We’ve all had that experience. Someone hears we have MBC and starts taking about their cousin “Hortense” who has some kind of cancer. Too often, this unthinking person eventually says Hortense died. They just do not get how that hurts us. So, here is what I’ve been doing, with success. When I hear that story start, I politely and jokingly say, “Unless cousin Hortense died in her sleep at age 99 after a first class trip to Hawaii, I don’t think I want to hear the rest of this.” I can almost see the wheels turn in their head as they realize the mistake they were about to make. I then laugh which gives them permission to laugh too. And then we change the subject and talk about pasta or whatever. It’s worked every time. Hope this helps.
What I say when someone starts to tel... - SHARE Metastatic ...
What I say when someone starts to tell me about how they know a person with cancer
42 Replies
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I’ve suffered silently thru such conversations. One was with a friend who is a therapist who was freaking out thinking her relative had cancer and was going to die. What are these people thinking? I have at times asked that they change the conversation. With my friend, I tried to be supportive, but the cost was too high for me. Next time I will simply ask that we change the conversation. I had to take a Xanax after that one.
Yep. Ive had it a couple if times🙄. I think people sometimes just waffle on cos they dont know what to say and its like they're trying to relate to you but if the ending is '....they died' - perrrleeez folks, really? I'm now going to adopt your method and jump in before they get chance. Thanks 👍 x
I’ve had similar...but not always with people dying at the end of the story
Is it some kind of ‘one up manship’ i.e I know someone with worse cancer than you’ sort of thing ..and then they died??
It’s very insensitive and frankly rude
A friend of mine once told me she had had cervical cancer donkeys years ago and is fine...therefore I’ll be fine....she just doesn’t get it!!
Anyway I sort of just try and change the subject and move on
The worst is my next door neighbor who always puts on that ‘look’ and says ‘you poor thing’ and suchlike so I avoid her...ffs there’s other things to talk about
I’ve told my oncologist about her and she advised me to tell this neighbor next time I bump into her..that this upsets me....and I’m going to do it!!
I guess they’re either embarrassed..thick or just insensitive but we should nip it in the bud and put an end to it
We’re more important than their bloody stories and opinions....think I’m starting to rant here!!!
Barb xx
Barb, I agree with you doc about your neighbor. Some, most? People just feel so helpless and awkward, they treat you like a walking corpse. If you give your neighbor a chance, she might pull herself together and drop the funereal greeting. But my therapist friend certainly ought to know better. Not sure what to do there. I avoid her now too. Too damn draining
Yes I cannot be doing with it....so next time I’ll tell her it’s not helpful
Barb xx
When I haven’t seen someone in a while, she or he gets all serious and asks, “How are you?” in a significant way. Mostly I say fine and change the subject. The thing is, before my diagnosis, I used to ask a friend with stage 4 prostate cancer how he was in that same way (he’s still around after 8 years).
I understand that people are trying to convey their concern. But it can be unnerving to be presented with a question that seems to invite a detailed medical accounting of one’s present state.
I realize now my friends dont know what to say. I don't look sick at all. I am overweight, have my own hair, walking around so when they hear I have stage iv, they were like but you look so healthy. I don't bring it up around friends that much anymore. Nobody wants to be around a person who constantly whines about her condition. My friend told me I never know what to say to you and I said you do not have to say anything. When I go to dinner with friends, its the last thing I want to discuss is cancer. They don't get it because they are not going through it. So I give them leeway because I am sure I would be doing the same things if the roles were reversed. They are NOT trying to be cruel.
Hi Martha,
That's a good approach. I have tried to figure out why people have to tell us about those who have died from cancer. They probably don't realise how hurtful it is to hear those kind of stories. I have even had friends describe in minute detail how their father/daughter or whoever died. So I have been left with images of dying cancer patients on their deathbed that I wish I could just erase from my memory. I removed myself from a Facebook group recently because I kept hearing about members who had died, and it seemed like my news feed was turning into some kind of obituary. I am sorry to hear about people dying from cancer, but I find it really hard to deal with. It was hard enough losing my mum to the disease.
Thanks again,
Sophie
I truly am sorry about the stress, etc, that these conversations cause. We each have our sensitivities, myself included, believe me! And I am truly not trying to be contrarian...everyone is different and reacts/experiences things in their own way...but I do want to bring in my point of view, which is different.
I'm keenly interested in how things went for other people, especially those who have died. For the first couple years after being diagnosed, I would often go onto other sites (like bc.org...there seems to be a longer history there, many more posts..) to seek out posts, etc, from people who were in the final stages. Some women posted until literally the day before they died. I wanted to know more and try to understand and anticipate how it all unfolds. Under different scenarios. I found it illuminating and, frankly, extremely comforting. If someone wants to talk to me about Aunt Mable's last months/days, I would welcome it. To learn more, I've thought about volunteering at hospice, e.g., I'm just afraid it would muck with my eligibility for disability (i.e. does volunteering indicate that I could work?).
It's what's hidden and unknown that makes me insane. I know this is probably just me, and I hope I haven't upset anyone with my comments. But I did want to toss out my different perspective.
in reply to
From what I’ve read on Social Security website Re “compassionate allowance” SSDI for MBC, volunteering shouldn’t affect your status.
I can understand your needs to approach it your way. Hang in there
in reply to
Thanks, Marthasvinyard (love your name...AND the place!) for the good info re: SSDI. I also get disability from my previous employer, and this is more strict. I note this only so that others who read this realize that company disability is pretty stringent about this...Thanks!
LisaT23 in reply to
Hi,
it's more the private/ company long term disability that is the problem. They promise a certain percent of your income, then subtract anything you get from anywhere else. They also "check" to see if you are able to do "any type" of work every so many months. If you can sit at a desk for 4 or more hours.
If you are on SSDI you can withdraw money from a 403 account without a early withdrawal charge, just must pay taxes on it, but I am afraid that the long term disability would subtract any withdrawal from what they pay. So even though the money would be helpful, it would hurt in the long term, so it just sits there.
Lisa
kearnan in reply to
If you are stage iv, it is an automatic approval. Once I adjust to this med, I plan on doing some type of volunteer work. I missing working but not the horrible NY commute. And I still have a lot to give back. You can even work while getting SSDI but they have a limit of I think $800 a month.
I’ve had the opposite reaction from people. Yes someone always knows someone who died but most I’ve encountered, including family, go in the opposite direction and tell me how I’ll be fine despite all the statistics and say things like you got this and fight that damn cancer! As if they are cheerleaders. I know I should be grateful but it annoys me and feels as if they don’t take it seriously enough at times. I’m scared. I’m 7 months into a diagnosis that has a prognosis of 2-3 years and although I know that it “could” be much longer I’d like to concentrate on living my life “as if” just in case. By that I mean I want to do things and have fun and laugh a lot. My girlfriends seem to get this most of all but I wish family etc would just concentrate on helping me make a my bucket list instead of just trying to deny that this might happen. I know I’m also contradictory at times because some days I feel I can beat this and am very upbeat and other days I mourn my life. I guess it’s just the roller coaster of emotions that makes whatever someone says wrong depending on my mood that day haha.
I have the same. So many people I speak to seem to have a friend/ relative who has lived with stage 4 cancer for 10 years +.... Don't get me wrong I appreciate they mean well and try to tell me that there is hope but it comes across as dismissive... Effectively it seems most friends/ family/ colleagues can handle any cancer stages below 3 with the support of established data ( 75% survival in 5 years)... Or the other end of the spectrum ( ie: months left to live) with a "it is so sad it always happen to the good people" but most seem to struggle with handling our cases : no immediate death but no cure either... It is a limbo land that most are emotionally incapable of handling..I described it to them quite candidly as being on notice period and the need to get balance right between optimism ( I am not giving up more years that I have to) and realism ( I need to make every moment count).... In your case you should probably take over and tell them what you want to do and what matters to you... If you have a bucket list to go through then they need to know how much it matters to you...
Sometimes our diagnosis of stage iv is harder for the family because they don't understand and are scared for their loved one. I would not ask my family to help me prepare a bucket list. I would just do it myself. Unfortunately, I cannot afford what I would like to do so living in NY, we have loads of concerts and other things that are free and enjoyable. I remember getting so so angry the day I had to go to the cancer center and the young receptionist called me by my name without looking at the paper. I was seething inside because I did not want them to "know me". I realized later in the day that that was my issue, not hers. I had to laugh afterwards bc as I told my friend it threw me for a loop that after going there for a year that she knew my name LOL....
What a great response! Lol
I had to tell my sister, who is a nurse, this very thing. She kept bringing up her 2 friends (who both recently died!) and how well they managed with their cancer, how strong they were, one even attending her daughter's middle school graduation the day before she died! I told her that I love her, but to please stop comparing me to her friends and stop telling me how they died so bravely! She was furious and hasn't spoken to me in weeks except to message me that SHE is going through some stressful life events. Sigh.
Oh I love the competition of who’s more miserable. My mother told me although I had this cancer, her life was much harder than mine. Thanks, Mom. She did have a hard life and she is gone now, but why the hell are you turning this into a competition? It was rough.
in reply to Survivornow
I’m sorry Survivor. I’m sure your sister grieves her friends, but you are here and living now. Isn’t it better for these unthinking folks to honor the living and support them? Doing so also serves to honor the ones who’ve died.
I’m with Nan. It’s not a competition. And unless she’s had a doctor tell her that she herself has a terminal disease, I would hope she could set aside her stress to support you. Ah well. You are wise to recognize how these comments are deflating and to set up boundaries that help your own need for self care. Continue to focus on your well being. Don’t let anyone make you question your need to protect yourself. Good luck.
That's perfect!!!! Thank you.
A Spanish friend, on hearing my news about MBC, immediately launched into the tale of his brother who found a lump in his neck and was dead within the year. Luckily my husband and I were able to see the funny side of this after the event. I tend to steer clear of him now!
in reply to LouisaMay
Hi Louisa,
I do wonder why people feel the need to do this! I have had the same thing happen to me. People do not seem to consider my feelings as they tell me about how their friend or relative died from cancer. Maybe they start off with good intentions and as a sense of camaraderie with me, but it is quite depressing when I hear minute details about the suffering they went through and so on. I have also been compared to other cancer patients and been told I am "fortunate" but I would never equate having metastatic cancer with being fortunate.
Sophie
LouisaMay in reply to
I know, whilst I think of myself as 'fortunate' that I have no symptoms or pain at the moment, it's all bloody relative! xxx
in reply to LouisaMay
Yes, I know what you mean. My oncologist said I was fortunate to not be triple negative. Like you, I also feel fit and healthy, but that does not take away the reality of what's going on, does it? x
LouisaMay in reply to
Quite! Luckily I can usually smile at such astonishing insensitivity. By the way, a propos of nothing, I have found some random Youtube meditations which play music at 528 hz. It's supposed to repair DNA. Well I don't know about that but I can certainly feel some difference, it seems to affect my brain in a good way, so for now I'm not knocking it! Have a good Sunday xxx.
in reply to LouisaMay
I normally smile too, but I caught myself a while ago when a friend was talking to me about ending treatment. I said that others we know have been fortunate to finish treatment, but mine will be ongoing. I don't think she knew what to make of that and she has been careful around me since then. I could have handled it better, but I get so tired of hearing that.
A friend was telling me about tapping. I haven't tried it, but she said it's effective. I might give it a go.
Enjoy your Sunday too x
Mindysooty in reply to
Morning Sophie, my husband does tapping for his anxieties. We were very skeptical at first but weirdly it works - or at least it does for him. X
in reply to Mindysooty
Hi Josie,
That sounds promising! A few of my friends have been trying tapping too.
Sophie ❤
Hi Louisa, would you mind sending me a link to the Youtube meditation you've found. Ive been trying rather unsuccessfully to meditate, just cant seem to switch off. Thanks. X
Hi Mindysooty,
I started off with this one, which is quite short:
youtube.com/watch?v=izKqmDf...
I was amazed how good I felt both during and afterwards so continued doing it each day. Having a voice to focus on helps enormously to relax both body and mind.
This is my current favourite:
youtube.com/watch?v=oA_rY4N...
I find Michael Sealey's voice very soothing. If you go to Youtube and search for healing meditation, there are loads to choose from. Several months on from doing it almost every day, I am definitely calmer and less wired, which I think has to be a good thing health-wise. Also I very much look forward to my relaxing 'me' time. Hope this helps x
Thats really helpful. Thankyou. I'll give it a shot and hopefully it will work as well for me. Best wishes. X
Well I keep trying to listen to the healing meditation - must be working as I fall asleep every time lol. I keep wanting to listen but before I know Im snoozing 😪. Xx
I find that some of the time as well, I tell myself that's a good thing, if I fall asleep I must have needed it. And I always wake up relaxed! xxx
Love it!
You are more patient than me. I just say please let’s change the subject as soon as they start. And I know that they are uncomfortable and don’t know what to say but ....hey. I don’t want to hear about it.
I’ve got one…at my second visit with my Onc for my Faslodex shots the nurse looked at me and said”so, has she told you how much time you have left?” I was so stunned that I did not reply. She then said “well If it’s any consolation, I’ve been giving these shots for a year and a half and none of those ladies have died.” It was the beginning of the end with that Oncology office. I now drive 6 hrs round trip each month to be treated at Duke. When I shared this story with my new Onc as to why I was making a change he was mortified and almost in tears. That’s when I knew I was in a better place. Define your boundaries and let people know when you’re uncomfortable. All the best to you.
in reply to Gingerann1
Holy Crap! I’m furious. Is it too late for me to TP the nurse’s house and key her car!! Grrrr.
I agree with Sandra. Please report her so she is warned to not inflict her stupid cruelty on others.
I’m very sorry.
Thanks Sandra. The last thing anyone needs to hear at any time, let alone after first being diagnosed. That’s what I told my new Onc along with the fact that other patients may not know what bad care they are getting before I bursted into tears. The only time I’ve cried over any of this. I hope you are doing well. Lin
If this makes you angry that was only the tip of the iceberg. After deciding to get a second opinion at Duke I was having my final appt with this group and the Oncologist chastized me at the appt. for upsetting her nurse by calling the office and questioning her about my meds. I was supposed to have started on Ibrance weeks before this but no one was moving forward with getting the necessary approvals from my ins co. I only called and nicely asked if there was anything I could do to help, etc. I felt like I was in the twilight zone but had comfort in knowing in the back of my mind that this was going to be my last visit. My Duke visit was the next day and when I called the “old Onc’s” office to say I was not coming back all they said was “okay, we’ll note it on your chart”. So sad patients can be treated this way. It broke my heart.
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