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Tag Archives: aya cancer

Moving On

MayaStern2by Maya Stern, CKN Advisory Board Member

 

The most frustrating part of being sick for me was hearing people say, “You can’t do this”—even if it was physically warranted.

 

After chemotherapy shrunk my tumour, surgeons cut open my body to remove the remnants of the tumour. It was still too large, and they had to remove the whole kidney. No big deal—I have another one.

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The Need for Lung Cancer Literacy

AnneMarieCeratoby Anne  Marie Cerato, Living with Cancer, CKN Young Adult Section Editor

 

November 1st marked Lung Cancer Awareness Month in Canada and the US. It received little fan-fare and still largely goes unnoticed. After all we don’t have cute logos, fancy ribbons, big marketing campaigns, and many media outlets just don’t pick up the lung cancer story. So what do we have? We have numbers, we have stigma, and we have hope.

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Cancer and Young Adult LGBs

SophiaFantusby Sophia Fantus

Adolescents and young adults (AYAs) with cancer are informed of their fertility preservation (FP) options with the intention that, if possible, they are able to consider having biologically-related children after treatment. The increasing social and political inclusivity of lesbian, gay, and bisexual (LGB) populations, and advancements in fertility treatments, have encouraged a growing number of LGB AYAs to consider biological parenthood. For LGB AYAs, the process of FP is likely different than for heterosexual AYAs. Decisions surrounding FP may be shaped by legal regulations (e.g., prohibitions surrounding same-sex marriage, adoption or surrogacy), as well as negative social attitudes and discriminatory practices that perpetuate stereotypes that LGB individuals and same-sex couples are morally unfit to parent. LGB AYAs with cancer also may not have the same general reactions and responses associated with possible infertility as their heterosexual peers. How these experiences influence LGB AYAs’ concerns surrounding FP is important to bear in mind.

 

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Self-Care Breast Health Messaging for Young Women: Team Shan

Shan Pic

Shanna Larsen

by Lorna Larsen, RN, BScN, Team Shan President

Caught between childhood and adulthood, adolescents and young adults (AYA) are often misdiagnosed or ignored in cancer prevention and early detection messaging. Referred to as the forgotten generation, the 15-39 age trajectory is too frequently misdiagnosed and diagnosed late with cancer. Mortality rates have not changed in decades, cancer is often very aggressive in this population at risk and no routine screening is available. Cancer awareness is an identified gap in the AYA cancer continuum.

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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.

 


 

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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