What should I say?

Speech BubbleYesterday I posted the video “Dumb Stuff People Say to People With Metastatic Breast Cancer” from I Hate Breast Cancer on the Telling Knots, the 30% Facebook page. An interesting conversation followed. Saoul from Italy wrote:

“…not everybody is able to convey love through their actions or words. I, for example, am not. It’s not that I don’t care. It’s just that I’m not good with words. I am a little better with actions, but still, not the best “love-conveyer” ever. When my friend Laura was diagnosed with metastatic cancer, I just asked her what she wanted me to do. We had the kind of relationship where I was always making fun of her and she of me. She asked me to go on being the usual jerk I always was because she needed to laugh more than ever. She and I had been friends for ages, so asking her was only natural. The point is… What when someone you’re not that familiar with tells you? What if a colleague tells you? What if a new friend tells you? That’s where I’m lost for words. What can I do?”

That’s a great question, Saoul. Thank you for being brave enough to ask it (and for giving me permission to quote it here). I’ll try to respond in a general way.

I guess my first thought is that you and Laura are a great example. If you already have a relationship with someone who then becomes ill with metastatic cancer, then just keep being their friend. I still tease my friends and they still tease me. I haven’t become some sort of porcelain doll.

Some people fall away when we become sick. They become afraid or challenged or deeply worried  or even very, very embarrassed and lost for words, so they just stop coming around. Please try not to do that. It’s okay to say, “I don’t know what to say”. It’s more than okay just to sit with a person and “be present” to them. (If “being present” sounds strange and mystical, you might want to look at this blog post from Katie O’Connor at the Sane Girl’s Guide.)

Ask questions. The first one should be “Is it okay for me to ask you some questions about this?” Not everyone feels like answering questions all the time. Especially if your friend is newly diagnosed, he or she may still be coming to terms with all the information. In this case, Google can be your friend, but google wisely. Go to medical sites or national/local cancer association sites as a first stop.

Take your cue from your friend. If they seem willing to talk about their disease, their treatment, their life, their death… go ahead. But take care of yourself, too. If you start to feel overwhelmed, go ahead and tell them, “That’s too much for me right now. I know that you are the one with the disease, but I don’t want to lose you and I am terribly sad. Can we talk more about this another time?”

I guess the golden thread through all of this is Be yourself and be honest.

If the person who is ill is a work colleague or more casual acquaintance, a simple “I was terribly sorry to hear about your illness” is thoughtful and kind and no more is required. If they are interested in more, they’ll let you know.

The person with metastatic cancer does not have any more social rights than anyone else. We do not have the right to make you feel uncomfortable intentionally.  We do not have the right to make undue demands on your time, energy or emotions. Emergency service providers (police, ambulance, fire) and first aiders are taught to take care of themselves first (helmet, gas mask, safe environment, whatever is called for) so they can be free to help the victims. The rescuer can’t help you if she is trapped under a falling building. If you want to be a good friend to us, please take care of yourself first.

As the person who is living with metastatic disease, I’m a bit at a disadvantage in discussing this. I’d love to hear from some of our “fearless friends”, relatives and care givers on this question.

Thanks again, Saoul, for asking.

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33 Responses

  1. katherinembc says:

    I think every situation is different and that we’ve all probably been caught off guard and said something reflexsively that in retrospect we wish we hadn’t. Sometimes all you can say is “I don’t know what to say,” or “I’m sorry this is happening to you.” I also think setting plays a role…my friend, a busy mom, was leaving one son’s basketball game to rush off to the other son’s. Another mom buttonholed her in the bleachers and started asking involved medical questions. It was great that the other mom was concerned, but that wasn’t the best place or time for that conversation.
    I liked this Kvetching Order article: http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

    • Knot Telling says:

      Thank you for the link!

      Yes, time and place are crucial. I forgot to mention that, so I’m glad you did.

      Thanks for reading and commenting, Katherine.

  2. Thank you for helping me grow. 🙂

  3. Lisa says:

    I think you said it best. Just be there. Keep being a friend. The thing that hurts the most is losing relationships to silence.

  4. Agnes Prigent says:

    As usual, you’ve said it all. Great paper!

    When my father had his cancer in 1978-1979, he lost friends who were scared as if cancer was a taboo, contagious disease.
    On the other hand, he developed close friendship with former acquaintances who were able to be helpful but not “invading”, silent but not mute, listening but not just hearing, exchanging about anything but not talktative.

    But my dad was a fantastic patient: as you said, he did not feel like having more rights than anyone else. He was immensely respectful of others.

    Now, I’d also say to you, patients: “Don’t expect too much from people, but please help them help you: accept help. Don’t be overly proud.”

    • Knot Telling says:

      Thank you, Agnes. You put it so well: “helpful but not invading, silent but not mute, listening but not just hearing, exchanging… but not talkative”.

      Thanks, too for the important reminder. I have a terrible time asking for help and accepting it when offered. I’ll try to do better.

  5. mariaratliff says:

    I remember the most important thing my sister-in-law told me during her year-long battle with brain cancer…just be honest. As stated, if you don’t know what to say, then no words are needed. If you are scared, then admit it b/c the cancer victim surely is! If you have questions, then ask. She wanted (& needed) the same loving relationships that she had prior to her diagnosis. We just have to be ourselves…not some new strange person that fear creates through this devastating disease. In the long run, we all are better for it. We survive together by just being real.

    • Knot Telling says:

      Thank you for reading and commenting, Maria. Yes, we are still the people we were before diagnosis. “We survive together by just being real.” Well said!

  6. heyjudyjudy says:

    I just want to let out a prolonged burst of profanity. Maybe that will make everybody feel a little better about it, even if it doesn’t change anything.

  7. I like that some people are starting to ask “what is the right thing to say”, rather than just blurting out some of those hurtful things we’ve all heard. But I still wonder why it seems to occur to no one that maybe it is a time to listen for once? I guess conversations in Cancerland are no different than ALL conversations; most of us listen to others not for the purpose of absorbing what others say, but rather to formulate a response. And then I think, would I really open up to any and everyone anyway?

    • Knot Telling says:

      Good points, one and all.

      Of course on our side, we are always free to say, “Thanks for caring” and leaving it there. We don’t need to confide in people just because they want us to.

      Thanks for reading and commenting.

  8. AnneMarie says:

    Perfection… I am walking that line with my mom right now, but as the “smart ass who does the research” so it’s a fine line. What does she want me to share, when does she prefer blissful ignorance? The guidance of my friends with mets has helped me frame conversations and provided me a great roadmap for navigating rough terrain.

    It’s all about communication. I think being a fearless friend means it’s up to us to set aside our own fears, including the fear that we are going to say the wrong thing by simply starting our words with, “If this is out of line, just cut me off. I’m not sure what to say so if I’m saying the wrong thing, the only way I’ll know is if you tell me.” (Ok. so a condensed version would be better but you get my point!) … And to be crystal clear, “NO OFFENSE taken if you tell me to shut up!” I think good friends get that.

    One other thing… don’t ask. Just do. My friend just showed up at my door one afternoon with a small bag of DVD’s. She didn’t show up to be entertained. She didn’t show up even expecting me to tell her to come in. She was just dropping them off to give me something to distract myself from the side effects of the chemo. I told her to come on in and we selected a movie and had one of the best afternoons. We were just on opposite sofas, saying little. Just having company meant so much.


  9. nancyspoint says:

    Just be there and I don’t mean just physically. I mean “be there”. Take your cue from your friend and remember no one expects or even wants perfection, so don’t worry so much about saying or doing something wrong. Listen, care, accept, help when you can and don’t be afraid to show that you, too, feel vulnerable and afraid. And sometimes silence is perfectly fine. The ‘golden thread’ you mentioned is perfect. Great post. Thank you.

  10. mrlnelson says:

    Wonderful, insightful post. I think the only thing I struggle with is having been, and continuing to be the person that doesn’t share what she’s going through with her friends, people historically have cone to me with their problems, not the other way around. So, when I do open up to people, if they aren’t emotionally able to handle it and were to ask me not to share, I likely would leek shut down and not turn to that person again. This is already a very lonely place to be, and many friends have already just left the party. Those that stay I hope will be able to just listen even though there is very little they can do to make it better except be there.

    • Knot Telling says:

      Welcome to Telling Knots, mrlnelson. I’m very glad to see you here and hope you’ll come back off.

      It’s hard to be vulnerable. It’s not for everyone and it’s for all times and places. It’s especially hard to open up when we have always been the listening tree. Been there.

      Losing friends is so painful. New ones don’t replace them, but they can help. There are many wonderful people on line, and I hope you’ll find some you can connect to in a deep, genuine way.

      Thanks so much for reading and commenting.

  11. Great post! I loved the humorous twist to the video. I was afraid to watch it, thinking it would be depressing. I do not agree with one of them, I feel it is hopeful and helpful to hear of someone with metastatic disease who has beaten the odds. Heck, that’s what I focus on!

    Most of the time, I get questions asking when I will be done with chemo. My answer, “never but I’m doing well and hoping for a cure.” and then I feel I have to go into a long explanation. It’s really upsetting. I think we need to allow ourselves to say in the nicest way, “I really would not like to talk about it.” Or “read my blog if you want to learn more about me.” Or “Google metastatic cancer, dumbass!” Just kidding, but I feel that way sometimes.

    I realize some people don’t understand metastatic cancer, and they feel uncomfortable about talking about it and mistakenly say the wrong thing. But it’s not responsibility to give my medical history to people I barely know. And by the way, I have friends who swear by coffee enemas!

    • Knot Telling says:

      Okay, I’m going to skip the coffee enemas thing, and move right along. 😉

      Thank you so much for this great comment. Isn’t that the most awkward question (“When will your treatment be over, when will you be better”)? I sometimes feel like giving those same answers.

      Yes, we absolutely have a right to our privacy! People who ask intrusive questions have pretty much opened themselves up to whatever answer they get, I think.

      Many thanks for reading and commenting.

  12. Maxine D says:

    What a topic – yes it is at times awkward to be around folk who suddenly blurt out they have a terminal condition and think that you should know all – especially when they are so needy they feel the need to dominate the situation……….

    Yes, ‘being there’ is sometimes all that is needed – and silence can be golden, especially when the sufferer is exhausted from treatments and sometimes just by life.

    Definitely the ‘carer’, ‘supporter’, ‘regular visitor’ should take care of themselves first – that is something I am passionate about!

    Any relationship is a two way ‘door’ and there has to be give and take and understanding on both sides – your comment about the sufferer have no more social rights is so true.

    Thanks for your sharing and insights
    Blessings and Prayers

    • Knot Telling says:

      Wow, Maxine – thank you so much for bringing this up! It is very important for us to remember.

      Thank you so much for another of your insightful comments.

  13. helensamia says:

    Cancer seems to gain and loose you friends all at the same time!!!!

  14. BlondeAmbition says:

    This is so on target. This is a keeper and should be widely shared. That said, you posed a question that is worthy of further discussion and a little awkward to answer.

    I’ve sadly known several people who were diagnosed with metastatic disease. Everyone handles things differently and there is no ‘right’ or ‘wrong’ way to handle such a devastating diagnosis. However, there are some who push away the people who do rise to the occasion. I have seen this play out in several scenarios; sometimes it is the patient themselves, but other times, it’s their ‘well-meaning’ gate keepers.

    My heart broke reading posts from a couple who felt that friends and family had ‘abandoned’ them when in reality, they had surrounded themselves with people that were exclusionary and shut people out. Friends who had been in a support group with this woman and would have gladly visited, prepared meals, or done any number of things to help, were methodically left off of email updates from the self-appointed gatekeepers and even chastised as being “gossips” for asking about the person’s condition. When the woman passed, the details of the arrangements were not even shared. We eventually learned that the couple had no idea any of this had taken place, but those friends will never get back that time or opportunity to help.

    Not looking to place blame on anyone, but it’s hardly appropriate to voice something like this as it is unfolding. And worse, it makes it especially difficult for people to be a #FearlessFriend. On a certain level, it comes across as though people would rather have the world believing that people aren’t there for them. Rock and hard place, but I try not to let these experiences deter me from reaching out.

  15. Bill says:

    It just occurred to me why your posts are so insightful. Your work as a translator is to help others make sense of a message from a different reality. And that’s just what you’re doing in this blog for those of us who see your current experience but don’t fully “get it.” Thanks for doing that with so much care…and so beautifully, Knot!

    • Knot Telling says:

      Your very kind words made me blush, Bill, but I think you are on to something. Translating is more than just a technical skill; it’s a way of looking at the world. Thank you for that thought.

  16. bethgainer says:

    I agree with taking cues from one’s friend. I did that with a friend, and let her help me know her wants and needs. I was present with her, and I believe it’s important to not reject a friend, whatever the diagnosis. Wonderful, thought-provoking post!

  17. Jack B says:

    As a survivor and support giver, the most important thing a friend can do is just be there. It provides a small connection to a sense of normalcy. Cancer victim lives are ripped to shreads at times and touch hands with a friend is often enough for them to know things are okay.

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