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what not to say to cancer patient

nancygt
Posts: 86
Joined: Jan 2010

While this advice is couched in terms of caregivers fro parents with cancer, I feel it is still worthwhile. I read it when dealing with my best friend who was diagnosed with stage 4 lung cancer and have referred it to other friend.Also no whaving better understanding of chronic cancer and multiple treatments, I find it of even more value.

Experts caution that when caring for a parent with cancer, there are six things caregivers often say -- in an attempt to be sympathetic, supportive, or encouraging -- that can have just the opposite consequence, shutting down communication and making our parents feel worse.
Psychiatrist Jeffrey Knajdl, director of psycho-oncology services at Creighton University in Omaha, Nebraska, points to these six common sayings to avoid, along with suggestions for what to say instead:
1. "Everything is going to be all right."
You have no way of knowing if it will be or not, says Knajdl, and such a statement ends up sounding like an empty platitude -- plus you establish a sense of mistrust. "It doesn't make your parent feel better," says Knajdl, "because he knows it's not true and it just makes him feel dismissed and not heard."
What to say instead: What your parent really wants to hear is that you're going to be there for him through the good times and the bad, and that he's not going to go through cancer treatment alone. There will be days when it does feel like everything's going to be all right, and you'll be there to celebrate that with him, but there will be days when discouraging test results come in or he's in pain -- and you'll be there for that, too. "When you talk to patients, their two big fears are that they won't make it through treatment, and that they'll be alone and in pain," says Knajdl. "Just keep telling your parent that you'll be there with him and you'll make it through this together."

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2. "I know how you feel."
This is almost an automatic response for many of us when someone is sad or upset. We say it out of the best of intentions, to demonstrate our compassion, our sympathy, our sense of having been there. The problem is, it has the unintended effect of shutting the other person down, says Knajdl. "When you say, 'I know how you feel,' the unspoken second part of the thought is, 'and therefore you don't have to go into any detail about it,'" Knajdl says. "It increases the patient's sense of isolation, because it's like telling him you don't want him to talk about it."
Unless you've been treated for the same type of cancer and have undergone exactly the same treatment, you really don't know how your parent feels. "We have no idea what it's like, and it's upsetting to the patient when we act like we do," says Knajdl.
What to say instead: A better approach, according to Knajdl, is to ask something like, "How are your mood and spirits holding up through this?" If your parent is anxious or sad, this gives him a chance to tell you how he feels, which can be a big relief to someone who's trying to pretend he's doing just fine. And even if he answers that he's holding up pretty well, he'll still feel better that you asked.
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3. "Try to keep a positive attitude, relax, and avoid stress. It can help you heal."
Cancer patients hear endless variations on this "mind over body" theme. There are going to be days when your parent doesn't feel positive at all, and you certainly don't want him worrying that he's sabotaging his own chances of recovery. And what if your parent has a stressful job, or is a type A personality who reacts easily to stress -- do you want him feeling guilty or worrying that his high-strung personality or tendency toward anxiety either "caused" or will worsen his cancer?
Unfortunately, an awful lot of the literature conveys, in one way or another, the underlying message to cancer patients that they may have "caused" cancer through stress, worry, or a negative attitude, and that they could heal the cancer if they'd only develop a mellow outlook or sunny disposition. All that really happens is that they feel even more anxious about trying not to be anxious, or they feel guilty for not feeling happy. Even some visualization techniques can make cancer patients feel a sense of defeat, Knajdl says, if the focus is on healing but healing doesn't seem to be happening.
What to say instead: Suggest specific solutions. When your parent is tense or anxious, ask him to identify what's stressing him out and how you can help him put the worries to rest. In other words, instead of saying "relax," help him relax by eradicating the stress trigger. For example, try refocusing any visualization your parent is doing toward a concrete and reasonably accessible goal, such as comfort or sleep. Instead of trying to visualize eradicating a tumor, suggest that your parent visualize falling into a deep sleep in a quiet, safe, pleasant place. Sometimes you can help eradicate stress with a concrete act of assistance. Knajdl remembers one patient who was very anxious in the hospital because he felt he hadn't put his financial house in order. His son brought all the documents to the hospital, and they took care of them one by one.
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4. "We can beat this."
In our rush to be supportive, it's all too easy to fall back on such encouraging and inspirational messages. But they can give cancer patients a deep-seated feeling of failure. "I call this the Lance Armstrong syndrome, this idea that if you have the right fighting spirit you can overcome disease," says Knajdl. "I admire Armstrong and he's done great things to publicize cancer, but this idea that people can triumph over cancer with will power and an upbeat attitude is just crazy. There are all sorts of factors that contribute to why some people recover and some don't. The truth is, some people just get lucky."
This problem tends to come up with cancer survivors in particular, who may believe very deeply that their attitude, philosophy, spiritual focus, or belief in healing helped them survive. And sometimes hearing such stories can make your parent feel hopeful and optimistic. But if things aren't going well -- if a scary test result has just come in, if chemo's side effects are almost unbearable, if your parent is facing the fact that his cancer may not be curable -- then hearing others' tales of triumph may not be helpful.
What to say instead: The best way to help your parent feel positive and hopeful is to just keep reassuring him that you're in this together, and that you'll keep caring for him and supporting him and making him as comfortable as possible during his treatment.
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5. "Now, now, don't get yourself all worked up."
Your parent is scared, angry, or in tears, and you want him to feel better. But unfortunately, a statement like this makes it sound as if you want him to put his feelings, which are natural and unavoidable, under wraps. "In this situation, it's okay to get worked up, and it's okay to vent," says Knajdl. "We have this fear of feelings getting out of control. But your parent needs opportunities to cry or get angry or get upset, and if you can help him express these feelings and get them out, in the end he'll feel better."
What to say instead: If you don't know what to say, it's okay not to say anything at all, Knajdl says. Just offer the comfort of your presence, a hug, or an arm around the shoulders. Allowing some silence without rushing to fill it gives your parent a chance to say what's on his mind in his own time. Perhaps he's afraid of pain, afraid of letting you down, or frustrated by feeling incapacitated by his illness. "One patient surprised his son by saying, 'I feel frustrated lying here in the hospital because I feel like I'm wasting my time,'" Knajdl says. "It turned out he was actually upset that he didn't have his legal affairs in order. The son responded by saying, 'Would you like me to get a lawyer to come in so we can take care of that?' That made his father feel much better."
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6. "Congratulations, you're done with chemo [or radiation]."
As a caregiver, you'll feel thrilled when treatment is finished, but your parent's feelings are likely to be much more mixed. During treatment, your parent is taking action. That can be empowering because the focus is on a solution, either a cure or progress in pushing back the cancer. When treatment is finished, it can feel like there's nothing more for the patient to do but wait, and naturally your parent may feel anxious and uncertain. "Often, people don't feel like celebrating. Instead they think, 'Now what do I do? Just wait for the cancer to come back?'" says Knajdl.
No matter how relieved you are, try to keep it to yourself. "It's really common to say something like, 'Boy, am I glad that's over,' but that implies two things: that the treatment has been a burden on you, and that you want your parent to be happy about it when maybe he's not feeling happy," Knajdl says.
What to say instead: Give your parent a chance to express how he's feeling. Try asking an open-ended question, such as, "How are you feeling now that we're finishing up the chemo?" This way, you allow your parent to control the response. He might say, "I know we were talking about throwing a party when I finished chemo, but I really don't feel like it." The bottom line is, whatever your parent is feeling is okay, and your job is to make it clear you're ready to listen.

pipscout
Posts: 24
Joined: Jul 2010

thank you for posting this. i was wondering if there is a link to the original article? i'd like to pass it along.

nancygt
Posts: 86
Joined: Jan 2010

Here is at least one link (if not the original one)

http://sharelife.wordpress.com/2009/07/22/what-not-to-say-to-someone-with-cancer/

If you have never gone to wordpress, they have some interesting offerings - I particularly enjoy the blog there that i believe is entitled lifeandbreath by a lung cancer patient (she also has a rare type of lung cancer) but she is real and funny, takes great photographs and is going through a somewhat unusual situation with a clinical trial where a drug has had success for lung patients with ALK mutation. Much of the hope for future treatments may lie witht these typs of treatments (such as Herceptin for HER 2 and hopefully others as we move forward) and her blog is interesting in that respect as well.

Always Hopeful
Posts: 234
Joined: May 2010

Thanks much for posting this. I already "cut and pasted" it into an email and sent it a few.

Peace and hope, JJ

Tresia23's picture
Tresia23
Posts: 77
Joined: Dec 2010

Thanks for this really relevant post. So many people think of themselves first before saying things quite without thinking of how it impacts on the person with cancer. We are all hardwired for survival and maybe it is a primitive response clothed in modern language.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Thanks for posting this. I wonder how many times I have heard some of these responses. I know people mean well, but their remarks do not always help. They do not understand what we are going through. I too am going to copu and paste this. In peace and caring.

HeartofSoul's picture
HeartofSoul
Posts: 730
Joined: Dec 2009

There are two points where I disagree with DR Knajdl

Point 1
"I know how you feel."
Unless you've been treated for the same type of cancer and have undergone exactly the same treatment, you really don't know how your parent feels. "We have no idea what it's like, and it's upsetting to the patient when we act like we do," says Knajdl.

My response
Even if one doesn’t have the exact cancer and exact treatment, they can come very close to how another person may feel, on the other hand, one can have the same exact cancer and treatment and not even be close to how another cancer survivor feels. As you can see, the statement “I know how you feel” can be double edged sword.

Point 2

We can beat this."
In our rush to be supportive, it's all too easy to fall back on such encouraging and inspirational messages. But they can give cancer patients a deep-seated feeling of failure. "I call this the Lance Armstrong syndrome, this idea that if you have the right fighting spirit you can overcome disease," says Knajdl. "I admire Armstrong and he's done great things to publicize cancer, but this idea that people can triumph over cancer with will power and an upbeat attitude is just crazy. There are all sorts of factors that contribute to why some people recover and some don't. The truth is, some people just get lucky."

This problem tends to come up with cancer survivors in particular, who may believe very deeply that their attitude, philosophy, spiritual focus, or belief in healing helped them survive. And sometimes hearing such stories can make your parent feel hopeful and optimistic.

My Response
Attitude and a Fighting Spirit is VERY IMPORTANT and along with medical care treatments, can make a difference in survival especially enduring the demands of chemo/radiation and surgery without quiting. Attitude, philosophy, spiritual focus, and belief in healing often does help them survive

nancygt
Posts: 86
Joined: Jan 2010

Of course aittitude and spirit are impportant and I hardly see where the author was diagreeing with that. And no one on this website would dispute that as this gorup picks each other up when spirits are flagging and people are on the verge of quitting. But I understand what he means when people imlpy that is all you need. Many of us have multiple surgeries,chemotherapies, radiations and want to fight for evry day we can. But it is wrong to imply in any way that failures of drugs or treatment mean that we did not have the right fighting spirit or enough willpower and upbeat attitude.There is a certain amount of luck in whether the treatment works or if you are triple negative or other factors- some of th most courageous ladies on this website are struggling right now with several different chemos recently that have not worked and I hope they have the strength and courage to keep trying what is left to them in hopes of success. My friend with stage 4 lung cancer was told that she had less than a year to live and has fought valiantly for 5 years and i have total admiration for her guts as does every one that knows her. But she has had surgeries, multiple radiation, major brain surgery, life threatening clots and is on oxygen and is on 3rd or 4th line chemos with 30% success rates. I hope I can show the hope and fortitude she has and know that is a big part of why she has survived this long. But I certainly will not imply she was a failure in any way if she loses her battle. And I believe that was all the author was trying to say not disputing that attitude and spirit are not important.

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