annon123456

Posting since October 23, 2016

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Posts I've Started
Article Talk: You Don't Look Sick
April 14, 2018
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Article Talk: Give Patients Permission to Get Angry
March 17, 2018
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Article Talk: Give Patients Permission to Get Angry
March 17, 2018
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Article Talk: Give Patients Permission to Get Angry
March 17, 2018
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Article Talk: Give Patients Permission to Get Angry
March 17, 2018
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Article Talk: Coming to Terms With Pinktober
September 16, 2017
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Glad you figured out how to live with pink crap all over the place. Personally I would be happy if I never saw another pink ribbon again (BC on both sides). I have another cancer (one of the non-hodgkin's lymphomas) and I am grateful that the invasive cancer marketing machine has stayed out of that one. I have no desire to wear that I have cancer on my sleeve like I have team spirit for cancer. I do not identify with the garbage that goes on connected with the pink invasion. Cancer is not who I am it is what I have. And I feel no obligation to get involved in all that crap. Maybe we should have venereal ...

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Article Talk: I
March 24, 2017
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You said, "However, I

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Article Talk: Crowdfunding for Cancer Care: A Virtual Safety Net
March 15, 2017
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I used gofundme. They take about 9% (between them and wepay the platform they use for your funds - youcaring also uses wepay). 1) You need to think very seriously about your privacy. A google on your name brings up your gofundme page on google's first page. If you are on the job market (like I am - I was fired for having 2 cancers in one year, one with no cure, was told I was too expensive for their insurance, still only have had a string of part time and temporary jobs - hard to get junk jobs with too much education - an issue I am running into, hard in my field to get another permanent job if ...

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Article Talk: Coping With Cancer-Related Financial Toxicity: New Grading Tool May Help
October 23, 2016
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Let me start this rant with stating that I do understand that in science you need to quantify things, use random samples, etc. so that your answers are as believable as possible... and I am glad someone is finally doing this although I am pessimistic that there will be any changes that come from the outcomes of that study...meanwhile I sit here in financial toxicity hell... Don't need any financial toxicity survey to determine that in my case it is severe... Lost my job over this (had no sick days either so had to work full time though chemo and several times go to work from chemo - had both breast cancer for the second time but on the other side ...

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Comments I've Made
Article Talk: You Don't Look Sick
April 14, 2018
Even during chemo you don't always "look sick". The kind of chemo I had you don't lose your hair. Someone else at work, at the same time, had one where she did lose her hair. I was told my chemo wasn't as "bad" as the other person because I had my hair; that I should get it together and stop acting like I was sick. Really? My chemo was busy killing my bone marrow. My bone marrow cellularity went from 65% to 20% with chronic low counts, fatigue, etc. to match. Sometimes people can be so ignorant.

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Article Talk: Give Patients Permission to Get Angry
March 17, 2018
1) Sometimes people who have had cancer avoid those of us who still have it because that we are still dealing with cancer triggers all their fears. 2) Plenty of oncologists don't want to deal with the emotional side of cancer and thus their patients get fired when they are upset, angry, etc..

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Article Talk: No Insurance. No Cancer Treatment.
February 04, 2017
Sme situation here. No state expansion of medicaid in this state. I was fired over cancer (breast on the other side and one of the indolent but non-curable non-hodgkin's lymphoma in the same year). I currently make below the poverty line. I had to choose between rent and health insurance. Chose health insurance and was homeless for 19 months until I got into hud housing. Just got a new dx of a peripheral neuropathy issue (not chemo related - rather a progressive disease) and spent the better part of last week fighting with the hospital about their poverty program and that excluding me because I have health insurance, even though I have food stamps and am in HUD housing violated the intent of the state ...

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Article Talk: Coping With Cancer-Related Financial Toxicity: New Grading Tool May Help
October 23, 2016
Didn't realize my post above would lose all it's formatting and paragraphs. Sorry it is harder to read for that reason.

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Article Talk: Is It Possible to Thank Cancer?
August 15, 2016
No have never thanked cancer and never will. The negative far outweighs any pollyanna positive. I also tend to resent any articles that tell me I should look for the positive, etc. (yours was less preachy than most). There is absolutely nothing wrong with hating the entire experience and then say F@%* cancer and walk away (of course in my case the walking away is a little more problematic with my 3rd cancer as this 3rd one, unlike the other two, has no cure) and then never look back. If finding a positive helps you - great. What helps me far more is getting on with my life after nasty detours like my cancers are and have been. Would I thank having a broken leg. ...

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Mom's Cancer Diagnosis: Tips for Families With Young Children
March 06, 2016
I also used the approach you used with my grade school daughter (string of cancers, breast, then later breast on the other side and then follicular non-hodgkin's lymphoma). In my case it was complicated by the fact that a mom down the street died of breast cancer about 6 mo before I was diagnosed, in home hospice, my daughter was in their house the day she died). I am a single parent which made things a bit harder as I had no back up parent to help out. Here is what I found after the fact: 1) While she was reassured, some other kids said stupid things that triggered fears and she didn't always tell me about what they said. Would have been better to address some ...

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Replacing What Chemo Brain Takes Away
December 12, 2015
Pffff. Sorry. For me this still comes under the category of gotta make lemonade out of lemons or there is something wrong with you; some how having cancer gives you the inside track on being a better person; blah blah blah. Having been through 3 major cancers now, coming out the other side (although one of them has no cure), I have not experienced any of what you talk about. Cancer is bad crap you need to figure out how to live through, medically (hopefully) and emotionally recover from... and then keep living. I can see absolutely not one positive thing that came from having cancer, chemo, chemo brain, any of this crap. Glad putting a positive spin on everything you gain helps you. "Loving ...

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Patients Split on Discussing Out-of-Pocket Treatment Costs
November 24, 2015
Well I guess I fall into the high distress category. No medicaid expansion and I don't make enough for a subsidy. Thirteen months ago I had to choose between rent and health insurance. I am homeless. I have had to beg to meet expenses (a gofundme www.gofundme.com/78d3nc but that has donor fatigue and my premiums, currently $798/mo are going up to around $1000/mo with $5000 out of pocket/deductible). Personally I'd prefer a job with benefits than have to beg. I was dumped due to being "too expensive" for my self insured employer and likely there were HIPPA violations between the company that administered the insurance and my employer (Deanna Fei discusses that problem in her new book about what happened to her family when she ...

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Unhappy During Pink October
October 10, 2015
I have had breast cancer on both sides, follicular non-hodgkin's lymphoma (no cure), very early colon twice now and some basel cell skin cancers... and I hate all the symbols of breast cancer. Why why why is BC the only cancer we are supposed to be connected to for life? Why is it not acceptable to NOT make that stupid cancer the center of our lives? The approach the non-hodgkin's lymphoma community is like a breath of fresh air. No ribbons, no colors, no pressure to always think of your self first as a cancer patient/victim/survivor of a war, etc.etc.etc. The role we are cast into drives me nuts. Cancer is not who I am it is what I have or had depending on the ...

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Different Cancers, Different Journeys: One Problem With Lack of Public's Education
June 25, 2015
It is also very different when you have a cancer with no cure or one that is potentially curable. Breast cancer #1 2003, took about 4 years not to think about it every single day. Breast cancer #2 a sharp set of eyes at Seattle Cancer Care thought they saw something. Couldn't find it with an ultrasound so figure it was artifact. 2010 finally shows up on a mammogram. 5 tumors some that are DCIS and some that are invasive. Follicular non-hodgkin's lymphoma (fnhl) - 8 months later in 2010 (with "B" symptoms for the previous 18 months or so and so dx'ed initially with hypochondria, this cancer was found by accident when someone was finally willing to investigate the nausea and weight loss). That one ...

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Letting Go of Certainty
May 07, 2015
I found a qualitative difference between uncertainty after breast cancer (had it twice, once on each side) were I was stage 2b (first one) and stage 1 (second one, although with 5 tumors) and follicular non-hodgkin's lymphoma that has no cure. With BC #1 it took about 4 years not to think about BC every single day (BC#2 kind of got eclipsed by the fnhl diagnosis as I had both the same year). The no cure part of the mess puts a whole new spin on uncertainty that I would have never suspected the extent of until I ended up with an incurable cancer. The "how long do I have left" can haunt me on occasion. I am choosing to be homeless now because I ...

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Facing Cancer with Courage and Grace or Tears and Fears? Me, I cried--a lot by Barbara Tako, breast cancer and melanoma survivor
April 14, 2015
To add to your "don't" list - don't tell people they need to have a positive attitude. That happens a lot with breast cancer. I noticed it doesn't happen with non-hodgkin's lymphoma (I have had both). Personally I am grateful that the non-hodgkin's lymphoma crowd doesn't do the ribbons, the you are obligated to define your self as a patient with this disease as part of who you are..like the breast cancer "culture" does. Frankly cancer is what I had and have, it is NOT who I am.

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Bankruptcy Fears Burden Patients with Cancer
April 14, 2015
Fear of bankruptcy is the least of my worries. Can I even continue to get medical care is #1. I live in a state that did not expand medicaid and my income is too low to qualify for a subsidy. Heath insurance, with $5000 out of pocket deductible is costing me $798/mo. I have payments to MDAnderson cancer center that if I don't keep up they will dump me as a patient. I lost my job over cancer and because of the state laws in this state failure to renew my contract due to cancer. I was too "expensive" for their insurance - they are self insured - isn't considered considered discriminatory (at least according to the EEOC ruling I got although I did get ...

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Working Through Cancer Anger
April 02, 2015
By Yog - when I get that (stay positive) I just tell them that the research has documented that one's attitude during treatment does not affect outcome. People who have had strokes, heart attacks, etc. are not told to stay positive. I ask them what makes cancer so special that we can't feel the same discouragement, anger, fear, etc, that folks with other really bad medical things happen to them feel? Why aren't cancer patients allowed the space to grieve what has happened to us, feel these emotions and process them? Why are we supposed to deny our feelings and act as if we feel positive? That usually shuts up most of them (I say it less bluntly than I am saying it here though

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