Illinois ladies facing bc
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determined about d....e...l.....or
i ditto your stuff. I spent 20 days with my mom since june at d.... nor hospital, 24 hours a day.......
i am seriously thinking if i come out of remission i may need to switch if i ever get de.....nor hospital sick enough.......grrrr and the hospice they picked sucked. Seasons hospice from chicago, i have several gripes with them as well. ONE MUST INTERVIEW HOSPICE PEOPLE....THEY WERE FOR PROFIT,.....THE LAST STRAW WAS THE NURSE TELLING ME I COULDNT CALL OR EMAIL HER EVERY 15 MINUTES AND .........THE OTHER LAST STRAW, NO IT'S TOO LATE NOTICE FOR A VOLUNTEER TO be with your friend with your mom tonight....besides they are mostly from chicago and they dont volunteer that far.....wtf?
back to de...nor....
I cant count how many times i called for nurse to measure mom's out put.......... and the last day before she came home.........8 am i called 830 i called, 4 pm i came back before she was to be discharged (went to get pharmacy meds)......and she still was laying on wet pad! GRRRRRRRRRRRRRRRRR FRICKING GRRRRRRRRRRR
they also dont give you toothbrushes and the pack, i hear sherman still does...no one ever asked about brushing her teeth.................. i found after the 7th day the first round, a sign on the paper towel holder INSIDE THE BATHROOM WHICH MY mom had not made it to yet, "ask staff i you need toiletries"
i could go on and on and on, i'm still bitter even though there WERE good people there, but OVERWORKED 12 HOURS SHIFTS ARE AWFUL!
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Hi, California is still great and the cold is getting better. Just wated to pop in and tell you, Kater, that you are so good to your mother. How frustrating for you to see professionals who do not care for her medical needs. That is sad about the message in the bathroom in your mom's room. She is so lucky she has you. You are a good daughter! Susan
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Kater - Thoughts are with you...
A beautiful sunset at our forest last night...just sharing:
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Random questions for you ladies:
I am flying this Thursday (first time since my surgery which was in June)
1) will my port set off the metal detector?
2) will I be asked to remove my hat / scarf?
3) I have a lymphedema sleeve to wear (for the first time) anything special I need to know about doing so? (Such as - when to put it on & when I can take it off)
Thanks!
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Morning girls....Kater you were always there for your mom and now she is resting peacefully. May you always have happy memories and your heat heal. Hugs to you.
Laura....your sunset is amazing. I would be sitting there with a cosmo in hand watching it go down except I would like to be on the beach watching it go down. lol
Ginger...sent you a pm
Zap...glad to see that you are enjoying California. Hope your cold gets better. I use airborne every time I fly. I start the day before I leave and before I get on the plane. Drink lots of fluids while flying this should help. Have fun!!! Be well
Jackie...thinking of you as I walked around the lake this am. So peaceful and cold brrr . So spiritual. how are you doing? are you enjoying your time off.
Wendy....where are our beach chairs?????? It's too cold out here. lol
Just stopping by for a quick hi to all. Going to a Hawks game yeah!!!! Go hawks!!!
Have a great Sunday....ahhh the weekend is almost over then back to work grrrrr.
Be well everyone.
BJ
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Good morning everyone. Usually I put the quote in first --- but today seemed much more appropriate to say what I wanted right at the beginning. The moment I read the quote I just zoomed back to the very first time I posted here. I thought about all the understanding, love, help, compassion, and it has all continued. We have moments of fun, a little light banter now and then but Rita -- I think your vision has remained. We are not about who is the smartest, richest, neatest, or neediest.
We are still about shining a light through the darkness of this disease. It is still about helping and caring and honoring those who walk this path together. We hold each other up in the down times ( often when it's test time ) and we try to help and make it easier for those beginning their journey. I feel such gratitude that all of you are here still sharing and still caring. I hope our Illinois Girls thread remains the source of deep comfort for new and old alike. It has been home to me and remains such a constant source of love and positive energy. I pray it remains the same for each of you.
Hugs, Jackie
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"Don't reserve your best behavior for special occasions. You
can't have two sets of manners, two social codes -- one for
those you admire and want to impress, another for those whom
you consider unimportant. You must be the same to all people."
-- Lillian Eichler Watson0 -
Jackie...thank you for reminding us why we are here and how important it is that we stay this way. You are and always have been a wonderful source of spirituality for us. Thank you for sharing your insights and quotes with us. You are the best!!!!!!!!!!!!!!!!!!!!!!!!
BJ
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Stephanie It shouldn't set off the metal detectors but it really depends on how sensitive they are. I know that Providence, RI tends to be very sensitive. My doctor gave me a little card to keep in my wallet. Make sure you bring that and let them know you have a medical device implanted if you are worried.
Gee I'm going to have fun the next time I fly. Port and 2 TE. I don't have any card or anything for the TE and I know there is some metal in them.
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I did get that card lago .... now if I can just find it - LOL
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Gingerfav: My port did not set off any alarms. I was Not asked to take off my scarf, but was given a very gentle pat down along my head and back. And the lady that checked me leaned over and whispered Good Luck in my ear. I put my sleeve on when I got into the plane and took it off when we landed. One more piece of advice, I flew southwest air and asked at the desk at the gate to please have a blue priority seating card so I could get a front row. They gave it to me every time. No questions asked. Although kinda hard to refuse a gal that is wearing a scarf and has no eyelashes and no eyebrows. Hope this helps.
Navy
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Thanks Navy - that info helps. A blue priority seating card huh? I am flying Delta, wonder if they have such a thing. I don't think I went for assigned seating either. Hmmm.......
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P and I are gearing up to return to cold, wet weather, but I am ready to be in my home with my cat. We did see a mission yesterday, Jackie, and it was magnificent. It was the Mission of Santa Inez and was built in 1840. I could feel the history it held. That was after the winery. We thought it meant a tour (leanring how wine is made) but it was wine-tasting and that does not mix well with head colds, so we headed for the mission and this olive oil testing place.
Blackjack, that early walk near the lake must have been wonderful. I would like to do that with you one day.
While we have been gone, it was the mission of my two daughters to clean out all the "stuff" they have collected through their childhoods (one daughter said she found school hall passes from third grade and she is 27).I think it was a bittersweet experience for them, to shed all the things of childhood. One daughter is a hoarder, however, so we will see.
Wendy, I love your facebook one-liners, but I really miss your more involved post heres. How are you doing?
So last full day in California. This has been a very good thing. I really could get use to this ocean and these mountains and these missions!
I hope this finds all happy, at peace and feelin better today than yesterday!
Susan
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Jackie, and all the wonderful women on this thread. Your note this morning was so wonderful, as I sit here two days away from my BMX, and hopeful that there isn't more bad news waiting for me once the pathology report comes back. I am reading only this thread, and the November 2010 mastectomy thread, from which I am drawing comfort and strength. I will forge ahead through this diffficult week, my mother and father in law came into town and are graciously helping with the children this week (both my parents are gone).
But today is a tough day and I am sad that my family has to go through this experience at all.
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Lisa, Mom of Four.......Gentle hugs to you today. I am hoping and praying that all your news is good news and that the surgery goes well for you this week. You are lucky to have your in-laws to help with your children and your household. They will also be a comfort to you. Just as you are wishing that your family didn't have to go through this experience, they are wishing the same about you. All of us are wishing the same about you, too, but we know from experience that wishes don't seem to get us very far in this journey and that the "doing" is what eradicates this from our bodies. We will all be here for you......for as long as you need and want us! Although everything seems so mind-boggling, frightening, and overwhelming right now, it is doable. Unfortunately it's just not one of those things we want to do. Take it one step at a time and one day at a time. I learned a long time ago that we can do anything that we have to do for one day. We get through that day and then we work on the next.
We will be eagerly awaiting a report after your surgery. If you have a computer savy person in your family, please have them post results after your surgery so we know how it went. My thoughts and prayers will be with you this week and for the recuperating weeks that follow. I know you'll do just fine because ILLINOIS GALS ARE TOUGH!!!
Rita
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Jackie, what a wonderful quote today and what wonderful words of wisdom! It never hurts to be reminded of why we all came together, how much we have bonded with one another, and how important each and every one of us is.......as we continue to encourage and help each other. I really don't know how I would have gotten through the chemo without this group of ladies and I find it amazing how strongly we've bonded as we've continued our journeys. That's why I stay around..................to try to help those who are experiencing the same qualms, fears, and feelings that I once experienced and to share the nervous anxiety with those facing those "routine" check-ups, because we all know they aren't really that routine. Thank you so much for your inspiration.
Rita
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Kater - My sincere condolences to you and your family.
Stephanie - I put my lymphadema sleeve and gauntlet on about an hour before my flight, and kept it on about an hour afterward. Someone (maybe Wendy?) offered me that advice and it made sense to me. They did manually scan my sleeve, but seemed to be aware of what it was.
I did end up taking off the gauntlet about halfway through the flight. My fingers were feeling numb and my joints were killing me. The sleeve was no problem though.
BJ - Enjoy the Hawks game! I still have never gone to one, although the rest of my family has several times. One day. Btw, did you get my last email?
Lisa - Consider this a big virtual hug. I'm so sorry you're having such a tough day. Unfortunately, tough days become a part of our world with this damn disease. But you sound like you are hanging strong and getting the support you need from not just the shared experiences of the people in these forums but from your family. It's so hard to deal with the double weight of our own sadness and our family's. Strength and love are the things you have to focus on to get you through all this hard stuff. I'm glad you're reaching out and sharing how you're feeling. Wishing you all the best and an easy recovery from your upcoming surgery. *more hugs to you*
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Jackie... thanks so much for your daily words of inspiration. I really do appreciate that you take time to do this for us.
Stephanie... I have flown several times in the past few months and have been experimenting somewhat with the TSA. Each time its "wig" vs. "scarf" and still trying to figure out just what it is that almost always gets me pulled aside for further pat down and lately I nearly always get asked, or I should say "ordered", to stand in that wonderful full body scanner... just what I need, more rads. That must be a sight to see with BMX, TE's and a port. I will say that the TE's and port have never set off the magnetic scanners. Last weekend, I left the Seattle airport with no incident at all... just walked right through.
The first time I flew after surgery, I was still going through chemo and had not yet picked up a lymphedema sleeve. It was a short flight and had no problem. Last weekend when I flew out to Seattle, I thought that I had put the sleeve in my carry on bag, but got to the airport without it. I decided to go anyway, had no problem but bought another sleeve in Seattle to wear on my way home. Usually, I would put it on at the airport while waiting for the flight and leave it on for a couple hours after landing. I am headed to London next weekend and am a little concerned about the 8 hour flight. So far, lympedema has not been a problem. Hope to keep it that way.
Lisa.... I am sure this is an anxious time for you waiting for your surgery. I had my BMX last April and I well remember that anxiety. It sounds like you have a very busy family and so wonderful that your in-laws will be there to help with your kids. The morning of my surgery, my plastic surgeon stopped by my room just prior to surgery and said "this is a good day!". I thought WTH??? Then he proceeded to tell me that this was the day we start to get rid of the cancer and move on. Well, okay... it took me a little while to see it that way, but now that I look back, he was right! Hang in there... you will soon be on your way to recovery also.
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thank you ladies. I appreciate hearing about your experiences & will keep you posted.
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Stephanie according to this site: http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
"Wear your garments for air travel, and for an hour or two after you land while your arm recovers from the pressure changes."
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Lisa I know this is going to sound weird but I was much more relieved after my BMX. I felt so much better knowing the cancer was out of me. I'm sure your surgery will go well. I hope you have the same sense of relief I did afterwards. Also it wasn't near as bad as I though it was and I wasn't even taking pain meds (because I never needed them). But be sure if you need the meds to use them. That's what they're there for.
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Joan, Steph and others -- lymphedema seems to come ( if it ever does ) on its own schedule. In addition to flying, if you are going to be doing repetitive movements for a long stretch I think it is recommended that it be worn. So far I have not done that and hope I'm not asking for trouble, but I only "lost" three Sentinel nodes sooooo.
As well, I heard a gal say that she flew over a hundred times and had no problem.....then the lymphedema kicked in. JMO but if it does not come right away like Buddy's.....then it must be some set of factors that line up and until then you all may be ok. I would definitely though wear a sleeve when flying....just from the different pressures. Hope you all had a wonderful Sunday.
Enjoy the game Bj.
Hugs, Jackie
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I am scheduled for my first follow-up mammogram after surgery/chemo/radiation this coming Tuesday - and am getting more and more anxious. Please keep your finger crossed for me.
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LisaMotherOfFour- I understand what you are going through and I do know how sad it is too.. When I was due for surgery my mother in law and sister in law flew from out of town and took the kids back with them for 40days and that was big help... and me and my husband saw the kids through the web cam and it was heart breaking... and our kids was 10 month and 2 years old at that time... they were too young to understand what was going on.. had know idea why grandma was taking them... oh boy, I am glad that was over.. My mother flew from Korea during chemo and stayed with us for two month to helped me and kids... I saw my mom crying and that was totally heart braking and I told her I am ok so don't cry.. It already happened and nothing I can do about it but she can help me get through it... That was tough... and I am very glad it's all over... It will take awhile and it feels like such long journey but there is light the end of the tunnel... Just take one day and one step at a time and you will get through this.. It won't be easy but that's why we are all here for you.. Be positive and be strong for you and for your family.. I will be thinking about you on surgery day and my thoughts and prayers are with you and your family..
Char2010- good to hear from you and I crossed my finger for you..
Susan- I am glad you are feeling better and show us some of the pictures from vacation~~
Laura- Paulie is soooooo cute... and what a beautiful sunset that was...
Kater- Sorry for your loss..
Jackie- I do appreciated your everyday quote and make me realize how important our life is.. Thank you very much~!!
Marina- I hope you are having a great time~!!
BJ- walking on the lake sound very peaceful and I with I can do that too.. of course, with you
Gingersfavorite- I like your new avatar~~ You are just gorgeous in any ways... wow..
Well, not much going on here and dh got email from the last interview he had with OR... it said, they canceled the position after reorganize the division....WTH... if they knew they gonna reorganize the division then why they set up the interview people, I just don't get it..
Tomorrow, I have two appts. one with Onco and the other one with PS... my nipple wasn't looking good last time I went so ps cut the nipple... so, we will see what he says tomorrow... I am not worry and I am thinking that do I really need a nipple or am I ok with no nipple...
OK.. time for put the kids to nightie night~! So, I gotta go and may be I can watch movie with my dh....
have a good evening and sweet dreams~!~!~!0 -
LisaMom of Four,
What day is the surgery so I can think about you that day? I wake up in the middle of the night and say a prayer for people who need it....good for them and it puts me back to sleep! I know it is scary as this is something you have never experienced and of course you are wondering about the path report. I will most certainly have you on my mind during the surgery. I am so glad you have so much family support. How are the kids taking it? My kids were young adults and so it was easier....but none of it is easy! I just had the lumpectomy but I too worried about the path report. It all turned out well and I think it will for you too.
Well, I am leaving my childhood friend and going back to reality tomorrow. We all ate at a Korean restaurant tonight and it was all so good. Elf, do you cook Korean for the family? I LOVE IT!!!!!!!! I had sake for the first time....drank it from a shot glass. I hate saying good-bye...hate it more than anything.
Char, I will be thinking about you on Tuesday. You got it so early that it should all be good.
I wish all well. Joan, London is my favorite place. Are you going on business or pleasure? That flight is long. The hotel I am staying in is full of Brits on some tour and I love chatting with them in the lobby. Fun people!
Susan
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Susan -- my surgery is Tuesday the 9th, late in the day, scheduled for 2:30pm. As far the kids go, it just so happens that they are in a tremendously busy period right now. I am saving all my fear and anguish for my husband, and you lovely ladies, so they seem to be holding up OK -- telling them that everything will be OK in time, we're just in for a tough year, helps me believe it too. The one I am most worried about is my oldest, my thirteen year old girl, who does not like to show any sort of weakness, so she has clammed up. Says she is absolutely fine, but hasn't spoken to any of her friends about it, reluctant to talk to us. I have spoken with her guidance counselor at school to be on the lookout, try to draw her out. She's a good kid, never in trouble, busy with cheer, dance and tumbling right now, just so worried that she is internalizing. My other three children are more likely to openly seek comfort, even my twelve year old boy. So all in all, we are holding up, and I am so grateful I have a mother in law who is a sweetheart, dropped her life for the next week or so, and will be support for my children.
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Oh, elf_song, I can't imagine how hard that was to be separated from your young children. I'm so glad you are past that difficult part and are so positive and cheerful. Thanks for your encouraging message.
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LisaMomOfFour. Is your surgery at Rush? My surgery was on a Tuesday afternoon as well around the same time. A woman in my building just had surgery with the same surgeon at Rush last Tuesday at 2pm. I see this as a good omen.
Lymphedema- OK I had 4 sentinel nodes taken from my right side (10 nodes level I on the left). My oncologist wants me to get my blood pressure taken on my right side. So far the first 2 visits I had it on my leg. Should I just refuse? To be honest I'm not comfortable with this. Granted I could also put on my sleeve and gauntlet I have for flying on right after. Anyone else have this happen to them?
Hope everyone gets to enjoy the next few days. Looks like some really nice weather.
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My surgery is at Good Sam in Downers Grove. We're suburbanites now. Last time I was there overnight was when I had a C section for my twins girls. What I remember is how remarkably attentive, kind (and plentiful) the nursing staff was, so I was very comfortable having my surgery at that facility.
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Lisa....Do not hesitate to do something nice for yourself today. You deserve it and it will make you feel better. It sounds like you are in good hands.
It's shopping day and Mary Jane and I are headed to Peoria. I always look forward to this day and am so glad that we've made a firm commitment to meet once a month so we always stay in touch.
More later. Everyone have a good day!
Rita
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Affirmation: It is my choice to care deeply about others.
- jlhI CHOOSE with Open Mind and Open Heart.
I renounce all assumptions and expectations.
I thoughtfully consider all possibilities.
I CHOOSE with courage, awareness, consciousness, and compassion toward all.
- jlh0
