The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Monday, March 10, 2008

From the mouths of babes...

I am sure you all have (or have heard) stories of kids saying the wildest things - profound observations of the reality they see, or naked assessments of those realities in the words they have heard their peers and family members use. Some of these child-remarks are so poignant as to bring you up short, stopping you in your proverbial tracks (physically and emotionally), and some are so funny that you nearly choke with suppressed glee. I love to hear their innocent words - they challenge my world-view in ways that adult-speak cannot.

Cancer. There, I said it. It alters perceptions, it alters expectations, it can suck the stuff of living out of a family, a neighborhood, a small person's world. You are probably tired of my repetitive focus on this word. We who share a path with children will go to great lengths to care for their views of cancer and shield them from too much exposure to the potentialities of a cancer diagnosis. I cannot say how anyone should (or shouldn't?) broach this topic with children, but I have a couple of ideas to share about a recent experience in CancerWorld-Ed. Maybe there is an insight here that you might find useful...

(1) I felt lucky that some dear friends had (unfortunately) just gone through a similar journey with cancer, that that journey was ultimately positive, that they were so open with us about their struggles and successes, and that my daughter had a chance to support her friend as she went through the same thing that she was now experiencing. But I am so sorry that this had to happen to them.

(2) I was so heartened by her ability to see the cancer treatments as something separate from Daddy, that she could accept my fatigue, frustration and shortness as symptoms of those treatments, and that she was (and remains) so brave in the face of an unexpected and unpredictable change to her world. She and my wife are my heroes, and I am sure that I didn't tell them that frequently enough.

(3) Just the other day through a remarkable after-school conversation, I was surprised and somewhat saddened to learn that she had the idea that cancer was communicable - that she thought she might "catch" cancer from me. This bolt from the blue was so surprising to me, and my initial stunned response - that we sure can learn good stuff from books and in school - seems pretty lame. She learned this by reading from a book, at school, in the third grade. This is a good thing to be encouraged to do (find out information from outside resources). But I am ashamed to admit that we never considered her child-like understanding of illnesses as we adults struggled to deal with that new reality in adult-terms. To my recollection and great relief, she NEVER shied away from hugging me, snuggling together to read books, holding my hand, and giving (and receiving) kisses goodnight. I am so sorry, but so proud.

I know that this is a little indulgent and off-topic, but I believe that the impact of a cancer diagnosis on the mental state of the spouse and close family receives too little attention after a cancer diagnosis. I am a lucky guy to have had the amazing and unconditional support of my wife, family, and close friends. But I am troubled that her concerns about a future quality-of-life-gone-all-to-hell have not been articulated, appreciated, and addressed. I can only say that we need to be raise awareness of the needs of cancer families - and want to thank all the friends that appeared from nowhere to alleviate the daily stress of feeding us, of distracting us, of supporting us while we wrestled with the Beast. Listen to each other... and especially to the children.

1 comment:

Anonymous said...

Hi ya! We found your blogs about an hour ago. (We) because my lady is involved in this as much as I am. We are starting chemo on Monday 17th March 2008 (St Patricks Day for those with Irish decent). We decided to read your diary from scratch while drinking gin and tonic. ( Excerising liver /k idneys)

Oh yes, better introduce ourselves! We are Sean (age 66)& Kathleen (age 40) from the UK, I have penile cancer (with lymph node spread) and Kathleen, my partner types for me as treatment would be over before I had completed my first keyboard paragraph.

Speak soon and a HUGE thankyou so far x