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How Can We Improve Emotional Support in Cancer Care?

July 1st, 2014 |
Survivorship, Caregivers, Emotional Support

by Mallory | Survivor: Hodgkin's Lymphoma    Connect


Did you receive the emotional support you needed during your cancer journey? In this guest blog post, Mallory shares her experiences and how she hopes support will improve for future cancer patients.

When I was diagnosed with cancer, I met with numerous specialists, nurses, oncologists and doctors. Along the way I was told plenty of information — what my treatment would look like, what side effects I could expect, what the likelihood of survival was for my type of cancer, that I had the best kind of cancer (I really hate that saying…but that is another topic entirely!). I even asked specifically what would happen if I chose to do nothing.

All these different specialists had suggestions for treatment, but not a single suggestion to look into counseling. My options for support were already limited because my first hospital didn't have a young adult support groups and my second hospital, where I took part in a clinical trial, was 3 hours away from my home. Ultimately I never attended a support group meeting.

During treatment I stayed "strong" in front of many people but I was also depressed, feeling isolated, and very overwhelmed. The question of "how is everything going?" was usually met with only physical side effects. I never mentioned that I was sad a lot of the time, felt quite stressed, and generally frightened by life in general. I never mentioned after my treatments were over that these feelings continued.

We cannot force people to seek help if they are not willing to receive it or willing to express their emotional distress, but maybe if more of the "right" questions were being asked more people would speak up about some of those emotionally uncomfortable topics.

Finding Support at the End of Life

When my mother entered into hospice (prior to my own diagnosis) at the end of her life, people specializing in emotional support emerged. But where were they before all of this? Why were they not part of the team that took care of my mother and helped us take care of her? And why not before the end of her life?!

A hospice nurse came, followed closely by a clergyperson and a social worker. After the hospice nurse was busied with my mother's needs, the clergyperson and the social worker sat down with me and my father. The two of them explained who they were and what kind of support they were there to provide. They asked us how we were doing and if we needed anything they could help with.

I'm pretty sure my answer of no was given with a smile, but I'm positive that I was lying. I needed support then just as badly as I had needed support weeks before while my dad and I were caring for my mom. I definitely needed support after my mom passed and as I was being diagnosed with my own cancer too. It took a few months of hurting badly from my mom's death and another few month of tests and diagnosis to get me to finally reach out to someone and seek support. I hadn't been sleeping well. I cried all the time. I kept the TV on constantly because I hated being alone with my thoughts...even taking a trip alone to the grocery store terrified me.

Finding the Right Questions to Illicit the Real Reponses

What can we ask of our patients and survivors, to try and illicit real responses? What can we ask to let people know that if they are having a hard time, that this is normal, and that there are people out there who can help? How can we let them know that admitting a need for support is a very brave and courageous way to handle their diagnosis?

I personally do not know the answers to these questions but I think that we as a community of survivors and fighters can begin to figure it out.

Do you have any ideas in which health care teams can improve patient emotional care? Share your thoughts in the comments below.

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Mallory   
Mallory is the Founder of Lacuna Loft, a new resource for young adults dealing with cancer or long term illness, as either patients or caregivers. She served as one of the primary caregivers for her mother undergoing treatments for a brain tumor just months before receiving her own diagnosis of Hodgkin's Lymphoma. She has her MS and half of a PhD in Aerospace Engineering. Mallory sees the beauty of everyday life and strives to help others find it too, even in crisis. Learn more about Mallory and Lacuna Loft here or connect with her on IHC under the username, Mallory.

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