I have had lots of well meaning people say stupid things to me since my diagnosis. For the most part, it's not their fault. Unless you've had a late stage cancer yourself, you don't get it. Of course there also have been some comments that you would think common sense would prevent, but it doesn't.
1. You look great: Would you have told me I look great if I didn't have cancer? I'm not wearing any makeup, my hair hasn't been combed in two days, and I'm wearing my bathrobe. I look great? This goes in the same category as "You don't look like you have cancer". What is that supposed to look like? Tell me I look better than the last time you saw me, or you like my haircut, or I have more color in my cheeks than usual. But unless I look like I'm ready for a night out on the town, don't tell me I look great.
2. Think of how many lives you're saving: I tested positive for a gene mutation that increases your risk of stomach cancer to 80% (I'll blog more on that another time). This has necessitated several relatives being tested. It has also been very emotional for me. During one of these emotional times a relative said,"Think of how many lives you're saving". I wanted to yell, "Most likely at the expense of my own! Why didn't I get a chance for preventative surgery? It's not fair and that was a stupid thing to say!" This is somewhat of a unique situation, but I think that if you must say something, "I'm sorry you have cancer" is the only way to go.
3. You can beat this: Actually, barring a miracle, I probably can't. Beating this type of cancer at a late stage means living with it for five to ten years. That's beating it. "When this is all over" goes in the same category, because when this is all over, I'll probably be gone. When you say this, it only reminds me that I have a terminal illness, which is unhelpful since I've put a lot of work into changing my automatic thoughts from "I'm going to die" to "I have a chronic illness". Again, I'm sorry you have cancer is acceptable. Or ask about the progress of my treatment, for some this might be unhelpful, but I'm perfectly willing to talk about it.
4. Let me tell you about my ________ who died of cancer: Ok, so maybe you know or knew someone in my situation, but especially with a rare cancer, this is unlikely. Even if it was the same type of cancer, no two cases are exactly the same. If your loved one was treated ten years ago at some rinky-dink hospital, their treatment and prognosis is not going to be anything like mine, as I am receiving the most promising treatment out there at one of the top cancer institutes in the world. One of my colleagues told me about her friend and brother who both died of cancer. In detail. Then she said,"I'm certified in Reiki, so if you ever want me to bring in my table, I could do some Reiki for you after work." What? I'm not a Reiki Master, but I do know it's all about positive energy, and I'm not getting any from you.
5. Did you ever think this would happen to you: Sure. That's why it wasn't caught until stage IV. This is just stupid. Even though I've always been a bit of a hypochondriac, I didn't really think I'd have stage IV cancer. In this day and age, I thought all cancers got caught early. Again, just say,"I'm sorry you have cancer".
Ps. I'm not kidding, as I am typing this post, another relative passed on the message about my saving so many lives. Again, I appreciate the sentiment and they mean well, but I just want to scream, "Why didn't I get that chance!"
Yet another comment from a relative that applies to #2 on this list: "You're like the canary in the mine for all of us."
ReplyDeleteHello! The canaries die! Not helpful! Again, "I'm sorry you have cancer. (Let me clean the kitchen for you.)" is all you have to say.
Well done. My son was diagnosed with stage IV Wilms Tumor in 2009. Today, after chemo, surgery, and radiation, he is a survivor. I can't begin to tell you all the gaffes that came out of people's mouths during our struggle. "How much of his liver did they take out?" "Why didn't you catch it earlier?" (Not kidding). "What percent chance does he have of surviving this?" "Is the cancer gone? Will it come back?" All well meaning, but all insensitive and, frankly, dumb. Loved your write up, but it would be helpful to include the questions or comments that helped you, made you feel better, lifted you up. "I'm here for you" and "Just let me know how to help" were good ones for my wife and I.
ReplyDeleteThanks. What is most uplifting for me is when people treat me like they did before I had cancer, talk to me about their day, etc. my family and friends also post pictures on Facebook on my treatment days and that makes me feel very comforted and supported.
DeleteAs a caregiver I can relate, I got the if you dont use---------- you are letting your daughter die. Tell self, this idiot thinks pot is a cure, he knows more from the internet than all those scientists who spent years studying?
ReplyDeleteYes! Someone told my husband that apricot seeds would cure my cancer. I consulted my nutritionist who told me that apricot seeds contain arsenic and therefore they don't recommend it for anyone, least of all cancer patients.
DeleteIt seems like everyone has some non-traditional method that is BOUND to be better than research-based drugs... "why don't you go to Mexico (or Canada) for treatment?" are always appreciated suggestions.... what makes you (the one with the suggestions) have so little confidence in my MD who you have never met?
DeleteThe above was spoken with extreme sarcasm
DeleteYes! I've been told I'm lucky that my hair is only thinning. I'd give up hair forever if that would improve my prognosis even slightly!
ReplyDeleteI am not in my 30's. I was 58 when diagnosed with stage 4 lung cancer. It would be harder to accept if I was in my 30's, I am sure, but still I get many of the same idiotic statements, especially the one about how great I look. (Especially since most everyone expected me to be dead by now)
ReplyDeleteThe comments I prefer are ones like, "I pray for you every night" or "would you enjoy going out to dinner" or somesuch. Even, "I am so sorry" works!
I was 37 when I was diagnosed with my first of 3 cancers in a1yr period. Most often I received the " but you don't look sick "! I got so tired of hearing that... I have 3 children, it's not like I can just roll over and die. The other was " i'm sorry " you didn't do this to me... Why are you sorry!!! I don't want your pity, I want to be healthy!
ReplyDeleteThat was what led me to write this blog, "I don't want your pity!"
DeleteMy favorite (or should I say least favorite) bonehead casual comment was, " So, what is the survival rate for your cancer?" Not the thing to say!!
ReplyDeleteDing ding ding... and the number one dumb ass comment.... "could have neen worse, at least they caught it in time." Time for what???...freggin' dinner????
ReplyDeleteThis is NOT a club you want membership in. There, I vented.
Three year stage 2 breast cancer survivor.
You are all in my prayers. AMEN.
Diagnosed at 31 and heard so so so many of these! I think someone should publish a book of what not to say! You all are in my prayers.
ReplyDeleteMy husband was diagnosed with Colon Cancer Stage IV. It took us months to get treatments approved. All we get is "Well, be thankful it is all free", "Be ready for death", "Your husband cannot do a thing, put him away", "Make sure you get the $ when he passes away and our church receives its dues"... So many, things I don't even want to mention because they sicken me.
ReplyDeleteThose are awful comments! I'm so sorry people said those things to you.
DeleteI get a lot of "its only temporary." I hate that because it feels more like brushing my cancer under the rug than actually acknowledging how much the situation sucks.
ReplyDeleteI love this article. I was diagnosed with Color Cancer Stage 4 in March. I am 37 years old and so many people told so many crazy ways to feel better!! Thank you for writing this article and this blog!
ReplyDeleteThank you for your feedback!! This is the type of comment that keeps me going!
DeleteI can understand the various comments. I was diagnosed in 2012 with stage 2B stomach cancer and had my total gastrectomy. Luckily I did not encounter any comments which offended me during my treatment and post chemo-rad phase. Most of the comments were supportive and I took them in a positive way. I lost around 100lbs and that surprises people when they see me or didn't know about my disease. Reactions go from 'what did you do to lose weight ?' 'I cannot recognize you' 'You look like college kid' etc., I mostly laugh it off, except for the first question. For which I answer, 'You really don't want to lose weight the way I did', it is no fun.
ReplyDeleteI've also had comments about my weight loss. I really don't recommend stomach cancer as a diet strategy.
DeleteI enjoyed your article.I was 37 when i jumped in at stage 4 breast cancer.I got lucky and went into remission for a while.
ReplyDeleteThe comment that most surprised me was from someone who is very intelligent and has extensive experience with health issues"but i throught you were better...." she also suggested apricot kernals
People mean well but they area bit lost, as ofen no one, including the patient knows quite what to say-it generally feels like you are supposed to say nothing or "i am fine"
That is why writing like this is such a good idea as it brings things into the open rather than putting massive effort into pretending we are normal
I think the best/worst we heard was "Why are you still working when you have cancer?" Unfortunately we still have to pay the rent/poll tax, we have to eat and pay the gas & electric bills, unfortunately they don't stop just because we're ill & that's why we're still working when we have cancer.
ReplyDeleteIn addition to paying the bills and the fact that I like my job, I think it's better for my physical and emotional health to work as much as possible.
DeleteOne question that always gets to me, being stage IV, is when people ask over and over again " So, how many more treatments left until you're done?" My response "I don't know. Hopefully the next cycle of chemo will kill the cancer for good." I guess the question just reminds me about how I honestly don't know if I'll need 1, 5, 15, 30 more treatments or if I'll need treatment for the rest of my life, if my body will hold up through all the chemo treatments, survival statistics, whether or not the chemo will work or stop working, my options, the effects to my family, bleh, I'd rather not be reminded by this every time they ask that question. Just ask "How is treatment going?" Simple, and I will tell you as much or as little as I'm in the mood to tell. Oh, and don't follow that question with how things are going between me and my ex since the break up 3 months ago. This just opens up another can of negative emotions.....BLEH! I guess it's not their fault, they just want to know how I'm doing, just wrong timing I guess.
ReplyDeleteHow is treatment going and how are doing are great, because it lets me give as little or as much information as I want. And you're right, don't ask me how many treatments I have left. There is no answer to that. It's what's keeping me alive, so we have to just keep plugging along.
DeleteI totally get your frustration. I was diagnosed in 2011 at Stage IIIb, with Carcinoid/Neuroendocrine Cancer. Chemo doesn't really work all that great, on my rare & "slower-growing" cancer. Or, it wouldn't in mysituation. What really annoys me are the folks who'll say, "well at least you got the GOOD kind of cancer!" I'm sorry. WHAT?! Is there really such a thing as a good kind of cancer?! Because I've not had chemo, I still have my hair. So, I guess I'm not suffering because I still have a head full of hair. Meanwhile I have bone metastisis which cause horrific pain, but my hair is all that matters. Most of the time, I think people mean well....but really wish they would think before they speak. Best wishes to you, in your battle. Fight on!!!
ReplyDeleteYou too! Fight, fight fight! I think it's tough when you have a rare type of cancer. People are used to hearing about treatment that involves a specified number of chemo cycles, surgery, and radiation, in some order. When you tell them your treatment plan is different, they don't get it.
DeleteA long time friend told me, "at least yours can be cured and your not dying."????????
ReplyDeleteYes, because no matter what the outcome/prognosis is, surgery, radiation, and chemotherapy are all such fun!
DeleteI was in bed on one of the days when the chemo kicks your ass a couple of days after recieving it and leaves you wrecked until a few days before the next cycle, My next door neighbour standing in her back garden calling my name I got out of bed covered my bald head with a base ball cap and looked out the window she shouts up "do you like my hair? I got a colour put in it today"
ReplyDeleteOh boy. That is a funny/stupid in so many ways!
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