Just Diagnosed- Get Prepared
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Grandma Megan you are so sweet. Thanks
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Bump
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Recently someone asked about how to find a thread that you are comfortable with. These were some thoughts
Lurk for awhile to see if someplace you want to be.
Read the topic box. It defines what the original poster wants to accomplish with the thread.
Then pop in with an intro post along the lines of "Hi, Blah, blah".
Write down the page number you left off on. Then when you return you know where to start.
If you feel like memory is an issue, write notes about members. Helps when there are lot's of folks on a thread and it's moving fast.
Use split screen 1. reading screen 2. typing screen. This is my go to way of doing it.
sassy0 -
When I first moved to bco's forum 8, I asked for directions and the Divine Mrs. M. told me that bco is a country, each forum is like a town and the topics are like neighborhoods. While I haven't wandered far from my own neighborhood and town, I heard from Sas-Schatzi that you might be interested in reading this analogy.
First, using Command-F, I search for a term in All Topics (that's how I find News and Holistic approaches).
But, if nothing pops up, I'll use the search function to find a particular topic.
Yesterday, I wanted to find a topic on breast cancer activism, advocacy, history, culture, media, books, films, etc., but couldn't find the right forum or topic in All Topics.
Finally, I searched for Pink Ribbons, Inc. and found Crazy Town. The enlightened locals directed me to Pinktober Revolution at https://community.breastcancer.org/forum/102/topics/791442?page=97 and I was able to post a news item about the new book by Breast Cancer Action's deceased leader, Barbara Brenner - Think Before You Pink!
Heading back home now, Stephanie
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Sometimes we want to find and meet a bco member -
Maybe we like what a member says in a forum or their situation is similar to ours or we want to get a sense of who they are by what they share where and when.
In real time, it's easy to click on a member's avatar - their picture - or their underlined name beneath it.
This will bring you to All Topics → Community Member List → Profile for **** where you'll see their # of posts, when they joined and when they last visited. There are sections for Biography, Diagnoses, Treatments and their most Recent Posts.
To see all of their posts, copy and paste their name into a separate Search. Don't try to use your memory in the Search function without an exact screen name - this is a recipe for disaster as there are 173,051 members and one misremembered letter, number, character or space can lead you nowhere quick!
I've had no luck finding members with the Member List. Maybe someone with good luck and skills can explain it?
If there's someone I want to keep track of, I'll often add them as a friend, even if I don't send a Private Message (PM) right away. That way, I've captured their screen name for later use. This works well for members who post infrequently.
Now you know lots about the member. Sooner or later you may want to PM them. If the member is already your friend, just select Private Messages, use the pulldown To menu to find a screen name and write away. Be aware that you won't see the message you sent until or unless the member replies. So, think before you click!
Finding someone from past topics is harder. Try narrowing the search function using Keyword, Forum or Date. With 80 forums and133,943 topics, finding someone or their post again can be a fruitless task. The more focused your search, the better your results.
With a search result, you'll find a list of posts on a topic. You can choose to click on the post title or just click on the member's name.
Do check the date of the member's post and when they last visited. I'm a member of Forum 8 and many of our members have moved on. If curious, I look at their date of last visit. If their trail is cold, copy and paste a member's screen name into Search by Keyword. Perhaps another member has sent an update more recently.
Of course, the easiest way to start a friendship is by getting together at a topic and talking for a while. For privacy or to not tie-up the group topic with side topics, consider PM'ing the member and taking the conversation out of the public forum.
I hope this is helpful.
Sas-Schatzi, be sure to send feedback. And any others with better tips for navigating bco - chime in!
healing regards, Stephanie
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You are all amazing! Longtermsurvivor, this is incredibly helpful. We are thinking we'll add it to the first forum: Info & Resources for New Patients & Members - Please No Posts!.
Also, we just made this topic a "sticky" topic, hoping it stays at the top.
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Hey mods,
Glad you think I got it right. Do hope it's helpful for others and fine to post to a wider audience, just credit me (Longtermsuvivor ~ Stephanie).
And add your two cents too.
Surely finding someone on the Member List can't be as difficult as it seems!
Great gratitude for all who participate in bco (even the listeners!) ~ Stephanie
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Stephanie, that's just such great info on finding someone. Been their done that, been so frustrated. Just as you say one something off and the computer doesn't give it too you.
I laughed at myself when you said about " Be aware that you won't see the message you sent until or unless the member replies. So, think before you click!"
After being here 7 years, a friend pointed out the "sent" just a few days ago. I clicked on it .Sheesh. Never saw it in 7 years. The PM had a research link I wanted. Clicked on "sent" and we found the PM.
LOL I did a cut & paste from my own PM site as an example. Then clicked to see connection. Took me to my millions of PM.s Deleted it. Hahahaha
The key to retrieve sents is to click on sent.
Thanks so much for posting LTS, All pearls are appreciated.
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LTS Just as the Mods have recognized your post as important. We members can identify a thread that is important. Leah recommended this thread years ago. I was happy. The thread was done during a very tough time. Then it was called "pinning". Threads would have a little yellow push pin next to them. Now there are different symbols.
When BCO reorganized things were changed. JD-GP ended up https://community.breastcancer.org/forum/5/topics/820075?page=1#idx_1
Remember to ask them where they will highlight your thoughts. Of course it will always be here. I'm guessing you have computer skills. I tried a thread but it didn't take off. Methinks you could do way better. I'll link it. BBL with
Okay back
https://community.breastcancer.org/forum/26/topics/826154?page=2#idx_36
The concept was right, but I'm only marginally proficient. Take the concept and see what you can do with it.
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Sas, you are amazing!
Thank you!
Now I can retrieve my "sent" messages.
Okay, here's something I once did by mistake and can't do again - how do I look at all my friends?
There's the pulldown <send-to> menu in the PM option...but that's names only. I know I saw names with avatars once, but can't find again.
It takes a village to create a well-working, fully-ordered mind.
Thanks for helping me to think and find my friends' avatars.
healing regards, Stephanie
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Stephanie Thanks, but oh so funny, I only "saw" the sent when a BCO friend pointed out a few days ago. I've been here 7 years. I too, was frustrated about not having access to sents. What a hoot. After we cleared that up.She said" I always wondered why you asked me to send a post back?" Sheesh.
With friends go to the left menu click on dashboard, scroll down to friends. Wahlah. You should see it.
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Oh my goodness gracious!
There my friends are on the dashboard!
Thanks so much Sas!
warmly, Stephanie
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LTS
SAS0 -
On a mission regarding bladder control hope I don't get banned b/c of spamming. Love ya'll
Repost from Warm and Fuzzies. not appropriate to the site , but there were a couple of bladder leaking meme's. But this is a serious story has to do with the funny one about bladder leaking. All the docs will tell you about kegels. WELL, I inadvertently found a solution if you are a swimmer.
There is a swim stroke that I can't find the name for which I learned as a kid. It's meant to be a stroke to reserve energy if lost in the water and have to swim a long distance. I have been using it more frequently b/c I had a shoulder injury and was working the deltoids.
LOANDBEHOLD. The stroke increases bladder control. Takes maybe 2-4 weeks, but dependent I'm thinking on how often you use the stroke. I vary 3 strokes for particular reasons. Then I noticed better bladder control.
It's a back stroke. You bring up the arms from the side to the top. At the same time you bring up the legs in a frog position. Then you snap them down and glide. I kept working the movement harder, to get the work out of the deltoids. Then TADA, head slap moment, I noticed I didn't have the run for the bathroom after the pool or the hitting of the air conditioning. It was AMAZING. I know this isn't a funny on a funny page, but I'm posting this in as many places as I can. So, hahahaha. Leaking is no fun hope it helps, spread the word.
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Hello friends- Sassy asked me to post something about BCO and why this site is an important resource to women, especially for you that are recently diagnosed, but for some of us who are a bit down the road on this stuff. So here we go.
I was diagnosed in the fall of 2012, had lumpectomies and internal radiation. By the spring of 2013, I was through the majority of treatment and started the aromatase inhibitor medications that often follow on for those of us who are estrogen positive with our tumors. That was also a good six month adjustment due to side effects to those medications. It took a long time to really feel better from everything, and that is to not discourage you, but so you can be patient with yourself not only as you go through treatment but during the recovery process. It is okay to let folks know you won't be bouncing back like you had the flu or something. And yes, some people do seem to expect that.
I will share some interesting parallels between two things I have gone through in life; the experience around a major loss of a family member and related grief process, and then when I got my cancer dx (and a whole lot of other bad things as mentioned previously). What I have noticed there seems to be a general time table on things like grief or recovery from cancer treatment by others, and have always found that to be very odd. I have never been one who appreciates being told how to feel about things by others or for how long.
At age 32 (I am now 56), I had an older brother who became ill with a rare lung disease and whom passed at age 40. We were very close and it turned my world upside down, along with the rest of the family. It took me a long time (maybe the rest of my 30's) to really heal from that loss. With time and grief counseling, I found my way through and even to live life a bit more purposefully. There were comments during this period about that loss, getting on with things, over it, etc. I learned then that people were not interested in dealing with my pain for very long. With time, many of them were in similar situations with the loss of someone they cared about and later commented how they never understood what I was going through until it happened to them. Sometimes people just cannot relate, get scared, or just lack of empathy for others suffering. Most people mean well, but many people are able to understand all we go through.
With cancer treatment, I felt a lot of the same thing, except instead of it just being an emotional wound, there were the physical ones too. We end up with physical and emotional scars, some which the world will never see but that we live with. Never mind the longer term SEs from the treatments we go through. Recovering from cancer treatment takes years, it has for me. We are not the same after, just as you are not after the loss of a loved one; we are forever changed, lives take on a different focus. But yet, there is a time table that seems to show up in these situations too. And again, I think that is odd.
The reason many of us came here to BCO is that it initially met a need each of us had for support during diagnosis and treatment. And for those of us that remain, it continues to meet a longer term need as we work our way into a new normal. We have a community here that is a resource for women both short term and long term. We like to help our sisters who are newly diagnosed in the ways many here helped us, to be with those living with cancer through their Stage IV diagnosis, and sometimes to just talk about things that matter to us. We are here because this is a place that provides us support without a time table. Coming here is so refreshing to me in a world that is filled with "aren't you done with that yet?"
There are so many great threads here for each stage you go through from the tests right after diagnosis, through treatment decisions, how to deal with the relationships around you, questions around insurance and financing cancer treatment and more. There are also places where people don't talk about cancer, but have a place to talk about other things. Gardening threads, quilting threads, animal threads, and more. So take a look around and find what helps you most. Many of us are on some threads for awhile during treatment, other places we stay for the longer term. I like to let folks know when I need to leave or will be gone for awhile for any reason. We worry about each other here, like to check in on each other to make sure folks are doing okay. Our friend Sassy is a great one for making sure we are all doing okay!
We are sorry you find yourself here, but you have also landed in a great spot for much support during difficult times. We wish you the best on your journey through treatment and back to wellness.
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Thank you Jazzy, your words are masterful
Bless you.0 -
I just got diagnosed today. I feel devastated.
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Sophiem, I'm so sorry that you have joined this club. I'm also so happy that you have found this site. It is full of great information and a community of sisters that have been there and can offer great support.
I think we would all say that the beginning and the waiting for all tests results and treatment plans to fall into place is the hardest. Until that happens, arm yourself with knowledge from trusted sites like this, stay off of Dr. Google, and keep reaching out here.
<<hugs>>
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Sophiem, I would also encourage you to start your own thread. It will be more likely to be seen.This particular thread may not get as much traffic.
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We were just told today my wife has Breast cancer after a rountine mammogram and biopsy test 2 days ago..we dont have an oncologist yet, just starting process. This list is helpful thanks.
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hi!
My ex husband just called me, we have not spoken in one yr! We have 2 children together. He told me that his wife has triple negative metaplastic carcinoma
She is 50. We are not fond of each other and all of a sudden I'm in this chat room online researching
I just signed my daughter and I up for the susan Koman
Walk. This is what I do.
I have reached out to her but I will let her call m
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does anyone have any suggestion she has kaiser
But does not want to be treated at kaiser
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Hi Meredith, Sorry you are going through this, and on top of it the unusual thing of the family scenario. If her insurance is Kaiser, she may have more likely definitely will have problems with insurance coverage for treatment if she is not treated "In-Network". Out-of-Network charges are generally very steep or not covered. Suggest that she talk with her insurance company.
There is a Triple Negative thread. Check the forums for the link. Good Luck.
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Hello,
I'm new to this diagnosis, I'm scare and angry because I go every year to get a mammogram to prevent this from happen, but I know that mammogram do not catch a small portion, but my cancer was 4.0 CM in front of my breast and the breast ultra or mammogram did not catch it because the machine was out dated and needed updated software. Maybe if I had a chance to get this disease in the early stages, I could have saved my breast from being removed immediately. I'm in pain all the time and very numb, I'm on hormone therapy, but scare of chemo or radiation, need help to cope.
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Diametri, So sorry for everything you are going through. You have expressed lot's of feelings here. The consideration that better equipment can make you crazy. If the staff said that the machine was outdated, and you were only told of it after. That could be a legal problem. Attempt a legal consultation.
Check the forums for the particular hormone that you are on. Each of the hormone drugs have their own nastiness. Women on that particular forum are the best to consult and commiserate with. They can help you cope with what's going on too.
What drugs do they recommend for chemo. They're are general chemo groups and specific chemo groups. I suggest joining both. They're is also a Radiation group. It's a whole different thing to deal with. Talking with folks that have direct knowledge of rads is a good thing to do.
Where are you being treated at?
Are you getting breast reconstruction?
Coping, is prayer in your belief system? I couldn't have survived without it, but it is not everyone's way.
Please, go back and read from the beginning of this thread. Some is repetitive. As you go along you will be able to slide by the repetitive.
You want to talk with someone now. Their is a thread I can direct you too that may help.
This link is to a thread where many newbies(you are a newbie) go for support
https://community.breastcancer.org/forum/84/topics/833500?page=236#idx_7059
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thank you I just needed to get somethings out, I have not even did chemo yet and just have one hormone therapy medication Im doing so I needed someone to reply back and you did.
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bump
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Bump
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Hi anyone outthere can please help me I have just been diagnosed with stage 2 cancer in right breast . I feel so alone.
Suzanne
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