My Husband, My Life, My Love, My Family, My Cancer
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exactly. Love. Which means not pouncing on newbies trying to help. And runor brought it over here with her suicide coffee hot line. Sad
Good luck to all.
PS edited my other post like I was asked to, like Runor was asked to as well.
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artista~ all im going to say is this. I made a joke to lighten the steam room up! I wasn't happy about my coffee being gone this morning , so on this THIS thread I commented on it to my sisters here. Nothing meant other than a joke. Runor is also used to the humor I have as well and knew that I wouldn't find it anything but trying to match my light hearted comment about coffee being a crisis. Which we all know it would never really be. As a matter of a fact I sit an wonder why someone who isn't even stage four would post about a suicide line anyway, haven't they survived already? But ohhh that's right we're going to die. I forgot. So throw the stage four group aside and post that number for just us ? Because we are soooo fragile and clueless how to fight to survive also. Wow! Also runors comment was about coffee nothing else You brought it around again when it was over with, As you can see from others humorous responses in the form of laughter. Which is how it was meant. Also, I’m sorry but I don’t remember ever saying a word about a newbie.. Dropping subject Good luck to you too!
Shetland~Hi sweetheart, I honestly don't intend for this place to change. I honestly was just shocked and had honestly never been treated Like that before on the boards. My attitude is everyone is equal. Always has been. People Who know me. Know I deeply care ❤️
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Exactly, Micmel, that caring is the core of this thread. I wanted to support the intent of this thread. My plea was not at all directed at any person or any comment in particular, either here or on another thread. Really. I’m watching things unfold and thinking abut the perils of internet communication (no body language, no tone of voice, no chance to clarify in real time etc.) and how our emotions can run high with the subjects we discuss. How there is a a time to speak out, and a time for forbearance. And how to know which it is? I probably should not have posted at all, lest I be misinterpreted.
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Shetland~That is one thing about this thread. I don't police it at all. People get through things as they have to.We all battle. That's why this has always been a safe place to express your feelings. But to suggest to an entire group on this thread a specific stage four thread. That a stage four steam room should be made? That was very hurtful, and I can't imagine only to myself. There are many titles. My husband. My love , my life, my family,my cancer. So basically anything goes. Except in my Mind insults. Wether it be a group like us (stage four) or an individual. I totally agree about posting possibly Being misunderstood and body language as well. I would never bash a newbie. For goodness sakes. I was one at one point. I don't want to police anything I want people to love on each other as we do here. Never ever had anyone came here and suggested that we don't fit in on a non sectioned platform. That maybe a stage four anything should be created and we shouldn't post there? That to me is really sad. It certainly hurt me.
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I only read a bit of the last few posts and I do not know anything about an anger thread but my stomach turns when I see anger here. I gather there is a place for that?
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Micmel it hurt me too and I didn’t even know anything about what was going on elsewhere.
Marianelizabeth There’s anger and then there’s angry behavior like that very hurtful post. I’m with you. Keep it outta here. Big love coming your way.
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anyhoo! I have an ibrance headache. My mouth gets so sore when I take it. 35 months. It never stops hurting now. Tanya? You’re on ibrance. Do you feel that way too? Philly? Anyone ?
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Booboo have a good trip to GA and good luck on the move.
Moomala, I hope that you can learn to banish those thoughts that somehow you personally failed on the I/L treatment. There's no way that's a rational thought. This disease doesn't work that way in that somehow you did something wrong. Please try to frame the situation in a way other than you are at fault. It’s simply untrue. If one of your loved ones had something similar happen to them where medicine did not help their illness, I know you would not blame THEM. So why do it to yourself? This is a time for you to practice extreme self care. Re: envy, I really understand the envy towards others living their seemingly happy go lucky lives as I feel that at times also.
Candy, the not working thing takes time to adjust to and that's normal. I hope you can learn to care less of the opinions of others who want you to live *your life on *their terms. As an adult you can do whatever the flip you please. If you want to stay inside a gambling joint all day and pilfer your money away, it's your choice! I use that example because there are so many outrageous ways people use their time and going on disability and learning to live at a slower pace is not outrageous at all! Cut yourself some slack. Everyday.
To all of you who've offered insight and advice for dh and the potential job, I've taken notes and will give your ideas to dh. I really appreciate all the help!
About the steam room thing....I don't know what’s going on but am sure it will be worked out.
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Hmmm.
Edited to add: I removed this post under my own willpower. No one asked me to.
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i love you all just the way you are. We are all different and that is for a reason. Therefore, no one ever sees things the same and that's ok. Girl... I have a booty oh yes I do. Can't help it, I could tape my mouth shut and it wouldn't help one bit. My bff was here on Wednesday visiting me, she has just lost 15 lbs. I almost cried. That won't be happening for me either. It really does suck. People
Don't realize how words can cut sometimes!
Divine~ how is the porch my sweet friend ?
Moomala~ I am sending you loving hugs. I always worry about how I failed to not get cancer. We question everything. Getting sick changes everything!!
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Micmel - I know this is not my thread but I read the posts on the ranting thread. I am so sorry that some of you were hurt - it was insensitive to say the least. I did want to tell you ladies how awed I am by your strength, endurance and passion for life. A short story - my best friend had breast cancer when I met her in college - there was only one empty seat in the whole cafeteria and I asked her if I could sit there. She looked straight at me and said I have cancer - my answer was does it need its own chair - she said no so I sat down and we became best friends. She got mets and her favourite game was scrabble with topic of disease and dying(we were in nursing school together and enjoyed our somewhat dark humour), also we would do sex words only scrabble (cause we were also a tad naughty). We were friends for 10 years. She was the strongest and most beautiful person I have ever known. I miss her. I lurk on this board every so often because so many of you remind me of her. Please don't be hurt. I always believed that a planned exit made everything more bearable. By the way I loved the coffee joke.
Micmel as an aside with your sore mouth will your mo let you due colloid silver mouth washes. It works wonders on mouth cankers and sore gums.
Ladies I wish you all only good things.
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Giddy~💗 that means more to me than you can ever know. I'm trying to make a place for everyone. I have friends that aren't stage four. I don't avoid them. I love them. I really appreciate that post at this time especially. I honestly try to pour my heart out and honestly wouldn't hurt a fly.. much much love ~M~
This thread belong to all of us who battle!
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You ladies are the absolute best. Giddy - that was an awesome post. I am raising a glass to your beautiful friend. I hope she somehow led you here to connect with people who reminded you of her.
Divine and Micmel I feel so much better after writing about feeling like a failure. I must have needed to write it to people who get it.
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Thank you lovelies - I had my surgery at the end of April and am almost finished rads. And yes I think my friend led me here so I would have the support she would have given me. Moomala don't you dare think of yourself as a failure. Cancer is an insidious A-H but is also an equal opportunity A-H no one does anything to get it but damn we all want to get rid of it.
Micmel I am not as good a person as you - there is a fly in my kitchen driving me nuts so I am about to grab the fly swatter. I will think of it as exercise.
Love to all
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I probably shouldn't post in this thread because I don't have a husband ... Sorry just kidding.
I don't post often, but I had to go in to say that since entering bcc I have known wonderful women who have supported me, understood me, advised me, accepted me ... like family. Those women are not a number in their signatures... It's incredible that this ugly disease can make us feel sisters even if we are on the other side of the world. I appreciate the love received from all of you. And I love all of you
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Yndorian~Honey~we love you too! You already know how I feel about you because we've talked about it. You're a warm beautiful woman. The reason I made the title so open in this thread is because everyone loves, wether it's a child , or a mother , father, etc... everyone has a life. Which is so important to me. Everyone, here at least has their own cancer battle and this place is for everyone. Thank you for sharing your love. Because we love you too! 🥰💞💗🌹
I love the pic!!!!!! 💗💗💗💗💗
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Giddyup~I love knowing you read. I love knowing that you befriended someone Like me and loved her unconditionally. That’s all anyone in this lifetime could ask for. It seems like you’re an exceptional person. It is my pleasure to have you here.
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I know, that is why I can kidding about that 😘
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GiddyupGirl I have a very dear friend with stage 4 lung cancer, and she too refers to cancer cells as "those little assholes."
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I could get used to adopting that term lol on many fronts. For I encounter many little assholes daily lol. Scars. Aches pains. Sores. We all know. Yuck.
Santa~ I'm sooo sorry about your friend. I'm sending thoughts of love and strength for you both.
Yndorian~🥰🍭 you’re such a pleasure
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Thank you Micmel. She has the EFGR mutation, and is doing very well on Tagrisso. It was literally approved the month before they put her on it. I am so lucky to have a friend like her... We hit it off instantly when we met and I adore her. She even came to take care of me for one of my chemos (since I am single w grown kids).... We've been friends for 40 years. When I was diagnosed, her advice to me was: "keep your mind firmly on your purpose for being alive."
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Moomala~I also wanted to mention that when you first go on ibrance it can take up to six months to really see any benefit and or stabilization of your condition. I have known people at my oncology office that saw great results as far into it as 8 months. Reductions. Good results. I’ve been on it for 34 starting 35 soon, it took time for me. And it took a little for me to see results and I have been NEAD for 3 years now. Don’t give up. I believe that’s why your one is staying the course with the ibrance and letrozole. Hugs beautiful friend!
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sounds like someone we all need in our lives.
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Santa - I too am very sorry for you and your friend. When you have a friend that close when they hurt you hurt. I am glad she is doing well on her treatment. I remember my friend was in hospital for chemo and they gave her marijuana for nausea - the phone was ringing and she asked which one (she saw three) and I told her it was always the middle one. We laughed for years over that one. I hope with all my heart that you and your friend have many moments to laugh over and and lots of time for that laughter.
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Giddyupgirl~I believe that medical Marijuana use just isn't for everyone. But the properties of cbd oil sometimes for pain relief can be tremendously helpful. No one needs to be hallucinating that's for sure.i hope she has someone guiding her through her useage, tha could be scary. She sounds like someone we all would love to hang out with, and so do you!
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Hello dear lovely friends. sisters and brothers and all those who flow in between!
Micmel - I get a bad mouth sore about every 3 weeks? Towards the end of my cycle is when they seem to love to pop up and out to the surface. I am in the clear of any right now as I am in mid-Ibrance cycle and trying to figure out how many now? Let's see you are at cycle 35 and you started in November 2016? I started in April 2017...so I must be at about cycle 30??? I actually can't seem to keep track anymore...I was very nervous around cycle 24 because that was the median mark...and here I am six cycles or so later...so pumping along.
I don't know what the solution is for the mouth sores, except I use the magic mouthwash and that helps it hurt less. Seems like they have to run their course, unfortunately. I wish I had some amazing recipe to heal them more quickly. I am all ears if anyone does!
love and hugs to everyone on this absolutely gorgeous August summer's night!
Philly
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Hi,
Someone mentioned they take L-lysine on another thread for mouth sores. I have been taking it for several weeks and so far so good. This would be the first cycle without mouth sores. I have one more week until my cycle ends, I'm hoping this works.
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I don't know if the sores caused by oral chemo are the same as those caused by AC, but I did very well with lysine, I had no sores. I have heard that borax's honey also serves. You mix some honey with a pinch of borax ( it called 2mule team or something like that) and put it on the sore. That works great with herpetic sores. I hope you have relief soon
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Micmel-darlin I am dangerous to hang out with. I snuck into a friend's hospital room one night (she was in cause her blood counts were low) with a couple of friends a pizza and beer. (to be fair pizza has protein and red blood cells are made from protein). Now ladies if I could just figure out how to get you to my place we could party. I have a place on my farm that can sleep ten to fourteen people and I have enough horses for everyone. Now that would be a party. You are all amazing. Sleep well and be blessed.
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Mel I read on ibrance thread that some use a magic mouthwash. I have some mouth sores but not too bad.
Hope everyone had a good weekend.
Tanya
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