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Archive for April, 2008

Wow.  I was overwhelmed by emotions I did not expect.  I did not know whether they were “normal.”  I wasn’t prepared for them and I didn’t know how to handle them.  It was important to know if what I was going through was “typical” for a newly diagnosed cancer patient, what to expect, and where to turn for help.  Today I found this guide to dealing with emotions.

LBBC Releases Guide to Understanding Emotions.
Our new Guide to Understanding Your Emotions will help you understand the variety of emotions you may experience after diagnosis and treatment and practical ways to move forward. . . . .

(The guide includes resources for)  . . . 10 Places to Find Help for Emotional Distress, 10 Times to Consult a Mental Health Professional, 10 Ways to Support Yourself and Helpful Resources for Finding a Mental Health Professional.

Download a free copy HERE

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Exercises such as yoga are helpful as the exercise can be tailored to each day’s energy level. Patients should be encouraged to create a healthy and pleasing environment. Many modalities should be suggested, eg, healthy diet, regular sleeping habits, and creation of a restorative environment with fragrance, sound, and visual effects.  From NOT JUST TIRED

I would LOVE to create a healthy and pleasing environment . . .for yoga, meditation, or even just sitting down after work to read a book or watch the news.  I’ve come to the conclusion that the energy level that I have now may very well be the maximum I’m going to attain.  It’s been a year since my diagnosis, eight months since I finished treatment, and about three months since I mark the end of the worst of the post-treatment fatigue and fog.  But my full-time job has taken all of my energy, and when I go home after work, I am done for the day.  On the weekends, I pay bills, do laundry, and may get one room cleaned, or one other job done. And rest. My job has consumed my energy, which means it has consumed my life.  Very depressing.  Time for changes.  I felt I didn’t have any options, but discovered that I do, and I must make changes no matter how scarey it is to be my age, with my medical history. 

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Cancer related fatigue is profound and difficult to explain.  I ran across this article online, which describes this fatigue for patients and caretakers and provides helpful responses.  From Journal of Clinical Oncology, Vol 19, Issue 21 (November), 2001: 4180-4181 American Society for Clinical Oncology .  Excerpts:

HELPFUL INTERVENTIONS
How can we help our exhausted cancer patients and families for whom prolonged symptomatology is difficult to comprehend? Health care professionals must recognize that cancer-related fatigue is different from fatigue experienced by otherwise healthy persons. Caregivers and family must also be so educated. While exercising or a nap may be helpful suggestions to normally fatigued persons, these may not be the solutions for cancer fatigue.

It must be recognized that each patient is unique. The extent to which cancer fatigue disrupts normal activities will vary widely. In an effort to be encouraging, many colleagues reassured me that many women with breast cancer continue with all their family responsibilities as well as work full time. Rather than helping me, this made me feel somewhat inadequate or lazy because I was so tired. It also led me to fear that my fatigue was all in my head and that if I could only get a grip on my emotion I would be more productive.

. . . . . . . when I can no longer carry on with an activity, this margin is very clear. Attempts to finish a task or pursue a project are unsuccessful. Empty is empty. I do not seem to have a safety margin where, although the needle is on E, there is sill energy to spare.  Article

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This is from a Portland poster in the Best of Craig’s List. 

 Cancer rant

http://www.craigslist.org/about/best/pdx/465030621.html

Includes “there is no ‘good’ kind of cancer,” “don’t tell me things I don’t want to hear,” “DO NOT ask me about my hair,” “don’t tell me it’s going to be okay,” etc.  It’s a MUST READ.

 

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MORE things not to say or do . . .(I’ve highlighted some of them that I wish people hadn’t said to me). . .

Here are some things that the girls on YSC came up with and their responses…

 

 

  • You could step off the curb tomorrow and get hit by a bus” (not a good analogy, its like I already got hit by the bus and now its backing up over me)
  • “You gotta think positively(ok, I’m positive I had cancer, and I’m positive it wasn’t fun)
  • “You’ll be fine”
  • “So, you’re fine now right?”
  • “My grandmom died of that”
  • “nice fro”
  • “God gives you what you can handle”
  • “What’s your prognosis”
  • “Can I see what is going on under that hat?”
  • “If anyone can beat it it’s you”
  • “If it’s not your time, it’s not your time” (then why bother with the surgery and treatment?)
  • “Life is not fair” (thanks for the heads up)
  • “Every cloud has a silver lining”
  • “Its just a bump in the road” (living with a cancer diagnoses, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
  • “Don’t worry”
  • “Your lucky you didn’t lose weight on chemo”
  • ‘Remember Lance”
  • “You gotta be like Lance”
  • “Lance beat cancer”
  • “Just look at Lance”
  • “Just think, you’re done” (done? I’m done?…I guess I’m done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
  • “You look good bald”
  • “So, was the cancer bad?” (no, I had the good kind)
  • “This is a treatable disease”
  • “You have a nice shaped head”
  • “How do you know if it’s working?” (I die, if it didn’t work)
  • “You know you can eat more curry, its supposed to kill cancer cells” (great tip, thanks)
  • “You’ll be fine, you have a great attitude” (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? right now my attitude about cancer is lousy. what does that mean?)
  • “If you really want to live, you will. Just never give up. when people give up, they die”
  • “Don’t worry, your hair will grow back”

Thanks for the great comments to the girls on the Young Survival Coalition.

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My second three-month checkup is next week.  This month of April marks one year since my diagnosis of invasive ductal carcinoma.  During my checkup I will also have blood drawn for genetic testing to see whether I’m positive for the BRCA 1 & 2 genes.  National Cancer Institute:

Each year, more than 192,000 American women learn they have breast cancer. Approximately 5 to 10 percent of these women have a hereditary form of the disease. Changes, called alterations or mutations, in certain genes make some women more susceptible to developing breast and other types of cancer. Inherited alterations in the genes called BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) are involved in many cases of hereditary breast and ovariancancer.

What does this mean?

A woman’s lifetime chance of developing breast and/or ovarian cancer is greatly increased if she inherits an altered BRCA1 or BRCA2 gene.

Information from my genetic counseling session indicated that I have a 6 – 15% chance of having this genetic mutation. Information from the test will help me make decisions about other medical care and treatment, and will be the basis for recommendations for testing of my family members. Not everyone has genetic testing. Ask your oncologist whether you should have the test and how she or he makes that decision.

The genetic counselor contacted my insurance company and they will pay 100% of the cost of the test.

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Rural women, those with abnormal clinical breast examination results and normal mammogram results, and those who self-discovered a breast mass were less likely than their counterparts to receive an adequate diagnostic workup based on guidelines prepared by the Society for Surgical Oncology, The Commission on Cancer of the American College of Surgeons, and the Centers for Disease Control and Prevention. None of the other variables were associated with less-than-adequate follow-up services. Even women without health insurance, minority women, and those living in poverty received diagnostic services similar to those received by their counterparts. Because women with these characteristics are typically less likely to be screened for breast cancer, our study shows that it is possible to assure adequate follow-up diagnostic services for these women.

Rural women were less likely to receive appropriate diagnostic services in our study. The main reason for inadequate follow-up among rural women is underuse of biopsy and fine-needle or cyst aspiration among those with both abnormal findings on clinical breast examinations and mammograms (algorithm 2). A proportion of these women might have had their condition initially misdiagnosed as not being breast cancer and later have more advanced disease.

http://www.medscape.com/viewarticle/405765_4

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