Friday, March 9, 2012

Support Group...Not

Some sky, with wires, poles, and pigeons
I went to a support group yesterday in South San Francisco. Bad news is, no one but me showed up. I told the social worker, Renee, that I wasn't even sure what I wanted to talk about, just that I didn't know anyone else with cancer....Good news is we ended up talking for an hour and a half. She gave me a bunch of advice and resources. It was great. While she doesn't have cancer (as far as I know) she talks to a lot of people who do, and their oncologists...

One of the things I told her was that I wasn't particularly afraid of dying, my fear was more around quality of life and a potentially constant struggle with cancer. She said that 'spiritual' people by which she meant people who pray or meditate, all spoke in a similar way about death. She said some other people can't even say the word. All of which I found surprising, but no doubt I am fairly out of touch with the average Joe as it were.

Cafe La Boheme March 9, 2012
She also said that sometimes oncologists don't tell their patients bad news, or they say they don't know. (But if she asks the oncologist about a patient, they will tell her.) She thought it was because they were uncomfortable talking about it. Usually medical oncologists (e.g., Dr Tavakoli) are better at it because they do it more and have more of the big picture than, for example, a radiation oncologist. She said it helps to ask very specific questions, and if you get a bunch of different answers, to take something in the middle. All of my doctors have said they don't know...it seems like they don't.

Examples of good questions

  • Do you foresee I'm always going to be on chemotherapy?
  • If I don't do more treatment, how long would I live?
  • RE more chemotherapy - What is it buying me? What if I don't do it?
  • What would a decline with my type of cancer look like?

Apparently the five year magic number doesn't really apply to Stage IV types such as myself.


Vacations
  • Take a vacation 'between treatments' (This is how she referred to patients...including me. This is not how I had been seeing myself. Now it's just another question that can't be answered right now.)
  • Refundable tickets
  • Not too remote (close to a hospital)

Disability Insurance

Cancer patients who provide their medical records can usually get SSDI (Federal Disability insurance) in a month (usually takes 6 months). I can get SSDI and SDI (State disability insurance) at the same time (until State money runs out). Also, up to $1,000/month income is allowed while on SSDI. The worst, she said, that can happen, is that you get it and then you start working again so you cancel it.  I want to apply for this soon.


General advice
  • Wouldn't think about making HUGE changes, eg. a stressful fulltime job.
  • Think about doing things I enjoy, friends, laughing, vacation. 
  • Think in terms of...simple....de-stressed...money...stability.

Mostly Free Classes for Cancer Patients

General Cancer Support Group weekly UCSF Wednesdays 5:20-6:50pm 353-9745
General Cancer Support Group monthly Kaiser 3rd Fridays @ Geary 1:30-3:00
Open Art Studio - Wednesdays 1-4pm Mt Zion Rm B128 885-7221 free
Yoga for people with cancer - Tuesdays 1-2:30, 1545 Divis. @ Post 5th floor; 1st 10 classes free; 885.3693
Tai Chi Kaiser - Saturdays Mar 22-May 3, 9:30a-12:30p, $53 for 7 sessions, x33450
Core & More - Pilates, Fridays, 10:00-11:30 am, 1545 Divis., 5th Floor. Registration is required for this class. To register, call instructor Jane Clark at 415.722.5314


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2 comments:

  1. mary salomeMarch 13, 2012 at 6:51 AM

    I'd be surprised if you don't know about it already, but just in case: the Women's Cancer Resource Center.... http://www.wcrc.org/

    XO Mary

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  2. Lisa KHMarch 13, 2012 at 6:27 PM

    Suvanna,

    There's lots of different questions to answer about your cancer and your future, I know it's hard and scary. I am glad you are seeking out support groups, and I hope one of them pan-out :) Here's a few I other ones I saw at UCSF--
    sending many hugs---Lisa


    Healthy Living for Cancer Care

    Are you in active treatment or living with and beyond cancer? You can support your cancer care with our free programs, offered in collaboration with UCSF’s Ida & Joseph Friend Cancer Resource Center.

    Promoting Health with Qi Gong*
    Qigong is an ancient Chinese health care system that integrates physical postures, breathing techniques and focused intention. It promotes good health by facilitating the body’s internal healing mechanisms to relieve stress, develop flexibility, improve coordination and increase stamina. *Pronounced “chee gong.”

    You can increase your resilience to stress, enhance your treatment process, compliment your existing health care program and encourage more natural energy through our 10-week course taught by Joseph Acquah, LAc, OMD.

    Schedule: Meets on selected Wednesdays, 11 am - 12 pm
    Call for dates: 415.885.3693

    Supporting Cancer Care with Mind-Body Medicine
    Mind-Body medicine uses the power of thoughts and emotions to promote health and healing. Meditation and guided imagery are forms of mind-body medicine that can be practiced in a group, during a treatment or at home. To start the week off right through mind-body medicine, we offer a free drop-in meditation class each Monday. It is taught by alternating instructors Teresa Corrigan, MA, RN, and Brook Stone, LCSW.

    Schedule: Join us Mondays, 1:30-2:30 pm
    Because of occasional changes, you are encouraged to call to confirm: 415.885.3693

    Laughter for Health

    Did you know that a little laughter goes a long way? In fact, research has shown that laughter helps to relieve stress and strengthen the immune system. Laughter is contagious and has a powerful and immediate effect on our mind, body and spirit.

    Laughter Yoga
    Our free class meets every other Wednesday and involves deep breathing, stretching, clapping and laughter exercises. Led by Teresa Corrigan, MA, RN, it helps to:

    Increase blood flow and oxygen to our organs;
    Stimulate immune, digestive and cardiac systems;
    Enhance endorphin levels; and
    Reduce stress levels.
    Upcoming Schedule: Meets every other Wednesday from 5:30 - 6:30 pm
    Call for dates: 415.353.7718

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