Dear, Bereaved Caregiver (Parent, Family Member, Friend, Peer Survivor)
An Open Letter from Someone Who Understands: Stupid Cancer Open Letters
The death of a loved one is heartbreakingly painful. Beyond words. It can be as isolating for those left behind as the cancer journey itself… if we don’t at least try to reach out.
I am so relieved that CancerCon is providing a session on Caregiver Bereavement this year. As caregivers to our loved ones, or as AYA cancer survivors or advocates, we are familiar with the unpredictable and confusing chapters of the cancer storyline; from diagnosis through all the others — treatment, chemo, radiation, surgery, remission, recurrence, metastatic, chronic…all the way to the most devastating chapter of all, end of life.
Now, with Stupid Cancer’s support, we have an opportunity to write and share the complete cancer storyline, including the epilogue: bereavement.
I have been a bereaved parent since my daughter Sara died from cancer in July 2000 at age 26. Almost 20 years later, I am still exploring the complexities of grief. What I have done to keep breathing all these years is different from what some other caregiver will choose to do. But I think that is the key word: choose. We can either choose to follow our loved one into the grave, or learn how to live in a world without them. Cancer stole their young lives…will it steal ours, too?
Through this session on Caregiver Bereavement, CancerCon is providing a safe place for caregivers, parents, family, peer survivors and friends to talk about this part of the experience; to share our stories and to celebrate those who have lived and died within the AYA cancer community. I know why *I* think this is important, but for this introductory letter I thought I would also share some thoughts from others who are on this journey too, about how coming to CancerCon has helped them and why it might work for you, too:
Cherri Chiodo — mother/caregiver to Lauren (teenager)
“It really does help to feel one with someone, even if the thing you have in common is tragic. Other bereavement groups I have attended were filled with parents who had lost an unborn child or a young adult child to an accident or suicide. Cancer is different. I didn’t feel those people “got me.” CancerCon is about being with people that “get me”. Another big reason I chose to come back was that Lauren loved the Stupid Cancer group so much. It has truly helped me to be around people who knew and loved her.”
Terry Edquist — father/caregiver to Aaron (young adult)
“Three years ago, my son Aaron and I attended CancerCon, surrounded by other young adults with cancer and their caregivers. The event provided plenty of time to talk with Aaron in his own environment, away from home, doctors, and hospitals. There were so many other young adults sick. I never knew, before.”
After Aaron died, Terry returned to CancerCon the following year: “People are amazed that I do this and can speak to total strangers about losing Aaron and the toll it takes on my wife and Aaron’s sibling. But I felt I should continue to be part of this (cancer support system) and use my knowledge to help others. It doesn’t matter how their child died. Dead is dead. And, they need to talk about it when they are able or it will eat them alive. Just knowing you’re not alone is helpful. Other people have lived this. I will never get over this (loss) but knowing I can help someone else makes my son’s legacy live on. Aaron would have wanted that, so I do it for us. (him and me).”
Eden Lackey, YA cancer survivor and caregiver to YAs Amber Gillespie and Toni Watters
“When I fought my battle, I didn’t have support from other cancer survivors. It wasn’t until after that I found Stupid Cancer! Even though my family and friends were amazing, they didn’t understand so many things and it was so hard to communicate. I think as survivors and as caregivers we benefit from meeting other people who are going through similar issues. Just meeting others in the same situation makes dealing with things so much easier. When I became a caregiver I was so grateful for the education that Stupid Cancer provided and the doors it opened to meet others like me from both sides, patient and caregiver. I was able to give so much more care and understanding and didn’t feel so helpless.”
As for me?
When my daughter Sara died, part of me died with her. I no longer saw colour. I felt numb. Out of focus. Out of tune. I lost myself. Oh, I went through the motions of living; breathing, talking, eating, working, and, at times, even smiling. Yet, feeling joy, seeing vibrant colours, singing out loud or gleefully embracing a new day — nope, not possible.
How could I live without her? As a parent it was my job to keep Sara safe, well, and loved. I was suppose to die before her; that is the natural order of things.
This was wrong.
If I dig deeper, I feel abandoned. Does no one miss Sara as much as me? Does no one else still feel the huge sense of loss I live with everyday? I find it difficult to express, this deep, innate sadness that reaches up and grabs me when I least expect it, making my breath hitch, disrupting a joyful laugh, a fearless thought or idea. I curl back into myself, back into the shadows where bright colours are grey and bland. It’s a safe place where I can walk alone. Cry alone. I find it easier to hide from people than to pretend social courtesies and enjoyment that I no longer feel. Yet, this “safe” place is slowly sucking the life out of me. Life 0; Cancer 2. No. I know that Sara would not want that. So, I choose life. How do I do that?
Having known and worked with Stupid Cancer since 2007 (when it was called I’mTooYoungForThis) I am confident that attending CancerCon will help me find an answer to that. Like the friends and colleagues I have quoted above, I know that I need to be with other people who have lost a loved one in this way. I need to be with others who “get it”; who “get me”.
Still chasing rainbows,
Someone Who Understands
Author’s Note: My name is Pat Taylor, mother of Sara, founder of Chasing Rainbows Young Adult Cancer Advocacy. Please, come up and introduce yourself to me at CancerCon. Come tell me about your loved one. Let’s share our cancer stories from the first chapter through to the epilogue.
