MIDDLE-AGED WOMEN 40-60ish
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Barb- my uncle is still alive but in rough shape. She killed her self with morphine. I am assuming it was his as she was healthy.
Does anyone know how long the chemo sensitivity test take to come back. We haven't told the old oncologist we are through with him. Not sure how to word it without coming off like a bitch.
My daughter and little granddaughter are still battling this whole Lyme disease thing. Little Lydia falls asleep by her cereal bowl and does at school too. She went to a specialist yesterday and he said it could be cat scratch fever which can be caused by a tick also. Did a ton of tests. He said he would send them to Connecticut which made me happy because it's less than 4 hours from here. I feel bad for both of them.
Hope everyone is having a great day
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Greetings to all, its been awhile since I have been on BC.org, so I was catching up on the gang here, this afternoon. Dianarose, what a major project you have had to mount, getting the right team together to really treat your issues. I so hope a strong and caring doc or nurse can advocate for you now. How the other docs could be so detatched just makes me so MAD! Wow.
Hospice teams might be helpful, if you have the communityy based kind in your area. I was encouraged to at least talk with them before I was ready to enter their program. (That is still a ways off, fortunately) .Someone in the healthcare system near you needs to become passionate about your well being! They can work wonders, and it would save you a lot of energy. Waldo County has a great onc. team and an advocate for their cancer patients. PenBay in Rockland has some of the same staff, and is doing good work with patients. There have to be some good providers at the Breast Care center in SoPo. I believe they just established two newish dept. heads, both are female oncologists. Make an appointment to tell them your history, maybe. Its so important for the team to know you and care about you! Grrrrrrr!!!!
I just finished two years on Xeloda at half dose, and am starting aromasin. So far, so good. Next week th want to add femara. I am cautiously optimistic.
Big hugs to all, you are such a great bunch!! xo Mame
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Hospice here is when you are at the end of life. Not there yet. Just the tought of it 😢 . My new oncologist is on top of it just wish I had found her sooner. On my way to hospital now for both surgeries. Ate tomato soup last night. Sent four hours in pain and puking. That's on the do not eat list no
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Diana...Praying all goes well......
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Hi, MameMe, good to hear from you. Thanks for passing on your info. about some providers up in Maine.
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I am late to the party. Dianarose, hope all went well today. So sorry about your aunt.
MameMe-nice to see you again.
Since my brain is swiss cheese I don't remember if I posted here or not about my brother being killed in a boating accident at the end of Sept. It was such a shock and still is. Going thru pictures and came across this beaut. (I know some of you are seeing this on FB too-haven't completely lost it!
late '57 .
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Oh, Eph, that is so sad! I love your picture.
As far as hospice goes, I will take any help I can get. They are a great resource for ways to stay comfortable at any stage of a chronic disease. I know they have been campaigning to be seen as palliative care experts, and are trying to broaden their contact with cancer patients at any stage. We have a residential hospice facility now at PenBay, which is for people in the last 6 months of life. Sussman House. separate from them is the hospice program that has a team that can help at home. Before being eligible for the home help, hospice can still share what they know about complicated and painful ca. related conditions.
Dianarose, I am so glad you have a good onc. now. Best, best wishes for all the upcoming treatment. And that cake was a masterpiece!!
Hugs to you all from foggy midcoast Maine. 🌫🌫🌫🍂🍁
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Most of the hospice stays I've seen here on BCO are less than a week. It's almost like once you accept you're at the end your body can let go.
Hugs again Eph. I can't imagine....
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Eph, so sorry for the sad loss of your brother. I'm sure you were quite shaken. My condolences. (Cute Pic!)
Barbe, I hate to say this but many people need "Hospice Awareness" since they do wait until they are in steep decline, when they could have gotten it sooner. I know that to some it might feel like throwing in the towel, but it is a resource to not only help the patient but it is a help to the family as well. A person is eligible for hospice when they get to "no more treatments left" stage. Insurance usually covers six mos. of hospice, but there are even extensions to that, if needed.
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Thanks, elimar. People need to know the difference between palliative and hospice. You can get palliative at any time. Went to a seminar recently. Never too early to plan when you're St IV.
Lita
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In doing the math, my Mom was an old 22 in the picture. Same exact age as my single, footloose, world traveling daughter-so glad she didn't fall into early marriage.
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I really should look into Hospice here. I have my oncs on Wednesday and will find out results of my recent brain and lung CT.
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Eph-so sorry about your brother. I am very close to my 3 brothers so I can't imagine 😥.
Got to hospital at 8:30 as told and surgery was scheduled for ten. At 9:45 was told she was running an hour behind. When they did get me in they couldn't get the IV in. Took three tries 😆. Port is in now and two cuts to the belly. The gas they put in my belly caused severe neck and shoulder pain. Still hurts this morning. Surgeon told hubby she found two big spots of lobular and took a lot of tissue from there. They are doing the chemo sensitivity test on it. Does anyone know how long it takes to come back? When we asked her about the latest scan her reply was her consentration was on the belly. Made us feel like she was leaving something out. I am sure the oncologist will tell me if it showed up somewhere else. 😆. She couldn't find the right tubing or person to change out the naphostomy.
We had the worst thunder storm here last night in years. Very weird this time of year. Hope everyone has a great weekend
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Did they take the whole lobular area out while they were in there??
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Barb-she took out the big areas but there is a lot of areas that look like someone sprinkled sugar that the chemo is going to have to get. I don't have as much pain so she had to have taken quite a bit. Love this doc❤️. Old oncologist didn't want them to take any. He wanted to pull a chemo out of his ass and see if it helped. With the tissue samples they can test and know they are giving me a chemo that will kill the cancer
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I am so glad you have this onc, and that she was willing to get down to business and reduce the obstructive stuff right away. Chemo can definitely calm down the remaining bits. Finding out the best chemo for the job is worth waiting for, I think. Meanwhile, here's to building yourself back up a bit and winning big at the casino again...🎺🎺🎺!
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Mame- hubby and I were just talking about going to casino on Tuesday. We like going in the day when's it's less crowded.
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Wow!! Sounds like this new onc is really working for you!!! So glad you can feel the difference already. It can only get better from here. Still annoyed for you that they didn't have the right size of tube though.
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Barbe- the dam valve leaks too. Nothing like being in the store and you look down and your leg is soaked
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Dianarose, Bummer about the naph. tube. A bit of poor planning to go into the surgery without all the needed supplies, eh? All in all, it sounds like you are at least on the right track now. Thank goodness that they won't just "guinea pig" you through a chemo or two, but are actually testing it for effectiveness first. Nothing worse than trying out a chemo, getting the accompanying SEs, only to be told it's not doing much for you. My interpretation of this new doc "concentrating on the belly" is that nothing else you may have going on would be as major as this, so first get over this hurdle and deal with the rest later as needed. She has to get you out of that pain and eating solid foods. Even if you get the chemo sensitivity results back quick, you may have to wait a short time to heal from the surgery anyway SO enjoy that window where food will still taste good and chow down ('cause you know chemo is likely to change that.) I seriously want to know when you can go on real food again, so let me know when AND what you choose for that first real meal.
Lita57, Right, they are similar but different because Hospice can be palliative, but palliative care does not have to be hospice care. When my mom was in the ICU, extremely sick and immobilized by strong sedation, nobody was talking "hospice" but they sent a palliative case worker to talk to me. I am not even sure what she was thinking to do for my mom, who was oblivious to just about everything so how much palliation did she even need? Both hospice and palliative care may work with family members but hospice is for terminal illnesses when active treatment ceases, and palliative is more for chronic pain/chronic illness and you can still be getting active treatments. Both aim to improve a patient's quality of life.
Barbe, you may have different terminology up in Canada. While you can certainly find out more about hospice at any time even if you are a long way off from needing it, your health provider may offer services or counseling from a palliative care worker for you right now if you are having pain or issues that lower your quality of life.
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El- when I was put on this diet I was starving 24/7 and now I force myself to eat something. I hope I get my appetite back soon. Felt sore all over today plus so bored.
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El...you're right about the differences between palliative and hospice care.
Lita
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pain is so much better today now that the gas they put in my belly worked its way out
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Diana..glad you are finally feeling better...
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SO glad to hear your pain is easing!!! I've had the good drugs for years now. All the way up to Fentanyl patches.
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hi elimar,
I am post surgery and I made it. I have t had much pain and wondering if I will need 3 or 6 weeks radiation.
My surgery doc said maybe it will be 3.5 weeks. I had clear margins, nodes clear and waiting on my onotype
I am a.so hoping the anti estrogen drugs will be ok for me. When you say 6 months I hope rads are not that long.
So happy you are 7 yrs out. What pills did you take I am prog neg so I am not sure how that affects what drugs you get
Take care and very good to hear from a survivor
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positive 2- radiation is about six weeks. Glad that you got clean margins and nodes 👍.
Blood work on Thursday and chemo next week. Hopefully I will be able to get rid of this naphostomy tube out someday. It's a pain in the ass
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Can I just go back to being a little kid again? Lita gets her picture taken with Thomas the Tank Engine at Roaring Camp Narrow Gauge Railroad, Felton, CA. CHECK this off the bucket list.
(Cross posted this on another thread, too.)
And of course, we can't forget Percy! (BTW, their little mouths MOVE, and the engines talked, too.)
And I had to bring my little Giants mascot, Lou Seal and his pal, Mini Olaf. I would have been in HEAVEN if they had had Thomas and his friends around when I was a little kid. DD and DH went with me, too, and we had a fun afternoon. The train ride thru the old Redwood trees was relaxing.
Lita
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Its fun to see pics of Fun! Also great to hear of progress in healing and appetites! Hope this trend affects Pos2 also, since recent surgery. Cancer is tough. We are tough, back. Sometimes. 🐘🐘🐘🐘🐘🐘 Time to put the circle of elephant mothers around Diana and Pos2, I bet its nice in the middle of all that protective energy...just mind you don't get squished
Hugs to all, Mame
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