Will you have it forever? (re-post)

October 17th, 2014 § 11 comments

My last post (“The Hardest Conversation”) showed you what a conversation with my teen daughter was like when we talked about my diagnosis of metastatic breast cancer in 2012. Today I wanted to share a conversation with my youngest child (now 8) that happened last year so you can see the variation in what their concerns were and how I dealt with each one.

As always, with cancer, age-appropriate explanations are important. Another vital piece of advice I’d like to share is that with all children, but especially young children, it is important to talk more than once about the topic. At the end of the first conversation I recommend asking young children, “Can you tell me what we talked about today?” to see if they have absorbed the most important pieces of information and that these pieces are correct. A day or two later it is always a good idea to ask, “Now that you’ve had time to think about our chat, do you have any questions?”

The following post was written in late 2013 on the eve of the surgery to put my medi-port in.


IMG_0155“Why do you have to have surgery tomorrow?” seven year-old Tristan asks from the back seat after we drop off his 11 and 15 year old siblings this morning.
“Because I need to have something put in my body called a port. It’s a little container made of something cool called titanium that lets the doctors put some of my medicines into my body in an easier way.”
“Can you see it?”
“Yes, you will be able to see that there is a lump under my skin, about the size of a quarter. But you will only see the lump. You won’t see the actual thing because that will be inside my body. You know how I have the scar on the front of my neck? It will be like that, here, off to the side, same size scar but with a bump under it.”

“Is it like the bubble I had on my neck when I was a baby?”
“Well, that was a skin tag, so that was a lot smaller. And they were taking that away. This is something they are putting in to help make it easier to get some of my medicines. And you know when you go with me and I have blood taken from my hand? Well now sometimes they will be able to just take it from there instead. So it helps with a few jobs.”

“Will you have it forever or do they take it out when your cancer goes away?”

(Driving the car, trying to keep tears in check, knowing this is a vitally important conversation. I’ve explained this to him before but I know it’s hard for him to understand.)

“Well, honey, remember I had cancer when you were a baby? Well, this time the cancer is different. A lot of the time you can have cancer and the medicines and surgeries make it go away and it stays away for a long, long time. Maybe even forever. Sometimes any cancer cells that might be left go to sleep and just stay that way. Sometimes you have bad luck and they wake up. Mine woke up after six years. And now the cancer cells are in places that I won’t be able to get rid of them all for good. I am always going to have cancer. This time my cancer is the kind that is always going to be here.”
“You’ll always need medicine. And the thing they are putting in?”
“Yes, honey, I will always need medicine for my cancer. And I will probably need to have the port in forever too.”

Long silence.

“I am glad you are asking me questions about it. I want you to always ask me anything. I will try to explain everything to you. I know it’s complicated. It’s complicated even for grownups to understand.”

Long silence.

“Mom, did you know people whose eyes can’t see use the ridges on the sides of coins to tell which one they are holding? So if you have a big coin with ridges that person would know it is a quarter?”
“That makes sense. How did you learn that?”
“At school. And so if it’s smooth you know it’s a nickel or penny. It’s important that they know what coin it is.”
“I think you’re right. That is very clever.”

( I stay quiet waiting to see where he will take the conversation next.)

“Remember when my ear tube fell out and was trapped in my ear and the doctor pulled it out and I got to see it? It was smaller than I thought it would be.”
“Yes, I thought the same thing.”
“I really wanted to see it. I wanted to see what it looked like.”
“Me too.”
“Can you show me a picture of it?”
“Of what?”
“The thing for tomorrow.”
“The port?”
“Yes. Or don’t you know what it will look like?”
“I know what it will look like. Sure, I will show you on the computer after school.”
“It’s time for school but I am glad we talked about this. I want you to keep asking questions when you don’t understand something. I love you, Tristan. I hope you know how much. I know this is hard for all of us. I wish it were different. But we are going to keep helping each other. And talking about all of this is good. We can do that whenever you want.”

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§ 11 Responses to Will you have it forever? (re-post)"

  • Steph VW says:

    Thank you so much for posting this. My 5-year-old son and I just finished reading a book about Terry Fox as he had participated in his very first Terry Fox run at school last month. There’s a drawing of Terry’s lungs with the cancer in them portrayed as green monsters (the book was written in the 1980s). I took the time to point out to him that cancer doesn’t look like that. We used the opportunity to talk about my mom’s cancer (she died long before he was born) as he often relates these things to her. I keep things very simple for him and while he responds to some concepts with “Oh”, I can tell he’s digesting what I’ve said and will come to me with questions later. (I’m writing this assuming that everyone knows Terry Fox’s story.)

  • Kathleen says:

    How tuned in you are to your kids’ needs is just breathtaking. It is a rare gift. I love all the more that you share these stories because it gives people a script from which they can model & talk to their kids. Thinking of you, Lisa. (Follower for a couple of years who seldom comments, but always reads with appreciation.)

  • Elizabeth says:

    I think this must be one of the hardest conversations a mother ever has with her children. Thanks for a blueprint on how to do it.

  • Rebecca says:

    Breaking things down step-by-step I think is important. CANCER is big and scary, but that one piece, that procedure to get the port he could maybe understand. Understanding that piece, and deep down knowing what it’s for… it’s sad, but I think it has to help everyone who knows you closely to understand some things too. It’s a visual reminder of the reality of what you are coping with every day.

    My husband had a port last summer (2013) and fall. It was temporary fortunately, but we also took the time to explain to our daughter what was happening. I absolutely agree that it’s important to explain these things to kids, and also let them lead the conversation too. Don’t let them avoid it completely, but give them some space to ask their questions, and figure out how much they can absorb at one time. Eventually they put the pieces together and start to see the bigger picture.

    Tristan and my daughter are in the same grade. I am always so grateful when you post about him and his experiences. Thank you for reposting this Lisa.

  • Beth Gainer says:

    Lisa, you are an awesome mom.

  • Babara says:

    Dear Lisa,

    You are so good with your children. Talking to them-keeping things honest, real and open. It’s wonderful.

    Thinking of you.

    Barbara S.

  • Silvia So says:

    You are so wonderfully smart, Lisa.
    Thank you so much for all the sharing.

  • Jan says:

    I have followed your blog for over a year – I enjoy your posts. We have an extended family member who was diagnosed with Stage 4 breast cancer in August of 2013. While she is currently in remission, her experience with this monstrous disease continues daily. I appreciate the stories you share of your own experiences while living with this disease. I just wanted to thank you.

  • Janie says:

    You are so full of wisdom. I had tears running down my face reading the truly honest talk you had while driving. I’m feeling so angry you have to have these talks with your children. You are much braver than me. Be proud of your writing in this blog. You should put it in a book and publish it. You are not only brave but brilliantly guiding many others. God bless.

  • Margita says:

    I really respect how you talk to your kids about the hard stuff.
    Hope next week is better for you.


  • Tom Rose says:

    It’s amazing how you talk to your child. The way you explained things, especially to your 8 year old son is very clear and I know your son is smart to understand what you said.

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