• Why do I get so little support?

    Asked by Lisa1220 on Monday, November 18, 2013

    Why do I get so little support?

    18 Answers from the Community

    18 answers
    • JeanB's Avatar
      JeanB

      I am so sorry you feel this way. What kind of support? Here on the board or at home??? I don't have liver cancer so I can't really answer any questions, but I can send you positive thoughts and prayers. (((HUGS)))

      over 7 years ago
    • Lisa1220's Avatar
      Lisa1220

      JeanB, Thank you for writing. I am new to this board, so I hope that I am responding to you correctly. I was referring to no support at home. I am unable to discuss how I feel. I truly appreciate your kind words however.

      over 7 years ago
    • JeanB's Avatar
      JeanB

      Yes, you answered correctly. Welcome to WhatNext....there are truly some amazing people here, who are willing to help. Do you live alone, or is your family just not supporting you? Talk to the hospital where you are getting treatment, and they will put you in touch with a social worker. They have many resources, but sometimes you have to be that squeaky wheel. It does get better. I know it doesn't seem like it right now, but it does.

      over 7 years ago
    • RachaelC@StF's Avatar
      RachaelC@StF Community Outreach Coordinator 317-528-7794

      Hi Lisa1220,
      JeanB recommended checking in with your hospital to find a social worker. When you check in with them, ask about any support groups they might have. Sometimes it helps to talk with others who have been through or are going through what you are. Is there a Gilda's Club or Cancer Support Community near you? They offer all sorts of programming that might benefit you and your family.
      Also, sometimes the best way to get what you need is to ask. Have you asked your family why they don't support you? Maybe they don't know what you need or don't know how to make that initial step, so they do nothing at all. If you at least speak up, you will know if it is something the can be changed or if you truly do need to seek support from this site and other places/individuals.
      I hope things get better for you. Sending hugs your way!
      Rachael

      over 7 years ago
    • geekling's Avatar
      geekling

      Sometimes one needs to ask for help and sometimes help comes from the most unexpected of places.

      We know the problem so what you need to articulate is how you want to attack it and with whose help and how you will make a battle plan.

      My gf Dr. Leslie lived 4 years+ after her prognosis expiration term limit in great health and having good fun and reopening a clinic to do good work. She used "alternative" methods as there was no medical intervention available to her. Her tumor shrunk by over 50% and simply stopped growing. There was no conventional medical intervention as we know it except, to the end of the fourth year when she submitted to a biopsy in the hope of finding a new type of chemotherapy. She submitted to the wrong surgeon who nicked the tumor and sent cancer spreading itself throughout her body.

      I tell you this not to bring you down but to explain that there are all sorts of ways to get help and support. She found her temporary salvation with a group of weirdos and a Vitamix machine. Within two months her energy had returned and the tumor had shrunk a lot. She did not ever stop looking for her magic bullet in between helping others, camping with her son, skiing, traveling and running her new clinic after she'd been fired from her medical group for being sick.

      What, exactly, is it that you need?

      Good luck in your search.

      over 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      Please immediately let your oncologist know that you need a social worker, your hospital should have them. A social worker should be able to put you in touch with a cancer support group in your community. Being here on WhatNext is a great place to start, but it is better to see people in person and only other cancer patients really get it! Maybe you aren't getting enough support from your family and friends? That is awful but it happens, please let them know that you need more help. Ask for it. Demand it. If you need practical help, try to get one family member or friend to organize a group to help with driving to and from medical appointments or running errands. House work, you probably need help with that as well. I was tremendously independent until I got cancer, all of a sudden I had to start asking my friends for help. It was so surprising because some lifelong friends just couldn't take it and disappeared....but other people came through with so much love and support! You just don't know who your friend are until you go through cancer. Good luck and blessings! xoxoxoxoxo

      over 7 years ago
    • netra's Avatar
      netra

      Hi Lisa, Sometimes family is scared and they don't know what to do. I felt the same way too and then we had a big blow up and everything changed. Those involved did step up to help. Lucky because I was close to falling apart at that point. I hope this doesn't happen with you, it is just my experience and it was hard. I felt bad that I had to put my family through it after just loosing my brother to cancer 4 months previous to my diagnosis. This site was a blessing to me and is where I could talk about things my family had no idea what to say or do.

      over 7 years ago
    • cam32505's Avatar
      cam32505

      Your family is in shock and disbelief. It takes time to adjust to having cancer yourself, and your loved ones also need time. When I was first diagnosed, right before Mother's Day, my son didn't even give me a card or wish me a Happy Mother's Day. I was so hurt. Even when I started treatment, he just didn't believe that I was sick. He was on Facebook complaining to his friends what a burden I was to him, even though he hadn't taken me for any treatments yet. Well, as chemo progressed, I got sicker and needed his help. I called him at work to tell him I needed a ride to the hospital because I was too sick to drive myself. He was really shook up, but he finally saw that I was really sick and did need his help. So, your family will come around. Just let them know that you need them, and what you need from each of them. Most of the time, they don't know what to do, so let them know.

      over 7 years ago
    • Lisa1220's Avatar
      Lisa1220

      Thank you to all who gave me feedback. Even though I have been living with this diagnosis for over a year, it is still extremely difficult for me to discuss. I do appreciate the kindness from those who have reached out on this site.

      over 7 years ago
    • Charlieb's Avatar
      Charlieb

      Hi Lisa1220. Are you talking about family who lives with you or just family in general? Are any of your family members involved in your treatment? I would recommend bring someone with you when you visit your doctor and let them become part of discussions you have with your doctor. Like people have said on this board, family members just don't know what to do. Once someone gets involved in your care it should become easier to talk with them.

      over 7 years ago
    • Darryl1's Avatar
      Darryl1

      I am caregiver to my husband,I am his only support.I think family is to afraid or don't know what to do.Ive stopped asking them for help because when I did they were to busy.I found that I get more help and support through the church even though I haven't been able to go to much.they bring meals and help with housework if needed,even a shoulder to cry on,on the days that are stressful for me.That is who helps me,not family or friends

      over 7 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Lisa1220, you say it's difficult for you to discuss. I wonder if that's why your family doesn't want to talk about cancer, for fear of upsetting you. You may need to tell them exactly what would make you feel better, and try to be more open with them. Best wishes.

      over 7 years ago
    • Lisa1220's Avatar
      Lisa1220

      I have only told two people about this: my husband and my best friend. My friend has been a great support and comes to the dr. appts. with me and asks intelligent questions. Also, she drives me to treatment after I come to her house (the hospital is close to her house whereas it is about 1-1/2 hours from my house). My husband asks the same questions gets angry with me easily, seems to think I can get "cured" and wants to know how I got the tumors in my liver. He wants to put blame on me as he has done with regard to other matters for many years. When I said I get little support, it was really that my husband knows the situation and still gets angry at petty things and does things he knows upsets me. It is very depressing. I suppose it was more of a rhetorical question since I know people do not change.

      over 7 years ago
    • itsjustme736's Avatar
      itsjustme736

      What do you need support in?

      over 7 years ago
    • Lisa1220's Avatar
      Lisa1220

      I need support by having someone listen to me and not tell me "don't cry". I usually hold everything all my feelings in since nobody really wants to hear me.

      over 7 years ago
    • dmholt1957's Avatar
      dmholt1957

      Lisa1220, I am so sorry that you feel that you don't get the support you need at home and from your family. A good support system is what helps us get thru it. You need to tell your family you need to talk about this and let them know exactly how you are feeling even if they hesitate. They are afraid just like you but it isn't healthy to hold it in and like I said they need to hear how you feel, if you are scared or anxious, it can give them the opportunity maybe to open up you. I will pray for you, that you get the support you need and deserve. If you can't get it at home please find a good support group close to you because it does help to talk to others that are or have been thru what you are going thru. We all are here to help you in any way that we can. You can cry, laugh, vent or whatever you feel like doing here because we all understand exactly how you are feeling. I am sending you a huge HUG and praying for you! God bless.

      over 7 years ago
    • Lisa1220's Avatar
      Lisa1220

      Thank you so much dmholt1957

      over 7 years ago
    • LydiasSloMo's Avatar
      LydiasSloMo

      My husband has late stages of liver cancer. I am his only caregiver. I don't get much help but I find that I'm almost fine with that. I'm not working so all I do is take care of him and it gives me comfort that I can do that for him, make him feel loved, and keep him as comfortable as possible. My husband and I are living day to day and enjoying what little bit we can ..... in fact, we are closer now than we have EVER been and that makes it a little easier. I don't know how close we are to the end and I suppose that's when I will need help the most. I don't think I really answered the question, I think I just needed to get this out there. I do know that there are numerous support groups out there if you have no close family or friends, you just have to look for them. Good luck to all of you and I hope your journey isnt too unpleasant, if that is possible.

      over 7 years ago

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