Jimmie Holland probably isn't a name you've heard, but her work was well known to oncologists and patients with acute cancers.
Holland, who died recently, pioneered onco-psychology and mental health care for cancer patients. Her obit in the New York Times tells a bit about her work:
Holland, who died recently, pioneered onco-psychology and mental health care for cancer patients. Her obit in the New York Times tells a bit about her work:
"It's bad enough to have cancer," she told the web site Medscape.com in 2015, but when all your family and friends are saying you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments--it seemed to me that adding that burden to be positive was just ridiculous."
Our ET is chronic rather than acute. Our treatments and disease are less intensely exhausting, at least initially, but they last a lifetime.
Those of us with ET are often told our cancer won’t kill us and won’t shorten our lives. That isn't entirely true. And we often are not told about how to improve quality of life or deal with med side effects.
I talk to ET patients every day who think that their symptoms must be in their heads because support groups are thin on the ground, and they don't know anyone with ET.
How do you deal with the mental aspects of ET? Discuss here or on our Facebook page, link at right.
Be well!
there are times when I feel very fatigued to the point of nodding off mid day, when I raised this issue with my oncologist his comment was he has had that experience with it, same when I raised the issue of weight gain and thinning hair....am I imagining these things or are they real and associated with hydroxyurea, I'm on 1 capsule a day, 500 mg.
ReplyDeleteNo, NOT in your head. However it's often hard to figure out what's the disease, the meds, or age.
ReplyDeleteBefore I knew I had ET, I was complaining about fatigue, bone pain, and headaches. The doc chalked it up to menopause and stress ... until my CBC showed platelets in the 600s.
Doctors, even hematology oncologists, are often behind the curve on symptoms. ET itself causes fatigue. For some people, HU makes it worse. hI can also cause hair thinning, though usually.this is mild and often reversed when the body adjusts.
Some patients prefer anagrelide as an alternative to HU. This would be worth asking your doc about.