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Caregiving Myeloma Survivor w/ PTSD

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“A recent study showed approximately one-fifth of patients with cancer (myeloma) experienced post-traumatic stress disorder (PTSD) several months after diagnosis, and many of these patients continued to live with Post-Traumatic Stress Disorder years later…”

I’ve been a multiple myeloma survivor since early 1994. When I talk to friends and family about surviving multiple myeloma, I always mention the many short, long-term and late stage side effects that I live with. When I read the study linked and excerpted below, it occured to me that I never mention having post-traumatic stress disorder. I guess I talk about the obvious visible side effects and less about the side effects that are largely invisible.

While I have never been formally diagnosed with PTSD I exhibit many of the symptoms listed by Cancer.Net.

To be clear, I don’t put my disorder anywhere near the degree of disorder that veterans can experience. That’s a level of physical/mental trauma that I can’t even imagine. The disorder that I live with is like my other  long-term side effects- a new normal that requires that I have to learn to live with.

But I’m now wondering if my caregiver wife and son have to live this unseen side effect too? 

Let me cite examples of what I mean:

  • All parents feel anxiety when it comes to their children’s safety, right?
  • It is common for older adults to feel guilt and regret, right?
  • It is normal for parents to feel fear right (see number 1 above)?
  • It is normal for parents to have unwanted thoughts when it comes to their children leaving the nest, right?
  • I don’t have difficulty feeling emotions, I am too emotional when it comes to my son…

My point in the above is that it’s bad enough that I have to live with short, long-term and late stage physical side effects caused by aggressive, toxic standard-of-care surgery, radiation and chemotherapy.

One of the benefits of being a multiple myeloma for such a long time is that I’ve learned many therapies, many coping mechanisms for my many side effects.

Are you a multiple myeloma survivor or caregiver? Do you have Post-Traumatic Stress Disorder? Do you care give someone with PTSD? Scroll down the page, post a question or comment and I will reply to you ASAP.

David Emerson

  • Multiple Myeloma Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Signs and symptoms of PTSD

“It is normal for a person with cancer or a cancer survivor to have feelings of anxiety, such as worry, fear, and dread. However, if these feelings do not go away over time, continue to get worse, or affect daily life, they could be a sign of PTSD.

Other symptoms of PTSD include:

  • Nightmares and flashbacks
  • Avoiding places, events, people, or things that bring back bad memories
  • Strong feelings of guilt, hopelessness, or shame
  • Trouble sleeping or concentrating
  • Continuous feelings of fear or anger
  • Loss of interest in activities and relationships that used to be enjoyable
  • Self-destructive behavior, such as drug or alcohol abuse
  • Frightening or unwanted thoughts
  • Difficulty feeling emotions”

Many Cancer Survivors Are Living with PTSD

“A recent study showed approximately one-fifth of patients with cancer experienced post-traumatic stress disorder (PTSD) several months after diagnosis, and many of these patients continued to live with PTSD years later. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings highlight the need for early identification, careful monitoring, and treatment of PTSD in cancer survivors…

Clinical evaluations revealed a PTSD incidence of 21.7% at 6-months follow-up, with rates dropping to 6.1% at 4-years follow-up. Although overall rates of PTSD decreased with time, roughly one-third of patients initially diagnosed with PTSD were found to have persistent or worsening symptoms four years later.

“Many cancer patients believe they need to adopt a ‘warrior mentality’, and remain positive and optimistic from diagnosis through treatment to stand a better chance of beating their cancer. To these patients, seeking help for the emotional issues they face is akin to admitting weakness,” said Dr. Chan…

Dr. Chan also stressed that many patients live in fear that their cancer may come back, and they may think the cancer has returned with every lump or bump, pain or ache, fatigue or fever. In addition, survivors might skip visits to their oncologists or other physicians to avoid triggering memories of their past cancer experience. This can lead to delays in seeking help for new symptoms or even refusal of treatment for unrelated conditions…

“We need psychological evaluation and support services for patients with cancer at an initial stage and at continued follows-up because psychological well-being and mental health—and by extension, quality of life—are just as important as physical health,” said Dr. Chan.”

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