Just Diagnosed- Get Prepared
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Imgr, your friend may be describing Medicine Assistance Programs that are sponsored by many pharmaceutical companies to help patients get their medicines at reduced or no cost. Click the link to learn more at the main Breastcancer.org site's Paying for Your Care section.
The Mods
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Thanks Mods ----great idea !
I will add contact a Social Worker(SW) either through your cancer center or insurance company. The "Local SW" may be aware of organizations in your county or region that supply assistance, that are not national. Also, many cancer centers have their own foundations that provide assistance, but they don't necessarily tell you unless you ask. One Foundation we found out about provided 2000,00$per patient grant, but the money couldn't be used for anything medical. It had to be used for groceries, utility, mortgage, taxes etc.--well it definitely got used.
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Thank you both for your knowledge and insight. Will look into it.
With light,
Lmgr
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After all the wise, wonderful advice here I hesitate a little to jump in, but my tip is meant purely for personal comfort.
I discovered early on that there were A LOT of opportunities to wear one of those awful paper gowns for examinations. You all know the kind. They're cold, undignified, and tear like wet kleenex.
No more paper gowns for me. I bought some soft, comfortable cloth mammography gowns on Amazon and carry one with me, along with my binder filled with all my stuff, to every appointment. I just started radiation treatments and I'm very happy to not have to wear the hideous gowns provided. I wash them at home as needed.
Here's the link: http://www.amazon.com/Exam-Gown-Mammography-Patient-pack/dp/B000KFUE42/ref=sr_1_3?ie=UTF8&qid=1337638924&sr=8-3
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sbelisabeth-thanks for sharing ---ALL ideas have value. Never hesitate. Love having you here SAS
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bump---bring your ideas one and all please.......sas
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Folks you are here seeking info. I'm posting a link to a thread that may make some "feel uncomfortable" , but it's important because(b/c). It's a discussion of "Talk of death and dying issues"
http://community.breastcancer.org/forum/8/topic/770023?page=1
Why is this important if you are just being diagnosed. Well none of us "know the hour , or time of our demise". Taking a look at our finances early on prevents chaos, whether or not we pass from cancer or falling down a set of steps. Plus, there are many wonderful suggestions regarding preparing things for your children--young or adult that can make you happy by knowing that you can be doing things now ie. scrapbooks, talks, videos on and on. That even if cancer wasn't in the scenario, you would want to do or may want to do for your kids. When reading as in all threads skip what you don't want to read.
It's listed under the Stage IV mets forum, but again the info is universal.
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Just contacted by a member, I'm not happy. She was not managed well. She may end up with permanent problems because her docs, 5 total. Didn't do there job .
It clarifies why each person here NEEDS to research, so they don't end up with complications of therapy that could have been avoided. So, we depend on our doc's , we depend on BCO, we depend on others when we don't get an answer. BCO gives us the best, but they don't give us everything, What's the answer?
Edit 8/18/12 Well this is what we call a rant or venting. I would delete this post, but viewing it at a different time. It's not who I am , but obviously very upset at the time. So, I will view it as a teaching tool. BCO allows us to say what we need too. That is very healthy.
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Ginger-It is not uncommon, when people put in an uncommon situation, to act uncommonly. Now I've never said that before, but let's analyse it. It is "not uncommon", many people do it.
The "uncommon situation" I have never experienced it before. Other phrases used, "it's out of my frame of reference", "I'm clueless". All of these mean, I don't know anything about the problem. I must seek someone that does. I have a plumbing problem, I call a plumber. I have an electrical problem, I call an electrician. I have a, physical problem, I call a doctor. In each situation, I am trusting that the person that I am calling, will correct my problem to the level of working order, before the problem existed.
Here on BCO our problem started with Breast cancer. This is our common beginning. Then because of the initial problem, other problems may and do occur.
From our common beginning, uncommon things occur. In these uncommon situations, I am trusting that the Doctor that I am going to will give me the best information. Doctors refer me to other doctors in specialty areas, when the problem presented to them, is uncommon to their knowledge base. I then go to the specialty doc trusting that their knowledge is the best up to date information available. That what they recommend, will correct my problem, do me no harm, and bring me back to the level of health, I was before the problem occurred
. Why do people "act uncommonly"? Applying this to our common problem of BC, if I seek information and treatment intervention, and I perceive the information given or the treatment rendered, has caused a problem, I begin to lose trust. When trust is lost or questioned. My action changes. I then seek new information. Until I have enough new information to allow me to trust again. My action may appear to be an uncommon response, to those that have more knowledge than I.
Here on BCO, I come seeking new information to validate what the information or treatment, I am receiving is correct. When a problem is posted by a member, other members respond. Until I can trust again that my information and treatment is correct, I will seek answers. I will pick and chose the answers that resolve my question.
A reminder that BCO management team monitors areas of concern of members. Out of this monitoring, many artcles have been added to the educational material on the main board. Reading the articles on the main board should be a first step. Then coming to the discussion board for further discussion of your problem is helpful. The interaction with others that have a common experiences, validates what we know. We then can begin to trust again.
Common Law copyright allrights reserved. Aug 2012
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There are,also, threads we play, laugh, mock the stupid things said to us. BCO is NOT all serious issues. So, wander down the rabbit hole and find some fun Places to be
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Thank you for the tax information
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San here is the Forum name for financial info
Insurance and Other Financial Issues
it's main category is --Day to Day matters
I'm going to PM you this just in case you miss this. Your best resource for tax issues is your tax advisor. There is a members DH that is on the I&O financial Issues that is willing to answer questions. Thanks for posting --good luck sheila
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Often when you find a delete, by moderators -it has to do with rules of BCO. I have been deleted by Mods b/c it fell under spamming rules. That's fine, there site, there rules. Then there is delete by community. I only experienced it once, but likely falls under BCO rules. Then there are deletes by members. They write something, then decide , it isn't something they want to say. They themselves delete.
So, deletes always raise our curiosty. What was said?????? Ahhh in the space of all time, it may have made a difference and then again not.
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This topic is for instructions on how to create your own information storage place. I have a private topic box and a public topic box. Wish I had them from day one. Hope this is useful to you.
How to use: 2 methods
First method: Read the instructions and do it. Type message in topic box:" Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide)"
Second method
1. Copy instructions from this box by highlighting the section and then click on clrl -C,
2. Then go to the top of this page and click on " All topic>Forum: Recommend your resources" click on new topic--title topic by your screen name & type title i.e. "My personal storage area, Sas-Schatzi".
3.Then put the cursor in box and hit ctrl-v to paste instructions in box. After you have created your own topic box you can delete the instructions. This step is only here if you aren't used to creating your own topics.
4. From drop down box at bottom click on "Add to your Favorites without email updates".
5. First post : Hi, this is my own personal storage space, I would appreciate it that no one posts here. Thanks.(or whatever you decide).
6. For complete privacy (or near privacy) always click on "EDIT" and re-enter your first post. Continue using the same first post for all entries. Within a day the topic will fade away into the computer netherworld.
7. If you don't care about privacy post at will.
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Bump for newbies
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If you get the AARP magazine this months issue dated may 2013, there is a story about the safest hospitals and what safety procedures that are in place that cause them to be safe. The article cites that 180,000 people die a year due to medical/surgical errors AND 400,000 drug errors are made a year. The articles states that these numbers are likely higher b/c these are the ones that are reported. I agree. I know you've seen where I've said on the threads "Sorry etc for too much info, just want too make you(BCO memebers) safer". Guess I should stop apologizing for writing stuff in this regard. These numbers are higher then the last set of numbers that I had known. The problem is either getting worse OR there is better reporting. I'll go with better reporting.
The article cited that one of the safety items was having an ICU Intensivist. It cited that only 35% of hospitals had Intensivist. I was dismayed at this percentage since residencies for Critical Care Medicine have been available since the 1980's. Truly thought by now that the "industry" would have been driven by demand for better care that this statistic would be 70 to 80%. ICU medicine is absolutely in need of a specially trained doc. Just as in all subspecialties of the American Medical Association(AMA), the knowledge and skills of this subspecialty are critical to survival when a patient is at this level of need.
My hope is those seeing this will locate a copy of the AARP article. Read it throroughly. Then question there local hospitals on each item. Based on what they elicit re:safety of each facility, they can choose the safest hospital near them for care. It can mean the difference between life and death, and or avoidable complications. Spreading the word to others regarding this may save lives.
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I am hoping that most of this stuff is due to private health care.
I am canadian and have free health care for major stuff and a really good work plan for prescriptions.
I will be referred to a breast health care centre 40 minutes from where I live....biopsy and mri with dye both performed under their umbrella.
Lots of questions and I have already made mistakes by not asking full disclosure of pathology report. Will contact family doc tomorrow to get results.0 -
diane49, Canada does have good health coverage, but if you don't keep track of all that is happening, you can get lost. It's always a good idea to have ALL reports. Each piece of information is important when it comes time to make many of the decisions for treatment. Since you don't have a diagnosis yet (and I do hope you don't have one at all) there isn't a lot to do but wait for the biopsy results. When that information comes in, things can happen fast after that. Even in Canada, you still want to know the details and keep track because you may not want one doctor making your decisions about your body for you. Good luck.
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Hi Sas,
My name is Laura from Daytona Beach, Florida. I received my diagnosis of BC on May 20, 2013. This is my first time on this wonderful site exploring all topics on this new world that I'm entering.
After reading your thorough and well organized post, I am completely humbled and god smacked with the illusion that I had great organizational skills. You covered it all and I appreciate your post for proactive prevention of paperwork anxiety. Anything I can do to prevent more stress is now one of my top priorities. As much as I think that I can trust my mind, I know that I will be experiencing a great deal of emotions and I might get a lil forgetful.
Sending my love to you and your husband and keeping you both in my hearts.
Total blessings,
Laura
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Holy mother of god. I haven't even got to the comments, but I find all of this overwhelming. You are definitely organised. I am going to copy and paste your post to notepad on the computer so I can remember all of this.
What an awesome post. Thank you so much!
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I did hook up with a nurse navigator on Livestrong.org
Unfortunately I have so much help I need that I sort of lost track of who is who in the zoo.
I asked for a nurse navigator at my docs and they acted like they had never heard of one. Very unhelpful.:(
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Laura and Sparky, and Diane49, Thanks and good Luck as you learn things that help, bring them here and post for others:)
Hello Rocky:)
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Found two new web sites that are a must to review. One is on saving money on drugs. Start with 'home" page , then the really helpful page is the "First time users" Pg.
This next link is dedicated to most of the need to know info regarding work and cancer. BCO has much information on the main board, but this link is much more expansive
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I haven't read this whole thread so sorry if I'm repeating anything. This is how to be prepared for chemo: if you are having a limited number of treatments (4 or 8) scedule them all in advance to make sure there's an opening on your day of the week and a better chance of getting the time you want. At the first one, take a tablet and write down what time treatment started. Then write in it for the rest of the day whatever you are feeling, what meds you took, what you ate etc, all with the time of day it happened. This really helped me because I took the anti nausea med that night at the time they told me to, and 45 min later I felt sick for hours til I finally slept. The next time I took it one hour earlier and never felt sick again. Its good to keep the diary for the first few days because you can refer back to it to see how things went on the 2nd and 3rd day and so on. If there were any issues the nurses usually had suggestions.
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HLB such a great suggestion. Thanks so much, for adding it. This hasn't been mentioned before.
sassy0 -
bump
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I kept a journal during my whole treatment. It not only helped me, but my treatment team loved it when I brought it to appointments. It really helped us address side effects.
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Bump
Auntien thanks for contributing:) anytime you come up with new ideas, please share:) sassy
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To all, we all have discussed chemo/ anethesia brain. We now can call it anesthesia/chemo/drug brain. This article is in AARP magazine. It discusses the drug classifications that can cause memory loss. It describes why each drug class can cause memory loss. It gives specific names of drugs. It gives alternative drugs that can be substituted. I would suggest reviewing it with your prescribing doc if you have concerns regarding any of your meds. I also suggest you put it in your favorite places on your computer. Also, printing it off for future referrence if you have a printer. Please, pass this on to other BCO friends, friends etc.
sassywww.aarp.org/health/brain-heal...
Haven't been here much in alongggggg time, but this artcle is a MUST SHARE type with those I care about
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Reserved for memory loss discussion when I get to it.
Edit: 8/31/2013 forgot what I wanted to write. OH well:)
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