• What to do when your family just doesn't want to talk about the Cancer anymore? I need to talk about it.

    Asked by theresarae on Sunday, September 9, 2012

    What to do when your family just doesn't want to talk about the Cancer anymore? I need to talk about it.

    Its only been 4 years since primary diagnosis. I'm constantly scared. should I seek out a support group? What kind?

    15 Answers from the Community

    15 answers
    • JVM491955's Avatar
      JVM491955

      As others have written, joining a breast cancer support group is important as you will be able to share your experience with others that will "get" what you are feeling. As much as our family members love us, they truly cannot relate to what we are feeling and just want us to be the people we were before we had cancer. Unfortunately, as much as a cancer patient would like that also, cancer changes us dramatically and we will never be that person again. (In effect, life becomes a "new normal", just as we become newer versions of ourselves.) Families don't really understand that and get tired of whatever laments we have - not because they don't care but because they don't truly understand the toll cancer takes on our minds, spirits and our bodies. This applies to friends too. I actually had one friend tell me that I should be happy my cancer journey was over and it annoyed me. While I was done with my surgeries and treatment, the emotional pain I felt - and held back to get through the process - started to erupt and I needed to resolve it. The journey was not over and ultimately would not be over for more than 4 years.

      However, I didn't like the group experience, as I did not feel welcomed by the group in the way I needed. This is somewhat ironic, as I have been involved in other group therapeutic experiences and loved it! In fact, in all those experiences the women and I truly connected such that we became lifelong friends after the group ended. But with the cancer support group I was in, I felt like there was a measure of competition between us - a kind of "my diagnosis was/is worse than yours" feeling - and it upset me. Even though my diagnosis was mimimal in comparison with theirs (which I respected tremendously), my experience was equally complicated and was nothing to just merely wave away. In addition to having a lumpectomy, I required 4 weeks of radiation treatment that was severely complicated by fibromyalgia (such that the fatigue normally felt at the end for most, was felt at the beginning for me) and then, 8 months later, I required a complete hysterectomy and oophrectomy (ovaries were removed, as was everything else) because my cancer originated from my ovaries from a hormonal perspective (I was estrogen dominant) and the use of drugs to prevent a recurrence would have actually caused one. I went to two sessions only and never returned.

      This was my experience but I don't want to deter you from going to a group because they are enormously beneficial. But there has to be positive energy/chemistry in the dynamic and the therapist has to be someone you also can connect with.

      What honestly worked for me? Sloan Kettering in NY provides free therapy for cancer patients with specially trained therapists that are well versed in the reactions all cancer patients have. I went to see this young woman for more than a year and she truly helped me to validate my feelings. I wasn't crazy. I wasn't wrong for my feelings, as they were normal within the context of the illness. I also did a lot of journaling, and because I am also an artist, I did illustrations about my feelings, including those I did not share with my family. Once I was able to do that, I came out of the fire and can finally say - now at almost the 5 year mark - that I am happy.

      Best wishes to you.

      over 8 years ago
    • Queen_Tatiana's Avatar
      Queen_Tatiana

      I encourage you to find a support group or a counselor you can talk to. Somewhere for you to feel you are being heard and understood. Family is hard to keep in the loop as they get so caught up in your being "cancer free" or in remission of some sort they tend to equate that will your being cured, which we know is not true. My husband does not really depend on them for support other than keeping them up to date on what is happening with him and he does this by sending out an email every couple of weeks or so explaining what is happening now. He's been handling it all this way for 8 years now. It is hard to articulate the role of family for us as we have only one son in the area, and no one else anywhere nearby us. Our son, 29, is completely supportive, but he doesn't want to talk about cancer all the time and he does get frustrated at the constant sickness. I guess all this rambling is to tell you I have no advice for you except that a cancer related support group or private therapy is a good path to follow.

      over 8 years ago
    • Donnaakins' Avatar
      Donnaakins

      Throughout our lives events will occur that will forever change us. Some of the events are happy, such as, "Congratulations on your degree! I knew you could do it!"
      "I love you. Will you marry me?"
      "I got the promotion! We are moving to Kalamazoo!"
      "I'm pregnant. It's twins!"

      Other events are on the opposite spectrum and bring us deep sadness.

      "I don't know how to tell you this, but your brother was killed in a car accident."
      "I think it's time we got a divorce."
      "Mother was diagnosed with Alzheimer's today."

      And the reason most of us are on WhatNext:
      "Donna, the results are back. You have aggressive metastatic breast cancer. We must start treatment immediately."

      Far too many of us are living with those words, realizing how they forever changed our lives. A previous responder saddened me by what sounded like a dismissive response to the question on this thread: "Is there any chance of reoccurrence? It sounds like your family made the decision to move on with their lives."

      WHAT? REALLY? How wonderful for them. While they are moving on with their lives we are dealing with the aftermath of a disease that ravaged our body, treatments that attacked the cancer but damaged other vital organs, side effects that will never go away, and bodies we don't recognize. In the process of our battle we lost an an innocence, a sense of invincibility, carefreeness, superiority, that will likely never return. As if that weren't enough, we lost our families because they chose to "make the decision of continuing their lives," instead of offering us love and compassion when we need it most.

      You ask if there is a chance of reoccurrence. Of course there is a chance of reoccurrence! Why do you think we have to be tested so frequently? Do you have any idea how scary it is lying on a cold metal table with nothing but a hospital gown on as machines clank around you, taking pictures, seeking out cancer? Do you know how much it would help us to have you holding our hands as we wait to hear the results from the doctor?

      I know I sound bitter and angry, but what I really am is hurt - not just for me, but my brothers and sisters who have also lost their families. My experiences with family are sadly, not unusual. Six weeks following double mastectomies, removal of fourteen lymphnodes and complete reconstruction, I was told I didn't have cancer anymore and needed to stop using it as an excuse. Other comments were, I needed to quit playing the victim, and my "favorite" of all, "You have destroyed our family over the last three years."

      Sorry for going off on my rant. First, it just saddens me that at a time when you need them most, your family is gone. Second, people within our "support" don't understand. Third, and most important, YOUR FAMILY IS NOT UNUSUAL! MAKE A NEW FAMILY OF PEOPLE WHO WILL LOVE YOU THROUGH IT BECAUSE THERE ARE MANY PEOPLE WHO CARE!

      Hugs from Alabama,
      Donna

      almost 5 years ago

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