Choices
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Good morning all!
We have mild wind and light drizzle last night through today. I am doing okay, Dr gave me a new med for Reglan to help with nausea. So between alternating between Compazine and Reglan for the past few days and seems to be helping. I am trying hard not to eat pasta although that sounds good, but greasy. I have no gallbladder so greasy stuff is off the list. Sadiej what flavor of Gatorade are you drinking? It never sounds good to me. I am looking forward to this week of feeling better as that is the way it seems to go. This morning I have a virtual orientation to a local cancer program here in the San Gabriel Valley. Looking to inquire about the community resources and see what they have to offer. Will update you guys later.
So glad to hear about Karen!!! Woo-hoo for her! Cancer just isn't fair! I think about all of the young people, and kids who struggle, and it makes me really sad.
On another note, I just ordered some ginger chews and will try some ginger tea and see what the outcome is. I have used the ginger chews for years for mild heartburn and bits of stress-related nausea. Keep you posted as well.
I will get you all an update a bit later, AND glad to see everyone on the board! Take care my friends!
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Hi Marla! Glad to see you're still alive LOL! The vegetable mai fun is made with angel hair pasta and contains no grease. Just vegetables and like I said especially request for a couple scrambled eggs thrown in to get the protein. I drink lime cucumber Gatorade cuz I hate sweet drinks. There may be others out there that you would like better. Can't wait to hear what's being offered you through the community cancer resource. It's so important for us to be able to find people that are willing to reach out and help all of us and it sounds like you found a good source. Let me know what happens. Hugs
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One of the worst things is that all states do not have the law for legal euthanasia. ( right to die) termed different ways. It is bad enough that you are struggling and want to die. But then you have to spend money to move ( if you dont already live in one of these states) and get it done legally. I think based on if cancer has spread to lymph/organs then I would choose it. I really dont want to suffer further but it is what it is................sadly :-( anyway here is some reading https://euthanasia.procon.org/states-with-legal-physician-assisted-suicide/
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Welcome elicitjeans! I was curious as to what you were diagnosed with. Mine was an invasive lobular carcinoma, triple negative that has metastasized to my lymph nodes, the lymph nodes above my collarbone and my brain. I see you are considering a lumpectomy and radiation. Are you taking chemo now?
As you can see on this board (Choices) there are a lot of supports that are available. I would highly recommend that you get in contact with a palliative care doctor . That was the first one I contacted on my list anyways. He has helped me a lot with my pain. You will also see hospice can get involved as well as local groups such as "Area Agency on Aging" and other local community resources. I really hope that you are not doing this alone but I also want to let you know that we are here to support and encourage each other. Also check with your hospital that you're going to. They have a lot of programs to help you out. For example, at the Cleveland Clinic where I go to they have helped us out both financially and have gotten us the hotel room to stay if I happen to have early appointments. (I live 3 hours away).
Like you, cancer runs deep in my family. Of the six immediate members of my family only two are still left alive. One died from diabetes and the rest all died from one form or another of cancer. I do not have any gene mutations by the way.
Concerning your comment above, there are choices. That's the whole point to this board is to allow people to make their own choices and choose their own paths. However the choices should never be made in desperation. Claoh, for example, has chosen not to get treatment, but she spent a lot of time thinking about it before she chose that path. Whatever path you choose you should feel a peace about it. We have our struggles and our thoughts and our feelings and are always given support and encouragement on this board.
Again, welcome elicitjeans. If you just need to "talk", we are here for you.
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Good morning all, and welcome elicitjeans. To be honest, legal euthanasia has crossed my mind, and I did do a little research of the states that allow it. Never got further to see if you had to reside there, and have never brought it up with family. Don't think at this point they would encourage that route. I looked it up because, none of us want to linger while suffering. That is why I believe strongly in palliative care. My hope is that at the end point I will be medically induced to help with the pain, and really love the support I'm receiving from the Hospice group.
I've been told a couple of times that if my cancer doesn't progress sufficiently, I would be released from hospice and that kind of concerned me. But in reality, that would mean my cancer is not spreading fast and I am in a good place. I would still be under the care of the palliative doctor and be reinstated into hospice at the time of relapse. There are definite parameters that have to be met monthly to remain in hospice.
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Good morning from overcast southern California!
When you guys are typing does it seem like your fingers don't work well and type the wrong keys? or is it just me?
Glad to see a new person, elicitjeans, WELCOME! Hope that you find us informational and amusing!
To give you an update on the Cancer Support Community that is located in Sierra Madre, Ca. A short drive from Pasadena, you know the home of the Rose Parade. They offer virtual, hybrid, and in-person workshops and activities. Everything is free, and funded by donations and grants. Their guiding principles are Support, Education, a Healthy Lifestyle, Social activities, and Resources. I am not sure but they may be able to provide services to you ladies too. They have a very busy calendar every day with classes such as watercolor painting, knitting, yoga, dietary lifestyles, and support groups that meet once a week online for an hour. Someone meets with you online for a few minutes called orientation where they tell you about the organization and then you can decide from there. I hope that you will check it out. Their phone is 626 796-1083.
On another note, I am feeling almost like myself as long as I keep something in my stomach! See you ladies later and keep on keepin on!
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Marla, your cancer support community sounds wonderful. I had a very difficult time finding an in person support group in my area, thus this website started : ) I thank you so much for the support and care you give here. It is wonderful to look during the day to see what you've shared.
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Morning ladies!
I have discovered that the only problem with sleeping 24/7 is that this is the second night I've woken up at 3:30 a.m. LOL.
Marla that was amazing research you did on the community cancer program! I can definitely see you're being talented in this area. Haha, a lot better than mine that says well somewhere out there there's a program blah blah. :-) When I read about it I immediately thought of what you were saying about trying to get rid of your crafts. I think you may have just found a place. :-) And yes typing is not my forte. I usually use talk to text and then clean it up afterwards. Maybe that's why my blogs get so long lol. I have a question for you. Are ginger chews the same as like gingerbread men or something like that? I personally like the taste of gingerbread and was curious as to what the difference was between those and your chews.
Claoh you have my curiosity up again. So you're telling me that even though the triple negative of itself does not have a good prognosis they can decide to remove you from the program? I would have thought it would have been dependent on what they know this was. I'm also curious as to what hospice would require month to month to continue in their program. Hospice is all new to me as the only time I ever dealt with it was when one of my siblings and my mother was near death. You are right, they were wonderful but I was surprised to see that there were certain program requirements after you have been accepted into the program.
I was actually glad to see that we breached the subject on physician assisted suicide. As one of the many subjects for the terminally ill it makes sense that we would get that on the board and discuss our own feelings about it. I know I had talked to my palliative care doctor about this. Not specifically the suicide but the fact that I wanted to make sure that he was going to take care of me if things went South. I'm not afraid of death, having grown up in the middle of the cemetery took that away from me. But it was watching my sister and my mother in pain and realizing I do not want to be put in that kind of position. Maybe this topic seems fatalistic to some but it is a good topic to talk about just the same. After all this is a "choices" board and while some may feel a little bit squeamish about the thought of or even discussing this topic it should be noted that this topic is just as important as pet scans, MRIS or mastectomies etc.
So I got my ice cap in the mail. I immediately tried it on and was surprised at how well it worked on this continuous nagging headache that I have. I still think the headache is stress but the cap works regardless of the reason. Thank you so much for telling me about this! I get so tired of all the meds I have to take and this was a nice break from that.
So I have 7 days before my next chemo go around next week. Thursday I am planning to go visit one of my relatives. What a nice break from all the craziness of the treatments! My husband laughs at me because I tell him how excited I am for this trip while I sound like Eeyore. (No really, I am excited!). I will still need my naps but I think that if I sleep in the car going down and coming back I should be fine. I will just have to remember to hydrate, hydrate, hydrate.
That's it for me right now ladies. Y'all have a blessed day! Hugs!
What I am reading right now - Managing side effects:
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On release from hospice. The first time they said it, my husband said, "No, they would not do that because your terminal". The second time a hospice worker mentioned it I asked for more clarification. Because the services are paid for by Medicare there are parameters that have to be met to show your health is decreasing, like increasing pain and/or less mobility needing more care. Even weight loss can be a parameter as it shows the cancer is affecting you. But if that should happen, I would still be under the palliative doctors care until I was later reassessed that hospice is needed. Perhaps that is why I was surprised when my palliative doctor recommended me to hospice when they did. I wasn't thinking I was at that level yet. It's a two sided issue. I love the hospice program and the care they give, but also being off might mean I have more time on this earth. According to my case worker, It is not uncommon to go on and off, but I am in the system now.
Yes, I do feel I would be ready for physical assisted suicide if the pain was too severe without relief for a good amount of time. Don't feel anywhere near that at this time. Even spiritually, I don't think it is an issue.
So glad to read about your trip to visit a relative Pat. How long will the car ride be?
Also thanks for the article. Have bookmarked it as it is very extensive and a good resource for many issues.
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Good morning, Nice to see you here and yes I am getting a/c and cytoxin. Have you tried an ice cap for migraine headaches? I got mine from Amazon and it works pretty well. If you don't have it which is fine, an ice pack to the neck and another one across your forehead or top of your head. Ice works wonders. lay down in a dark quiet room and rest. Hope that this helps. I Had my second a/c treatment yesterday and by the afternoon, a headache was coming on. I was also told that Zofran, usually given pre-infusion for nausea has side effects of headaches and diarrhea. You might ask about that. I take oral Compazine which works much better! Give it a try and let me know how it works!
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Sadiej.
From your question,
"Are ginger chews the same as gingerbread men or something like that? I personally like the taste of gingerbread and was curious as to what the difference was between those and your chews."
the ginger chews I get from Amazon and the ones that I like are called "Prince of Peace, original ginger chews" They help my nausea a bit. Without the bread part from ginger cookies or bread. They are spicy but soothing. I have not tried the ginger tea yet. Will see about that later.
I will be in the patient support group today at 11:30 am and let you know how that goes.
Take care everyone!
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Update:
Hello Sadiej,
Thank you for reaching out to us. We have noticed that some comments seem to be duplicates. We will look into it further and see if this is something we can fix. In the meantime, we will keep checking and removing any duplicate posts.
Thanks again for being a part of the CSN!
All the best,
Nydia
CSN Support Team
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Morning ladies!
So yesterday my husband and I traveled 2 hours to meet one of my relatives. She had a wonderful book (2023 version) of her lineage. Even my dad was in it. She had letters and pictures and talked to me about adding my siblings and myself to the book. It felt good to belong to the book. Understand that even though we're both direct lines for about five plus generations, my line broke into a different last name. Seems that my GGG wanted to marry this girl but she didn't like his last name so he changed it. I have a lot of comments in my head about that but I am going to leave them in my head LOL.
We also had a discussion about mastectomies which was really cool. She had gotten a mastectomy on one side and when she had a recurrence she took the other one off. She recommended just taking them both off at the same time and I agree with her. She also had her Pec muscles removed but it seemed to have no issue for her, that she could raise her arm etc. "Wait" I said, "so they took off the whole pec muscle and not just the lining?" She concurred. That really makes me feel better about the possibility of having to remove my PEC muscles. She also explained about the wrap they put around your chest and the drains which she said she had to have for about 2 days. She has a little bit of lymphedema also but doesn't wear a sleeve like I do. She has a handheld machine she uses to massage her arm to get the lymph out. So basically everything that she had done is what I need to have done. She agreed to be there so I can talk to her as I go through this. I'm really feeling blessed right now to have someone I can talk to that has already been there. She is 81 years old and just full of life!
So how are you gals doing? Claoh I still see the duplicate on page 9. If it doesn't go away I'll reply to their message and tell them please take it out. After all we can't have a story with all these duplications LOL. And Marla how are you?? You bring a spot of sunshine to this board and I love your positive attitude. I can't thank you enough for that ice cap. Seems my headaches are getting worse and I am definitely glad I got it early. They have been continuous for quite some time now, but the intensity is slowly getting greater. Have you found any headache relief for you? I'm following you on this one! :-)
Claoh how's your symptoms? Are you maintaining or do they seem to come up in places they didn't before? I'm assuming the aspirin is still your go-to. Please catch me up on how you're doing.
That's it for me right now ladies. Just watching time go by. :-) Y'all have a blessed day!
Pat
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Pat, how wonderful to connect with your relative and get such positive reinforcement and support!!! When you state she agreed to be there, is that at your appointment, during/after the surgery, on call for questions and support?
I am still using over the counter pain killers but must say need them more frequently and they don't diminish the pain as much as they used to. May have to go to a prescription drug but hope to avoid that as long as possible. Has not slowed me down with any of my activities : )
Did order the diabetic sock to rig into a sleeve for left arm. Today was the first day I think I may notice any slight enlargement.
Everything is so erratic as far as pain & comfort. Like all of us, we do what we need to do to get the comfort we desire
Did get my "sleep bras" from Amazon. Do like them, but think I will order a smaller size. I went up a size because so often things like this run small. They definitely are not a sports bra with extra support, but just enough for night time.
I'm really watching the next approaching hurricane - Lee. We are scheduled to go on our trip a week from Friday and these storms tend to wreck havoc on air travel. Haven't talked to my husband, but wonder if we should take two extra days and drive. I really think we'll just take our chances on the weather right now, but it has crossed my mind and I check the storm progress as much as I check our site, which is every time I get on the computer : )
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Good morning all!
Sadiej I am so very happy for you to have gotten together with you family member and that YOU will be in her book!
Nothing like having lived and leaving no trace of you. That bugs me. Claoh I purchased several bras from Truekind
that have soft padding in them, and come with an extension so even if you order your size, the extension gives you 2 more inches. They are at Truekind.com or Shapemint. Here is the persons accurate review, I agree with.
"Updated review... it's growing on me. (well not literally!)
ORIGINAL REVIEW: I was disappointed in this bra. I have been looking for a supportive bra with sewn in pads and while this one appears to be well-made, I won't be wearing it. Perhaps I ordered a size too large but the straps keep falling off my shoulders. I liked the option of having a piece to extend the size but the hooks are too darn scratchy, with or without the extension. The search continues....
UPDATE: The seller, Shapermint, did reach out and offer a refund after I posted my original reciew, but I have already laundered the product so I don't think I will return it. However I do want to acknowledge good customer service. After inspecting the bra more closely I noticed the tag says it's Truekind, and other customers were complaining it isn't Shapermint, but if you visit the Shapermint website, Truekind is one of their collections. After reading some of the other reviews, I thought perhaps I had ordered too large of a size (3XL). Of course, in the midst of all this I came across a Facebook ad for a similar bra of a different brand, Underoutfit. I ordered a 2XL directly from the Underoutfit website (not Amazon.) I tried it on and it seemed more comfortable and the shoulder straps stayed up. I did a side-by-side comparison of both bras, and they seem to be virtually the same in make and style. The 2XL Underoutfit actually appears to be larger in circumference than the 3XL Truekind. The 2XL Underoutfit has 4 pairs of hooks as can be seen in the photo. The 3XL Truekind bra, however, has longer straps. I think the washing softened the Truekind, plus I stopped using the extension as that seems to be the scratchy part. Also I have been wearing sports bras with no hooks for so long, I think I just needed to get used to them again. The straps are still a bit longer, but they don't seem to fall off as much when I don't use the extension. So I guess I have grown to like the bra because my main criteria was to find a decent bra without an underwire or removable pads. (I HATE THOSE STUPID PADS!!!) The Truekind and Underoutfit are the only 2 bras I have found so far that fit my criteria! I do wish I could find a good bra made somewhere other than China, but I am sure that would be even more over-priced!!"
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