We deeply appreciate the support that everyone gives us, in so many ways. We could not do this without you, and often, your strength carries us. Thank you.
Cancer can be isolating in many ways, and most especially when it comes to parenting. Your support holds us up so that we can be there for our kids, helping our children and our family as a whole.
Sometimes, though, I need to talk with someone who understands, someone who is in the trenches, someone who lives this. And while I would never wish this diagnosis on someone (okay, maybe I did once), I know that there are other people in this situation. I just don’t know them personally right now.
Plus, our kids can use some kind of support that they aren’t currently receiving, and I can’t put my finger on what that looks like. I know that there are many parts of this “lifestyle” that they find unsettling and abnormal, and for as much assistance (from family, friends and professionals) that we are fortunate to have, I can’t help but feel that they also need a community who understands their life situation and among whom they can feel normal.
I talked with the Dana Farber gastrointestinal social worker about this. She listened generously and heard our underlying need.
Most of the cancer world, as far as I can tell, is segmented by disease type. Breast cancer patients go together on the same floor and have their own designated topics for discussion and means of support. Colorectal and GI patients are grouped. So are blood cancers, bone cancers, and others, each with specific informational sessions and discussion groups.
But this social worker pulled together other professionals across those lines to create a half-day workshop to support families who have a parent dealing with a cancer diagnosis. Any kind of cancer.
I signed us up.
When the day arrived, I was post-chemo exhausted and no one in my family wanted to go, but I dragged myself and them. Our group consisted of approximately 16 adults (some who came as couples, some as singles) who brought children ranging from (I estimate) ages 4-14. During the first two hours, the children were in one room doing an activity and the adults were in another having a discussion.
We quickly found common ground. First of all, every family had a parent who was diagnosed with stage 4 disease.
Secondly, the aspects of our daily lives were surprisingly similar.
We related when someone talked about plans they made with the kids, then cancelled at the last minute because we felt too sick or tired. We chimed in about dealing with developmentally-appropriate discussions that come up but feel loaded (e.g., it is hard to discern when a child brings up death because they are processing their thoughts on what might happen with their parent, or they are simply learning about death as a general concept). We discussed helping our children deal with the overwhelming anger they can feel about the situation, often when they are still learning to recognize and label their feelings, and knowing that this anger can’t be directly resolved and doesn’t simply pass with time. We talked about not being as involved with our children as we would like, and needing to step back and let others do activities with them that we so desperately would prefer to do ourselves.
We recognized the strengths in each other, and we compared notes on ways to handle certain situations: How do you get a twelve-year-old to communicate? What is the best way to leave some essence of yourself and your teachings and beliefs with your children?
We commiserated on situations that we all face but none of us knew how to handle, like how do you enable a child, as they grow, to push you away as they naturally would without having them feel guilty about not spending enough time with you while they could? At what point do you tell a child that their parent is about to die?
And we talked about not being the parents we envisioned or having the family life we wanted to craft. Not even close.
I got a sense of normalcy from being with everyone in this group. Our boys connected with the other kids, one strongly enough to exchange information and want to stay in touch.
As you might imagine, we all arrived home EXHAUSTED. I find that I am still processing this – the benefits I got, the feelings that it stirred. Probably our biggest gain, individually and as a family, was a sense that we are not alone. We are feeling our way as our children grow, there are no good answers, but…we are not alone in this.
This group is not scheduled as an ongoing entity. I’m not sure it should be – I don’t have the energy to do this regularly! But it was helpful and I hope to always tap back into what I learned and the feelings it generated.
As we move forward, our family appreciates that you share your strength, your energy, your culinary skills, your caregiving, and the myriad other things you do and are. It surrounds us and carries us and helps us to find our way. And I have hope that, if something should happen to me, this energy as well as your presence will help to carry our family forward.
With love and gratitude,
A group like the one you participated is so important. It is amazing that it isn’t the norm. Perhaps you and your boys could stay in contact with the others on line.
As I was reading your post, I thought that our Sunbeams groups for 3-5 year olds who are dealing with family traumas should add a session in which the parents and siblings could attend. I would need to get a social worker to facilitate the session. It is beyond my expertise for sure. I will suggest it to the school. Everyone needs to know they are not along in dealing with life’s most difficult challenges. Hugs to you.
I have wondered how the boys are doing, Marie. Glad to hear about this group happening! Hope their school community is supportive, too! -Diana
Gosh, Marie, what an intense day for all of you. But it also sounds very helpful. You friends no doubt feel some of the guilt you describe your children possibly feeling. I know I do. I really appreciate your writings and the way you share them with all of us. You make us all more open and human. Thanks.
I am so glad you were able to do this group Marie! Similar to MGH, the UCSD support groups are mostly separated by “type of cancer”. Especially as a “young” CRC patient, I just have so much more in common with fellow patients my age **irrespective of cancer type** than I do with the average CRC patient, who is not only usually older than me but usually in a much different part of their life than I am (i.e. not a mid-career professional with 2 little kids!). I have recommended to UCSD many times that they set up support groups by decade (20’s, 30’s 40’s…) if possible since that will group together patients dealing with similar “normal life” situations and issues – which as you know are intrinsically linked to cancer-based issues!
Hi Marie. I’m just back home after a couple exhausting weeks (not in a row) away with Amalia so I’ll be brief. But I am so glad you decided to do this. I think the connecting with families, and your children connecting with other children, in similar shoes is a godsend. I hope the value of this encounter stays with you and your family for a while and I hope you get a benefit from it.
What an amazing workshop! To be able to form community with people who share similar struggles is so empowering. God doesn’t want us to feel alone or isolated. I’m glad you got to do this. Much love to you and your family!
It’s hard to imagine how we could structure our lives and our plans for rearing a family to encompass a frame of mind that wouldn’t experience these gaps you mention, Marie. it seems like no matter what view you take on your approach to life transitioning to living with Cancer will require incredible adjustments and you have certainly adjusted.
Glad you all got something out of the group Marie – that sense of solidarity in going through what you have to face as a family must be reassuring. So glad your recent scans came back OK too. X
An important resource: not at all surprised that you were the catalyst!