Just Diagnosed- Get Prepared
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Beachbum1023 --- Agh! I am so sorry to hear you got shingles! That really does suck! --You know, I don't think my MO mentioned the shingles vaccine, either, and he's good at that kind of thing... but I'd been freaking about shingles every since I saw my dad go through it and had been asking for the vaccine for years. I'm just glad I heard from this forum that I should get the vaccine before treatments. There's just so much going on, it's hard to keep track of all this stuff... I was lucky I was just so paranoid about shingles and that someone here mentioned it!!!
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Hi April, I have a bunch of binders for paperwork, drugs, info, billing etc. that keeps me going. Too much info to remember for me. And I carry a calendar book and a notebook in my purse to keep on top of questions etc. It's a full time job staying ahead of all this.
I hope you are doing well, I see you have been at all this for a while
Take care, Cheryl0 -
I have binders, but they are a disorganized mess. I totally rely on my big calendar book, though! Carry that thing nearly everywhere I go!
Yeah... it's been a long haul since DX in November! I'm over half way through rads now and am seeing the light at the end of the tunnel, so all is good! It will be almost strange not being caught up in treatments all the time. It's amazing how we all can adjust to these things.
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Hi April, I started out well being organized, than got too sick to care. But I pulled it together towards the end of rads and got organized right about the time the paperwork slowed up. So I'm down to the stack of paper to be filed. I keep a basket that I drop the new stuff in and deal with it watching TV. I hope I can keep it going from now on. In three days I hit the big one year anniversary of this trip to hell. Amazing what has happened in 12 months! Good Luck, just keep at it. Cheryl
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I hope things have settled down for you a bit by now, Cheryl. I won't reach a year past DX until November--but I'm hoping to have a lot of this behind me by then, and get back to a bit more normal life! (I'm still in the middle of rads right now, but it's going along OK so far.)
My sister's name is Cheryl. Were you a 50's baby? There were a ton of Cheryls when I was growing up... Not so many these days, but it's a cool name and should come back into fashion, I think!
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Hi April, I was born in '56. I guess I was so excited to see the last year go I never thought I may start this crap all over again. I went for my 6 month mammo, and "they see something". Yikes! So after being called back three times for more pictures, they called me back for a US. And told me to discuss it with my BS at my 6 month check up appointment next week. Not too sure if I should laugh or cry, but I am going to live in denial until then. Makes me sick to even think what could be coming my way.............again. Not fair. Cheryl
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This is a repost of Divine's description of threads. I though I'd share it with you. (With permission)
3 hours ago , edited 3 hours ago by TheDivineMrsM
There's a reason why threads have titles. It gives you an indication what to expect the subject matter will be. I don't read all threads, just pick and choose. I follow this thread because I appreciate the information and find it educates me. For some, this thread is too much. But ma set the tone by her opening comments, God bless her. There are many threads that don't pertain to me (example: moms with young children), so I don't read them.
This forum is what you make it. It's not one size fits all. Its not like one big library where everyone must speak in hushed tones. There are separate "rooms", go to the ones where you feel supported. Most churches have a basement where alot of hoopla goes on, but you wouldn't carry that into the sanctuary which is more sacred. We move around and spend time in different rooms on this forum depending on what we are experiencing. Find the ones that nurture you.
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Hi Beachie and April, Happy that you are keeping the thread moving. I saw your posts when I came to repost Divine's post. I must have deleted this from my favs somehow.
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Bump
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bump
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Hey, sas, glad you're here to bump.
Cheryl -- best of best wishes and thoughts sent your way!!!
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Remember, those getting chemo... as many tests as possible done and out of the way... also stuff like bone density tests which won't find cancer, but which might be affected by chemo and which you might need a base-line for (particularly if you get certain hormonal treatments later). Also-- dental care that you might not want to do after chemo starts, since it can stir up infection when your wbc might be low and not able to deal with it. And maybe get that shingles shot, since shingles tends to pop up when immune functions are stressed, which chemo can do.
... It's all craziness at the beginning, but things settle down eventually...
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Hey Ladies, thanks I have the bone scan in the bag but no results yet. Still have the blood tests and CT before I see the MO on 10/13. And the Cardiologist the beginning of October. Living in denial until I know the results but feeling like crap. Ugh. I went on the Casting for Recovery retreat and had the best time ever. Look for it online and apply, you will love it even if you never fished before. I had three bags of gifts coming home!! We are going on another weekend mid October as the Alumni group. Until then I guess I get prepared for the "news". Or not!
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Beachie sounds fun. Any chance you could put links?
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sas-schatzi wrote:
Cheerleading for BCO. They are our home, our resource, we gain so much by being here. They have costs. Let's help.
They make periodic requests by email. They're is the donation link in the header. An easy way for those that do online banking is to set up a donation on a predictable basis.
We need to do this. They take care of us. Let's make sure we take care of them.
You don't have to send a check. Do it simply in your online banking. But if you are still stuck on checks.........
To donate by mail, please send your check payable to Breastcancer.org to:
120 E. Lancaster Avenue | Suite 201 | Ardmore, PA 19003link to BCO Our biggest advocate
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Hi Sassy, I don't know how to do that, but it's online I found it on Google. The retreats are by state, and I believe that 33 states now have them. But a great experience! I had a blast.
www.castingforrecovery.org
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Beachie, it's very cool. I used your link by putting it in the URL box. I'll bring back a working link
Link to homepage http://castingforrecovery.org/
This link explains about the Casting for Recovery Mission and history
http://castingforrecovery.org/about-casting-for-recovery/
Beachie, I checked out Florida. Thinking about your description of camping. Florida we have too many creepy/ crawly things. Lo and behold the retreat 'Lodge' is a beautiful Hilton Garden Inn in Lake Mary Fl. They must travel to one of the many lakes outside of Lake Mary. Thanks sassy
Beachie, I applied for the next retreat in Florida which is scheduled for April 2016. It's a lottery type selection. I'll let you know if I get lucky
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Sassy, Thanks! Everyone should apply for it, Good Luck! This is the loft at Indian Bear Lodge, beautiful! It sleeps 20 and every inch is gorgeous. We had a great time, campfires, hot tubs, wineries, and wonderful food. I came home with three totes of gifts too! I hope you are selected!! Keep me posted. Cheryl
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That wooden lodge is my idea of heaven!!!
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Carolina--------------I agreeeeeeeee.......
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Well Ladies, it sleeps 20, so I think a gathering at Indian Bear would be perfect! And they have hot tubs, and a new winery right next door that we can walk to. I tried to stay.............
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2 minutes ago , edited a few seconds ago by sas-schatzi
sas-schatzi wrote:
Cheerleading for BCO. They are our home, our resource, we gain so much by being here. They have costs. Let's help.
They make periodic requests by email. They're is the donation link in the header. An easy way for those that do online banking is to set up a donation on a predictable basis.
We need to do this. They take care of us. Let's make sure we take care of them.
You don't have to send a check. Do it simply in your online banking. But if you are still stuck on checks.........
To donate by mail, please send your check payable to Breastcancer.org to:
120 E. Lancaster Avenue | Suite 201 | Ardmore, PA 19003link to BCO Our biggest advocate
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
https://secure3.convio.net/bco/site/Donation2?df_i...
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Repost --great info
Oct 12, 2015 09:24PM Brendatrue wrote: First, a little business matter. I mentioned in a previous post a book that was created by the American Bar Association and AARP: Checklist for My Family: A Guide to My History, Financial Plans, and Final Wishes. I bought the book from Amazon and learned that there is a website where anyone can download the checklists that are included in the book: http://www.americanbar.org/publications1/books/aarpforms.html This is a great resource for those who are trying to tackle those "loose ends."
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Hey, sas, I'm glad you found the ABA/AARP collaboration to be useful and decided to repost it here. Even if someone is not interested in clarifying and finalizing all the matters than might occupy one's mind at end of life, every adult--those with cancer, those without; those with Stage IV/mets, those with earlier stage disease; those who are healthy, those who are dealing with illness--should spend time thinking about and communicating the choices s/he would like to have made about end of life care. For more information on advance care planning, check out either or both of these links: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3277 and https://agingwithdignity.org/five-wishes . Also, on the first site, you can choose the state in which you live and be directed to the state-specific advance directive (free), and on the second site, you can choose to order the Five Wishes document (mail or online, $5). Being prepared has many benefits!
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Brenda, thanks so much for those links
Please, if you have any other pearls of info, they would be appreciated 0 -
Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Here's another good resource: The Empowered Patient Coalition, described as a " charitable organization created by patient advocates devoted to helping the public improve the quality and the safety of their healthcare. The coalition feels strongly that the first crucial steps in both patient empowerment and patient safety efforts are information and education. The public is increasingly aware that they must assume a greater role in health care issues but they need tools, strategies and support to assist them in becoming informed and engaged medical consumers who are able to make a positive impact on health care safety." Here's their website: http://empoweredpatientcoalition.org/
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http://empoweredpatientcoalition.org/
Made it hyper. Thanks Brenda
Great site0 -
Please, read the topic box and the pages from the beginning. sassy
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Bump
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What a well- thought out , generous, post. My extremely organized mother would be proud of you. When I show her your advice ... I'll hear it directly. So far, I've covered the beneficiary changes for life insurance, disabiliity ,and all work- related benefits. Final paychecks, leave reimbursement, and retirement, etc. To be sure the money will be divided as I would want it to be. This gave not only myself, but my family , peace of mind. Not an easy subject, but an absolute necessity. I have a lot to do still, and will definitely follow your outline , as a guide. Thank- you for the hard work, and time. You put into this. I've always said, none of us know when " our time " will come. It could be from the cancer -ultimately, or we could step off a sidewalk, and meet an unfortunate end. Or, of course go peacefully in our sleep (my petsonal preference , of course). The diagnosis of cancer , as painful full as it is... does have some benefits, other than the obvious ones. Realizing life is short, enjoy what we have now. Having family, and friends, and even complete strangers offer their support- priceless! And specifically - articles such as yours, that remind us to do what needs to be done. Thank-you, for helping me to be less of a procrastinator. Bye for now. I have to go dance with, and spin my soon-to-be , 2 year-old granddaughter around the living room. Hearing her giggle , will make one of my expanders, the one with seroma , hurt less. May even make my new port for up-coming chemo... feel non-existant. Most-importantly, of course, will be sharing that moment with her, and remembering to try to live , each day, as normally as possible. " I'm coming ,Ariella ." Xo Grandma Megan
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