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Tag Archives: young adult cancer

Bonds of Friendship

 

 

L’chaim, by Brendan Ogg

            (“to life”)

Feather rug, soft bed of matted grass,
Why did I question this place of endless beauty—
life—
to my friend, in weakness?
Where was my heart before this time?
Now I feel it in my breast.
Put your hand there, fingers spreading from the palm,
And feel the warm, insistent pulse.

Published by Finishing Line Press


 

 

by Jackie Ogg, Caregiver

 

JackieOgg2For our son, Brendan, being able to talk, joke, and even cry with friends about his cancer was a mainstay of the support he needed.   During the 14 months that Brendan battled cancer, his friends were at his side, which necessitated their many trips home from colleges near and far and junior year abroad locations across the map.  We were all blessed to have witnessed these young people come together to be there for Brendan, and to be there for one another.

 

What we came to learn is that for most AYA cancer survivors, friendships fade rather quickly.  Working with Hospice Caring, Inc. and the Smith Center for Healing and the Arts, two Washington DC area organizations supporting those with cancer, we’ve been able to develop some strategies for strengthening the bonds of friendship – from diagnosis, through survivorship and onto end of life.

 


View more articles for Young Adults and Caregivers


 

Through conversation with AYA survivors in DC and at Stupid Cancer, two types of friendship networks were discussed:

  • Friends you have when you are diagnosed
  • Friends you want to get to know after diagnosis – other cancer survivors

For Brendan, and other younger AYA survivors (15-25 years old) we talked to, the priority was to get done with treatment and get “back to normal” as soon as possible.  Seeking out new friends – other survivors – was often just plain awkward, especially early on in the cancer journey.  One young survivor noted, “Cancer isn’t an automatic connection.  Chemistry matters.”  The desire to connect to other AYA survivors was important to this age group, it just came later.

JackieOgg3For the older AYA survivor (25-39 years old), the focus was on finding others who were 2, 5, 10 years into survivorship with their type of cancer.  As one survivor put it, “I want to find my mirror.” For this group, getting back to normal meant finding a “new” normal sooner rather than later.  The importance of the friends at diagnosis was not minimized – in fact they were a source of both joy and pain – especially for those who were parenting, married or working.  They needed current friends to help manage logistics of disease, transportation to treatment, carpool duty for kids, pet sitting, grocery shopping and cooking.

Many young people 15-39 live in one place for a few years, then onto another as work, school or love opportunities arise.  Social media makes it easy to stay connected to friends from all over.  Looping out of town friends into the support network for the AYA survivor is critical and social media can be a big help, with these simple precautions:

  • Remember that this is the AYA survivor’s story. Public posts from friends should protect the privacy of the survivor and any details they have shared.
  • Seeing friends and family getting along with their lives and being successful can be difficult for the AYA survivor.  Be thoughtful when posting about the big party that was missed due to a hospital stay.
  • Social media can be a great tool for the survivor to keep in touch with people but if they do not post for a few days, folks get worried that the survivor is not doing well.  Text or reach out to the AYA survivor with a simple “Hi – how are you today?” without showing your panic.
  • Leaving motivational messages alluding to survivors’ journeys are great.  Who doesn’t like to be told they are strong, beautiful, and an inspiration to others?

 

Cancer changes the tide of life for the AYA survivor, it’s just that no one knows exactly where the tide is taking them.  For friends who want to be there and be helpful, the message from survivors is loud and clear:  Be ready to go along with the changing person, the changing tide.  Some helpful reminders include:

    • treatment is not the end of the journey
    • the effects of treatment as well as the specter of recurrence linger
    • cancer impacts everything – career, finances, social connections, love

 

 

At the end of the day, it’s more important to reach out than to fear saying or doing something wrong.  If you feel you’ve offended in any way, apologize.  Keep the lines of communication open.  Your friend needs you.

 

 

Understanding what the AYA needs from their friendships is the first step.  Step two is creating programs and resources friends can access to strengthen this critical piece of the support network for the AYA.  Working with Hospice Caring, Inc. and the Smith Center for Healing and the Arts, I look forward to doing just that.  To learn more about this project, please contact me at jackieo@rcn.com.

 


 

Jackie has an MSW and has worked for the past 30 years in the field of social services bridging direct service, philanthropy, and community engagement. She is currently with Catholic Charities of the Archdiocese of Washington where she serves as Director of Family Parish and Community Outreach. In 2010 Jackie and her husband Clay lost their 20-year-old son, Brendan, to brain cancer. Brendan was an emerging writer and took part in a poetry workshop at Smith Center for Healing and the Arts. The work he created is included in Brendan’s book of poetry, Summer Becomes Absurd, and became the inspiration for a number of community art works including Encircled, exhibited at the Joan Hisaoka Art Gallery.

 


 

Parenting: How my cancer diagnosis sped up the process

AmyAubinby Amy Aubin, Living with Cancer

To a child, a parent is their entire world.  Children don’t think of the logistics of what it takes to put a roof over their head, to feed them, to get them to school, all under regular circumstances.  To them, parents are invincible – at least most of the time.  Parents are largely just the people who say no to extra treats or to sleepovers on school nights, they are the people who make us wash up before meals and make us bathe before bed.  But they are also our safety net – cuddling us to sleep and checking under the bed for monsters and assuring us that everything will be fine.  For a child, a parent showing their vulnerability especially at a young age is a very scary thing.

 

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Babies on the Brain

MattStephanieMadsenby Stephanie Madsen, Living with Cancer

Prior to my diagnosis, my husband and I spoke frequently about having children. We dreamt about how many we would have and what their names would be. We laughed at who they would take after. Would they be fiercely independent (and stubborn) like their momma or gentle and patient like their daddy? Would they have Matt’s tan complexion and my blue eyes? We noticed every pregnant woman passing by and couldn’t even walk through Target without perusing the baby section, dreaming of all the possibilities to come. Babies were destined to be in our future.

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Have you ever thought about participating in a research study?

LianeKandlerby Liane Kandler

As a cancer patient or survivor, participating in a research study might be the single most powerful thing you can do to make a difference in cancer research and care.  Your opinions and experiences are invaluable: It is only through research that we are able to ask and answer questions including what treatments work, how current programs could be improved, how to improve patient care, and critical directions for cancer care.  We wouldn’t be where we are today without research, however we still have a long way to go.

 

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Surviving Childhood Cancer: A 20 year reflection Part 4

TedSibley2by Ted Sibley, MD
Truman Medical Centers Emergency Services
UMKC Clinical Assistant Professor Emergency Medicine Department
UMKC Adjunct Clinical Assistant Professor Master of Medical Science Physician Assistant Program

Read Part One
Read Part Two
Read Part Three

Part Four

Childhood cancer survival rates are on the rise. Current estimates are that there are more than 325,000 children, teens, and adults living in the United States who are survivors of childhood cancer, and each of us has a story to tell. We can tell you about life before, and after, cancer. We can tell you about the years of our childhood that we missed. We can even tell you the names of our nurses and oncologists who became a part of our families during our treatments. If we were too young to understand what was going on, our parents could tell you about the struggles they went through — the worries and tears they cried for us when we were too young and weak. Some of us have made it into adulthood, and we can tell you how cancer is something we carry with us. We are part of a collective group that faced death at a young age and now are living life in a newfound light.

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Surviving Childhood Cancer: A 20 year reflection Part 3

TedSibley3by Ted Sibley, MD
Truman Medical Centers Emergency Services
UMKC Clinical Assistant Professor Emergency Medicine Department
UMKC Adjunct Clinical Assistant Professor Master of Medical Science Physician Assistant Program

Read Part One

Read Part Two

Part Three

The next couple of months were some of the most difficult in our relationship. First were long nights on call delivering babies in the Labor and Delivery Unit, followed by a six-week rotation in pediatrics at Children’s Hospital — the same hospital where I had been a patient and had worked in the pharmacy and as a nursing assistant. Now, I was a medical student doing 30-hour on-call shifts. Still angry and wounded by the fertility diagnosis, the vigor and laughter that I used to share with the oncology families had vanished. I put on a happy face and tried to give them hope like I once had, but on the inside I was hurting.

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