My Husband, My Life, My Love, My Family, My Cancer
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I can say Amen to that. In dealing with this for almost 4 years. 3 year 7 months of hell. This place is my healing place. ( as I self combust from a heat flash) ughhh I hope we all sleep well. I Love sleep. Lately Ive been such a night owl ! So odd how things. Ok basically everything has changed since. Night night!
I wanted to mention since we hit 10k posts. Lynnwood has also been extremely important to this thread as Well.
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HI everyone, Micmel, I missed a day so must have missed those posts. Never mind, takes all sorts of,people to make a world.
On seasons here in Spain, I am very much looking forward to Autumn, the trees will lose their leaves even though the temperature will still be 70. However in winter we normally have warm days, but cold nights, so need our duvets and heat in the house. There is a ski resort about 3 hours drive from here on the coast. Northern Spain can be quite cold. So there you are, a brief weather report.
Keep up the good work here Micmel, a lot of posts provide so much information for fellow stage 4s. Most of us are women living the best we can, enjoying every day, love to all!! Lov
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Ok, to get some of this straight, someone from another thread thinks stage iv women may be fragile and perhaps suicidal? If that’s what someone thinks, it is incredibly cruel, exceedingly insensitive and outrageously incendiary.
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luckily it was caught in time and it was removed. But I didn't want anyone to read that and feel like I did. We have enough going on. Our thread will not be interrupted. You are all too important to me. I adore you all.
Minnie~I love the sound of the duvet covers. Comfort at its best. Snuggle snuggle. Have a few errands to run. But. I also have a nap to have lol.
Love you ladies
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Love and hugs to you, my dear Mel. Trust me, moving to FL in the summer was not my idea. My DH loves warm weather, and I can’t handle it. So I’m indoors a lot. But come December and January, I’m hoping I will like it more
. I hope you do get together with the girls who are nearby. I am hoping to meet up with Tanya at some point0 -
GM everyone. They are still discussing it on the other thread. I have to say I don't think I'll ever post on that thread, too many rude people. We have enough to deal with and don't need all the negativity from those women.
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Simone~ I guess people can't let it go. I mean seriously enough. I am in total agreement with you. My days of posting there are over as well. I find suggesting a stage four steam room only offensive. I guess I am feeling wrong. But wow. There is a place to discuss death and dying issues specifically on a thread created. I don't know what more to do, to keep that way from here. (I don't mean our ability to speak openly here about whatever we want, I'm referring to the main issue over there at hand!) Im not going to post there at all, because again someone is suggesting that be the case, when never since I have been on BCO been treated so badly. Just because I am stage four and speak honest feelings. So I'm done. Ugh!
Edited I needed to state the obviousness over there is upsetting or people don't really read and comprehend! Apparently stage four women don't even post over there, did you guys know that? because the last 5 out of 7 posters were stage four. I looked It's so sad!
I'll try to behave. But I'm offended. Only by the suggestion of a separate stage four steam room. How that came up with someone posting a suicide line and was tied into together,is what really puzzles me. Then to come here on a designated stage four platform and suggest to us. We do this ? I find that mind blowing. Am I alone???. Because if I am. I may be loosing my mind here!
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Yes, I was offended too. We just have to push those people aside.
I have a busy day today. Going to the acupuncturist this morning, which I love. I have been going to her for a couple of weeks to help with fatigue. I have to say I felt like the energizer bunny yesterday. I got so much done.
Off to PT this afternoon.
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Simone ~What kind of batteries do you use. I could use some Wonderful energy. I’m glad something that relates to your treatment helps you. Sometimes we arenleft begging for relief. It’s a sad world with this opioid problem. Good people who truly need medication for cancer pain are starting to have a hard time getting it. I don’t think that is a good thing for us all at all. Yikes !
Enjoy your day lovely !
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Thanks Micmel. Also thanks for hosting this thread. I don't post a lot but do enjoy reading everyones post on this thread. It's nice to talk to others who have the same problems.
Enjoy your day too!
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Micmel, I sent Mods a private message that I don't want it separated between early stage and stage IV people. They have no intention of doing so.
Simone, I do agree that people are far more rude than even a couple of months ago. I don't know why that other topic can't die. People there should let it go and stop posting. Move on to something else and stop talking about the whole thing.
If stressed I will still spew over there but I am unwilling to continue beating a dead topic over and over and over. It's stupid. We come here for support, not schoolyard bullying. I deleted what I said because I am sick of it.
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Hey booboo1 just caught your post. Thanks I love meeting people. My life philosophy has always been don't try to change me cause I won't try to change you. Everyone I've met here are some of the toughest women I have ever met. Please send booboo1 stories you can pm them to me if you're shy about a public post - no judgement from me and have a number of special events in my life too. Sorta like when I was mowing the front lawn on mother's day. My husband insisted I wear pants (but I hadn't done laundry so I borrowed a pair of his). A very nice gentleman walked by stopped to say hello I turned to greet him and my pants fell all the way to the ground. I smiled pulled up the pants and hoped I would never see him again.
Life is full of unexpected moments - hope for all of you the unexpected moments are full of love and laughter.
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Oh lord Giddy that's pretty funny! Aaaand it's happened to me - not in public but in front of my piano students. Once in my piano studio my pants just had a complete mind of their own for some reason. I never wore those again.
Another incident had me throwing on a pair of pants I'd worn the day before but I forgot to make sure the day before's undies we cleared out of the pant leg and yup - they fell out on top of my shoe in the piano studio right in front of a student.
Red-faced.
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lmfao. You’re both adorable.
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Hi all. I just want to chime in that I was confused by "the discussion" and deleted post by the Mods, too, but, Mel, I appreciate you explaining it and being proactive in having the post removed. I agree that anybody who thinks we Stage IV are "fragile" needs to think again! There is a difference between ranting and just being plain rude and that sounds like what's happening over in the steam room. Thanks again for the update on Chelle and letting her know I'm thinking of her.
I'm feeling grateful today that I am here for my DD's 20th birthday. She was 16 when I was dx, so we're celebrating another year with dinner and a Rockies game tonight. Love to you all, but especially you, Mel, as we all continue to live our best life.
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Bliss~Thank you..... I don't want bad vibes here ever. So I just wanted to try my best to preserve the goodness here that took us years to build. I genuinely care for our lives. So thank you all for bearing with me while this was being ironed out. I told Chelle hello and she says hello right back my friend!!! And hopes you're doing well.
Happy Birthday to your DD. What a wonderful thing to celebrate 🎉 🥂🥂🥂🥂🎉🥰
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I lost a lot of weight since my diagnosis. I have not replaced my old running pants... my mother's dog jumped on me at street and brought my pants to the floor! 🤣🤣🤣
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Micmel, thanks for your kind words towards me! I’m still here, reading almost every day but not posting too much. Been a rough summer, one family member had. Pulmonary Embolism while on an airplane and literally had her heart stop. Thanks to an angel on Earth, a nurse was sitting next to her and initiated CPR. An emergency landing was done in Canada and she was hospitalized but is now on her way to recovery. My husband lost his father and our niece lost her 1 year old baby. Difficult family dynamics and death do not mix well and tend to bring up past hurts and resentments. I’m still trying to deal with my mom who has absolutely no short term memory at 82. Neurological appointment and testing are pending. I know from reading that many have had some setbacks in their health and progression as well. I have been hesitant to post that I am doing well on Xeloda. My first 3 month scan shows complete resolution of the active cancer that popped up in April and I am currently NEAD. After a few dose reductions I am tolerating X much better with fatigue being my biggest issue. Sending love and hugs to all, I think of you all daily and pray for all of us. ❤️
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LOL that’s adorable. Just like you are! At least you look good. Lol
I could stand to loose some poundage..... oh yes I could!
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Good afternoon all,
Went to brunch yesterday with my daughter granddaughter a few friends then a movie in the evening. I intend to chill all the way out today!
Mel and other Ibrance folks I take 100mg. My se's vary from month to month the most common monster is fatigue. I started at 125 and after a few months I requested 100 bc my quality of life was zombie like. Napping all the time and sitting sitting sitting, so tired. The 100 still has me fatigued but QOL improved greatly. i switched to 75 for a couple of months and had similar se's to 100 so i went back to 100. I usually feel the tiredness by the end of the cycle and into the 7 days off. I hope this is helpful for a comparison. My hair thinning was more in the beginning and leveled off. Neuropathy hot flashes and other se's are constant companions.
Boo Boo I'd love to meet. Please DM me. I have Onc appt tomorrow at Fl specialists. I think I remember you saying you were going to start seeing a Dr. there.
Mae I was once Stage III, so there's always the horrible possibility that those people talking about us on the other thread could have progression and end up in this predicament. It's a dangerous thing to wag a tongue at us from a high horse that no one can control really. Eating popcorn and watching the tennis match is hilarious. I went to the other thread to see what was going on and I'm glad it's over. Well, over for me.
Sandi B 60% is a good estimate of how you used to be. I still keep trying to do as much as possible. I always think, just get in the car when you get to the destination, activity, etc. I'll just do what I can do. My back pain prevents me from doing as much walking. A nurse once told me to take the medication to be active through the pain. I went to a wedding last Sunday and took meds before and was able to dance, dance, dance. The next day and 1/2 was spent in the bed lol. I loved to bike ride but my doctor told me not to get on a bike anymore too much danger of falling and injury. I found that I can swim with little or no problems except fatigue. Keep up the good work.
Grannax cleaning/mopping/vacuuming kills me (my back). An overflow cleanup is hard work. You have GRIT!!!! Enjoy your grandchildren for the next few days and always.
Rosie the B&B is cute and cozy. It looks like a great place to come back to after a day of walking and exploration.
Divine wow those were small quarters that you shared with 9 people. I had my five kids and husband and 3 bedrooms1 bathroom for 26 years!!!! I have a tendency to be anemic and was told that the anemia was the cause for the dizziness, rapid heart beat etc. On the Ibrance thread someone posted an article about how chemo affects our heart as well. Of course we know it affects everything.
Long post on a hot rainy day in FL.
Tanya
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Micmel, you are like a mama bear protecting your young on this thread. I wouldn’t be surprised if your PM inbox was blowing up with all sorts of questions. Try not to take the attack here personally. Usually when people are nasty, engage in bullying or seek to marginalize a group of people, it is more about their own issues than anything anyone else has done. Now, Mae, if you have any popcorn left, please pass it my direction. Snack time
Tanya and Boo Boo, I have family in your area. If I am ever there when I have extra time on my hands, it would be great to meet up. Often my visits are short and packed with plans.
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Congrats on NEAD Lynnwood 🎉🥂🥳
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Lynnwood we all dearly LOVE to hear about NEAD. Post it in bold letters. So happy for you.
Tanya. Thank God I don't have bone mets, otherwise I would not have been able to do all the wet vacuum, mop up, move furniture etc. Bone Mets are so painful. I've had one before, I know.
I had a super fun 24 hours with my grandchildren. Smiled or laughed the whole time, except when slept like an exhausted Granna. 💞
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Lynnwood,
Congrats on NEAD!
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Lynnwood~🥰😀😇💗🙇♀️ I am smiling so big. I can’t even tell you. Go madame X! I am deeply sorry however for your losses. It just seems to never end the sorrow we are forced to endure. Health and grief mixed with grief of a family loss. Tackle us at our knees. Give me an N E A D! Atta girl! 💙
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Thanks for the update Lynwood! Congrats on the NEAD. I needed to hear some news that offers hope. I'm still waiting to hear whether I qualify for BYlieve clinical trial. If Not then it's on to afinitor and when that fails then madame X. It feels like i’m Chewing through drugs which is a bit crazy making.
I so agree with Mae's comment/response to our being “too fragile". Really?! I Don't follow a lot of other ranting chatty boards, I just don't have time for them. So Mel, congrats on 10k; I think you do a terrific job of creating a community. Doesn't mean we all agree with each other but it feels like a safe place to be. I hope runor is lurking, I miss your wisdom.
Marienelizabeth, I hope your hospice visit goes well. You’re in my thoughts and it feels like we need to be in your pockets while you wait for a bed and some answers for a way forward with far less pain.
Be well,
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This is my latest teapot...it’s a seriously big honking thing that would probably win in the ugly category. I had fun making It and played with some new glaze combos so good learning. Some of ,y other testers are on the right side and turned out far nicer.
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Lynnwood sorry for your losses. Congratulations Lynnwood on your NEAD!!!!?!!!?!&$!!!!!?!
JKL I know how visiting family can be.
Just let me know.
Tanya
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Pots~I love it! It's original and you enjoyed doing it! I know how I felt when I decorated for my daughters wedding and how useful I honestly felt . The colors are awesome! 🥂to you!
Today my very best friend came over to visit. She walked into my house and collapsed into my arms and cried for twenty mins. When she composed herself, she told me what had happened ::
Her and her son decided that since it was nice outside they would take their dog for a nice walk at the dog park. So they went and had a great time. They get home and are busy with packages and water bottles etc... well, she thought her son took the dog inside the house with him . He thought she took the dog inside with her. Three and a half hours later she had an appointment and got into her vehicle. She said she smelled urine. Then it clicked. The dog was foamed at the mouth and not breathing😞. They grabbed the the hose and tried to bring the body temp up. The dog started to breathe. She panted for four hours but made it. I've never seen her so upset. She felt so terrible. She said she almost fainted at the thought of a child. Even though she loves her dog like a daughter. Scared was not the word.
Poor pets , poor young babies. Gotta be aware always. She was having a bad day already to begin with and this just made it totally worse. Just shows things happen so quickly!! Much love ~M~
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Micmel, so scary for your friend. Glad the dog is okay. I use Waze to show me the fastest way to get to and from work each day - based on traffic and other slowdowns. I like that Waze has a reminder once one reaches one's destination to make sure no child is left in the car. However, it only works when using the navigation feature.
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