My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Friday, January 23, 2009

Talking With Your Children

CR Magazine is a new magazine published by the American Association for Cancer Research. The magazine seeks to connect groups of those affected by cancer in a collaborative effort. The CR stands for Collaboration->Results. It will take all of us affected by cancer; patients, advocates, caregivers, healthcare providers and researchers working together in a collaborative effort to one day see to see results, to see cancer defeated. I believe in the premise. I subscribe to and love the magazine.

The winter issue that was recently published had a great article: Talking With Your Children . The article advocates having an open dialogue with your kids about your cancer. I agree whole-heartedly.

Talking to my kids about my cancer diagnosis was very difficult. We all want to protect our kids from pain, we want to provide them with a stable and nurturing environment, we want for them to feel safe and secure. Telling our kids that we have a potentially life-threatening illness is very difficult. It causes them pain, it disrupts their sense of safety, it makes them feel insecure. When we tell our kids we have cancer, we cause them to have feelings that we as parents have always tried to protect them from. Its hard.

My own kids were 10 and 11 when I had to tell them I had cancer. I did keep the information age-appropriate, and I was as honest as I could be. I told them I had cancer of my appendix, that is was serious and that I was going to get the best treatment I could find for my disease. I didn't tell them I'd been told I had a very poor prognosis and had very limited odds of surviving even three years. They didn't need to know that at the time. But I didn't promise them I wouldn't die, either. I just told them I was going to do my best to live a long time; that was true.

I went to their school to talk to both of their teachers to let them know I had a serious cancer, would have to travel across the country for surgery and that I would be gone for several weeks. I asked the school to please let me know if my children developed any problems.

I let my kids know they could talk to me any time about how they felt or about any fears they had. I also told them if they wanted someone else to talk to they could talk to their dad or grandmother. I told them they could also talk to their teachers, that their teachers knew. I offered to take them to a counselor if they felt they needed that.

After I told them, one of my daughters woke up several times sobbing in the middle of the night. She'd climb into my bed telling me she had dreamed that I'd died. I couldn't tell her I wouldn't die. I instead told her to look at me, that I was doing well, and I was getting very good care. That seemed to be enough at the time.

It was tough.

The one good thing was that my cancer was rare. My kids went to school and told all of their friends their mom had cancer. Over the lunch table they heard many stories from children who had lost grandparents, aunts and uncles to cancer. They came home uplifted, though...not one friend had lost a family member to appendix cancer, only to brain and breast and colon cancers. None of their friends had even heard of anyone dying of appendix cancer!

I've communicated with other appendiceal cancer patients who have only told their children that their mother had a "really bad tummy ache" and needed to see a special doctor. I kind of wonder if the kids didn't already know their mothers had cancer...I know in my own house the phone rang off the hook at first, the kids saw their dad crying for the first time, flowers came to the house from many people, there were messages on the answering machine for my husband "We are so sorry". I can't imagine with all of the cancer talk at my house that they wouldn't have somehow overheard the word and known that their mother had cancer. And if my kids had thought they weren't supposed to know, they wouldn't have had the opportunity to talk to my husband and I as they did about my diagnosis, they'd have lost that opportunity for support. I wonder sometimes if the kids who were spared the truth developed a terrible fear of stomach aches for the rest of their childhood?

There's a link to another article, Losing a Parent: How do you prepare kids for a parent's death? at the main article's side bar. I've known several appendix cancer patients who have died leaving young children behind. One parent was a hospice patient, and the nurse helped the kids and the parent work together to make a "Memory Box" of mementos for the child to treasure. I've communicated with several parents of small children who have lost their battle, some have left memory boxes, one wrote her child a letter he can read when he is older. I know of a family with 5 children who lost their father to a house fire...the mother found a non-profit program (Rainbows)that helped children who had lost a parent. I know those kids now, years later, and they are doing well.

I know our cancer diagnoses are difficult for our kids, but I also know now that in the end the experience helps shape their character. My kids now have great empathy for those affected by cancer. They do speeches at school advocating cancer research and telling our story, they have friends over to make appendix cancer ribbons to distribute.

I've learned that kids are resilient. They are stronger than we know.

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