Can we have a forum for "older" people with bc?
Comments
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Velvet, I gave myself the Neupogin shots but they were provided free to me through the V.A. The point I'm making is that they told me to take a fast acting Tylenol before hand so I would not get a headache. Just saying this as I know others who stopped any pain they might have had with the Nuelasta by taking Claritin beforehand.
Just saying....it was long enough ago, that I'm not sure just how much, when etc. other than my Oncology nurses told me to use the Tylenol 15 or 20 mins. before I injected myself and that would take care of any pain that might arise from it. Worked like a charm each time.
Comes down to what you want to do, but you can skip the pain from these shots.....don't know why, but especially with the Nuelasta it seemed at the time it wasn't well known that the Claritin would fix it ( yes, what did Claritin ever have to do with pain much ) but it was used widely by all those receiving chemo back in 2008 when I was. Maybe some people still don't know.
Hope I didn't just make things worse for choices. If it is all right with the people giving you your Neupogin I would ask to be allowed to take a fast acting Tylenol before the shot......my first week of shots was rotten because I did get a headache every time.
Blessings,
Jsckie
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Hi ladies,
Trying to do a little catching up. We went on a Celebrity cruise to Key WEst and Cozumel for Christmas. I haven't got family near and DH daughter is busy, busy, so we opted to go on the cruise. Good we managed to get home for New Years eve, had our church group here after dinner out. Also managed to get home before the Polar Vortex made it to NY state. I remember growing up in Chicago , COLD winters and snow, never had school cancelled, walked in the ruts on the streets, just figured it was winter! Didn't have the T.V. reinforcing how you are freezing! The deer are enjoying the grass in our yard since it rained and melted a lot of snow!
Took some decorations down, may get the tree down tomorrow. Since we were gone doesn't seem like they were up that long.
Discussion on kids, hard to zip our lips sometimes. Parents are different than we were, afraid their kids won't be their friend, or the self image issue.We hate it when our son-in-law calls his son "buddy". He's his Dad not his buddy. Must say even Celebrity , who doesn't usually have a lot of kids , did for Christmas, but they were generally well behaved. On Disney cruises, we were lucky to see the grands , they were so busy in programs, even the older ones.
Hope everyone had a good Christmas. I'll try and be better about dropping in. Jean
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Hi everyone,
We got to FL on Sunday. Met with DCF worker on Monday, we were waiting in the lobby and the worker came out in the lobby and started running her mouth, she was like a dog in heat. I was so annoyed. Then DH asked to speak to her super, so super came out and took us to a conference room. We talked, when we were ready to leave I stood up shook my finger at her and told her how un
professional she was, DH had to finally tell me to stop.
There is a court hearing on Monday at 9:00 so we will go to it, then either go to see our older daughter in Fort Pierce, or we will just head home. It was 16 degrees here yesterday morning. Wow. We are really stressed.
We got to meet with DGD yesterday and have ice cream, saw her for a few minutes, will see her on Fri. Her foster mother is a very nice person, we were very impressed.
Hope all are well
later
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Jackie- Carol-Asha- Sally, and all you lovely ladies that responded to my dilemma. I was surprised to read so much response. Thank you all. I did meet w/the MO today. My son surprised me by meeting me there. I had said I prefered he didn't come this time so was surprised to see him there. Anyway I had to tell him- I could not lie but only had chance for a short conversation before the doc came in. ( This is not my original MO as I have moved across country last year so there is NO team for me per-se this time. I WAS very depressed before the holidays despite increasing my meds and the Tamoxifen made me worse, belligerent, loss of appetite, vag discharge, hair thinning to name a few. I am just a very allergic person. In the last few weeks I was much happier since coming to this decision. Cut back the antidepressant and much less sleepy,generally doing much better despite the continued neuropathy ( 7 years now as result of the Taxol chemo at least that was their assumption but MS was also a possibility) I have to wear legs ankle splints.
My son is obviously thinks I have given up and not at all happy w/me. Telling me that did I want my grandkids to know that I gave up. hurtful- yes but his honest feelings I suppose. Now I feel like the MO has kinda given up on me too. He said I should return in 6 months. I think a scan in 3 months would have been indicated but at this point its water under the bridge. I really AM ok w/it. I am a religious person and God has given me the strength he is always there for me. I will keep sewing as long as my body permits. Maybe take a trip if body and funds permit. I am on no pain pills now as I had been most of last year. Radiation did help with that. So have a clear head going in to this.
My MO said he would not try any other drug unless I stay on the hormone blocker. I do plan to keep up a good diet ( as hormone free as possible, organic, no dairy, low fat, low sugar) I am 12 libs lower than this time last year and feel better for it. Being a nurse I am aware that every single med we take has its own set of side effects. The more drugs the more side effects. I was able to lower my BP meds because of my weight loss too.
I saw my PCP this week too and she may not agree but is supportive. I finally agreed to a flu shot.
Rabbit- just an FYI, I also did the Neulasta thing at home back in 2006 throughout the chemo months. It caused me so much bone pain I was taking 2 Vicodins every 4 hours and it did not relieve my leg bone pains. It did help me sleep some but that was the worst pain in my life. I never became addicted and the pain went away after the end of Neulasta. No one suggested the Claritin back then. My MO then did try the Neupogen daily and I ended up in the hospital with high fever and low white counts. So I was forced to go back to the Neulasta.
So sorry for this long winded reply. As we know that it is a personal choice for all of us. I do not think though that scolding a loved one or friend for their choices is the right thing to do. We feel guilty enough - hopefully God forgives us for our choices in life. 6 months or 6 years I am content with that.
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mommarch....so glad to get an update. You've been on all our minds and in all our thoughts. I hope the hearing goes well for you on Monday. It is a real shame that people in their positions are unprofessional! They, of all people, should be able to understand the situation and how to handle it in a professional manner. I am so sorry that you are having to deal with all this. Hang in there!
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Bonnets, good to hear from you.
Mommarch, glad you got to see your GD and that she seems to be in a good home.
Well, I got most of the packing done today. This time tomorrow night we'll be on an airplane headed to Los Angeles. I'd better enjoy sleeping in my bed tonight!
We should have internet at some of the hotels. I'll try to check in whenever I can and keep up with what's going on with my "older" bc'er friends.
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Grammy, have you talked to some of the wise souls on the State IV threads? I read there sometimes and am always in awe of these women. Some take advantage of every trial they can get into and others choose a different path. There is no right way or wrong way to deal with your situation. I would not tell your son anything now, especially if you are not prepared to deal with his emotions on top of yours. You'll know when the time is right. Do you have someone you can talk to?
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Well, the last two days have been eventful. I've been in the hospital and just got home this evening. It looked like I was having another stroke, but it turned out I'm not. However, what I do have is something I've never heard of. Apparently it is well known among internal medicine docs and neurologists that certain infections (usually urinary tract infections, but less often pneumonia and bacterial blood infections) in people who have had prior strokes can cause an "unmasking" of stroke symptoms without there actually being a stroke. Who knew? Patients present in the ER with symptoms that indicate stroke (for me, extreme vertigo and vertical nystagmus: eyes moving up and down uncontrollably) Preliminary tests and a CT don't show what's happening. An MRI shows no evidence of new stroke. The docs then do a million tests to see what is causing it.
Sure enough, I have a urinary tract infection. I haven't even had a symptom of it yet! So it's good news. I'm on Cipro for a couple of days and can expect these symptoms to resolve by next week. I asked how I would know for the future when to come to the ER and was told I have to go every time because they can't tell one way or the other. I asked why my bad infection after the BMX didn't trigger this and was told it's always a UTI, pneumonia, or bacterial blood infection. They have no idea why. The brain is such a mystery, even today.
The internists and neurology docs decided I shouldn't worry about going on the cruise in ten days. There is always a doctor on board and if worse comes to worse, I'd just be transferred back to the states. The ship doctors have TPA, the clot-busting drug that will dissolve an infarct as long as it's within 4 hours, so they said, "Go! Have fun and relax. You've been through too much in 4 months". My neurologist even told me he prescribed adult beverages and wants pictures to prove I followed his orders.
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Grammy: I agree, it's your choice. I would & will make a similar choice when I feel the time is right and I think my son will be OK with it because we both watched my Mother live essentially as a vegetable for 12 years. She would have HATED it if she'd known. Being so practical, you may want to check this forum topic - How to talk about Death & Dying. I've learned lots of good things. And Sandra is right - there's lots of good support on the other Stage 4 threads.
http://community.breastcancer.org/forum/8/topic/77...
Rabbit: Yes, there was some pain w/the Neulasta - but taking the Claretin it didn't last more than 24 hours & got less each time. For the price difference & the distance, you may went to reconsider & give it a try.
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Morning gals! Yes Sandra, I just got over that Cipro for a UTI! I didn't even know I had one, except for the urine test with my physical a couple weeks ago! Interesting to know what they told you about that.... But did you notice a "different" aroma.... ( I know, gross!) when you would pee? I had noticed that, for about a month, and I'm thinking maybe it was that UTI? Because after the Cipro, it was gone! So I might be more aware of that "symptom" the next time....
Grammy.... Yes, it just makes it harder when family is included in what you really want. Of course they want to keep you around forever and an eternity.... until even THEY are gone.... I told you about ME taking care of our cremation arrangements, this coming Monday... I just want to do it, and get it off of my mind.
My oldest Daughter went to see her beloved old friend, who used to be her Boss... Now she is in Hospice Care... And after crying to me for a minute, she told me she has "just given up.... She doesn't WANT to go on"... And then she said, "But it's her choice!".... It takes awhile for that to sink in, but when people realize this, it makes it easier for them, to accept.
She has been visiting her at her home every few weeks.... but found out her Son put her in Hospice... and it took DD by surprise... She knew she was becoming more frail, etc, but she thought that SON of hers, just wanted to get her off his hands..... Anyway she is refusing even water... she is just....done.
I watched my Mom go through this... her kidneys quit working... so we could NOT give her any water! Not even ice... but she wouldn't have known what we were doing anyway. She was just un-responsive, from everything wrong.
And we DIDN'T want them to put her on dialysis... she was just leaving us.... And my Brother and I accepted this finally. Then I prayed for God to just take her away from all this suffering...
So that last night, we were all with her, singing her favorite songs, (You are my Sunshine) and talking to her, and remembering fun things together. She just laid there, but it helped us. And my prayers were answered, and she was finally at peace.
So Grammy, you probably have MANY years ahead of you! No-one knows when our time is up.... It's coming for all of us.... Heck, with these winters around here, I'm going to kick the bucket by falling on the ice...... again! But I'm going to live every day, looking forward to the next, for the NEXT 50 years.
You've talked about it, and that's all you can do.... Now go on, start living your life.... ! There is so much joy in every day we are given! We just have to make some of it happen ourselves.....
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Grammy I may be wrong, occasionally I am, but there was something in u'r post that sounded like u did not want to give up yet, maybe u don't--I'm sure u'r tired of all of this chit everyday--it's no fun to live this way, but u don't know what the next day will bring, none of us do so maybe, just maybe something will come u'r way and u will have a different outlook, but whatever u decide there is no judgement here. Just the feeling of this damn disease.
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Sandra what a nitemare for u, but one that really wasn't so horrible---I remember when we'd get symtems of UTI's now I get nothing, but I always have them--I just figure I have them I get checked Sat. for that and some other things.
Mommarch I'm glad u checked in and I would never think they would act like that, families are all going thru hell and they act as if Oh Well. So sad. I'm glad u did see and also see how the foster parents are, that must have been some relief. I'm sure this is horrible for u and I wish I had advice to help.
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u'r plane is waiting for u guys.
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mommarch: Stick to your guns and make sure the authorities know you are there! That brings back a bad memory of my youngest DS who was quite a challenge. We once had to meet with a social services worker at our home. When she came in and saw the home she exclaimed "your son will be fine...he comes from such a lovely home" and she proceeded not to take his case seriously from that moment on. When he was ultimately in trouble again, I gave her a piece of my mind! Sending you prayers and positive energy to get through this ordeal as it won't be easy.
Grammy: refusing further treatment is not a death sentence and don't let your kids make you feel you have given up....it simply means that you have decided to have some "quality of life". Nothing in the world wrong with that. I would do the same.
Sandra: glad your UTI was diagnosed and you will be well in time for your trip. Those meds clear it up pretty fast, but be sure and take all of them so it doesn't linger.
Carole: Enjoy your trip!!
Went to dermatologist yesterday and everything checked out ok. I've never had a skin cancer and he said it's likely that I won't now at my age. He removed a small cyst from the side of my face and took one small stitch. I go back in a week to have it removed. Hopefully it won't scar, but even so, I can cover it with my hair. DD saw it and was sure it was a melanoma.... drove me crazy until I had it checked.
We've had rain here all week....sick of it....at least it's not cold or snowing.
Have a great day everyone!
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Make it a habit to tell people thank you. To express your
appreciation,
sincerely and without the expectation of
anything in return. Truly
appreciate those around you,
and you'll soon find many others around you.
Truly
appreciate life, and you'll find that you have more of
it.
Ralph Marston0 -
Hi everyone
mommarch. I'm glad you got to reassure yourself by seeing your granddaughter and happy that she is being cared for by a decent foster mom.
Sandra. Glad it's "only" an UTI and not a stroke:)...my Dad used to get them fairly routinely...long before urinary symptoms presented he'd start acting loony and we'd know to get him checked out. He also received Cipro once in the hospital but he had intestinal side effects of epic proportions...
grammyR. In the midst of all your pain you reached out to advise me...thanks and may God bless you and help your son
camillegal. Love the pix....a hoot!
Minus2. thanks for the comment re: Neulasta and you're right I shouldn't reject something out of hand. I will keep my options open
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Back home from work now so I can sit and say without rushing that I'm glad for you Gramma. I think you were fairly sure what you wanted all along, and we here posed a few thoughts and questions, and you still feel the same. That is all any of us have to know.
We are here mainly for strong support --- many of us would have had any number of difficult times I think had we not found each other. We really aren't here to criticize your choices......no one knows what is right for everyone and if you are happy then nothing else much matters. Hoping that as your children think about this.....they may be able to start to understand. It is hard to lose someone and I think the wall of not wanting to suffer a loss does get high at times. More so the closer a person is to you.
I would likely do some things.....like write a long, loving letter to each. No one we love is ever REALLY gone from our life. The deep meanings are still there, and later, all the joy of special times shared together. I still talk to my mom and dad and others.......and actually still remind them that I would not be who I am had it not been for the loving care and deep, deep commitment they each made to teaching me their version of the Ten commandments, which means that each lesson was geared toward those very things. We still share much together, I just can't physically touch them or pick up the phone and hear their voice.....but I feel love, solid and strong every day in every heart beat of mine.
I hope you soon feel total peace. Take all the quality there might be and enjoy every second.
Blessings,
Jackie
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That is so beautiful Jackie..... xoxoxo
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Jackie, you are an angel, with a gift for telling us what we need to hear in a way that we can take it all in. We are all blessed to be here with you.
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Sandra...OMG! I don't even know what to say. You must have been frightened out of your mind!! So glad it turned out to be something so treatable. And I agree with your doctor that your cruise is EXACTLY what you need. Thank heavens it all happened now. No more drama for you, lady!!!!
Carole...how exciting to be leaving on a great vacation. Have an amazing time!
Mommarch...bottom line your granddaughter is safe and I know that is your biggest worry. That is good news in this whole fiasco. It must do her such good to spend time with you. Some little kids go through so much.
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I told you all the story about the two little girls that my daughter Stephanie had legal custody of. I said that Shyann, the oldest, was back in touch with Stephanie so many years after she was kidnapped by her bio mother. Well, Stephanie told me that she is helping Shyann turn her life around. She registered for college yesterday!
What I didn't tell you was that at the time Shyann was kidnapped, she had leukemia. We didn't think she was still alive until she called Stephanie about ten years later. Now Shyann wants to be a nurse. Isn't that wonderful. The little girl we thought was lost to us is still being guided by her "real" mother and will someday be able to help sick little kids. My heart is full.
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Carol have a wonderful time on your vacation!
Jackie...what you wrote to GrammyR was beautiful!
Sandra what a wonderful daughter you have helping "her" child that was taken from her....
she will be a wonderful nurse
and BTW Sandra:
you must have been scared out of your mind with stroke symptoms again. happy to read that med will take care of your UTI and you can Sail away....sail away ...sail away.....
I am a cruiser too...31 for me....all on Princess, but one on Celebrity. Thought I was done with surgery and now there is one more in my future and was just about ready to book a cruise and remembered that our passports expire in March. So passports first, then I can book. Which ship to Alaska are you on in the fall...are you leaving from Seattle, Vancouver, BC, or SFO?
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We'll be on Princess out of Seattle Aug. 30th. Second time on Princess. We've also taken two on Royal Caribbean and the one coming up will be the 6th on Carnival. Have had a great time with no complaints on all our cruises.
I was hoping to be able to do an land tour in addition to the Alaskan cruise, but since I had to quit work and go on social security last year, we no longer can afford to do that. Plus after the stroke and three breast cancer surgeries, I don't have the stamina for the hiking & kayaking I'd wanted to do on the Kenai Peninsula. We'll settle for a 7 day round trip and be glad we have been able to come up with the money to check off the top one on my bucket list. Shore excursions are so expensive, some over $400 and most at least $150. The ones on land were even more expensive.
In spite of the change of plans I'm happy and delighted to still be here to go to Alaska.
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We took an Alaska cruise and did one of the shore excursions. We found it a bit lame, so skipped the rest and just explored on our own when in port. The only thing I wished I'd brought was some sort of needlework to do while watching the scenery.
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That's wonderful Sandra! What a beautiful story!
I just got back from going to the ENT! You know, I haven't been able to hear hardly anything for over 2 years.... even with my hearing aids! And I've been using ear candles, and getting lots of wax out....BUT the ENT said don't use them anymore, because some of that "wax" has dripped down through the candle and had hardened, and he finally got it all out! I could get some wax out, but some went back in....!!! For 2 years I have been fighting this!
I even had my ears flushed by my PC, but they couldn't get anything out! Neither could Urgent Care yesterday.... But I went to the ENT, and had to pay $100 because my Doctor "Dud", who is my PC would not give me a referral, because SHE said they could do it THERE! (It didn't do ANYgood 4 months ago!) So I paid, damnit, and I was so happy that I could hear! He used some sort of vacuum, but finally had to use that instrument, with the light, and pull those hardened plugs out. I promised I would NOT use the ear candles again..... He said I should even use the Water-Pik I bought, when I think I have a wax buildup! Or even come in like in 6 months for a check-up.
I can hear my car running! And my sink faucet runningt! Right now I took my hearing aids out, until I get used to all this noise....Ha!
I just thank God I can hear again.... !
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What are ear candles?
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Sandra what a beautiful story about u'r DD. And of course u'r trip sounds wonderful.
Jackie u are our spokesperson for sure, no one can say all the beautiful things u say, yet we all feel them--so I'm always going to ditto Jackie's lovely words.
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Grammy R......I suggest Cancerlifeline.org (their catalog is online, And Valley Medical Ctr. in Renton would be closest for you.) .....There is phone support too, if you don't need support, it could also be support for your son....the phone number is 206-297-2500
I do go to 2 different groups in Renton, Wa when I can.
Breast cancer support group and living with cancer group, the facilatators are professional, LSW, PhD...family and support people are welcome!...... and everything is FREE....there are lots of other activities from jewelry making, card making, quilting, gentle yoga, cooking healthy, speakers .....I think there is a stage IV GROUP in Seattle.....but I have met women that are Stage IV in the groups in Renton. I support you in your choice......this is YOUR DECISION!!!!
I chose not to go on tamoxifen.....I want quality of life......I am 66 too and have a son 40 and a daughter 42. My Daughter
LSW,MSW who works with kidney patients with end of life decisions.
If you need a hug, want to meet, go for a tea or coffee.....just let me know......Renton is not that far from me. Just PM me.
H-U-G-S!!!
Di
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Chevy......can you hear me now?.....so good your hearing is back....sparkly clean ears. :-)
Di
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Di! Yes sweet one! I just now put my hearing aids back in.... Not used to all the sounds...Ha! I can always get my hearing aids adjusted, but I'm going to just appreciate all that I can hear.... even if it is "noisy." Ha!
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u'r plane is waiting for u guys.