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Cancer caregiver advice on what to say and how to help

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Gibbs family CW.JPGBy LeAnne Gibbs

It seems that something about cancer affects our filters/manners/politeness, and in an effort to say the right thing, we say exactly the most awkward, wrong thing. I, myself, have been guilty of not knowing what to say or saying the wrong things.

I've perused the web for intelligent advice on what to say or not to say to someone with a terminal cancer diagnosis.

My husband, Francis, has terminal stage IV colon cancer, so I have some experience under my belt as well.

Here's what we've found most distressing or helpful. 

"This really sucks ..."

We agree, and it's always nice to know others hate this as much as we do.

"I don't know what to say ..."

Frankly, many times Francis and I don't know what to say to each other, our families, our friends and our colleagues, etc. Being honest about not knowing isn't awkward at all.

"Is this a good time to talk about it?"

For us, each day is infected by cancer. We can't take a vacation from it. Sometimes we want to talk about it, and sometimes we want to ignore it, try our hardest to reach back to what normal was and feel that way again - even if for just a moment.

If you have questions, by all means ask, but understand -- and take clues from how much detail we disclose in our responses -- that we may not feel like sharing or we may be in the mood for a mind dump. 

When in doubt, ask if it's a good time.

Don't pity us, and don't ignore us. 

We don't need to hear how sorry people are for us because we hate this, too. Having people tell us, "I'm so sorry" leaves me in an awkward position of not knowing how to reply.

The strange thing about cancer is that every diagnosis, every type, every individual with the diagnosis is unique. 

It doesn't affect two people the same and no two people react to the diagnosis and/or cancer treatment the same.  

Then you throw in family and close friends and experience, and it's equally unique.

As a result, cancer is a disease that's painfully isolating. It isolates you from family and friends because recovery from surgeries and treatments requires quiet and rest and avoidance of germs.  

It has isolated us from each other because, as much as we are together in this, only Francis knows what it feels like and only I understand what it is to be his caregiver and the one facing a future without my best friend and the father of our children.

Please don't ignore us because you don't want to discuss the details or because you don't know what to say.  

We appreciate the effort to reach out to us or keep in touch even if we don't always or ever respond. Each of those contacts remains a chain to a world where things aren't as painful, sad or dark, as our world sometimes feels.

"Let me know how I can help ..."

The outpouring of offers of help from family and friends has overwhelmed us. I promise that if there's something we need we'll ask. 

Please understand that we aren't blowing you off if we don't ask. Sometimes it's exhausting keeping straight everything I have to do for Francis and our children.  

Having to think of something I or we may need immediately sends my sleep-deprived and emotionally drained brain into the blankest of modes.

I'll be honest: I feel guilty about not being able to let people help or do more. I know family and friends feel guilty about not being able to help us more.  

Let's agree to stop that guilt. You can know we'll ask, and we can know you'll accept when we come across something specific to do. Deal?

LeAnne and Francis Gibbs live with their two young children in Tallahassee, Florida. They share their journey with Francis's aggressive form of stage IV colon cancer on their blog, Our "Semi" Colon Life.

Related Story
A caregiver's advice: How to help a dying patient's family

Resources
How to talk to a child about loved one's death (podcast)
Patient and family support at MD Anderson

1 Comment

Thank you so much for your post. Sometimes I feel like I need to print something like this out and put it on a t-shirt. This has been a very isolating journey for us, as well. I'm so glad to find this community where we can honestly say how we feel. Thanks again for sharing your heart and story.

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