A breast cancer support group might be good for you. No one understands what you're going through like someone who has walked in your shoes. With your closest family members, you might try telling them outright that you could really use their support right now, and talk about your feelings.
Breast Cancer Questions
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?
16 Answers from the Community
I understand your feeling. After I finished treatment, it was "over" for everyone else but even two years later, it isn't for me. I'm still suffering from the side effects, the physical effects, and the emotional scars. I also find my family just doesn't want to acknowledge it anymore. Perhaps it's their way of just wanting it to "go away". But YOU need someone to talk to so I advise speaking to a friend who's also a survivor, a support group, or one of us! :)
Hey there; I hope today is a better day.
I get the feeling that some of my friends and family are tired of cancer... so I just come here for some support! I am not a member of any support group, so WhatNext will have to do!
I really would recommend joining a group if there's one in your area. I think they can be pretty helpful!
This is a great question... I just got off the phone with my cousin Ellen who is one person I know I can talk to about the cancer when no one else wants. to. Support groups can be great, but even if you find one person who can listen without judgement and compassion, you will feel validated and so much better. Journaling helps as well.....
my family doesn't want to talk about it either and my husband who is the person with the cancer, out right refuses to talk about it. He is tired of hearing about he says. I joined this group and communicate with some of these members, as well as I have a few select friends who will talk to me, and a have a therapist. so, definitely find yourself some support, be it a group or whatever you need.
There isn't a support group for my type of cancer in the area, so I asked for a Stephen minister.
From their website: "Stephen ministry is a program for training and organizing laypeople to provide one-to-one Christian care to hurting people in and around a congregation. Stephen Leaders match each Stephen Minister to a person in need of care. Each Stephen Minister meets with his or her care receiver for about an hour a week to provide one-to-one, Christ-centered care and support.
Stephen Ministers care for people inside and outside the congregation, including those experiencing grief, divorce, job loss, terminal illness, loneliness, spiritual crisis, hospitalization, relocation, and other life difficulties. Men are matched with men, women with women. Caring relationships last for as long as the person needs this level of care."
Both of the churches we attend have Stephen ministers, but you don't have to be in a congregation to ask for one. I had one years ago when our son was in trouble with the law. It's someone to talk to who isn't really involved in the situation, so you can say things that you wouldn't say to spouse or other person which may cause more stress.
I love going to my cancer support group. Family and friends tire quickly about cancer issues. They don't understand that fears and side effects do linger. I too need to talk about these issues. I hear frequently you are alive, be thankful for that, think positive. When I go to support group, there is always someone there going through what you are expericing and providing suggestions. You feel validated.
Hi theresarae - I agree with FreeBird - a support group will definitely help you. I also write a daily blog to help others through this journey and address the issues of fear and anxiety in some of my articles and newsletters. Let me know if you'd like the web address. I'd love to help support you through this if I can. Sending hugs.
Many oncologists are now realizing that we go through what is similar to PTSD, when we are confronted with treatment, fears and tests etc, on a daily basis. However, my oncologist told me to take up meditation, without referring me to anyone. Oncs don't necessarily have a handle on how to help in anything but cancer. In our cancer center, we have psychologists to talk to, but we also have classes in yoga, meditation, getting back to a new normal, etc. Check and see if your local hospital or cancer center has these types of classes, and by all means, get a support group for breast cancer (not the general cancer support group). They can help you talk through your fears and commiserate as well as give you ideas to try and keep your mind occupied with other things...
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.
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.
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,