think the only time I got out of bed was to use the bathroom. Honestly, I think what your daughter is doing is "normal". I say normal with quotes because I don't think she's angry in the true sense of the word. Seeing a parent sick is really difficult for a child of any age. I think she is scared, worried and extremely stressed out. If she's angry, it's most likely due to the situation and no one in particular. But she needs to understand that she can't take it out on everyone around her. I'm sure you feel like you have no control over anything. You should sit her down, just the two of you, and explain to her that you understand how she feels and she needs to recognize that she's making an already stressful situation even more stressful. I don't think she resents you for being sick. I just don' think she knows how to handle the amount of stress she is under. As far as the chemo or radiation working, everyone is different. You mentioned that you saw the MRI and it doesn't look like anything has changed. I wouldn;t worry too much about that unless you've been trained to read an MRI scan....lol. I've looked at my scans quite a few times and I still can't figure out where my tumor was. I hope things get better and I hope you start to feel better soon.

      almost 9 years ago
    • sbmontgomery's Avatar

      Thank you for responding. She does go out with her best friend several times a week and every Saturday. Out to eat, workout, or just to play Pokemon (she is a league master at a game store). It's just when she is home. Since she is home and can't really get a job we were going to hire a cleaning lady but told her if she wan't the job we would pay her to do the job of cleaning and she took it. We pay her every two weeks but all she does now is yell at the younger kids to do it for her and she want's use to pay her.

      almost 9 years ago
    • FreeBird's Avatar

      Hello sbmontgomery! I wish I had easy answers to make you feel better, and solve your health problems. The best I can say is take a deep breath, and take one day at a time. Focusing your mind on everything at once, or looking too far into the future, and thinking about everything that could go wrong is overwhelming. There is still a lot that could go right too, as long as there is life and the possibility for change. It's hard to see that when you feel miserable and weak. Set small goals for each day that you can work towards, and check them off. Don't worry about daughter being there for you. Daughter has thousands of schools to choose from for the rest of her life, but only one mom who she obviously loves. 22 years old is still very young to deal with all of those emotions, seeing mama sick, and learning about herself. It's a lot for her, and she seems to be coping with it poorly. There's that saying that goes, "Life is what happens to you while you're busy making other plans." So, we have to take it as it comes and adjust as we go.

      Don't keep things inside. Let it out, and deal with all of these things that are bothering you. Daughter gets her temper from mom, so you understand each other. Don't forget to tell her that you love her. It's nice to say it and hear it, even though it's understood. She probably bottles up a lot of her own feelings and expresses it through her anger also. You might all sit together and have a family talk.

      Make sure she's taking care of her self also. Your husband can help give her a break and let her go out to do something she enjoys, at a time that's reserved just for her-- no siblings to worry about, nothing.

      You are all bigger than anything that can happen to the cells of your body, or anything that can happen to you in life. Best wishes to you and your family. Get back to feeling stronger soon!

      almost 9 years ago
    • Peroll's Avatar

      You need to be aware that chemo can and does cause chemical changes in your body and brain that can cause depression. Chemo can affect seratonin levels which can be directly responsible for depressdion, I know personally that it happens. At your Dr appointment tomorow you need to talk to your Dr about this as the chemical causes of depreswsion can easliy be treated with medication. This should help with the anger levels you have been having. You may also want to have your daughter evelauated for depression as the stress of caring for a cancer patient can also cause depression as my wife can attest and again medicatiion can help that. I also urge you and your whole family to get some counseling to help your situation out. The American Cancer Society in Houston or your clinic/hospital should be able to help you find a counsler that has dealt with cancer patients before.

      I also see tht you are concerned that nothign has changed in your MRI. Tomorrow at your appointment you need to ask your Doctor to expalin the MRI results to you in detail in a manner that you can understand. Have him point out the tumor(s) and explain how the treatments have affected them. you need to be aware that if the chemo or radiation has killed them they may not get smaller but they may now be a lump of dead cancer cells that can do no more harm. Thus they may not look any different on an MRI to you. Also the fact taht the tumor(s) are getting no bigger is a good sign in its self as cancer likes to grow. You need to ask you doctor how fast your cancer would grow if left untreated. My cancer, untreated weould normally double in size every 12 weeks and is considered a relatively slow growing cancer, thus no visual change to your MRI may in fact be a big victory for you. Just be sure that your Doctor takes the time to explain to you what is going on and what is next. If he can't or won't explain it to you then you may need to look for a second opinion and you might try the M. D. Anderson cancer senter looking for a doctor that specializes not only in your cancer type but in patient care research too.

      Cancer is a real rollercoaster typoe ride with lots of ups and downs, my wife and I have experienced lots of them. I realize that sometimes the fight seems unwinnable but it is not. yuou can beat this and your family can get through this. It takers the will to fight and beat it and the knowledge that it can be beaten. The people here are all rooting for you. If you need anything from us just ask. You can dio this. Good luck!!!!!!

      almost 9 years ago
    • Lindy's Avatar

      The grade is good news, much hopeful research, the diagnosis is understandably frightening, the chemo as others have noted is an illness unto itself. You are under enormous physical and mental duress, your daughter is your daughter as well as a caregiver. Her two hats are in conflict, she wants everyone on board when no one knows what that scenario is or how it best serves you and the family. Wow. I have a hole in my wall, it is my only outburst for my own situation. I am not going to repair it until I find a copy of a favorite article on doctor/patient communication to put in that hole. As a family you all must find ways to handle the affect of your becoming a mom/patient, the hurting love that wisps among you. Being open and sharing the journey is important. Wish I had magic words. Lindy

      almost 9 years ago
    • SunnyCloud's Avatar

      Your cancer center should have a social worker who can help you find resources that can help you and your family on this journey. My social worker spoke to my baby girl and that seemed to have helped her to deal with what we were going through. Also, dont keep it in..talk to your kids and husband about how you feel. I also encouraged my daughter to talk. Good luck and God bless you and yours. xoxox

      almost 9 years ago
    • carm's Avatar

      Hello, I am an oncology/end of life nurse and maybe I could help. Astrocytomas are a serious tumor. It affects the supporting cells of the brain. It sounds like your treatment was successful and as you said there is no sign of new growth in your scan. In malignancies, AA's and GBMs are the mother of all tumors, and as a patient, that can be very overwhelming. From time of diagnosis to treatment the time moves so fast and you rarely have time to take a breath, let alone let the situation sink in. You put your emotions on hold, slip into the ride and buckle in. Now when the first part, the surgery is over, all those emotions you have suppressed are coming to the forefront. If it is hard for you to keep your emotions in check, can you imagine the thoughts your children have considered during this ordeal? It is no wonder that it is volitile right now, but have faith that this will calm after a bit. You need to address the situation with your children by letting them know all the thoughts that were in your head, you were scared, worried, yet still tried to maintain your role as their caregiver or parent, a lot to jumble. You ask them how were they feeling during the ordeal? Were they feeling the same as you? You knew you were in competent hands, but the disease has affected everyones life and you want to acknowledge that to them. You DO recognize the strain it has put on everyone including yourself. Sometimes asking them their input and opinions make them feel that they are a vital factor that influences your decision making process. Help them to understand that while you are mending, there will be times when you might need their help, but each day makes you stronger and they are your motivation. Tell them that if you rant off the cuff, forgive you, sometimes emotions get the best of us, but love never changes, that is the mainstay they must remember. You need their help to get life back to some sense of normalcy and that might not be what it was before, but whatever it becomes will be a decision you will all create together. Best of luck, Carm.

      almost 9 years ago
    • geekling's Avatar

      Your family needs counseling. It isn't fair of you to take out your pains on others just as it isn't fair of your daughter to take out her frustrations on others, just as it isn't fair for her to be the only one asked to pitch in. Your 12 year old can help a little to give her respite. There are, most likely, low or no cost options for her to also get a break if your doctor will write a proper prescription and/or if you look around to local charities. I also do not think it is fair to have her completely give up her studies and her friends. Mostly though, it isn't fair for you to be telling all this to strangers without apologizing to your daughter for your misplaced anger. Families are to help and support each other rather than to take each other for granted, aren't they? Stop being so frightened. You are the mother lioness, remember? You simply have a terrible thorn in your head and just need to breathe until it works itself out. You have enlisted baboons (the doctors) with thumbs to to do the trick of pulling that nasty thorn out. It sometimes helps a great deal to break things down to the ridiculous. Take deep breaths. Deepest sorries for your woes.

      almost 9 years ago
    • Crash's Avatar

      If you have a church let them know what you're going through. Call your County Office and find out what resources are available to you. Your hospital has a Social Service Co-coordinator, call that person and get whatever help you can. Do it now.

      almost 9 years ago
    • Blue's Avatar

      Is your husband at home too? A 12, 10 and 4 year old could be a big strain on your 22-year old, who probably has concerns about getting her education now mixed with the sad emotions of her mother's illness., This is a delicate time in her life so she 's probably feeling overwhelmed with the feeling of possibly losing you. Are there any cancer support groups who could spell her until your own strength returns?

      almost 9 years ago
    • jenpwrs' Avatar

      I am so sorry. I have been there. I've had cancer for nine years-6 years on chemo along with multiple extensive surgeries, starting at age 26. Your daughter isn't angry at you. She's likely scared and upset. She's very worried and probably feels the stress of new responsibilities as well. Interestingly, I was in a similar situation to hers. When I was 18, my mother was diagnosed with breast cancer. Instead of going off to college, I stayed home with her and went to a local university. Your daughter will never regret her decision. I hate to assume anything about someone I don't know, but I have no doubts about this.
      It took me years to do this, but I finally saw a wonderful doctor who spent a year explaining to me why I would benefit from an antidepressant. You don't say if you are taking one. Looking back, I don't know why I was so against it. Cancer is a traumatic experience, and it's not one that lasts for a day. It's there everyday. This triggers the flight or fight response. You know how if you nearly have an accident while driving, you stay anxious for several minutes afterward? Cancer does this, but never stops. Your brain literally becomes stuck. The antidepressant relieves this.
      When I was diagnosed, my husband and I had been married only 3 years. It is so very painful to turn into a patient. I still feel like I'm not a partner and that I don't pull my weight. I guess we have to accept that our husbands love us and don't see it the way we do.

      almost 9 years ago
    • sbmontgomery's Avatar

      I am going to see a doctor who does group therapy with others in my situation. I am being taken off steroids the week and also been given a stronger axiety pill to help me. My dr. has put me on bed rest for a week because of the swelling in my feet, my physical weakness and balance problems. I feel two weeks ago and hit my head. She wants my on rest to let me heal and get the steroids out of my system. She was going to put me on six cycles of chemo but wants to wait until I am physically ready to deal with the side effects. She said the sometimes patients get the really bad side effects of treatment when they finish treatment. So with the new meds and the reduction of other meds we will see what happens at the end of the month. I see her again on Oct. 29.

      almost 9 years ago
    • Shoeless' Avatar

      Cancer and chemo are hard on the nerves, not only for the patient, but also for the caregiver and anyone else in the household. A family therapist can help everyone deal with the fear, uncertainty and emotions. Talk to your minister. If you don't have one, join a church. Faith can and does help.

      almost 9 years ago
    • Karen315's Avatar

      Hi sbmontgomery. I ended my chemo for brain cancer about two years ago, and I felt a lot of the same things. After my radiation (5x week, 6 weeks), the size of my tumor did not change size and I was crazily upset. The doctors told me (and what I figured out later) that 1. A lot of the tumor was still visible but it was dead and no longer growing. 2. The radiation (and chemo) keeps affecting you body for a while after you stop treatment, so the tumor could stay the same size, or it could decrease. If the size increases, thats when there is a problem and they will have to address it again. Also, the extended effects could keep you feeling bad for a while longer - this may be your toughest time. My radiation effects were the worst. During the weeks before and after the treatment I had serious depression and had to be taken to the hospital again, and an antidepressant really helped (and I still take it). I hate to say that I am not 100% better, but I would say I am 90% better with the depression, body/speech coordination, fatigue, etc. I wish the same (or better!) for you , and keep telling yourself that you'll get through this and you WILL feel better .

      almost 9 years ago
    • Judit's Avatar

      Wow! you really have your hands full! You and your family need emotional support. If you have a Gilda/s Club nearby, run to it. I'm sure your time is tight with all your reponsibilities, but for your mental health, and that of your family, find support groups. There are peope near you who have gone thru what you are dealing with and there are others who have been where your family is. No one else understands. I hope you find help soon. Our Gilda's Club closed & we joined the ACS & are now known as HopeClub. Call your ACS for info re support systems in your area.

      almost 9 years ago
    • seededmelon's Avatar

      I am so sorry that this is a time of being overwhelmed. I am 42y mom, single...my 21y old gave up fall quarter last year to come home (diag. 6/2011). It was good for both of us. She helped with my then 14y son.

      I can tell you that I improved after being away from side effects of chemo and radiation, however it was about 6-9 months after. Once I left treatment due to toxicity (chemo), I ended up starting chemo again on a different schedule 7 months later. My tumor is inoperable and had changed over the 7 months I did not take chemo.

      I have found that each day brings different challenges. Somedays it's vision, or balance or speech or a combination of things.

      Best wishes,

      almost 9 years ago

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