Brain cancer parents and their post traumatic stress...

This article was circulated on my moms-of-kids-with-brain-cancer list. It leads with a mother saying: "I feel fragile and vulnerable... I feel that I can't let my guard down and have to be prepared for anything at any time ... it's always there." and goes on to say:

[These] feelings sound similar to those of people suffering from post-traumatic stress disorder, a condition not traditionally associated with healthy adults untouched by armed combat, natural disasters or violent crime. But like others who struggle with PTSD, parents of children with cancer may face a lifelong fear of the enemy: invisible, insidious and potentially invincible.

Well, we cancer moms know this already but it was reassuring to see it in print.

Excerpts from
PTSD shows up in parents of kids with cancer
Suzanne Leigh, San Francisco Chronicle, February 7, 2011
In a 2005 study, published in the Journal of Clinical Oncology, researchers from the Children's Hospital of Philadelphia found that of 171 mothers and fathers of young patients undergoing treatment for cancer, all but one had post-traumatic stress, a disorder described as "closely related but not as severe as full-blown PTSD."

Although PTS does not meet all the criteria established by the American Psychiatric Association for a diagnosis of PTSD, some clinicians use the terms interchangeably.

Among those symptoms listed ... are intense fear, helplessness or horror; recurrent nightmares and flashbacks; irritability, anger outbursts, heightened startle response; and avoidance of events, people or places associated with the trauma.

"Fear of recurrence is a universal never-ending worry for parents." Moreover, studies have demonstrated that the toxicity of chemotherapy and radiation can cause secondary cancers and heart disease several years after treatment.

Coping tips for parents

• Focus on today and not the future, and on what you can control versus what you cannot.
  
• Recognize depression triggers: anniversaries of a diagnosis, your child's birthday or doctor appointments.
  
• When seeking support, differentiate between those who give it and those who drain your energy.
  
• Reach out to other parents who have a child with a similar diagnosis.
  
• Get involved in an advocacy group for your child's disease.
  
• Set up a website, with an organization such as Caringbridge.com, so that you can control information about your child's health.

Compiled by pediatric oncology social workers at UCSF Benioff Children's Hospital