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What's OK, not OK, and more than OK to say to someone with cancer?

What's OK, not OK, and more than OK to say to someone with cancer?

Posted by cancertakesflight on Aug 6, 2020 11:37 pm

Here is one of my blog posts, which is also posted in the Blog section of this site. 

Just as cancer and the reactions to it are different for everyone, the words that irritate you during your cancer experience may be totally acceptable to someone else. The following are my lists of words and phrases that were not okay, somewhat okay, and more than okay.

Not Okay
  • Relax – If you’ve ever been told to relax, did you find that, if anything, it made you a little more uptight? Did the person who told you to relax see you tense up so they told you to relax again? It can be a vicious cycle. Cancer is a stressful experience and it’s up to you, as the patient, to find your own method of relaxing. Personally, the large quantity of Benadryl  I received during chemo also helped me to relax, even when I wanted to stay awake.  
  • Just – The word ‘just’ combined with any word is an injustice. It’s ‘just’ breast cancer. It’s ‘just’ stage 1. It’s ‘just’ three more treatments. It’s ‘just’ me being emotional. The word ‘just’ minimizes the importance of events, emotions, and people. You shouldn’t minimize what you feeling and others should not try to make you feel better by using the word ‘just’ as a form of encouragement. For example, while other forms of cancers may be perceived to be more difficult to treat, no one wants any kind of cancer. The anger, fear, and frustration all come with the territory and there is nothing ‘just’ about it. 
  • It’ll be okay. – No one knows whether this statement will be true; however, you have hope and faith that everything will be okay or there’s no point in continuing treatment.  I’m okay with telling myself that things will be okay, I don’t want someone else to tell me. 
  • I know how you feel.  – Until someone has had cancer they can’t possibly know how you feel and, even then, what one cancer patient feels will be quite different than what another patient feels.
  • Shortly or Soon – These words are relative. What is ‘soon’ for one person is an eternity for someone else. When I was trying to book appointments to get my lungs and heart tested, I discovered that some telephone recordings included misleading information. For example, I heard the following recording for nearly an hour, “Your call is important to us. Please stay on the line and someone will be with you shortly.”  While I demonstrated that the call was important to me by staying on hold for nearly an hour (with no music), I failed to see evidence that the call was important to ‘us’.  I also felt like the use of ‘shortly’ was a blatant lie and used to lull me into a false sense that something would be happening soon if I just waited a little longer. When I ultimately got a recording to leave a message, I followed orders and left a message that expressed my ‘concerns’ about how their phone system worked. The only ‘F’ word associated with my message was ‘feedback’.  
  •  At least it’s over.  – Many people who have not had cancer don’t understand that it’s never totally over. While active treatments like surgery, chemo and radiation may end, the journey itself doesn’t. There can be long-term results to those active treatments. There may still be medications to take in an effort to reduce the chances of the cancer coming back. The side effects from the medication can be chronic. There can be the continued fear that every symptom (bone pain, trouble breathing, headaches) can mean the cancer has returned and possibly spread to another part of your body.  You have to decide what you can do to live your life to the fullest instead of letting fear be your life.

Somewhat Okay
  • Chemo Suite – Every two weeks I went to the ‘Chemo Suite’. The word ‘suite’ was definitely a misnomer. The suite was one large room with lots of people and two bathrooms. Throw in the fact that everyone was being filled with fluids and you had the potential for pushing and shoving to get to the bathroom first. In fact, with chemo, the pushing and shoving is usually you, as the cancer patient, moving the IV stand with you as you manoeuvre to the bathroom. 
  • Recovery Room – Until June 19th, I believed the recovery room was where you went after surgery to recover from the anaesthetic. This is what happened for all my previous surgeries. Unfortunately, with my last surgery, the Recovery Room didn’t work for me.  Now I can say that I’ve experienced the adrenaline rush of complications after I had my salpingo-oophorectomy (also known as having my ovaries and Fallopian tubes removed). Ironically, the surgery I was dreading in my last blog post went off without a hitch; instead, it was recovering from my anaesthetic where I missed the mark (well at least the correct room to recover in). Instead, I caused a bit of excitement and waited until after I was wheeled to the Emergency Room to start my recovery process, which included the ability to breathe. While the room was wrong, the final result was what truly mattered. I came home and it was like nothing unusual had happened. I had no pain and I was able to do what I needed to do. We as cancer patients can deal with the many bumps in our journey as long as we reach our destination of having no evidence of disease (NED)/cancer-free. 
  • Specialists – Sometimes ‘specialists’ don’t recognize that since they specialize in one field they can’t possibly know all things about everything. For example, during my chemo treatments I expressed a concern about how treatments were impacting my epilepsy.  When I asked the medical oncologist to talk to my neurologist she refused. She told me my neurologist didn’t know anything about cancer and that she had a team of experts at her disposal who knew all about medications. Unfortunately, I couldn’t make her see that she didn’t know anything about the intricacies of how my brain works.  While no one completely understands my thought processes (me included), my neurologist would be the best one to help come up with ideas to help lessen the impact of the chemo on my epilepsy. This consultation never happened. Ironically, my surgeon (non-ist medical professional) reached out to my neurologist without me even asking. My conclusion was that anyone with ‘ist’ in their title does not willing admit that they don’t know everything. I had the urge to say, “Why don’t you just get over ‘ist’?” 

More than Okay
  • No words or saying “I don’t know what to say.” – Sometimes the right words are the absence of words. Sitting in silence with someone can be just as effective as saying words that are hollow or a source of irritation.
  • I can’t possibly know how you feel but I will do everything I can to support you. – It’s even better when the person follows through.  When this happens, and I was lucky that it did for me, there is no greater gift.
  • Waiting is the worst. – There is not a truer statement when it comes to the diagnosis process and getting the pathology report. It’s not always good to have an imagination when it comes to waiting and no one likes being in limbo. The longer you wait the more time you have to think of what-if scenarios. When I was early in my cancer journey and I talked to other cancer patients, this was the statement I heard the most frequently.
  • I felt better when I knew for sure what I was dealing with. – While no one likes to be told they have cancer, once I had a plan of action and direction, I felt much better than the chaos of not knowing.
  • I love you. – After surgery, during chemo and/or radiation, it’s always nice to know that you’re loved regardless of your appearance, your potential outbursts, and lack of physical stamina. It’s always nice to be loved for who you are at any given time.

What did and didn’t work for you?
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Kuching on Aug 7, 2020 8:15 am

cancertakesflight‍ , you got me thinking about what people have said and done that I liked or disliked, and I found that all the best memories were things that people did, rather than said.  Like the old college friend who drove two hours to bring me a big box of really good books.  And the neighbour who came over so many times with good home-cooked food that I started calling her Meals on Wheels Marian.  

As for dislikes - I get seriously annoyed by people who call up ostensibly to see how I’m doing, and then spend half an hour telling me about their knee or back problems.  Sorry, but I think stage 4 lung cancer trumps a bad knee!

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Lacey_Moderator on Aug 7, 2020 9:35 am

❤ this
More than Okay
  • No words or saying “I don’t know what to say.” – Sometimes the right words are the absence of words. Sitting in silence with someone can be just as effective as saying words that are hollow or a source of irritation.
  • I can’t possibly know how you feel but I will do everything I can to support you. – It’s even better when the person follows through.  When this happens, and I was lucky that it did for me, there is no greater gift.
  • Waiting is the worst. – There is not a truer statement when it comes to the diagnosis process and getting the pathology report. It’s not always good to have an imagination when it comes to waiting and no one likes being in limbo. The longer you wait the more time you have to think of what-if scenarios. When I was early in my cancer journey and I talked to other cancer patients, this was the statement I heard the most frequently.
  • I felt better when I knew for sure what I was dealing with. – While no one likes to be told they have cancer, once I had a plan of action and direction, I felt much better than the chaos of not knowing.
  • I love you. – After surgery, during chemo and/or radiation, it’s always nice to know that you’re loved regardless of your appearance, your potential outbursts, and lack of physical stamina. It’s always nice to be loved for who you are at any given time.
Thanks for sharing this cancertakesflight‍ it helps us all understand how to help, which I believe we all want to do! Knowledge is power!

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by sgt. pepper on Aug 7, 2020 10:58 am

Great list!! The one not ok that really irritated me was "you're going to be ok".  When this was said to me I wanted to ask them where they got their medical degree since my doctors did not tell me that.  I wondered why they would presume to predict an outcome without using a crystal ball to look into the future.  I can laugh about some of the stupid comments made to me but at the time it was NOT FUNNY or acceptable.

Sgt. Pepper

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Whitelilies on Aug 7, 2020 2:53 pm

cancertakesflight‍ Hello
Thank you for sharing this......I too have heard more than I cared to, from the "It is NOT okay list"......grrrrrrrr

Off to the Loo (my post surgery life.......)

Lillian

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Hazewind on Aug 7, 2020 4:23 pm

That was so well, on the mark. Thank you for sharing. 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Lianne_Moderator on Aug 7, 2020 7:13 pm

Great job cancertakesflight‍ 

Among a barrage of emails about cures and remedies, I loved (not ) this "You got the good cancer" . OH there is a list I could have picked from and any of them are "good" ? or anytime the sentence starts with  "At least....."  
Or "lucky you have a nice shaped head" Would have preferred to not find out but thanks ; )

Lianne

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by WestCoastSailor on Aug 7, 2020 8:14 pm

On the mark indeed.

As a first aider one of the first lessons I had to learn was in reassuring people to carve the line between truth and hope without lying. "You're going to be okay" really didn't cut it when folks are struggling to breathe and their life is flashing before their eyes. Exploring how they are feeling - reflecting back what I'm hearing to make sure I'm hearing it right. Giving them things to do to help. "Hold this while I do that." All done with a reassuring tone of voice. And that it turns out is one of the most important qualities. It has nothing to do with the actual words. If you are calm, they will be calm. It doesn't matter what that squirrel is doing on your inside but what comes out better be calm. Medics develop gallows humor pretty quickly as a defense against feeling but the good ones move past it into empathy with their patients.

I loved the part about the "ists."  I call it the "arrogance of science." The true greats aren't threatened by what they don't know. In fact they are drawn to discovery and acknowledging that they don't know. Some of the most challenging moments in my journey have been advocating for myself by helping one specialist talk to another specialist. I'm fortunate in that I have a humble GP who is willing to walk with me in that journey. He once described himself as a private where the specialists are the generals. Frankly as a servant he does more for my welfare than all of them combined. He doesn't hesitate to make a referral.

Angus
My story: http://journey.anguspratt.ca

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Danae on Aug 8, 2020 9:14 am

" You are going to be okay". No I will not,but depends from where it comes. It comes from people that are close to me and my heart, I see it as they send an extra prayer for my well-being, and gives some hope, even temporarily.
Does it come from a "friend" that although knows my situation, has reached out or continues about the "bad knee" no I'm not going to be okay, I feel your pain about your knee, you can't compare apples and oranges

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by SpeedyStill on Aug 8, 2020 8:48 pm

cancertakesflight‍ 
What a great topic to explore. 
I think that it is all in the education. People generally have not been taught proper communication skills. 
A lot of the lessons we learn are from what we watch and the people we associate with. Factors like ego, fear, anger etc. can also affect the style of communication.
The basic human need is to be loved and feel part of a group, a sense of belonging.
This is the one that connects with me. It is important because it causes the body to produce chemicals and have a mindset that helps in the bodies healing process.
I send my love out to all those people suffering.
Pay it forward
Speedystill 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Indigo10 on Aug 8, 2020 10:37 pm

Many years ago I picked up on what I found to be an odd concept. Why was cancer characterized as a battle and why when people died from the effects of cancer was it described as “losing their battle”. The idea that I might be viewed as a loser has never appealed to me 😐and certainly is an unfair assessment ,should I not survive cancer. It also assigns a lot of responsibility and accountability to cancer patients with the view that maybe they didn’t try hard enough, weren’t committed enough, were not of the right character. I also find that since my diagnosis people will tell me to keep positive thoughts as if somehow I can will my way to recovery. I can’t.  I know it’s just a cliche , like ,have a nice day , but I resent someone telling me how I should think, as if they know ,and I do not. I trust that my family and friends will allow me to be me and not always a smiling cancer caricature. 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Jmb on Aug 9, 2020 8:08 am

A great topic to explore indeed! While I don’t always appreciate the words I hear from friends and family I try to remember that not all people are good communicators. And some folks are just inexperienced, awkward, or nervous when talking about cancer. Maybe they have a limited capacity for empathy due to their life’s circumstances, upbringing etc. and sometimes people could be experiencing trigger reactions from difficult circumstances in their own lives. The irritation we feel with the inept, poorly considered comment from those who care about us can lessened if we focus on the fact that the words they offer are the best they have in the moment. People give what they can. And if we feel up to a teaching moment we could offer suggestions for them to use in the future:

- I am so sorry you are having to deal with this
- I can only imagine what you are going through
- Would you like to talk about it?
- None of us knows what our futures hold do we

Any suggestions that can be added to thIs list?

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by LucyK on Aug 9, 2020 1:42 pm

I agree with your dislike of the term "battle". I wish I could think of a better term. 

Another term that I find upsetting is "cancer journey". A journey is supposed to be fun,  like a great vacation.  This is not a journey.  It is a frightening, horrible fight for our lives.  

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Brighty on Aug 9, 2020 2:27 pm

LucyK‍  I'm with you on the 'journey ' thing.   I never use the term ' cancer journey' in my posts.     Journey  to me implies something  enjoyable.  ' Cancer nightmare'  is much more appropriate.     
Help is out there. All you have to do is reach out.

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Indigo10 on Aug 9, 2020 4:28 pm

I so agree. I too, have purposely avoided using the descriptor “journey” but have not yet found another word to describe what is happening. Perhaps I am just living in the silly world of denial. Yesterday I went to the pharmacy to pick up a long standing prescription and my pharmacist told me there were three more prescriptions for me. I looked at her like a deer caught in the headlights. These drugs, I knew were ordered by cancer care and that I need them pre my first chemo treatment August 17. I heard myself say “oh I don’t know if I should take them now”. Huh? How would this make sense to walk away without them. 
I suddenly snapped out of my denial zone and agreed to take them. I brought them home and put them down. I walk by the bag of drugs and look at it every once in a while ,but I don’t touch it.  I think taking those prescriptions home is just another signal to my denying brain that this is real. I play these games with myself which seem to ,in the moment, help me avoid  the reality and pretend. I am ,as well though , a compliant participant so August 17 at 8:30 am I will be at cancer care for my first treatment , trusting and hoping, until my next opportunity for an irrational no silly act of denial 😐. 
 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by SpeedyStill on Aug 9, 2020 7:10 pm

cancertakesflight‍ 
Lianne_adminCCS‍ 
I have been in this Community for coming on two years and I have used some of these words and phrases.
One I use a lot is Cancer Journey. I think though we should come up with something other than "Cancer Nightmare. lol
I might have used fight or battle in the beginning but I have stayed away from using this for a long time.
These are the words and phrases I can relate to and will add some words
Relax- Not in my dictionary from the time I was diagnosed and especially during Chemotherapy Treatments till now
I have had my happy times but never completely relaxed.
Just- there is no just with Cancer, it deminishes the diagnosis as if you are lucky
"You got the good one" been quilty not in this Community but when someone says prostrate Cancer,  "it by itself does not hasten your passing". This was told to me by a medical professional and I thought I was helping at the time.
"They can treat it"
Mass on my Kidney that could be Cancer. Because it is a mass then you should not worry. I am a worrywart anyway lol
A neighbor down the road passed and you survived "what's your problem"
You mention a problem which is a side effect from Chemotherapy and the other perso says yes I have the same issue. Okay then.
You are in "full remission" or told you are "Cancer Free" and that's the end you are back to normal.
"ists" "arrogance of Science"  this is a label that does not apply to all specialts a few maybe but not all. 
My Urologist does not fit this label at all, he is a true gentleman.
I read all the posts and above are my comments.
Words can sting like a bee or set you free
Speedystill 

 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by cancertakesflight on Aug 9, 2020 8:07 pm

There is such great conversation happening, which was the purpose of the post. It also highlights to me that we are all very unique individuals. I have a follow up blog post that's called "Them's fighting words...or not"  I have no concerns about the word journey because if you actually look at the definition of journey it is a perfect word because there is absolutely no reference to fun. 

But the important thing to remember is that we all apply our perceptions and experiences to the words we hear so what is right for one person may not be right for another. It's like the emotions we feel at any time during the cancer experience that is right or wrong. It just jas to be acknowledged and addressed.

Keep hat conversation going.
Cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by JustJan on Aug 9, 2020 11:13 pm

Certainly a very interesting topic and I had to think back to when/if I heard those phrases. Most things people said never really bothered me because in general they were very supportive and it all came from a good place.  The one word that does bother me though is “Warrior”. It goes along with my angst for the word “Battle”. I was not a warrior, I wanted to retreat and I was scared to death and was just trying to make it from one day to the next. I do like the word “resilient”. Your treatment pathway can take many twists and turns and one must learn to navigate it all. I don’t mind the word journey as it was a personal journey for me. I learned I can do really hard things. I learned a whole lot about managing difficult conversations and how to advocate for myself. I also learned how to accept help and support from others. I am a giver by nature but wasn’t always willing to let others help me. It was
rather freeing to let go. Everyone has a different experience but at the end of the day, I really do feel blessed. I have an amazing health care team who go above and beyond and a wonderful group of people who support me where I’m at on any given day. Today life is good. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by orchid*lover* on Aug 10, 2020 7:03 pm

LucyK‍ i agree!! The idea of it being a journey...and term ‘battle’...I’m glad I’m not the only one!🤔

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Rayline on Aug 11, 2020 12:49 am

My doctor told me when I was diagnosed that these are my cells they are not aliens from outer space. So how couldI battle with myself? How could I be a warrior against myself? Nope not for me. I can appreciate journey what do I want in my life and what do I not want. Life is precious to me.

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Indigo10 on Aug 12, 2020 2:12 pm

I loved your analogy Rayline. Great insight.  Thank you
 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Boby1511 on Aug 14, 2020 4:28 am

I usually think of it as the cancer train. Course I am terminal. 
I too don’t like the “stay positive” chat. Like I did something negative to attract cancer. Positive vibes are not going to save me. Why remind me?
perhaps people should just say “stay distracted”.
i get that people don’t know what to say and most people are genuine and want to soothe.
i too would not have the right words. I can’t quiet my own mind most days. I try to stay distracted. Course I’m terminal so perhaps my perspective is not the norm.
 

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Lacey_Moderator on Aug 14, 2020 8:52 am

Boby1511‍ - There is definitely pressure to "be positive" when you are diagnosed with cancer. Your point of view makes sense negativity didn't cause it, so how can being positive cure it. 

What about this instead?

Seek out the positive. Spend time with people who make you laugh or do something that makes you feel good. Many people find that spending time with pets helps them feel calm and more positive.Seeking out things that make you feel good can improve your quality of life. 

My wish for you is to have as much joy in your everyday as possible. Whether it is comfy pajamas, a chat with a friend, or a cuddle with a furry pet. 

Lacey

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by Boby1511 on Aug 14, 2020 9:24 am

So sometimes I inappropriately tell strangers I’m dying... I think I get a sick pleasure in their discomfort... usually only when I’m cranky... not when I’m sad as I’d cry... Got an early am call about the medical equipment and I told the poor guy. Found out later he’s new.. feel a little bad for him... it’s a job. My bad. I should apologize... I did explain I’m tired... my bad

Re: What's OK, not OK, and more than OK to say to someone with cancer?

Posted by SpeedyStill on Aug 14, 2020 12:51 pm

Boby1511‍ 
Our mood, our pain level, our worry about what happens when we pass, which some are told but everyone diagnosed with Cancer deals with as a possibility, can affect how we give and how we react to words.
When I am tired, in a lot of pain and depressed it is best to stay away from me, the best words don't come out of my mouth and I am ultra sensitive to words spoken to me.
To add to what Lacey said keep everyting that make you feel good close and everything that desturbs you far far away.
Our body will tell us what is needed, so we should listen.
Speedystill