My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Mara,
God bless you, sweetheart. You are doing everything you can to stay independent, and I am so like you. I don’t want others to help me until I cannot do it. So I will fight like you are to do what you can, while you can. You are an inspiration.
0 -
Donnabelle, good on you doing the 4 rounds of AC before the summer. Glad you got to enjoy the summer.
AC was my first treatment back in 2015. I did OK on it but that was because the steroids gave energy to keep riding my stationary bike at the time. Just could not handle coming off the steroids for that day. Had to be in bed. I was still even working at that time.
0 -
Hi ladies. Thanks for the pocket duty today. I slept through the scan so I missed the treats. Oh but it was worth it. I am NED!
0 -
Simone~congrats!!!!!! That’s awesome news. Happy dancing. 😜🥰
0 -
Thanks Micmel!
0 -
Hi, this seems to be like the living room for the Stage IV community.so hope nobody minds if I drop in and just kind off offload as I am having a really hard time and feeling very sorry for myself. I'm divorced and so live alone. I got my original Stage IV DX in Jan 2016. I had a lump around my sternum which turned out to be mets in lymph nodes under sternum and there was a spot on my lung. Hopes were high for me with first MO talking about "killing it off". Started on Femara and cancer was still growing so started IBRANCE which lasted about a year. Been on the usual TX for ER+/PR+/HER2- but I appeared to not respond to the AAs. Last December visited RO to see about radiatng/killing off the two areas. He said not good to radiate an area where I had previously received when I had my lumpectomy but ordered a PET scan including head and to my horror they found brain mets. MRI revealed six meets and I had SRS radiation in January which was easy. Then MRI in June revealed showed one met still growing and that's when things went siideways. Firstly I was prescribed a large dose of Dex steroids and I could only get about two hours of sleep a night. Then there were various delays wth the cancer center getting prepped and completing radiation including where they closed to do some machine upgrade so to make a long story painful I was about two months on the steroids. My appeals to address the insomnia fell on deaf ears. I was going crazy with the lack of sleep fell on deaf ears and my face swelled up to where I was unrecognizable. I was on them for two months! I felt too bad to go anywhere and stayed home and my friends are just busy with their lives with three of them back at college with full time jobs. During that time I was off my Xeloda. Ii finally switched facilities and got medication to help me sleep and they got me weaned off the steroids. But my GI system was harmed by them and I have been too ill to resume my Xeloda. Finally started today. I was always a great sleeper and it was my saving grace and even with medication and two months off the steroids I can't get the amount of sleep I need so I have no energy and am completely cut off. I made plans a few times but often feel so bad when I'm out that I'm afraid to commit to anything and so I live lirfe alone. I have one son 25 who lives out of state and is estranged from his dad and my only other family (brothers) live in Ireland. I am so weary with this disease and so upset that that RO put me through hell this summer and I have not recovered and it was so unnecessary. I found out that steroid dose is arbitrary and my new RO says he likes to keep to a min and increase until the patient is symptom free and I had no symptoms to begin with. He was shocked at how much and how long I waas on them. My counselor said I have PTSD because I have panic attacks when I think back on that time. I have anxiety every night going to bed or when I think about eating. My son has had depression and has friends but I'm the only family he has in the country as his father was also from Ireland. He's the only reason I go on but it's so hard to find the will to keep going. This week I started Xeloda this morning and had a brain MRI. Mid week I have CT scan on my body. I'm scared because I was off treatment for three months. Thursday I have appt with the new RO. I just feel it's too much to handle
Sorry for being so depressing in this generally positive thread but I wasn't sure where else I could express my feelings. Hugs to all. 0 -
Dorimak~Never feel sorry for sharing what you need to get out. Part of this thread is sharing and being picked up by people who understand and have the same worries and fears you do. I have also been on a tx break. I am going to start my ibrance back up again. It seems like every time I'm ready to do so, something else comes along and slows it down. This time a kidney stone. You're not alone, we are here. Always, we build real relationships and some of us even have talked on the phone, to offer support. I feel like if you keep it off your chest and keep sharing with us here, you'll feel a lot better knowing that no matter what you have a place to go. We share the tests, by jumping into each other's pockets as if we were all walking hand in hand for another of us to scan yet again. I know the stress from being off tx, but I am becoming more alive. More awake. I'm cleaning again and bend more productive. I like that me better, it just proves these tx we are forced to take, suck the energy right out of us. You may live alone. But you definitely have us around. I'm so sorry that again this disease and these cellular assholes are bugging another good woman. Makes me so mad. I worry about every aches and pain. And I'm convinced at times there are lumps , when there aren't. Drives me batty! One day at time or even one post at a time. Hugs to you dear woman. Much love ~M~
0 -
Dorimak~Never feel sorry for sharing what you need to get out. Part of this thread is sharing and being picked up by people who understand and have the same worries and fears you do. I have also been on a tx break. I am going to start my ibrance back up again. It seems like every time I'm ready to do so, something else comes along and slows it down. This time a kidney stone. You’re not alone, we are here. Always, we build real relationships and some of us even have talked on the phone, to offer support. I feel like if you keep it off your chest and keep sharing with us here, you’ll feel a lot better knowing that no matter what you have a place to go. We share the tests, by jumping into each other’s pockets as if we were al l walking hand in hand for another of us to scan yet again. I know the stress from being off tx, but I also and becoming more alive. More awake. I’m cleaning again and bend more productive. I like that me better, it just proves these tx we are forced to take, suck the energy right out of us. You may live alone. But you definitely have us around. I’m so sorry that again this disease and these cellular assholes are bugging another good woman. Makes me so mad. I worry about every aches and pain. And I’m convinced at times there are lumps , when there aren’t. Drives me batty! One day at time or even one post at a time. Hugs to you dear woman. Much love ~M~
0 -
Haven’t seen Skitzbitz around either... ElleOnwheels either....Marie... sandibeaches.... jensgothis.....
Waving hello to Bella! And movingsoccermom, masonsma,
GP~😘
0 -
Dorimak,
I echo what Micmel wrote. We are a family of people who love each other through scans, treatment changes, family issues, and everything in between. You are not alone. You have found your new "family" right here. This is a place where we laugh together, cry together, and simply support each other always. So please come back often and you will soon find yourself smiling at all of the wonderful new friends who share the same disease. We are here for you!
0 -
Hi to all!!
As we have posted in other Stage IV topics too, this is just a gentle reminder that this thread belongs to the Stage IV/Metastatic Breast Cancer ONLY forum, so we do ask that those not diagnosed with stage IV breast cancer respect the reserved nature of this forum.
If you have not been diagnosed but have questions about Stage IV Breast Cancer, you can certainly post in the following threads:
If you are not Stage IV but have questions you may post here'
Not diagnosed with a Recurrence or Metastases but concerned
If you are a caregiver or family member with a stage IV diagnosis, there is also a forum entitled: For family and Caregiver's with Stage IV.
Thank you for understanding!
The Mods
0 -
Dear Micmel, I don't usually post here often, but I love you all very much. The mods have kindly suggested to me (by PM) that I no longer publish in this thread because I'm not in IV stage (Who can know that for sure, right?) So, this is my last post. POCKET DUTY AND LOVE FOR YOU AND FOR ALL THE FRIENDS HERE, EVERLASTING! ❤❤❤❤❤❤❤❤
0 -
yeah not really liking that posting there. I love all of my sisters and now I’m starting to see why someone I care deeply about hasn’t been around who isn't stage four either. That to me is restrictive. If I created this thread am I not allowed to extend invites to the people we all care about ?
MODS????????
0 -
oh, don't go Sonia. You either Runor or Santa.
0 -
🤯🤯🤯🤯🤯🤯🤯
0 -
Simone, amazing news on getting to NED.
I also think if a person creates a family in thread and they welcome all stages, they should be allowed.
Mods don't cut off other people who have been welcomed by us. They are part of our family.
I hope all stages keep coming.
0 -
maybe I could ask to change the status from stage four to another type if that’s possible. Because that isn’t ok.
0 -
Micmel,
I think that moving the thread off the Stage 4 forum is a good idea. It is obvious that women of all stages are attracted to this thread so why not move it to one of the many places on BCO where people of any stage can post? I appreciate the Moderators' position that the Stage 4 forum should be for Stage 4 people only. Hope I am not being rude, but as a Stage 4 person, I sometimes do not want to hear the opinion of someone who hasn't been in my shoes on how I should be dealing with my cancer.
0 -
I will see if that is an option. Being honest is always the best thing! I respect your opinions and I know the mods have rules. I asked them if it was an option. I guess I’ll see. thank you for sharing how you feel. It’s important to me.
0 -
Wow, I’m pages behind and sorry if I missed stuff, I just skimmed. The concerts were awesome! More on that later, getting ready to board my flight home. Here’s a pic of me and BFF, we’re still big kids, lol
oh micmel, I did drink fluids, vodka & lemonade 😆
0 -
I feel like moving the thread opens us up to a lot of interference from those who don't grasp the stage iv challenges we go through. It has seemed lately that numerous threads started in the stage iv forum have been getting posts from lesser stage members. I agree with Chicagoan that the stage iv forum should remain for stage iv members. I feel like she does when she says, “I sometimes do not want to hear the opinion of someone who hasn't been in my shoes on how I should be dealing with cancer.“
0 -
I don't know if the complain is specifically about me, but I understand, and I apologize if it bothered anyone. The moderators have given me permission to continue publishing here but I won't. I want to respect your will. I will continue reading you, and having you in my thoughts. BIG HUGS LADIES
0 -
This is a tough one for me honestly. I adore my sisters period!! I respect your opinions and I love each and everyone of you. My heart tugs because this thread covers so much territory, that I never minded others who weren't stage four posting. Families, everyone has, love, everyone has. Some of these sweet wonderful ladies are my close friends. (Yndorian, Runor, Bella, etc) I completely understand the rules that BCO has, I don't know if I want this thread to move homes. It would be moved to a support type of category. I never policed this thread. Before, I didn't realize it was bothering some of you and I apologize for that. I understand everyone has their way of feeling and I know I mus abide by BCO's rules. I'm just not sure, if it's all stage four threads, or just ours ? I really would like to know that. Because if that is the case, I would have liked to have thought that, someone could approach me first before reaching out to the mods, so we could discuss it. Like we do everything else here. That's all I could ever ask for.
Much love ~M~
0 -
oh and Mae~ you look so pretty. Green is your color girl! Hello to BFF!! 🥰♥️
0 -
I'm looking for the navalbine board/thread/list. Link, anyone?
*If* I get past this new round of taxol, he says Xeloda or Navalbine. It's easy to find Xeloda info. I've been following that list for a while. Can't find Navalbine, although I think I remember our dear Lynne (Man) on it?
0 -
https://community.breastcancer.org/forum/8/topics/790520?page=15#top
This is what I came up with darling. ❤️
0 -
If moving the thread means everyone would still post AND we don't lose all the earlier posts from before, that could work.
Mods, if that is possible let Mel know. I don't want to lose the voices of yondarian runor and others. I can also see the point of view of Stage 4 people too.
0 -
Micmel, the Mods posted the same “gentle reminder" on several other stage iv threads that I read. So I cannot say this thread was singled out, or if someone reported something in another thread, or if the Mods were just doing their jobs by monitoring the threads and decided they needed to insert a reminder. I know on one of the other stage iv threads, someone who was a continual poster was asked by another when she became stage iv and the answer was that she wasn't. Perhaps the Mods picked up on that. Its been about three or four years since I messaged the Mods and that was to thank them for something. And one time I asked if there was technical trouble on the site. If I have a beef, I just call a person out. Like recently, the woman who claimed to have cured herself of bc in six months. I started challenging her. Then, ilimae found some bizarre post on the woman’s blog about aliens messing with her tv!
0 -
Thank you Divine, I just want to keep
Our home safe and sound. I care about how you feel. Thank you for your honesty!0 -
My opinion on the matter---
Sometimes I don't even notice who is not Stage 4 - runor or yndorian. I just read their posts.
But I do understand the thought that Stage 4 is different. We see things differently, in a different light. We are on continuous treatments and told "incurable". We qualify for Disability based on that Staging. We will never ring the bell signifying the end to treatment. We are told to get our affairs in order. We are offered Palliative Care. Etc. Etc. Things that early stagers are not dealing with.
Micmel- You created this Thread and I think it should be up to you on how it is labeled. I love the ladies here - runor and yndorian included.
But it is nice to have a Thread just for Stage 4 because we truly understand what we all are going thru.
0
