Book Review – “Cancer Etiquette” (Part 2) – what to say and not to say to someone who has cancer

canceretiquette

Updated 15 April 2014 with more personal additions

From the book “Cancer Etiquette” by Rosanne Kalick – one of the best books in the market offering guidance on what not to say and what to say to people who have cancer. [Unfortunately it is only available as a hardcover book.  Amazon has some used copies].

I’ve covered some of the mistakes people make when speaking to someone who has cancer in Part 1, as mentioned in Rosanne Kalick’s book.

In Part 2, Rosanne Kalick shares some tips on what not to say, and to say, to someone who has cancer.  I’ve since updated this post with my personal additions, so it’s hard to separate what is Rosanne Kalick’s and what is mine, but the bones of this post is from her book.

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Keep Calm and Eat Chocolate??? Not!!! (image credit: Global Cool.com)

1.  Don’t try to be funny, e.g. by saying things like “I hear you’re leaving us” or “you’re ruining our Christmas”.  [Or in the case of a friend of mine who was told by a nurse:  “don’t worry, love, this means you can eat all the chocolates you want for Christmas.”  Wow!  Chocolate makes up for having cancer, doesn’t it!]

2.  Don’t be too personal by asking what sort of colostomy bags they have to use, or which breast is being removed or what type of reconstruction, or whether their pubic hair fell out from chemotherapy, just because someone has cancer.  If someone had a kidney problem, would you ask “which kidney?”

Instead say, ” I will love you even if you have only one breast.  I want you to live, and if that means you have to have a mastectomy, then please do it.”

3.  Don’t destroy optimism by saying things like “Oh, chemo is cumulative.  You’ll only feel worse later on.”  On the other hand, don’t romanticise or minimise by saying “Oh, my sister worked through chemo”.  Well, I’m very happy for your sister, but what if I couldn’t work through chemo?  I would feel inferior to your sister, that there was something wrong with me, that I wasn’t strong enough.  Everyone becomes an expert on chemo who’s had cancer in their family – please keep your expertise to yourself because reactions to cancer treatments vary greatly!

4.  Privacy is important – don’t tell the whole world your friend has cancer.  Assume what is said to you is confidential.  Respect the patient’s wishes.  Someone’s cancer is not a suitable water-cooler topic.  Save that for the latest episode of Game of Thrones.

5.  Don’t say “you look good”.  Compared to what?  If a person is having chemo, a better comment would be to say:  “I like the colour of the lipstick you are wearing today.” Or “I’m glad to see that you’re doing so well in spite of the chemo” or “You look much better than you did a week ago”, or “You’re looking stronger – how are you dealing with the treatment?”  Don’t romanticise how the patient looks!

6.  Don’t say, “you’ll be fine” to the person waiting for biopsy results.  Say instead:  “I hope it’s nothing” or “I’m here for you whatever the outcome”.  Don’t sayYou’ll get through it” to the person who’s facing surgery, radiotherapy and 6 months of chemotherapy.  Yes, the person may get through it, but how would you know … you are not that person and not facing months of debilitating treatment with terrible long-term side-effects, all minimised with a breezy “You’ll get through it” – er … if it was that easy, why not try it yourself?  Say instead: “I’m here for you whatever happens.”

7.  It’s perfectly OK to say “I don’t know what to say“.

8.  Don’t say, “how are you?” because the standard reply is:”fine”.  Better to say “How are you today?”

9.  Don’t say, “You have to be positive”.  Why should someone with cancer expect to have to think positively all the time?  The reality is that there are people with negative attitudes who survive while others with a positive attitude don’t. Don’t expect someone with cancer to be strong all the time.  Be reasonable.  It makes people feel like failures when they are not positive all the time.  It’s far better to be authentic.  Too much energy gets wasted trying to be cheerful for the sake of friends and family, energy that could be spent on healing.  Also, it’s my personal experience and that of my cancer friends, that when people say “you must remain positive” or “don’t worry”, it’s really for their own benefit – they can’t cope with someone who’s going to pieces.  If you are authentic, you create a safe space for the person with cancer to speak about their fears.  By insisting that the cancer patients feels or thinks in a certain way, this minimalises their thoughts and fears and they will definitely not open up.

Please don’t give the cancer patient books on positive thinking (unless the cancer patient wants them and asks for them) – it could be negatively construed by the cancer patient as their not being sufficiently-positive (and not doing enough to help themselves).  The world is full of books written by cancer survivors and new-age experts on positive thinking.  If the cancer patient really needs them, they’ll find them.  Don’t add to our information overload.  Amazon book vouchers are a better alternative.

10.  Don’t say, “It could be worser.”  Oh.  How?  Like what could be worse than cancer?  [fill in the blanks with other disease].  This phrase does not offer hope!  This phrase goes hand-in-hand with the God Opinion:  “God only gives people problems they can cope with”. In which case, my answer is:  let’s do a swap!”  I’m quite happy to take this up with God (if there is one), when I have to meet him, in the meantime, please do not presume that you know the mind or heart of God in doling out shit to a person.  The New Age moronic equivalent is:  “everything happens for a reason” usually delivered smugly by people who’ve read Louise Hay’s “You can heal yourself” but who’ve had no life experience at all.  Also, steer clear of the Cancer Comparison stakes, as in “well, at least you got the good cancer”.  Excuse me – breast cancer is better than which cancer?  People die of breast cancer!  Please don’t go down the “pancreatic cancer is worse than breast cancer, so you’re better off at least”, route.  Therein lies the end of your friendship.

11.  The levelling comment – Don’t say, “Everyone is going to die”.   I got this from a homeopath who worked with cancer patients! Yes, we’re all going to die, but it is not a level playing field if the person offering the comment doesn’t have cancer. [read this fantastic riposte in a comment left on Lisa Bonchek Adam’s blog:  “yeah, everybody is going to die some day, so I’ll let you go first!”].  Why is there this desire on the part of therapists who work with cancer patients to assume that people with cancer and people without cancer somehow share the same bond because they are both going to die someday?  Please don’t assume this – death is closer for the cancer patient and we are not in the same boat!

12.  Don’t be over-familiar. Somehow, a person with cancer is viewed not as a person, but a disease.  People suddenly ask personal questions they wouldn’t normally ask.  How well do you know the person?  If you’ve never discussed breast sizes or baldness with that person before, what makes you think it appropriate to ask the question now?  Your best bet is to wait for the person to bring the topic up – sorry, I know you are curious about which breast was operated on, but is knowing which breast going to improve the quality of the relationship or support structure?  It’s none of your business!

13.  Don’t give “I told you so advice” like “oh, if only you had eaten less red meat or exercised more”.  Cancer strikes vegans/vegetarians as well as the fat and the thin.  Believe it or not, lung cancer affects non-smokers too!  These judgements may make you feel better because you exercise and don’t eat meat or smoke, but they won’t help the cancer patient.

14.  Keep your opinions to yourself even if your cancer friend is doing the wrong thing.  Yep, very hard, especially if you know someone who was cured of cancer by drinking 15 carrot juices a day and doing four enemas and eating sawdust.

15.  Beware of the “I know how you feel” comment.  Every case, every patient is different.  Try instead, “I THINK I may know how you feel”.  The same goes for the “I had a similar experience” type of story, which is not related to cancer, e.g. “my mother died of cancer” (while this is meant to show a common bond, this is not the time for sharing your suffering – this is the time for you to shut up and listen to your friend’s pain).

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The chemo saint (works through chemo, never threw up, never lost her hair, ran a marathon). Argh.

16.  Hold the war stories.  Don’t say, “I had chemo and it was terrible”.  Your goal is to support, not to add to anxiety levels.  The opposite of the war story is the chemo saint story where the person sailed through chemo, never threw up, kept her hair, ran a marathon and worked throughout chemo.  That’s all very nice and meant to be reassuring, but on hearing this story, my first thought was: well, what if I can’t work through chemo – I felt an instant inferiority.  Chemo regimes are different and everyone’s reactions are different.  Please don’t put any more pressure on cancer patients with stories of chemo saints.

17.  Treatment advice:  Before you offer treatment advice, ask the patient if she wants material on the topic.  The delicate issue is how to present information and experiences without implying that the current medical path is incorrect.

18.  Don’t ask the Family Question, i.e. “does breast cancer run in the family?”.  Most people ask this question because they want to reassure themselves that breast cancer is genetic, so if the person who has breast cancer had a female relative who had cancer, and they didn’t, then they are less likely to have cancer.  Well, it makes the person with cancer feel like some sort of guinea pig, marked out for a painful demise.  Genetics only accounts for 2% of familial cancers – imagine that!  More women get cancer who do not have BRCA1 and BRCA2 mutations.  And not all BRCA1 and BRCA2 women get breast cancer!

18.  If the patient brings up the issue of death, don’t say “I don’t want to talk about it” because it shuts down paths of communication.  By asking the question, it means he/she trusts you .  If you’re really uncomfortable, try instead, “I don’t want to talk about your dying right now because I don’t want you to die”.

I had an experience with this when I was at the IV C clinic.  A man with inoperable stomach cancer was there with his wife and daughter.  Both the latter were the dream support team, they talked to me about how they juiced, got the father his supplements, made sure he was eating organic, vegan, non-cancer foods.  I was so envious.

At one point during an infusion session, the father said:  “well, when I die …” and immediately both wife and daughter jumped in with “oh, no, don’t say that – you’re NOT going to die.”

I exchanged slow looks with the father.  I could see he wanted to talk to me about this forbidden and taboo subject, but as long as his wife and daughter were not allowing him to, he could not get as close to them as he wanted to.

It is not for me to judge – it is hard for the carers of the cancer patient to cope with losing a loved one, how painful it must be for them.  And there’s a lot of erroneous thinking that you have to be positive in order to heal from cancer.  I think it is better to be realistic and authentic than to be in denial.

Another experience:  I visited my friend, A, when she was in the hospice.  We skirted around the issue of death.  She kept speaking about “when” she got out of the hospice, so I kept schtum.  Who am I to take hope away from someone?

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What to say/write to a cancer patient

So what can you say, what can you write in the card you’re going to send the cancer patient that’s going to help?  [By the way, there are many cancer cards on the market, but so far I haven’t seen one that doesn’t make me wince – they are full of platitudes about strength, the immortal spirit, beating cancer etc.  I would rather a card with a nice cheerful photo in front, and some words from your heart inside, with practical help.  Please don’t rely on Hallmark to say it for you.]

Here is a video on the difference between sympathy and empathy – it says it all:

(1) be authentic.  Say something like:  “I’m very sorry.  My heart goes out to you.”

(2) even better:  “What specific thing can I do to support you?  Would you like me to babysit next Sunday, or would you like to come to a BBQ next Saturday?  Can I drive you to an appointment?  Can I help you out financially?”

Note how specific the offers are.  Don’t say something vague like:  “Call me if you need help” or “Let me know if I can help” or “If there’s anything I can do, just ask” – the cancer patient cannot process information as they normally would, because they have fear and anxiety about the future and are unlikely to call you back.  I, for one, am terrified of being a burden on people, and wouldn’t want to presume on my friend’s time, or what seems to be lip service to help.  Actions speak louder than words!

Please be prepared to follow-through.  Think how you would feel if you were in the cancer patient’s shoes, and what would make you feel safe and supported.

********

Summary:

1.  Offer hope and optimism, not advice or diagnosis

2.  Ask yourself:  will my story hinder or help?  Will this add to or lessen the patient’s stress?

3.  Take your cue from the patient – if they want to talk about it, fine.  If not, don’t ask.

4.  Don’t romanticise.

5.  Before you speak, pretend you’re speaking into a tape recorder and it’s playing back what you’re going to say – is that what you want your friend to hear?

6.  Everyone’s life experience is different – yes, you may have had experience of death, but not of cancer.  Don’t equate having cancer with the experience of your mother dying.  They are both painful experiences, but not the same!

7.  Let your friend with cancer take the lead in the conversation, in how much they want to reveal about the treatment, the surgery, which breast etc.

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8.  My personal addition:  If breast cancer, please don’t mention Angelina Jolie.  Yes, I know she’s done a lot to publicise mastectomies and breast cancer and BRCA1/2 and made it more acceptable, but every woman’s experience is personal and in a way it’s devaluing a woman’s experience if you say that her issues have been given more acceptance/validity by what Angelina Jolie has done.  Or if you say that Angelina Jolie is brave for having done what she’s done.  Every woman who’s had a mastectomy is brave.  Why do we need the varnish of acceptability from celebrities?  Not just Angelina Jolie.  Yes, she’s had to face a lot of public attention, but Angelina Jolie is used to living life in the public eye – she had a choice to tell, or not to tell.  And no woman makes the decision to have a mastectomy just because Angelina Jolie got one.  A mastectomy is not a fashion trend.

9.  Another personal addition – an example of the war story:  this year, I mentioned to an acupuncturist that seven of my friends had died of cancer.  He said: “oh, I have to face this every year”.  I can see that the sub-text was:  he was trying to say that he was in the same boat, that he could empathise because he had friends who had died of cancer too,and also that if he could man up, so could I.  However, there is a HUGE difference – he didn’t have cancer.  When you have cancer and see seven of your friends die, you come face-to-face with your mortality, you see your own death at the same time.  This therapist didn’t have to face his mortality.  So … if you’re a therapist and reading this, please bear this in mind the next time you try to empathise by putting yourself in the same shoes.  Your client deserves something better than a platitude.

I mentioned this to a colleague and told her how cancer made it difficult for me to just sit at the lunch table and listen to people’s stories of mortgages and holidays, and she said:  “don’t you think we all have our problems?”  Which made me shut up.  Sure you have your problems, sure your mother died.  But it puts a different spin on things when you watch someone die of cancer, when you have cancer yourself.  It is like dying a double death and you are more aware of your mortality than ever.  Cancer turns up the volume on whatever else is going on in your life.  Say you have mortage problems, well guess what:  now you have mortgage problems and CANCER as well!  If you have relationship problems, CANCER makes it worse!

10.  Please please stay friends with your cancer friend, even if the journey takes years – it is a very lonely and difficult journey.  I have lost friends because they have felt uncomfortable with cancer.  I’m sorry!  Us cancer patients didn’t ask to get cancer!

*******

Finally, thank you for reading this post.  This topic is something very close to my heart as I’ve had my fair share of comments, and I’m not very thick-skinned and lost my funny-bone when I was diagnosed, so if I’ve ranted, I apologise.  It’s a mine-field, this cancer business, and nobody will get it right.  The cancer patient has the moral high ground in the exchange, but that’s still no excuse for not being tolerant and gentle with our friends and family who only want to help.

To the person whose friend/family member has been diagnosed, I guess I’ve pretty much shut you up now and you’re tiptoeing around what can and can’t be said.  There’s hardly anything you can say really except:  “I’m sorry, and can I help you by [be specific]”.  Anything else may cause offense.  But don’t worry, we cancer patients are grateful for your support, we understand that you want to help, and that your underlying motivation is to fix things, so if we get pissed-off, it’s because we are vulnerable and going through a shit-time.

“Sorry” is a very good word to share, on both sides, for any mistakes caused in the exchange.

Have you any experiences to share?  

Or comments to add?  

Have you any humorous and diplomatic ways of dealing with awkward comments?

Please feel free to share your experiences.  You will be helping a lot of people who read this blog.

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3 responses

  1. My 6 yr old daughter diagnosed with stage III melanoma. My coworker is a 60 yr old mother and grandmother, she told me “life’s a bitch and then ya die” I am so hurt and disgusted by her!

    • Hi Holly, I’m so sorry about your daughter’s melanoma, and your co-worker’s comment. It looks as if she’s giving you her philosphy of life, and not really understanding what you and your daughter are going through. I think it comes from ignorance. It’s sad how people who aren’t going through the cancer experience try to place it within their experience of life, and end up skewing things from their perspective. If you’re absolutely boiling over and have to say something, you could say to her: “that’s not very supportive, please don’t say such things to me again”, but be prepared for her not to understand you. Or you could use a different approach and say something like “my daughter’s only 6 years old and life for her has always been great and we’re going to get through this because there are people who want to help us and make life less of a bitch.”

      Good luck and best wishes to you and your daughter!

  2. Pingback: What to say/what not to say to someone with cancer … 6 characters in search of a T-shirt! | BisforBananasCisforCancer

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