I’m a firm believer that saying something is better than nothing. All too often people are afraid of saying the wrong thing to someone dealing with cancer that they don’t say anything at all. It hurts. You feel invisible. While their heart is in the right place and they may just not know how to help, to the patient and their family it can feel like life goes on while their life has been brought to a dramatic halt.
I started a support group several months ago for “Young Cancer Wives”. It’s a safe place where we can bitch about our lives and our sick husbands without looking like a heartless, self-absorbed spouse. It’s been amazing as we find each other and can let our guard down, something you rarely can do as a caretaker. As a caretaker you can never handle the guilt of adding one more thing for your sick husband to worry about— especially if it’s you.
So I used this group of brave women to help me come up with a list of things that have been said to them and have been so wrong, so wrong that I get why some people just stay quiet.
So if you’re struggling with knowing what to say and how to help, here is a list of things to avoid when someone you know is facing cancer.
“While very well intentioned, it was not helpful when people said “let me know if I can help”. I was drowning in appointments, medications, kids, job, bills, trying to remember to take the damn trash cans out… Just drowning with everything and someone vaguely and breezily saying that was the opposite of helpful. The people who brought us dinner without me asking, who dropped off a stack of magazines, sent us an Amazon gift card with a list of funny movies…that was helpful. So the lesson I’ve learned is that when someone is drowning, they don’t even know where to start asking for help so don’t bother asking… just DO SOMETHING.”
“‘I hear Vitamin C infusions cure cancer!” (or turmeric, or any other of the 29047290749017234027345 suggestions folks make to us). I also have gotten, “So, you guys won’t be able to have kids then? I guess God didn’t want you to have any!”
“One thing that struck me was how many people just disappear. Maybe they don’t know what to say or do or they are scared but it was so hard that so many people dropped off the face of the earth after learning about cancer.”
“I hate it when people ask hubby’s prognosis or “how long does he have?”. I just laugh, should’ve been dead 2 1/2 yrs ago, but he’s not. Guess drs. don’t know it all. lol.”
“It was really hurtful how many of our “friends” totally disappeared after the diagnosis. A very small few really stepped up and were amazing but I bet 80% dropped out of our lives. Maybe they didn’t know what to say or do, maybe it was a harsh reminder of their own mortality, maybe they were just busy, who knows. But it was incredibly hurtful.”
“I had someone say to me, “you are young, you will remarry and bounce right back” seriously? Bounce right back? Ever had your heart ripped out and stomped into one million pieces? That’s me.. And I’m still working on finding all the pieces.”
“I hate hate hate when people ask “what can I do for you?” Just flipping do something. I am balancing and doing it all! I don’t have time or a chance to even think what you can do.”
I’ve had a lot of weird things said to me too. Joe used to hate when people said, “You look so good!” He’d say, “for a guy who is dying?” Eeekk… talk about uncomfortable.
The truth is though, even the people who said the wrong thing, I was glad they said something. I loved it when a girlfriend came to be with me for the weekend and she said, I know I’m going to put my foot in my mouth at some point and I just want you to know I love you and I want to be here for you.”
It meant a lot to me. Moral of the story is, people need you and you make a difference. Say something, do something. Cancer sucks and it can happen to anyone.
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So happy you can verbalized what so many think/feel. God bless you.
Thank you. I have three very important people in my life with cancer and I am doing the right thing now that you just told me this. I just keep trying.
My husband died five years ago of cancer. Our daughter was three. The thing that infuriated me the most, particularly after he died, was when people would tell me Mike’s death made them appreciate their spouse even more. Or they were going to hug their husband a little tighter tonight. I don’t know why but those kind of comments made my blood boil. I wanted to say “Good. You go hug on your husband. Mine’s dead and I can’t.” You and your daughter are in my prayers.
Amanda you are a great writer and I hope you put this all together in a book. I think so many people would like to read it and it would help so many. I hope you are ok and have people around supporting you and your beautiful daughter.
Sometimes people feel like they don’t have a voice. (Because of many reasons). You are helping those people have a voice and showing them that voice matters. Thank you.
I just love my soulmate/husband of 30 yrs in September 2014. I have been told ALL of the above. Yes he was only 49 yrs old, too young to be taken by this horrible disease CANCER. Thank you for this article.
Way too young.
How can I join your group? I could really use the support/outlet and would love to provide the same to others. My husband is battling stage IV colon cancer and we have an 8 month old son.
Karla I’m so sorry you’re dealing with this. Are you on Facebook? If you are go to the Cocktails and Chemo page and private message me. I’ll add you to the group right away. Sending my best!
GREAT advice!!!… Just “DO something”!!! Sending you and Mira extra hugs and love today… Keep writing… Keep letting us know what WE need to be DOING for you, and all cancer victim’s and survivors! <3
It is hard and I dealt with it when my daughter went through colon cancer at the age of 27. Thankfully she is a survivor but you are right, the people that just showed up and helped were the ones I appreciated!
I thought you were a writer ! Your words are felt so deep and strong as they flow through your blogs .
Amanda , Thanks so much for sharing. It is so helpful for those of us that want to help, and feel we are helping by offering our assistance. You’re doing great things by continuing with this blog and starting a support group for those traveling such a scary unknown journey. While I’ve never met you or Joe, but I’m confident he is beaming with pride.
As a three time leukemia survivor I agree with parts of this and disagree with others. I believe it’s a little different for each person. I liked when someone told me I looked good when I felt like crap. It was uplifting to me. I do believe people need to think before they make comments. I too heard some really stupid comments. I agree people/friends disappear. I would like to know why. But only they know why and I pray the same does not happen to them. I believe in staying positive but being realistic when facing cancer. Very nice to read your thought and insights.
Not only young wives grieve–open your support group to all wives–my heart has also been shattered as well as my world-I lost my husband of 35 years after a 9 year cancer battle–he outlived his life expectancy by 6 years. Most of his battle was fought as he was strong and fairly healthy even though his stomach, part of his intestines and esophagus were removed early on–the last 2 years were brutal. Easy comfortable words that take away the pain or the weight of the responsibility before, during and after the passing of a spouse do not exist. The process is cruel and unforgiving–my only peace comes from knowing that he is no longer fighting that losing battle. My world is forever altered. He set he bar really high–he never complained, he never asked ‘why me?’..he marched through the valley of death with his head held high. I feel guilty in the wake that I have had trouble doing the same thing.
I’m so sorry you’re feeling so low. You are stronger than you think. Just expressing your pain shows that— sending you a virtual hug!
Thank you. You are amazing.
Amanda you and Joe continue to inspire SOOOOO many! Your courage and confidence amaze me! Keep on keepin on girl! You and Mira and Joe with the BIG man upstairs …..you are an amazing team!!!!!
Damn it. I’m guilty of “what can I do to help.” My intention was to try to put the other person first instead of being presumptuous about what they might need/want. Hadn’t considered that I was just adding another demand. Thanks for the heads up.
I only found your blog a few months ago. Add me to the legions who think you and Joe handled his illness and death with a grace and courage that are truly inspiring, and you are bringing the same as you learn how to live without him. Although I only “know” Joe from this blog, I think he’d be proud of you.
I have been lurking in the shadows since the early days of Joe’s battle. At the same time, I was on a virtually identical journey with my wife of thirty-five years. Like you, and like so many others, I have been surprised (angered and dismayed) at how quickly people moved on or simply disengaged after her death. The first to go were those who most sincerely assured me they would ‘be there’. Next to go, were those who became impatient with my inability to ‘move on with life’ three months after her death (And, like you, I can’t even find all of the pieces of my life.). It is hard not to be angered by their abandonment or by their empty reassurances. At the same time, I realize that I have become the embodiment of what they fear most…their own mortality and the mortality of the ones they love. I have no advice for you Amanda. I’ve never previously walked this path either. Sadly, we must learn as we travel. Sadder still, we are finding that we are (unexpectedly) solitary voyagers on a pilgrimage we did not choose to take.
So true this hit home. My hubby too has stage iv colon cancer. He was diagnosed almost 3 years ago at the age of 53 1/2. Some may feel this is old but we do not. We were living a full life, just became empty nesters,excited about our future. He had his first colonoscopy at 50. Literally shocked when diagnosed with stage iv. At this point still in treatment and doing well.
As a caretaker I can also relate about the feelings and emotions. So glad I came upon cocktails and chemo.
Great advice on don’t ask, just do!
Great post. This will be so helpful to so many people. I always seem to be the patient and not the caregiver (I often believe mine is the easier role), but I am supersensitive to what caregivers live with and go through. Keep on keeping on, girlfriend.