Telling the children

In reponse to a question from another Metastatic Breast Cancer Babe, about what to say to her kids.

I was diagnosed with cancer the first time when my daughter was six, less than three months after her favorite aunt had died of ovarian cancer at age 44. My cancer was the opposite of your early stage cancer - Stage 3C, with lymph nodes involved (I found it myself from an enlarged lymph node), also under my collarbone, very aggressive cancer cells. We tried to keep Tess informed of what was going on, at a level that a six year old could understand.

My first recurrence was three years later, and since then I've been through three more rounds of chemo. We've dealt with two brain tumors (and two gamma knife surgeries) and most recently bone metastases. The cells have been decent enough so far to stay out of my liver and lungs, the little bastards. Total = one mastectomy, seven weeks of daily radiation, two gamma knife surgeries, and four rounds of chemotherapy. Nine cancer treatments, not including such minor details as surgery to install a Port-o-cath. Twice. Blood draws. MRIs. CT scans. Blah, blah, blah. Every time, we ask Tess what she wants to know about it. She is now twelve, and mostly does not want to hear a lot of details. TEENAGER.

So I ask a lot, a lot, a lot of questions. "Do you really want to know?" is the most useful one. I also offer information. I don't elaborate if I don't get a response. The messiest one recently was when she asked what the pink thing on the fridge was, and I explained about a POLST form, and what a DNR was. It was a mistake not to say - are you sure you really want to know?

You never know what they are thinking, nor what they fear. Tess kept coming in, initially, and checking on me, when I was first diagnosed. After five months, we realized that it was because her aunt, from her perspective, had died with no warning. Tess saw her aunt on Sunday; the aunt went into the hospital Monday. They first used the word hospice that night. The aunt never came out of the hospital, and died on Thursday...so Tessie's experience was that someone with cancer could be fine on Sunday, and die four days later. She was coming in to check on me, the way a mom does with a SIDS baby. She was making sure I was still alive. When she was six.

So my only advice is offer information anytime anything changes, but don't force information on them if they say no. And I prefer to give them slightly more than they want. If they ask a question, try hard to answer it, without the scariest bits. I hope this helps. It is one of the hardest parts, any time you are a cancer patient with children.

Love,
Chris