Can't Talk About Cancer With Family and Friends Anymore?
We asked the I Had Cancer Community "Does anyone else feel like they can’t discuss cancer with family & friends anymore?" How do you talk about cancer with family and friends? What are some things you shouldn't say? Here are some of the community's responses:
Yasmeem: It’s hard because I’m an advocate as well, but sometimes I just want to turn it off. Grief over and over again is extremely hard. Not helping the cancer community is also hard. Balance, I’ve yet to find that even after nearly 10 years.
Korena: It varies. I share my story to help others understand that even though we seem to be fine after cancer, we aren’t necessarily the same person. We have more fatigue, fears, anxiety, and overall struggles mental and physical. I’ve decided to help be a voice for those that fear being judged. If I can help one person, whether it’s a support person, cancer warrior, or someone just generally struggling; then it’s worth sharing my story.
Mel: OMG Yes! It clearly makes people uncomfortable. People also don’t want their mood to be brought down by the negativity that is cancer treatment. While they get to post about living their lives to the fullest, all we have to post or share is “negative shit” like sitting for hours at the cancer center. It’s so frustrating. Like “I’m sorry my 11 bone marrow biopsies and 12 spinal taps aren’t as cool as your stories of traveling and going to restaurants.”
Michele: Sometimes I feel like I don’t want to talk or hear about it anymore. Sometimes I don’t want to say what I’m going through because I don’t want people to think that’s all I have to talk about. Sometimes I feel like talking about it will make my cancer define me. Sometimes even with support, I feel alone because I just CAN’T talk about it.
Marlene: Some people don’t have the capacity to understand unless they walk the path firsthand. Even though we may have been fortunate enough to get to the other side of cancer treatments, we have to go to the hospital for checkups for the rest of our lives. It’s a scary, albeit necessary, reality.
Noelle: No one wants to hear me. They think because I survived that I’m over it. I’ll never be over it, but I keep my feelings and after-effects to myself. Shame on them.
Karen: I’m 2 years out from my last treatment, but I take a maintenance pill that gives me all the same side effects. My friends & family think I should be all better and “back to normal” now. I can barely get through a workday and have horrible fatigue if I do anything.
Karen: People avoid uncomfortable topics of conversation. It’s a shame. When my brother died by suicide, people never wanted to talk about it. If you have a loved one affected by a tragedy of any kind, the WORST THING you can do is pretend it didn’t exist!!
Charlene: 12 years ago when I was first diagnosed with cancer, my own mother hushed me for discussing it at a family gathering. I never spoke about it again except in support groups, and even then only spoke briefly.
Ellen: Yes and no. I’ve been very open about my cancer journey and used CaringBridge to keep friends & family informed. I’ve appreciated all the love and support I’ve received, but I’m so tired of the discussion being about me all the time. I actively try to switch the subject once we get past the ‘how are you doing’ questions.
Virginia: I share with my support group so as to not worry my family.
Ashley: When a TV Show, Movie, or even a commercial mentions the word cancer, it’s like everyone wants us to ignore the topic and change the channel. They want to block my cancer out of their memories. But we as cancer survivors can't do that. It’s a day-to-day struggle. I will never reach “remission” as the race type of cancer I had has a high chance of recurring. I was sentenced to a lifetime of scans every six months, and they don’t even want to speak the word cancer at all. That’s a very, very hard pill to swallow.
Lori: I’m a 30+ year survivor and have never been able to talk about it, especially not to my family. Once I was officially in remission, I was supposed to “get over it”, “move on with my life” and “not dwell in the past.” I was only 19 years old! Quite tragic really. I’m 53 now and am discovering through therapy just how much damage all the unprocessed trauma has done to me.
Tracy: After 2+ years of treatments and surgeries, cancer seemed to be all I had to talk about. Those were the most vivid memories that I had to share with family & friends.
Mavis: I didn’t tell my kids until after it was over. I look back now and realize just how hard that was to bear. Smiling so that others wouldn’t be scared. I’d do it all over again if it comforted my loved ones.
Nicole: I don’t think our families understand the mental triggers we have now, or the things that we wish we could have in life but don’t. They only think of the positive of “Oh, you’re alive!” Which is great, but some days we still need a hug or more love. My kids and my husband told me that I changed after cancer. It was like 1 day I woke up and I was different. It’s hard to hear those things, but I’m glad they were open with me.
Amy: I’m 12 years in remission from ovarian cancer this month. My family has always stated that my cancer “wasn’t that bad” since I didn’t need chemo. What they didn’t realize was that the mass was the size of a basketball, I still had to take radiation meds, and the surgery took so many of my organs. I lost all my reproductive organs, over a foot of my large intestine, my gallbladder, and more. My family doesn’t even acknowledge my canverversary. They don’t understand that my cancer is still there, I’m just in remission currently thanks to an amazing surgeon. Cancer changes you physically, mentally, and even financially. They even have the nerve to ask why I’m not as financially far along as they are!
Megan: One side of my family didn’t want me to talk about my cancer, and now I don’t talk to them. Don’t make me feel shame because I have cancer and I want to talk about it in my supposed safe space.
Troy: We shared a lot of our daughter’s battle with brain cancer for the first year, and then increasingly less afterward. Once a family deals with the initial trauma of the situation, things slowly improve with time. We were very grateful for the people who supported us at the time. Now, I just talk to my daughter about her extra difficulties in life, but it isn’t something we dwell on.
Tina: There is no discussion of cancer with my family.
Jennifer: When it comes to anything that has to do with my brain cancer, my mother feels like a suffering victim while I pretended everything was fine. In the hospital after surgery, I would look at the clock during visiting time and try to look well to help her. My best friend doesn’t like to talk about the subject for very long. She considers it heavy but still supports me and celebrates when I bring good news after my routine MRIs. Others simply can’t understand.
JoAnne: Absolutely! My family feels like “Oh that story again…” but yet not one family member really asks me about my cancer or seems to care anymore.
Kelly: I’ve survived 9 years with Mantle Cell Lymphoma, with 1 Stage II recurrence. I’ve done virtually every appointment and treatment by myself. People who haven’t spoken to me/never came to see me will say “I thought you were sick?” Yeah, that conversation is over, they just wouldn’t understand. My inner circle is so small, it’s almost a dot.
Lisa: Yes! They feel like chemo/radiation is over, I’m in remission, and I must be done with cancer! Nope. Only after cancer is when the work fully begins, the healing process.
Jeannine: I had uterine cancer in 2015 with multiple surgeries, including one that led to a near-death experience. When I finally felt like I could talk about it with a close family member, she said “but your cancer wasn’t that bad and you didn’t die.” She completely dismissed both my cancer experience and what was a deeply spiritual experience for me.
Renée: For both of my cancer diagnoses, I didn’t discuss anything with my family. “People get sick all the time with life-threatening diseases.” They just don’t get it.
Tara: When active treatment is complete, it’s over for them. It’s never really over for us.
Erin: Yes! I get told to “get over it already, you’re in remission” or I have my family members start sobbing about this “horrible thing” happening to me. I have to be so selective in what I share with my family and friends as I feel that I scare people when I mention what cancer was really like. My family hates the term Toxic Positivity but I will keep asking them to stop telling me to “stay positive” and all that stuff.
Shena: I watched my tribe dwindle over time. I lost a friend of 20 years. I had what should be my last breast cancer-related surgery in January, and I can say that there’s not a single person finishing this journey with me who was at the starting line in October 2020.
Mary: I was declared NED in February 2021. I then went through 6 months of immunotherapy which caused major side effects. I’m an anal cancer survivor and received a lot of radiation which left me with permanent physical side effects. Because I’m NED, everyone thinks cancer is DONE. Some of my closest friends even seem “annoyed” if I speak of my cancer or my journey, and are incredibly insensitive. It’s definitely eye-opening.
Renée: I’m in year 5 of breast cancer survivorship and no one wants to talk about it. They act like cancer is completely in the past. I feel like I have to pretend that I don’t have any feelings about it anymore. I even say “when I had cancer” to talk about that time in my life. I’ve always felt like no one understood me.
Carolyn: My husband and daughters (9 and 11 years old at the time) tried to support me as best as they could. But I felt like I was in quarantine. They would sometimes say “leave mommy alone, she’s sick.” It was very isolating. I always had to downplay how serious my situation was to make everyone feel better. “It’s ok, we have a treatment plan. I feel good.” In reality, I was terrified and didn’t want anyone to know the truth.
Deanna: I was told by one of my children that I was a narcissist and that it wasn’t all about me. I haven’t seen them since my last chemotherapy. I’m lucky to have people in my life who are still supportive.
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